Lords Chamber
Friday 16th January 2026
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10:07
Lord Moynihan (Conservative)
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Lord Moynihan (Conservative)
Payment Payment when Payment when on Payment when on matchdays Payment when on matchdays the purchase is made aware of what turnstile to go to with the facsimile and which member of staff to speak to to allow entry with a master access card or override button on the turnstile to allow the purchaser illegal entry into the stadium. My Lords, this is a growing problem. I hope both cases will be considered by the Home Office and addressed in legislation, not least on secondary ticketing, which hopefully will come before the House in the next session.
In the meantime, my Lords, I wish the noble Lord well and thank him for all his work on this Bill, in the hope that by avoiding any further protracted debates, the Bill may reach the statute book in this session.
In the meantime, my Lords, I wish the noble Lord well and thank him for all his work on this Bill, in the hope that by avoiding any further protracted debates, the Bill may reach the statute book in this session.
10:08
Lord Parkinson of Whitley Bay (Conservative)
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Lord Parkinson of Whitley Bay (Conservative)
My Lords, the noble Lord Lord Brennan of Canton should be very Brennan of Canton should be very proud. I don't think there can be many people who've introduced the same bill in consecutive sessions, in two different parliaments, in in two different parliaments, in two different houses, with support from two different governments. So we thank him very much for his part in ushering these provisions onto the statute book. They flow from the review led by the noble Baroness Casey of Blackstock that was commissioned by the Football Association into the events at Wembley in 2021, at the euros final, and the sensible recommendations of the culture, Media and Sport Committee, of which I think the noble Lord was a member in another place in the last Parliament.
The previous government supported these provisions before the general election, and these benches are happy to reiterate our support today. I'm glad that extends to my noble friend Lord Moynihan, who is the author of the Parent Act that the noble Lords Bill amends as noble Lords know who followed our other debates on football. This is an area of public policy that usually passes me by. I've only ever been to one football match in my life, authorised or otherwise. I can't remember who won it.
But I am looking forward this evening to seeing a play, Gerry and Sewell, which follows the adventures of two likely lads from Gateshead trying to obtain season tickets to see Newcastle United. It began in an art space above a fried chicken shop in Whitley Bay, and is playing the West End for the next two weeks, so football. Football touches the hearts of all of us. We are very grateful to the noble Lord for his Bill and wish him a speedy passage to the statute book.
Yeah.
The previous government supported these provisions before the general election, and these benches are happy to reiterate our support today. I'm glad that extends to my noble friend Lord Moynihan, who is the author of the Parent Act that the noble Lords Bill amends as noble Lords know who followed our other debates on football. This is an area of public policy that usually passes me by. I've only ever been to one football match in my life, authorised or otherwise. I can't remember who won it.
But I am looking forward this evening to seeing a play, Gerry and Sewell, which follows the adventures of two likely lads from Gateshead trying to obtain season tickets to see Newcastle United. It began in an art space above a fried chicken shop in Whitley Bay, and is playing the West End for the next two weeks, so football. Football touches the hearts of all of us. We are very grateful to the noble Lord for his Bill and wish him a speedy passage to the statute book.
Yeah.
10:09
Lord Lemos (Labour)
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Lord Lemos (Labour)
My Lord, I thank all the noble Lords for their contribution to Lords for their contribution to this, to this rather lovely debate. In a way, I'm sorry. The noble Lord, Lord Parkinson, can't remember who who won. Probably very diplomatic, and I think particularly Lord Brennan of canton for championing this important measure through both houses and in the way that the noble Lord Parkinson said, it's a it's a really important achievement. I thank also the noble Lord Lord Moynihan, formerly Colin Moynihan, the MP for Lewisham East, where I was one of his constituents.
And despite my heroic campaigning efforts, he kept winning. But today we find ourselves more or less on the same side, and I can confirm that the government has has noted that his observations and we'll think we'll think seriously about them. But I'm glad to be working with my noble friend Lord Moore, my noble friend, my friend, and the noble Lord, Lord, Lord, Lord Moynihan from from our younger days until now. The bill is about this bill is about protecting fans, ensuring that football matches remain safe, welcoming events for all, unauthorised entry, whether by tailgating or forced entry, puts genuine supporters at risk, strain security and undermines matchday experience.
With Euro 2028 matches to be played in England and Wales, we must address these issues now so fans can enjoy world class football in safety and confidence. This bill creates a clear offence for unauthorised entry and empowers courts to impose football. Banning orders. Banning orders are a proven deterrent. They prevent repeat offenders from jeopardising safety and sends a strong message that dangerous or dishonest behaviour will not be tolerated. This is not about punishing honest mistakes. I should make that clear. It safeguards ensures that only those who deliberately flout the rules will be caught.
This is a proportionate, targeted and necessary measure. It reflects the unique public order challenges associated with football, which are not seen to the same extent in other sports or events. The bill is consistent with the broader framework of the Football Offences Act 1991. The Bill has enjoyed cross-party support throughout its passage, and has been welcomed both by the Football Association and the police as a timely and effective response to a growing problem. It is a fan friendly measure that protects the vast majority of decent supporters from the actions of a dangerous minority, and will help ensure that football remains a safe, welcoming environment environment for everybody.
I
**** Possible New Speaker ****
commend it to the House. My Lords, can I thank everyone for their their contributions this for their their contributions this morning and this will be a very brief debate, I hope, and and soon to come to its conclusion. As has to come to its conclusion. As has been said, this is a bill which emerged out of Baroness Casey's review of the events at the euros final on Sunday, the 11th of July, final on Sunday, the 11th of July, 2021, and has has been referred to by Lord Parkinson.
It is a bill that I previously introduced in the House of Commons. Unfortunately, at that point, although it had completed its Committee stage, it fell when the former Prime Minister, Rishi Sunak took a walk in the rain and that was the end of the bill for the time being. But it was picked up subsequently by my colleague Lindsay Farnsworth, MP in the House of Commons, and this slightly amended version of it completed all its common stages. And it's good to be here, having been there at the kick off, to be here hopefully for the final whistle very, very shortly.
The bill's intention, obviously, is to create a deterrent to the sorts of scenes that were witnessed at the euros final by making an unauthorised entry into major football matches a specific offence subject to football banning orders. And I would like to thank like to thank my colleague Lindsay Farnsworth, who did an excellent job in steering the bill through. I'd like to thank all the officials, both from government departments, but also the staff of this House, for their help and advice in giving this bill its passage.
I'd also like to thank all the members of your Lordships' House who attended and contributed to the debates on the bill, in particular Lord Moynihan. I understand from my noble friend Lord Spellar that he was formerly known in his days as a government Minister by Dennis Skinner as the Minister for sport, rather than the Minister as as somebody who is equally vertically vertically challenged. I promise him I'll never use that term in public. I'd also like to thank the Lord Parkinson for his remarks in reminding the public how in touch we all are here in the House of Lords, with his comments on his football knowledge and my and my honourable, my noble friend.
Sorry Lord Lemos, for giving remarks from the front bench and for support on the Bill. My my Lords, I think we can all agree when all said and done, at the end of the day,
**** Possible New Speaker ****
football's the winner. I beg to move. The question. Is that this bill do now pass as
**** Possible New Speaker ****
Is that this bill do now pass as many as that many will say content, not content. The contents have it. not content. The contents have it. Second Reading of the Rare Cancers Bill Baroness Elliott of Whitburn Bay.
**** Possible New Speaker ****
Bay. My Lords, I beg to move that this bill be. Now read a second time. My Lords, it is a great
And despite my heroic campaigning efforts, he kept winning. But today we find ourselves more or less on the same side, and I can confirm that the government has has noted that his observations and we'll think we'll think seriously about them. But I'm glad to be working with my noble friend Lord Moore, my noble friend, my friend, and the noble Lord, Lord, Lord, Lord Moynihan from from our younger days until now. The bill is about this bill is about protecting fans, ensuring that football matches remain safe, welcoming events for all, unauthorised entry, whether by tailgating or forced entry, puts genuine supporters at risk, strain security and undermines matchday experience.
With Euro 2028 matches to be played in England and Wales, we must address these issues now so fans can enjoy world class football in safety and confidence. This bill creates a clear offence for unauthorised entry and empowers courts to impose football. Banning orders. Banning orders are a proven deterrent. They prevent repeat offenders from jeopardising safety and sends a strong message that dangerous or dishonest behaviour will not be tolerated. This is not about punishing honest mistakes. I should make that clear. It safeguards ensures that only those who deliberately flout the rules will be caught.
This is a proportionate, targeted and necessary measure. It reflects the unique public order challenges associated with football, which are not seen to the same extent in other sports or events. The bill is consistent with the broader framework of the Football Offences Act 1991. The Bill has enjoyed cross-party support throughout its passage, and has been welcomed both by the Football Association and the police as a timely and effective response to a growing problem. It is a fan friendly measure that protects the vast majority of decent supporters from the actions of a dangerous minority, and will help ensure that football remains a safe, welcoming environment environment for everybody.
I
**** Possible New Speaker ****
commend it to the House. My Lords, can I thank everyone for their their contributions this for their their contributions this morning and this will be a very brief debate, I hope, and and soon to come to its conclusion. As has to come to its conclusion. As has been said, this is a bill which emerged out of Baroness Casey's review of the events at the euros final on Sunday, the 11th of July, final on Sunday, the 11th of July, 2021, and has has been referred to by Lord Parkinson.
It is a bill that I previously introduced in the House of Commons. Unfortunately, at that point, although it had completed its Committee stage, it fell when the former Prime Minister, Rishi Sunak took a walk in the rain and that was the end of the bill for the time being. But it was picked up subsequently by my colleague Lindsay Farnsworth, MP in the House of Commons, and this slightly amended version of it completed all its common stages. And it's good to be here, having been there at the kick off, to be here hopefully for the final whistle very, very shortly.
The bill's intention, obviously, is to create a deterrent to the sorts of scenes that were witnessed at the euros final by making an unauthorised entry into major football matches a specific offence subject to football banning orders. And I would like to thank like to thank my colleague Lindsay Farnsworth, who did an excellent job in steering the bill through. I'd like to thank all the officials, both from government departments, but also the staff of this House, for their help and advice in giving this bill its passage.
I'd also like to thank all the members of your Lordships' House who attended and contributed to the debates on the bill, in particular Lord Moynihan. I understand from my noble friend Lord Spellar that he was formerly known in his days as a government Minister by Dennis Skinner as the Minister for sport, rather than the Minister as as somebody who is equally vertically vertically challenged. I promise him I'll never use that term in public. I'd also like to thank the Lord Parkinson for his remarks in reminding the public how in touch we all are here in the House of Lords, with his comments on his football knowledge and my and my honourable, my noble friend.
Sorry Lord Lemos, for giving remarks from the front bench and for support on the Bill. My my Lords, I think we can all agree when all said and done, at the end of the day,
**** Possible New Speaker ****
football's the winner. I beg to move. The question. Is that this bill do now pass as
**** Possible New Speaker ****
Is that this bill do now pass as many as that many will say content, not content. The contents have it. not content. The contents have it. Second Reading of the Rare Cancers Bill Baroness Elliott of Whitburn Bay.
**** Possible New Speaker ****
Bay. My Lords, I beg to move that this bill be. Now read a second time. My Lords, it is a great
10:15
Baroness Elliott of Whitburn Bay (Labour)
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Baroness Elliott of Whitburn Bay (Labour)
want to thank Doctor Scott Arthur, the Member of Parliament for Edinburgh South West, who, when drawn number six in the Private drawn number six in the Private Member's Bill ballot in the autumn of 2024, chose this crucially of 2024, chose this crucially important subject for his bill and for the energy he has put in to for the energy he has put in to getting this bill to this point. With the support of his amazing team. When my dear friend Dame Siobhan McDonagh MP asked me if I would meet with Scott with a view to taking this bill through this House, through the House of Lords, I of course, agreed.
That conversation led to me having the privilege of supporting this bill here today. I want to start by setting out the background as to why this bill is necessary and, in my view, why it is urgently needed. The term rare cancers in the terms of this bill mean the cancers that affect less than 1 in 2000 people, according to the UK Rare Diseases Framework. But in many ways I feel the term rare cancers is misleading because they represent 47% of all UK cancer diagnosis, which is 180,000 people a year.
Being diagnosed with one of these rare cancers. However, disproportionately they represent 55% of cancer deaths in the UK every year. And whilst we hear of the many, many amazing breakthroughs in cancer treatment frequently and we welcome all of them that save and extend lives for many people now living with cancer in ways that even a decade ago were not possible, those amazing breakthroughs do not apply to those people being diagnosed with one of these rare cancers, where often treatment and survival rates have not improved for decades.
With so many people dying of these rare cancers every year, something has to be done to improve this situation. The measures in this bill take the first steps to do that. I want to talk a little bit today about why I feel this is so important, and why I wanted to help and support taking this bill through Parliament. I remember the day that Siobhan told me what her sister Margaret had been diagnosed with, and the bleak prognosis she had been given as if it were yesterday.
As many people in this chamber know, someone who is affected by one of these rare cancers and will have had that same experience. I want to talk about a couple of things that have crossed my life to do with rare cancers. 20 years ago, my son went to a new school for his sixth form. One of the teachers was the mother of one of his friends. At that school. There'd be various fundraising events for the charity she had set up for inflammatory breast cancer, which my family would support.
Two years later, my twins went to the same school for sixth form. One day, in walks my 17 year old Georgia and says, I'm going to do a skydive to raise money for Mrs. Cumming's charity. I have to say she needed my permission because she was under 18, but there was no way I couldn't give her that permission. But that was the energy that Mrs. Cummings had amongst her pupils. So a few weeks later, I met the incredible woman that did the the inspirational teacher that was Leonie Cummings.
I spent two days sitting chatting to her whilst waiting for the weather to clear, for my daughter to jump out of a plane, and I knew just why. My children and many others thought the world of Mrs. Cummings. I'd never heard of inflammatory breast cancer, but after those two days I knew the symptoms and have been very aware of it ever since. Sadly, only weeks later, Leonie died, having been clear of the disease for about eight years. Then I came to the awful day.
I learned how gravely ill Siobhan's dear sister Margaret was. One of those days. You never forget. Baroness Mobarik McDonough was a distinguished member of this House for many years, known to many here today and a friend to many. I had worked with Margaret in the 90s at the Labour Party, a brilliant organiser in a class of her own, and we became friends. And if you were lucky enough to have Margaret as your friend, you were very lucky. She was one of the most loyal, kind and sometimes very scary friends you would ever have.
A week or so after Margaret fell ill, I was with Siobhan on a parliamentary visit on a day when Margaret was waiting to have her first surgery, I asked how she was and what could be done. To my horror, Siobhan said she had a glioblastoma tumour. She was having surgery that day, followed by other treatments, but the prognosis was bleak. I could not believe that a strong, driven woman like Margaret that only three months before had been at our wedding, dancing the night away, full of energy, had, in effect been given a death sentence over the next 18 months or so.
So I watched Margaret fight her cancer with the same determination and energy she always had. Sadly, she did not win this one and left us two days before her 62nd birthday in June 2023. The consultant she had found, who treated her with some of the things not available on the NHS was Paul Mulholland, who gave Margaret many more months with us, a man many of us have got to know in Margaret's last campaign, being driven with that same grit and determined McDonough energy by Siobhan to find a cure for glioblastoma.
But whilst the campaign has raised large amounts of money and now his patients in it or in its first trial, the question I ask is why do we have to raise money to do this in this way? Why are the huge research programmes within our health ecosystem not doing this? That is why this bill today, that is where this bill today comes in. It is a very short bill, but will make a significant difference to what we have now and be a first step in starting to tackle the issues we're facing.
For people facing a diagnosis of one of these rare cancers. So let us look at what this bill will do. Its aim is to improve survival rates and outcomes. Clause one marketing authorisations review requires the Secretary of State to review the regulatory framework for orphan medicinal products relating to cancer. The review must consider international regulatory approaches. A report must be published and laid before Parliament within three years of Royal Assent. It applies UK wide clause two duties of the Secretary of State.
Amend section one E of the National Health Service Act 2006. Explicitly requires promotion and facilitation of research into cancers affecting no more than 1 in 2000 people in the UK. It requires arrangements to be in place to enable identification and contact of potential clinical trial participants. It creates a statutory role of national speciality lead for rare cancers that applies in England. Clause three is information disclosed. Disclosure for research. Amends the Health and Social Care Act 2012 to allow NHS England to disclose information where necessary to facilitate clinical trials into rare cancers, an explicitly subject to existing data protection legislation and safeguards.
It applies in practice to England. This bill has had cross-party support, government support and many charities, to name a few. The Brain Tumour Charity, the Blood Cancer UK, Pancreatic Cancer UK and the Less Survivable Cancers Taskforce if passed through the House. If passed through the House of Commons unamended and it is a bill that can genuinely impact many lives in a positive way. I look forward to hearing the many contributions today from noble Lords in in this chamber.
My Lords, I beg to move.
That conversation led to me having the privilege of supporting this bill here today. I want to start by setting out the background as to why this bill is necessary and, in my view, why it is urgently needed. The term rare cancers in the terms of this bill mean the cancers that affect less than 1 in 2000 people, according to the UK Rare Diseases Framework. But in many ways I feel the term rare cancers is misleading because they represent 47% of all UK cancer diagnosis, which is 180,000 people a year.
Being diagnosed with one of these rare cancers. However, disproportionately they represent 55% of cancer deaths in the UK every year. And whilst we hear of the many, many amazing breakthroughs in cancer treatment frequently and we welcome all of them that save and extend lives for many people now living with cancer in ways that even a decade ago were not possible, those amazing breakthroughs do not apply to those people being diagnosed with one of these rare cancers, where often treatment and survival rates have not improved for decades.
With so many people dying of these rare cancers every year, something has to be done to improve this situation. The measures in this bill take the first steps to do that. I want to talk a little bit today about why I feel this is so important, and why I wanted to help and support taking this bill through Parliament. I remember the day that Siobhan told me what her sister Margaret had been diagnosed with, and the bleak prognosis she had been given as if it were yesterday.
As many people in this chamber know, someone who is affected by one of these rare cancers and will have had that same experience. I want to talk about a couple of things that have crossed my life to do with rare cancers. 20 years ago, my son went to a new school for his sixth form. One of the teachers was the mother of one of his friends. At that school. There'd be various fundraising events for the charity she had set up for inflammatory breast cancer, which my family would support.
Two years later, my twins went to the same school for sixth form. One day, in walks my 17 year old Georgia and says, I'm going to do a skydive to raise money for Mrs. Cumming's charity. I have to say she needed my permission because she was under 18, but there was no way I couldn't give her that permission. But that was the energy that Mrs. Cummings had amongst her pupils. So a few weeks later, I met the incredible woman that did the the inspirational teacher that was Leonie Cummings.
I spent two days sitting chatting to her whilst waiting for the weather to clear, for my daughter to jump out of a plane, and I knew just why. My children and many others thought the world of Mrs. Cummings. I'd never heard of inflammatory breast cancer, but after those two days I knew the symptoms and have been very aware of it ever since. Sadly, only weeks later, Leonie died, having been clear of the disease for about eight years. Then I came to the awful day.
I learned how gravely ill Siobhan's dear sister Margaret was. One of those days. You never forget. Baroness Mobarik McDonough was a distinguished member of this House for many years, known to many here today and a friend to many. I had worked with Margaret in the 90s at the Labour Party, a brilliant organiser in a class of her own, and we became friends. And if you were lucky enough to have Margaret as your friend, you were very lucky. She was one of the most loyal, kind and sometimes very scary friends you would ever have.
A week or so after Margaret fell ill, I was with Siobhan on a parliamentary visit on a day when Margaret was waiting to have her first surgery, I asked how she was and what could be done. To my horror, Siobhan said she had a glioblastoma tumour. She was having surgery that day, followed by other treatments, but the prognosis was bleak. I could not believe that a strong, driven woman like Margaret that only three months before had been at our wedding, dancing the night away, full of energy, had, in effect been given a death sentence over the next 18 months or so.
So I watched Margaret fight her cancer with the same determination and energy she always had. Sadly, she did not win this one and left us two days before her 62nd birthday in June 2023. The consultant she had found, who treated her with some of the things not available on the NHS was Paul Mulholland, who gave Margaret many more months with us, a man many of us have got to know in Margaret's last campaign, being driven with that same grit and determined McDonough energy by Siobhan to find a cure for glioblastoma.
But whilst the campaign has raised large amounts of money and now his patients in it or in its first trial, the question I ask is why do we have to raise money to do this in this way? Why are the huge research programmes within our health ecosystem not doing this? That is why this bill today, that is where this bill today comes in. It is a very short bill, but will make a significant difference to what we have now and be a first step in starting to tackle the issues we're facing.
For people facing a diagnosis of one of these rare cancers. So let us look at what this bill will do. Its aim is to improve survival rates and outcomes. Clause one marketing authorisations review requires the Secretary of State to review the regulatory framework for orphan medicinal products relating to cancer. The review must consider international regulatory approaches. A report must be published and laid before Parliament within three years of Royal Assent. It applies UK wide clause two duties of the Secretary of State.
Amend section one E of the National Health Service Act 2006. Explicitly requires promotion and facilitation of research into cancers affecting no more than 1 in 2000 people in the UK. It requires arrangements to be in place to enable identification and contact of potential clinical trial participants. It creates a statutory role of national speciality lead for rare cancers that applies in England. Clause three is information disclosed. Disclosure for research. Amends the Health and Social Care Act 2012 to allow NHS England to disclose information where necessary to facilitate clinical trials into rare cancers, an explicitly subject to existing data protection legislation and safeguards.
It applies in practice to England. This bill has had cross-party support, government support and many charities, to name a few. The Brain Tumour Charity, the Blood Cancer UK, Pancreatic Cancer UK and the Less Survivable Cancers Taskforce if passed through the House. If passed through the House of Commons unamended and it is a bill that can genuinely impact many lives in a positive way. I look forward to hearing the many contributions today from noble Lords in in this chamber.
My Lords, I beg to move.
10:24
Baroness Coffey (Conservative)
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Baroness Coffey (Conservative)
The question is that this bill >> The question is that this bill be. Now read a second time. >> My Lord. We refer any noble Lord
**** Possible New Speaker ****
My Lord. We refer any noble Lord in this House to not know or someone affected by cancer. Indeed, in the UK, nearly 500 people die from cancer every day. But those figures are not just abstract, they represent personal lives, families, friendships and futures cut short. I want to commend the noble Baroness, Lady of Whitburn, for picking up this bill and for so clearly setting out the Bill's impact. I do know, Dame Siobhan. I did not know the late Baroness McDonagh, who was clearly beloved by many.
But the impact of this bill, I think, will go a long way. I, vice chairman of the Appg for cancer, and I'm speaking for that reason, but also for a personal reason. This bill is about giving hope, giving hope to people like my friend Dawn. She's my longest standing friend from school. Just a couple of years ago, Dawn was diagnosed with a blood cancer with absolutely no prospect of a cure. Likely average lifetime of five years. Could be shorter, could be longer.
Dawn introduced me to my favourite band, muse, and we attended concerts together for many years. I have to say the thought that there may be no more of that by the end of this parliament is almost unbearable, but this is what cancer takes. Not just life, but shared moments and plans for the future. In terms of cancer, what is increasingly common and deeply troubling is that people are often diagnosed either without clarity about the type of cancer they have or without a clear understanding of treatment options.
Because their cancer is so rare. As the noble Baroness set out. Rare cancers may be individually uncommon, but collectively they are anything but rare, and around 1 in 4 diagnoses is for a rare or less common cancer. That consequence, then, for tens of thousands of adults and children each year, whose experience of cancer is then markedly worse than those of patients with more common forms. The outcomes for patients with rare cancer are consistently poorer. Diagnosis, if it can be done at all, takes longer.
Specialist expertise is harder to access, clinical trials are more difficult to find, and treatment options are limited. And I don't believe that is because the science is beyond us. Or certainly I hope not, but because our system has not been designed with rare cancers in mind. And this bill seeks to address that cap. I certainly commend Doctor Arthur MP for using his place in the private members ballot for sticking to his guns and getting a bill addressing this issue. I must admit, when I first saw the bill, having been Secretary of State, I was a bit surprised.
He felt specifically legislation was needed on identifying this research. But I do understand, having spoken to him about this bill, why he has done this. He was right to press Ministers and Department for change, and he explained to me some of the personal impact that this issue had had on him. Now, this Bill does recognise a simple truth that pharmaceutical investment naturally gravitates towards issues affecting larger numbers of people. And without targeted intervention, rare cancers have fallen through the cracks, and I believe that this bill provides that intervention and a proportionate way.
Working within existing institutional frameworks. The bill in particular, tackles a major barrier to progress, and it's good to see my noble friend Lord O'Shaughnessy here, who did a brilliant review on clinical trials, so we will avoid talking about that. But I think it is important to recognise some of the history, particularly things like the Covid vaccine, that so many people coming forward to offer to be in trials was one of the reasons why it was able to be developed and allowed to be deployed so quickly as it was.
The bill also should improve coordination. Rare cancer certainly demands specialist knowledge. Expertise is fragmented and therefore the creation of a national speciality. Lead for rare cancers will provide that strategic oversight, best practice and bring together, I hope, research data and clinical insight that are currently too often siloed. It would be great to understand if the government has yet identified who that special lead might be in terms of the issues about regulating marketing authorisations, I think it is important to say that we need to make sure the regulation is agile enough to support small patient populations in the trials and precision medicine.
I have no concerns that safety standards will be weakened down these delayed diagnoses and effective treatments and fragmented care are not cost effective, and we need to make sure that we get to a point where these are not just economically sensible, but absolutely vital that we pursue to give hope to people. Now, I did flag an advance to the Minister. I want to ask a couple of questions. One is technical simply asking about reference to the NHS in this bill. I'm hoping that she can assure me that the bill coming to abolish NHS England will explicitly address this.
The other was linked to ongoing concerns about nature and trials. Funding was provided not enough as that has been spent or been done, and the Minister set out a plan for the work. My Lords, this Bill can and must give a new focus and impetus to exploring cures for rare cancer patients.
**** Possible New Speaker ****
That's why I commend it to the house. You. My Lord.
**** Possible New Speaker ****
I thank the sponsors of this bill, Doctor Scott, Arthur and Baroness Elliott of Whitburn Bay, for bringing this bill to this House. After listening to the stories, I'm excuse me if I'm a bit emotional because I too have emotional because I too have experienced grief recently from
**** Possible New Speaker ****
My Lord. We refer any noble Lord in this House to not know or someone affected by cancer. Indeed, in the UK, nearly 500 people die from cancer every day. But those figures are not just abstract, they represent personal lives, families, friendships and futures cut short. I want to commend the noble Baroness, Lady of Whitburn, for picking up this bill and for so clearly setting out the Bill's impact. I do know, Dame Siobhan. I did not know the late Baroness McDonagh, who was clearly beloved by many.
But the impact of this bill, I think, will go a long way. I, vice chairman of the Appg for cancer, and I'm speaking for that reason, but also for a personal reason. This bill is about giving hope, giving hope to people like my friend Dawn. She's my longest standing friend from school. Just a couple of years ago, Dawn was diagnosed with a blood cancer with absolutely no prospect of a cure. Likely average lifetime of five years. Could be shorter, could be longer.
Dawn introduced me to my favourite band, muse, and we attended concerts together for many years. I have to say the thought that there may be no more of that by the end of this parliament is almost unbearable, but this is what cancer takes. Not just life, but shared moments and plans for the future. In terms of cancer, what is increasingly common and deeply troubling is that people are often diagnosed either without clarity about the type of cancer they have or without a clear understanding of treatment options.
Because their cancer is so rare. As the noble Baroness set out. Rare cancers may be individually uncommon, but collectively they are anything but rare, and around 1 in 4 diagnoses is for a rare or less common cancer. That consequence, then, for tens of thousands of adults and children each year, whose experience of cancer is then markedly worse than those of patients with more common forms. The outcomes for patients with rare cancer are consistently poorer. Diagnosis, if it can be done at all, takes longer.
Specialist expertise is harder to access, clinical trials are more difficult to find, and treatment options are limited. And I don't believe that is because the science is beyond us. Or certainly I hope not, but because our system has not been designed with rare cancers in mind. And this bill seeks to address that cap. I certainly commend Doctor Arthur MP for using his place in the private members ballot for sticking to his guns and getting a bill addressing this issue. I must admit, when I first saw the bill, having been Secretary of State, I was a bit surprised.
He felt specifically legislation was needed on identifying this research. But I do understand, having spoken to him about this bill, why he has done this. He was right to press Ministers and Department for change, and he explained to me some of the personal impact that this issue had had on him. Now, this Bill does recognise a simple truth that pharmaceutical investment naturally gravitates towards issues affecting larger numbers of people. And without targeted intervention, rare cancers have fallen through the cracks, and I believe that this bill provides that intervention and a proportionate way.
Working within existing institutional frameworks. The bill in particular, tackles a major barrier to progress, and it's good to see my noble friend Lord O'Shaughnessy here, who did a brilliant review on clinical trials, so we will avoid talking about that. But I think it is important to recognise some of the history, particularly things like the Covid vaccine, that so many people coming forward to offer to be in trials was one of the reasons why it was able to be developed and allowed to be deployed so quickly as it was.
The bill also should improve coordination. Rare cancer certainly demands specialist knowledge. Expertise is fragmented and therefore the creation of a national speciality. Lead for rare cancers will provide that strategic oversight, best practice and bring together, I hope, research data and clinical insight that are currently too often siloed. It would be great to understand if the government has yet identified who that special lead might be in terms of the issues about regulating marketing authorisations, I think it is important to say that we need to make sure the regulation is agile enough to support small patient populations in the trials and precision medicine.
I have no concerns that safety standards will be weakened down these delayed diagnoses and effective treatments and fragmented care are not cost effective, and we need to make sure that we get to a point where these are not just economically sensible, but absolutely vital that we pursue to give hope to people. Now, I did flag an advance to the Minister. I want to ask a couple of questions. One is technical simply asking about reference to the NHS in this bill. I'm hoping that she can assure me that the bill coming to abolish NHS England will explicitly address this.
The other was linked to ongoing concerns about nature and trials. Funding was provided not enough as that has been spent or been done, and the Minister set out a plan for the work. My Lords, this Bill can and must give a new focus and impetus to exploring cures for rare cancer patients.
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That's why I commend it to the house. You. My Lord.
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I thank the sponsors of this bill, Doctor Scott, Arthur and Baroness Elliott of Whitburn Bay, for bringing this bill to this House. After listening to the stories, I'm excuse me if I'm a bit emotional because I too have emotional because I too have experienced grief recently from
10:30
Lord Patel (Crossbench)
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Lord Patel (Crossbench)
from rare cancers. My Lords, I support this bill strongly and I hope we will give it swift passage unamended through this House so it can be on the statute book. I have can be on the statute book. I have 1 or 2 concerns. First of all, I understand the need for the review understand the need for the review of relating to marketing authorisation because we do need authorisation because we do need drugs to be developed urgently and we do require, therefore regulation to change that will allow for this.
And I look forward to listening to Lord O'Shaughnessy about the novel ways in which the clinical trials can be conducted to speed up this process. What I have concerns about is the timelines. My Lord. This bill gives hope to people with rare cancers from diagnoses of terminal illness to hopefully, treatment. And that's what we're hoping this bill will do. But a timeline of three years to carry out a review and no plan of implementation of that review seems rather long.
Timelines for processes and progress are in years, while timelines for tumours to advance is in weeks. Patients with rare cancers cannot wait longer, so I hope we'll address this issue about timelines. That applies also to the reports to be produced every three years, as indicated in the bill. I think the idea that there will be a lead clinician for specialist rare cancers is good, with a duty to guide, coordinate and promote research for rare cancers.
As we heard, funding for rare cancer is abysmally low by one tenth of the total government funding for research related cancer goes to rare cancers. And that must change because, as we already heard, 50% of the deaths related to cancer are in rare cancers and unless we change that, it will not make any bit of difference. Research is important, but the bedrock of research is the requirement that all these tumours, rare tumours, are genetically sequenced and therefore drugs that are already exist can be repurposed to treat diseases.
I give you an example. A gene called Braf v600e, which is a gene associated with certain forms of melanoma, was found to be effective to treat certain kinds of brain cancer and therefore it successfully treated people with rare breast cancers. Charities such as Salivary Gland Research UK, who given me a good brief and breast cancer justice, have pleaded for sequencing genomic sequencing of tumours and this we must do for each and every case to build up a registry, not just of patients who have suffered from rare cancer, but patients who have on the register with this tumour.
And we should also ask, like brain cancer justice has asked for that. The tumours be frozen at the point that they are managed or they are obtained because whether without frozen tissues, we will not be able to carry out molecular studies in the future to determine whether there are genes that are effect and therefore drugs could be developed related to that genes. So it's important that we do create registry, not just a database of patients, but also of of molecular.
My Lords, I hope this bill gives much hope to patients and I hope it will get the. I'm sorry for my.
And I look forward to listening to Lord O'Shaughnessy about the novel ways in which the clinical trials can be conducted to speed up this process. What I have concerns about is the timelines. My Lord. This bill gives hope to people with rare cancers from diagnoses of terminal illness to hopefully, treatment. And that's what we're hoping this bill will do. But a timeline of three years to carry out a review and no plan of implementation of that review seems rather long.
Timelines for processes and progress are in years, while timelines for tumours to advance is in weeks. Patients with rare cancers cannot wait longer, so I hope we'll address this issue about timelines. That applies also to the reports to be produced every three years, as indicated in the bill. I think the idea that there will be a lead clinician for specialist rare cancers is good, with a duty to guide, coordinate and promote research for rare cancers.
As we heard, funding for rare cancer is abysmally low by one tenth of the total government funding for research related cancer goes to rare cancers. And that must change because, as we already heard, 50% of the deaths related to cancer are in rare cancers and unless we change that, it will not make any bit of difference. Research is important, but the bedrock of research is the requirement that all these tumours, rare tumours, are genetically sequenced and therefore drugs that are already exist can be repurposed to treat diseases.
I give you an example. A gene called Braf v600e, which is a gene associated with certain forms of melanoma, was found to be effective to treat certain kinds of brain cancer and therefore it successfully treated people with rare breast cancers. Charities such as Salivary Gland Research UK, who given me a good brief and breast cancer justice, have pleaded for sequencing genomic sequencing of tumours and this we must do for each and every case to build up a registry, not just of patients who have suffered from rare cancer, but patients who have on the register with this tumour.
And we should also ask, like brain cancer justice has asked for that. The tumours be frozen at the point that they are managed or they are obtained because whether without frozen tissues, we will not be able to carry out molecular studies in the future to determine whether there are genes that are effect and therefore drugs could be developed related to that genes. So it's important that we do create registry, not just a database of patients, but also of of molecular.
My Lords, I hope this bill gives much hope to patients and I hope it will get the. I'm sorry for my.
10:34
Lord O'Shaughnessy (Conservative)
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Lord O'Shaughnessy (Conservative)
My Lords, before beginning, I'd just like to draw attention to my register of interests, particularly involvement with Cambridge University Health Partners, New Market Strategy and Health Data Research UK, and in particular as a patron and advisor of the Tessa Jowell Brain Cancer Mission, of which more shortly, I would like to congratulate Baroness Ellis on bringing this bill to this House and to Scott Arthur, of course, for introducing it in the other place. This House has an excellent and long standing record in promoting innovation in care and research in cancer.
The noble Lady has already talked about and referenced the campaigning by a sadly departed friend, Baroness McDonagh. We can think back even further to the Medical Innovation Bill introduced by Lord Saatchi under not dissimilar circumstances. But today I would like to pay tribute to and to encourage us to learn from the example of another dear friend departed friend. Sadly, this house which is Baroness Jowl or Tessa as everyone knew her eight years ago this month and only months before her own untimely death from a not so rare, unfortunately, cancer glioblastoma.
Tesla inspired this house in this country to do more. She wanted us to give the word that both my noble friend Baroness Coffey and the noble Lord Patel have already mentioned, which is hope. Hope to patients, hope to their families. When she finished, it was an extremely emotional event. Those who were there will remember the House rose and rightly applauded in itself a highly unusual but absolutely deserves a response. And it was my privilege to respond on behalf of the government that day.
We were able to make a number of commitments to move forward. She, of course, in a in a very typical way, wasn't just talking about her cancer, but all cancers. And we did therefore immediately afterwards bring together all the parties in the brain cancer space charities, NHS England, NIH and others and the brain cancer mission was born in her name and in tribute to her. Whether those are rare cancers or not, GBM is sadly quite common. Others, like medulloblastoma, incredibly rare, but they all suffer from the same kind of problems when it comes to treatment and research.
The aims of the Brain Cancer mission to improve the quality and equity of care, to strengthen workforces and to accelerate research, development and innovation. And I'm delighted to say thanks to the leadership of so many people, the charities that have been involved, the team and others. It is doing and has done amazing things. It supported 32 hospitals to improve the quality of that care, 14 centres of excellence in neuro oncology for adults and 11 for children, a fellows program that supporting hundreds of researchers, an academy that has trained over 1500 neuro oncology staff of every kind.
The largest data set for neuro oncology ever established and in conjunction with the Brain Tumour Research charity and the creation of a novel therapeutic accelerator. But sadly, my Lords, there is so much more to do. Brain cancer is the biggest cancer cause of death for children and indeed for adults under 40. Take GBM for example. Late diagnosis, 12 to 18 month prognosis and only 5% of people surviving more than five years. These statistics are repeated over and over for all brain tumours, but all cancers too, and the standard treatments are unchanged for decades.
That is why this bill is so important, and I want to just speak quickly to the three clauses within it. The first is around marketing authorisations, which the noble Lord Patel has already mentioned. The MHRA has made some progress through what it calls its international recognition procedure. But we need to go further and faster, and I'm looking forward to hearing from the Minister about what is happening in that sure regard to make we can accelerate those innovative treatments through to patients.
Clause two talks about a duty to support research at that Dispatch Box eight years ago, I made a promise that we would spend £40 million of NIH money on Brain tumour research, and we have not yet. The NIH has been a willing partner, but we are not supporting that research to the degree we should yet. And I'm looking forward again to hearing how that commitment and well beyond and well beyond for other cancers too, will be met from the noble Lady, the Minister. And then finally, on data clause three, the noble Lord Freyberg introduced a debate on this some years ago, and that in itself is a whole other subject which which we could talk about, but I strongly recommend commend the recommendations around this.
That clause. It reflects the recommendations been made in my own review of clinical trials, and we need to go further. Patients would be amazed to find out that their data is not being used to find trials for them, and that is where the public is and the law needs to catch up. So I want to end my Lord by just thanking again, the noble Lady for introducing the Bill and to remind us that Tesla invited us to approach the fight against cancer not with fear, but with courage and compassion.
And I think
**** Possible New Speaker ****
that is what this bill exemplifies. Yeah. Commons and can I just
**** Possible New Speaker ****
Yeah. Commons and can I just take one minute? Firstly, to commend what has just been said by commend what has just been said by the noble Lord, who I was pleased to work with many years ago when he was the Minister. And I'm very pleased that he's recalled the last occasion that my my long standing occasion that my my long standing friend, Tessa Jowell Baroness Gale made in this house. I had the privilege of being the immediate speaker after her, which is one of the most difficult occasions of my
**** Possible New Speaker ****
life. Sorry. My noble friend. So is
**** Possible New Speaker ****
Sorry. My noble friend. So is Dame is not on the list to speak, and the next speaker.
**** Possible New Speaker ****
and the next speaker. My Lords, I'm sure that not only in this House but across the country, people are grateful to country, people are grateful to Scott, Arthur, MP and Lady Elliot of Whitburn Bay for introducing of Whitburn Bay for introducing this incredibly important bill. I should declare my working life has been in palliative care and I have looked after many children and adults with rare cancers, some very close to me and some in my family. Often they seem to have missed out on the research agendas at an early stage, yet they are all incredibly generous, saying they know a study may not help them, but it will help others.
In the 1970s, I worked in a paediatric oncology unit as the early MRC trials were conducted for children with leukaemia, the prognosis was appalling, but because of the huge trials, the outcome is completely different today. This week I met a young man, Lewis, who described the intensive chemotherapy he endured, which is very novel and complex as brutal. But he knew that without that research of previous years, he would not be alive and well today. Ocular melanoma. And that's why this bill is so urgently needed.
These patients are often very young, and the primary treatment is to try to cure the malignancy. But that's not always successful. Once liver metastases occur, the standard NHS treatments available have remarkably poor outcomes and only have an effect in a small genetic subgroup, extending life expectancy by under six months. 60% of patients with metastatic uveal melanoma have no approved treatments available to them, which are specific to their disease. They rely on other drugs developed in skin cancer, a completely different disease which have limited, if any, benefit for 25 years.
Novel management of the cancer through percutaneous hepatic perfusion with melphalan chemotherapy, commonly known as chemo saturation, has been researched. It delivers high doses to the liver through a tiny catheter fed up through the groyne, while while filtering blood to protect the rest of the body. The liver deposits shrink some dramatically, with an overall 84% clinical benefit rate with improved quality of life markers. Two UK centres, Southampton and Manchester, undertake this in a researching IT survival improvement of on average over 20 months.
These are results. This is that mean that it's funded in the USA, Germany and several other European countries, but not here. Patients are having to crowdfund to have this treatment which extends their lives significantly. This is a very rare cancer, generating the level of evidence required to submit to Nice
The noble Lady has already talked about and referenced the campaigning by a sadly departed friend, Baroness McDonagh. We can think back even further to the Medical Innovation Bill introduced by Lord Saatchi under not dissimilar circumstances. But today I would like to pay tribute to and to encourage us to learn from the example of another dear friend departed friend. Sadly, this house which is Baroness Jowl or Tessa as everyone knew her eight years ago this month and only months before her own untimely death from a not so rare, unfortunately, cancer glioblastoma.
Tesla inspired this house in this country to do more. She wanted us to give the word that both my noble friend Baroness Coffey and the noble Lord Patel have already mentioned, which is hope. Hope to patients, hope to their families. When she finished, it was an extremely emotional event. Those who were there will remember the House rose and rightly applauded in itself a highly unusual but absolutely deserves a response. And it was my privilege to respond on behalf of the government that day.
We were able to make a number of commitments to move forward. She, of course, in a in a very typical way, wasn't just talking about her cancer, but all cancers. And we did therefore immediately afterwards bring together all the parties in the brain cancer space charities, NHS England, NIH and others and the brain cancer mission was born in her name and in tribute to her. Whether those are rare cancers or not, GBM is sadly quite common. Others, like medulloblastoma, incredibly rare, but they all suffer from the same kind of problems when it comes to treatment and research.
The aims of the Brain Cancer mission to improve the quality and equity of care, to strengthen workforces and to accelerate research, development and innovation. And I'm delighted to say thanks to the leadership of so many people, the charities that have been involved, the team and others. It is doing and has done amazing things. It supported 32 hospitals to improve the quality of that care, 14 centres of excellence in neuro oncology for adults and 11 for children, a fellows program that supporting hundreds of researchers, an academy that has trained over 1500 neuro oncology staff of every kind.
The largest data set for neuro oncology ever established and in conjunction with the Brain Tumour Research charity and the creation of a novel therapeutic accelerator. But sadly, my Lords, there is so much more to do. Brain cancer is the biggest cancer cause of death for children and indeed for adults under 40. Take GBM for example. Late diagnosis, 12 to 18 month prognosis and only 5% of people surviving more than five years. These statistics are repeated over and over for all brain tumours, but all cancers too, and the standard treatments are unchanged for decades.
That is why this bill is so important, and I want to just speak quickly to the three clauses within it. The first is around marketing authorisations, which the noble Lord Patel has already mentioned. The MHRA has made some progress through what it calls its international recognition procedure. But we need to go further and faster, and I'm looking forward to hearing from the Minister about what is happening in that sure regard to make we can accelerate those innovative treatments through to patients.
Clause two talks about a duty to support research at that Dispatch Box eight years ago, I made a promise that we would spend £40 million of NIH money on Brain tumour research, and we have not yet. The NIH has been a willing partner, but we are not supporting that research to the degree we should yet. And I'm looking forward again to hearing how that commitment and well beyond and well beyond for other cancers too, will be met from the noble Lady, the Minister. And then finally, on data clause three, the noble Lord Freyberg introduced a debate on this some years ago, and that in itself is a whole other subject which which we could talk about, but I strongly recommend commend the recommendations around this.
That clause. It reflects the recommendations been made in my own review of clinical trials, and we need to go further. Patients would be amazed to find out that their data is not being used to find trials for them, and that is where the public is and the law needs to catch up. So I want to end my Lord by just thanking again, the noble Lady for introducing the Bill and to remind us that Tesla invited us to approach the fight against cancer not with fear, but with courage and compassion.
And I think
**** Possible New Speaker ****
that is what this bill exemplifies. Yeah. Commons and can I just
**** Possible New Speaker ****
Yeah. Commons and can I just take one minute? Firstly, to commend what has just been said by commend what has just been said by the noble Lord, who I was pleased to work with many years ago when he was the Minister. And I'm very pleased that he's recalled the last occasion that my my long standing occasion that my my long standing friend, Tessa Jowell Baroness Gale made in this house. I had the privilege of being the immediate speaker after her, which is one of the most difficult occasions of my
**** Possible New Speaker ****
life. Sorry. My noble friend. So is
**** Possible New Speaker ****
Sorry. My noble friend. So is Dame is not on the list to speak, and the next speaker.
**** Possible New Speaker ****
and the next speaker. My Lords, I'm sure that not only in this House but across the country, people are grateful to country, people are grateful to Scott, Arthur, MP and Lady Elliot of Whitburn Bay for introducing of Whitburn Bay for introducing this incredibly important bill. I should declare my working life has been in palliative care and I have looked after many children and adults with rare cancers, some very close to me and some in my family. Often they seem to have missed out on the research agendas at an early stage, yet they are all incredibly generous, saying they know a study may not help them, but it will help others.
In the 1970s, I worked in a paediatric oncology unit as the early MRC trials were conducted for children with leukaemia, the prognosis was appalling, but because of the huge trials, the outcome is completely different today. This week I met a young man, Lewis, who described the intensive chemotherapy he endured, which is very novel and complex as brutal. But he knew that without that research of previous years, he would not be alive and well today. Ocular melanoma. And that's why this bill is so urgently needed.
These patients are often very young, and the primary treatment is to try to cure the malignancy. But that's not always successful. Once liver metastases occur, the standard NHS treatments available have remarkably poor outcomes and only have an effect in a small genetic subgroup, extending life expectancy by under six months. 60% of patients with metastatic uveal melanoma have no approved treatments available to them, which are specific to their disease. They rely on other drugs developed in skin cancer, a completely different disease which have limited, if any, benefit for 25 years.
Novel management of the cancer through percutaneous hepatic perfusion with melphalan chemotherapy, commonly known as chemo saturation, has been researched. It delivers high doses to the liver through a tiny catheter fed up through the groyne, while while filtering blood to protect the rest of the body. The liver deposits shrink some dramatically, with an overall 84% clinical benefit rate with improved quality of life markers. Two UK centres, Southampton and Manchester, undertake this in a researching IT survival improvement of on average over 20 months.
These are results. This is that mean that it's funded in the USA, Germany and several other European countries, but not here. Patients are having to crowdfund to have this treatment which extends their lives significantly. This is a very rare cancer, generating the level of evidence required to submit to Nice
10:43
Baroness Finlay of Llandaff (Crossbench)
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Baroness Finlay of Llandaff (Crossbench)
has been difficult and funding is not available. Research is not available. Research is essential. The national lead on rare cancers must be able to link rare cancers must be able to link across the UK for every person to have the opportunity to participate have the opportunity to participate in research and benefit from advancements that develop through fast track programmes. The national fast track programmes. The national lead will need to address time limited interim access pathways to clinically appropriate treatments for rare cancers, while longer term commissioning decisions are under consideration.
Where published clinical evidence and specialist expertise already exists, time is not on the patient's side. So I ask the Minister, when will the clinical lead be appointed? And is the database live across the whole of the UK already, and will the lead be able to review individual funding requests for exceptionality when no alternative exists, so that patients with rare cancers are not left without access to life extending treatments? And importantly, they and those who love them are not left without hope.
Where published clinical evidence and specialist expertise already exists, time is not on the patient's side. So I ask the Minister, when will the clinical lead be appointed? And is the database live across the whole of the UK already, and will the lead be able to review individual funding requests for exceptionality when no alternative exists, so that patients with rare cancers are not left without access to life extending treatments? And importantly, they and those who love them are not left without hope.
10:44
Lord Bourne of Aberystwyth (Conservative)
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Lord Bourne of Aberystwyth (Conservative)
Hear. >> Hear. My. >> My Lords, it's a. >> Great pleasure. >> To follow the noble Baroness Baroness Finlay, who always speaks.
**** Possible New Speaker ****
With authority. On these issues. I particularly agree with her on the timescales and indeed with the noble Lord, and indeed with the noble Lord, Lord Patel. If anything can be done about compressing the timescales, I think that would be very welcome. Could I associate myself with others who have congratulated and thank the noble Baroness Baroness Elliott of Whitburn Bay for bringing this legislation forward? It clearly is extremely important, and also to thank the hon. Member for Edinburgh South West, Doctor Scott Arthur, for introducing the Bill.
In the other place. My Lords are two very obvious things about cancer research funding. We spend a lot on cancer research. Funding is the first clear thing, but we don't spend nearly enough. And that, I think, is something that this legislation will help with. There are three key things about this legislation that have been referred to, but I'd like to stress them too. First, the role of the Secretary of State in relation to orphan drugs, those those drugs, those treatments that pharmaceutical companies don't pursue because of lack of commercial return, that clearly is something that a review will highlight and hopefully action will follow from that.
It needs to. Secondly, the contact registry clearly vital. And to facilitate that work and bring forward that legislation is something that is this legislation is doing. And I know that my noble friend Lord O'Shaughnessy has done a lot of work in this regard, and I'm sure his contribution in this legislation will be considerable. The legislation also provides, as has been said, for a knowned for a named individual responsible for overseeing the delivery of research into rare cancer treatments.
Nothing could be more vital than having that champion, I think, against rare cancers, and I very much welcome that. My my Lords, if I could move from the schematic and the general thrust of this legislation to the personal, to the deeply personal, the fight against cancer, against any illness should unite us all. Indeed it does so irrespective of party, of race, of colour, of gender, of age or social background. The very words rare cancers lend to cancer and exoticism.
It doesn't deserve to sufferers, to their families, to their friends. It's a cancer, plain and simple, a cancer that they want to combat and defeat. One such sufferer who whom I know and is in the public gallery today is Dan Horrocks. He's a parliamentary assistant in the Commons. He's a father, a husband and a four times cancer survivor. He has fought this dreadful disease, in his case, brain tumours, over the last 14 years for Dan and for millions of others of sufferers, their families and their friends, this legislation is more than welcome and it deserves our wholehearted support.
Yes.
**** Possible New Speaker ****
With authority. On these issues. I particularly agree with her on the timescales and indeed with the noble Lord, and indeed with the noble Lord, Lord Patel. If anything can be done about compressing the timescales, I think that would be very welcome. Could I associate myself with others who have congratulated and thank the noble Baroness Baroness Elliott of Whitburn Bay for bringing this legislation forward? It clearly is extremely important, and also to thank the hon. Member for Edinburgh South West, Doctor Scott Arthur, for introducing the Bill.
In the other place. My Lords are two very obvious things about cancer research funding. We spend a lot on cancer research. Funding is the first clear thing, but we don't spend nearly enough. And that, I think, is something that this legislation will help with. There are three key things about this legislation that have been referred to, but I'd like to stress them too. First, the role of the Secretary of State in relation to orphan drugs, those those drugs, those treatments that pharmaceutical companies don't pursue because of lack of commercial return, that clearly is something that a review will highlight and hopefully action will follow from that.
It needs to. Secondly, the contact registry clearly vital. And to facilitate that work and bring forward that legislation is something that is this legislation is doing. And I know that my noble friend Lord O'Shaughnessy has done a lot of work in this regard, and I'm sure his contribution in this legislation will be considerable. The legislation also provides, as has been said, for a knowned for a named individual responsible for overseeing the delivery of research into rare cancer treatments.
Nothing could be more vital than having that champion, I think, against rare cancers, and I very much welcome that. My my Lords, if I could move from the schematic and the general thrust of this legislation to the personal, to the deeply personal, the fight against cancer, against any illness should unite us all. Indeed it does so irrespective of party, of race, of colour, of gender, of age or social background. The very words rare cancers lend to cancer and exoticism.
It doesn't deserve to sufferers, to their families, to their friends. It's a cancer, plain and simple, a cancer that they want to combat and defeat. One such sufferer who whom I know and is in the public gallery today is Dan Horrocks. He's a parliamentary assistant in the Commons. He's a father, a husband and a four times cancer survivor. He has fought this dreadful disease, in his case, brain tumours, over the last 14 years for Dan and for millions of others of sufferers, their families and their friends, this legislation is more than welcome and it deserves our wholehearted support.
Yes.
10:48
Baroness Morgan of Drefelin (Labour)
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Baroness Morgan of Drefelin (Labour)
My Lords, I am absolutely delighted to take part in this delighted to take part in this Second Reading debate. And I must say that already, and we're only a third of the way through the speaker's list. This has been a very moving, but also an extremely very moving, but also an extremely well informed, very interesting and expert debate. So perhaps the House of Lords at its best. I really do want to congratulate my noble friend for bringing forward this private member's bill and also speaking so eloquently, eloquently and personally about why she's doing this.
So congratulations. We've already heard that rare cancers do have often lower survival rates. And this of course, when you look at the numbers of people being diagnosed with rare cancers as people, as noble Lords have already said, rare is is a kind of gives the wrong impression, because we do hear that it's around about 52. 55% of all cancer deaths can be attributed to these rare cancers. My Lords, acute myeloid leukaemia AML, for example, has a five year survival of just 22% and almost 80% of those who are diagnosed with AML today will not be alive in five years time.
And that just feels such a tough, a tough diagnosis. Only half will survive beyond six months. I want to pay tribute. Also in my my short remarks to the work that the charities do across the sector, charities that often have no staff are peopled by those with direct experience of loss of of the cancer type itself, of dealing with real challenges in in access to treatments. And these charities often come together in the organisation. Cancer 54 that I'm president of.
They have long been calling for more investment into research, into rare and less common cancers. And they do this, as we've heard already, because research is absolutely key for transforming survival rates. These cancers are diverse and complex and affect a large patient population. Yes, but as we've already heard so eloquently from Lord Patel that research is difficult in rare cancers, populations of of unique of uniquely sequenced types of cancer are are very, very small. So it's extremely difficult.
And so ideas like the noble Lord presents around in sequencing, around repurposing. All of these progressed through a greater attention and more funding for research, which this bill aims to deliver will really further incentivise research and investment in treatment of rare cancer types. So, my Lords, I'm particularly interested in the idea that the provision in the bill to appoint a national lead for rare cancers to ensure that patients are offered our participation, for example, in relevant clinical trials.
For far too often, my Lords, patients diagnosed with a rare cancer are not offered the opportunity to take part in trials. Cancer 52 did a survey recently of 1400 patients and found that 82% were not offered the opportunity to participate in a clinical trial and a leukaemia UK research survey echoed this sentiment, finding that half of all leukaemia patients were not given the opportunity to participate in a trial. So I support the the measures in this bill.
I support the need to create focus on rare cancers, on orphan medicines and so on, and I really look forward to hearing from the Minister her an update for the House on the work being done by the government through the development of plans like the cancer Plan, on what the government is doing to tackle the real challenges of access for patients with rare cancers. It's a great pleasure to follow the noble Ladies in her contribution this morning. This short but very important bill was brought from the Commons in July last year.
I think
So congratulations. We've already heard that rare cancers do have often lower survival rates. And this of course, when you look at the numbers of people being diagnosed with rare cancers as people, as noble Lords have already said, rare is is a kind of gives the wrong impression, because we do hear that it's around about 52. 55% of all cancer deaths can be attributed to these rare cancers. My Lords, acute myeloid leukaemia AML, for example, has a five year survival of just 22% and almost 80% of those who are diagnosed with AML today will not be alive in five years time.
And that just feels such a tough, a tough diagnosis. Only half will survive beyond six months. I want to pay tribute. Also in my my short remarks to the work that the charities do across the sector, charities that often have no staff are peopled by those with direct experience of loss of of the cancer type itself, of dealing with real challenges in in access to treatments. And these charities often come together in the organisation. Cancer 54 that I'm president of.
They have long been calling for more investment into research, into rare and less common cancers. And they do this, as we've heard already, because research is absolutely key for transforming survival rates. These cancers are diverse and complex and affect a large patient population. Yes, but as we've already heard so eloquently from Lord Patel that research is difficult in rare cancers, populations of of unique of uniquely sequenced types of cancer are are very, very small. So it's extremely difficult.
And so ideas like the noble Lord presents around in sequencing, around repurposing. All of these progressed through a greater attention and more funding for research, which this bill aims to deliver will really further incentivise research and investment in treatment of rare cancer types. So, my Lords, I'm particularly interested in the idea that the provision in the bill to appoint a national lead for rare cancers to ensure that patients are offered our participation, for example, in relevant clinical trials.
For far too often, my Lords, patients diagnosed with a rare cancer are not offered the opportunity to take part in trials. Cancer 52 did a survey recently of 1400 patients and found that 82% were not offered the opportunity to participate in a clinical trial and a leukaemia UK research survey echoed this sentiment, finding that half of all leukaemia patients were not given the opportunity to participate in a trial. So I support the the measures in this bill.
I support the need to create focus on rare cancers, on orphan medicines and so on, and I really look forward to hearing from the Minister her an update for the House on the work being done by the government through the development of plans like the cancer Plan, on what the government is doing to tackle the real challenges of access for patients with rare cancers. It's a great pleasure to follow the noble Ladies in her contribution this morning. This short but very important bill was brought from the Commons in July last year.
I think
10:52
Baroness Browning (Conservative)
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Baroness Browning (Conservative)
many of us feel we've waited a very long time for it to appear on the floor of this house, so I very much floor of this house, so I very much welcome it today. I was first contacted about it by one of the many charities who are very involved in this by the Pancreatic Cancer UK charity. And sometimes Cancer UK charity. And sometimes when we hear of cancers, whether we are personally involved or not, we become quite surprised that this particular cancer is regarded as a rare cancer.
And to find that there are so many of them well into three figures and it, as we've already heard from Baroness Elliott, that this cancer is a result of 47% of cancers diagnosed each year, are for rare or less common cancers. They account for 55% of cancer deaths, and they include some of the lowest survival rates. In the past, I've been very interested in and had communication with head and neck cancer charities, blood cancer charities, and even within one particular charity there will be many cancers that are regarded as a rare cancer.
And of course, this bill seeks to redress the these poor survival rates with greater focus, particularly on research. The less survivable Cancer Task Force supports this bill, and they say the bill would ensure that a named leading government, as we've already heard, with a responsibility to support research and innovation for rare cancers. As it stands, these cancers often struggle to attract research, funding and attention compared to other diseases, and namely would ensure there's a strategic focus on rare cancers in government for the first time.
This would help to coordinate efforts, look at gaps in a comprehensive way, and ensure these cancers become the main priority. And I hope when the Minister responds, she might flesh out a little bit about how she she sees that that role developing, we'd also ensure patients can get better access to to find relevant research and clinical trials. I think many of us have encountered people who, in diagnosis of a rare cancer, or very often just any cancer, are desperate to find trials that are going on.
Where do you start to look who who holds this information? This is a very important part of this bill. Currently, many patients with rare cancers miss out on potentially life extending clinical trials simply because they don't know about them. The current system makes it difficult to match eligible patients with appropriate trials, meaning trials can struggle to recruit enough participants and potentially promising treatments can't move forward. Again, I'd like if the Minister could tell us how how the medical profession is starting at primary care.
Access is themselves this sort of information. When a patient is in front of them, and it places a duty on the government to review and potentially strengthen orphan drug regulations. The Orphan Drug Regulations aim to incentivise research into rare diseases, because the current incentives for pharmaceutical companies to develop treatments for rare cancers aren't strong enough. Now, my Lords, I congratulate the the sponsors of both of the drug of the Bill in both houses, Doctor Scott Arthur MP and of course Baroness Elliott of Whitburn Bay who who brought this to the chamber this morning in such a lucid way.
And I hope I'm not being optimistic in saying to the government, private members bills never succeed unless government supports them. We all know that. I do hope the Minister is going to support this one.
And to find that there are so many of them well into three figures and it, as we've already heard from Baroness Elliott, that this cancer is a result of 47% of cancers diagnosed each year, are for rare or less common cancers. They account for 55% of cancer deaths, and they include some of the lowest survival rates. In the past, I've been very interested in and had communication with head and neck cancer charities, blood cancer charities, and even within one particular charity there will be many cancers that are regarded as a rare cancer.
And of course, this bill seeks to redress the these poor survival rates with greater focus, particularly on research. The less survivable Cancer Task Force supports this bill, and they say the bill would ensure that a named leading government, as we've already heard, with a responsibility to support research and innovation for rare cancers. As it stands, these cancers often struggle to attract research, funding and attention compared to other diseases, and namely would ensure there's a strategic focus on rare cancers in government for the first time.
This would help to coordinate efforts, look at gaps in a comprehensive way, and ensure these cancers become the main priority. And I hope when the Minister responds, she might flesh out a little bit about how she she sees that that role developing, we'd also ensure patients can get better access to to find relevant research and clinical trials. I think many of us have encountered people who, in diagnosis of a rare cancer, or very often just any cancer, are desperate to find trials that are going on.
Where do you start to look who who holds this information? This is a very important part of this bill. Currently, many patients with rare cancers miss out on potentially life extending clinical trials simply because they don't know about them. The current system makes it difficult to match eligible patients with appropriate trials, meaning trials can struggle to recruit enough participants and potentially promising treatments can't move forward. Again, I'd like if the Minister could tell us how how the medical profession is starting at primary care.
Access is themselves this sort of information. When a patient is in front of them, and it places a duty on the government to review and potentially strengthen orphan drug regulations. The Orphan Drug Regulations aim to incentivise research into rare diseases, because the current incentives for pharmaceutical companies to develop treatments for rare cancers aren't strong enough. Now, my Lords, I congratulate the the sponsors of both of the drug of the Bill in both houses, Doctor Scott Arthur MP and of course Baroness Elliott of Whitburn Bay who who brought this to the chamber this morning in such a lucid way.
And I hope I'm not being optimistic in saying to the government, private members bills never succeed unless government supports them. We all know that. I do hope the Minister is going to support this one.
10:56
Lord Kakkar (Crossbench)
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Lord Kakkar (Crossbench)
My great pleasure to follow the noble Lady Baroness Browning. In so doing, congratulate the noble Lady Baroness Elliott of Whitburn Bay for the very thoughtful way in which she's introduced this which she's introduced this important bill. I must remind noble Lords of my own registered interests as chairman of King's Health Partners, chairman of UK Biobank and chairman of the office for the Strategic Coordination of Health Research. My Lords, we have heard that rare and less common cancers represent a substantial burden of disease.
Some 47% of diagnoses, some 55% of deaths. And this is striking because the poor clinical outcome has been attributed to a lack of research, a lack of coordination in care, and a lack of application of resources to ensure that clinical outcomes can be improved. And the bill before your Lordships today addresses all of these matters by ensuring that there is greater accountability, by ensuring that regulation is improved, and most importantly, by ensuring that we can drive forward a meaningful research effort for a series of cancers that represent by themselves a small numbers of patients, but collectively represent, as I have said, a substantial burden.
I think it's very important. And indeed, we've heard this morning that the appointment of a national speciality lead for rare cancers is achieved quickly. We've seen in other areas and domains of clinical practice the impressive results achieved through the appointment of such leadership, for instance, in the appointment of a national speciality lead for cardiovascular disease some 20 years ago, was attended by a substantial reduction in cardiovascular mortality. We've also seen the impact that such individuals can have on the research agenda.
Regulation is vitally important in incentivising innovation, and numerous reviews and assessments have determined that in many areas, our regulation is wanting. In this area, the regulation has the potential for a substantial negative impact on innovation, and it is innovative therapies that are going to improve clinical outcomes. So review of regulation is critically important. And I share the view of the noble Lord, my noble friend Lord Patel, that this three year window for delivery of that particular review of the regulatory framework appears far too long and maybe should be addressed by His Majesty's Government.
The final part of this bill is to enhance and promote the research effort. This is critically important. The mandate that the National Institute for Health Research, as part of its be part of Research initiative, establishes a special opportunities for registers for rare disease. Rare cancers is critically important. But beyond that, as we've heard from my noble friend Lord Patel, it is important that we go beyond just knowing where the patients are and providing patients with the opportunity to participate in clinical research.
The register should go beyond and provide the opportunity for appropriate genotyping and phenotyping of rare cancers as a resource to drive future research effort, and in this regard, the sharing of data within the NHS for research purposes is critically important. We saw the benefits of that during Covid, when the Secretary of State issued a copy notice which allowed for the sharing of primary care data with UK Biobank and allowed researchers, therefore, to use that important resource to identify many treatment options and a better understanding of Covid 19.
The sharing of data that will be facilitated as part of this bill is probably one of the most important elements that will drive forward the opportunity for improving clinical outcomes for those suffering from rare cancers.
Some 47% of diagnoses, some 55% of deaths. And this is striking because the poor clinical outcome has been attributed to a lack of research, a lack of coordination in care, and a lack of application of resources to ensure that clinical outcomes can be improved. And the bill before your Lordships today addresses all of these matters by ensuring that there is greater accountability, by ensuring that regulation is improved, and most importantly, by ensuring that we can drive forward a meaningful research effort for a series of cancers that represent by themselves a small numbers of patients, but collectively represent, as I have said, a substantial burden.
I think it's very important. And indeed, we've heard this morning that the appointment of a national speciality lead for rare cancers is achieved quickly. We've seen in other areas and domains of clinical practice the impressive results achieved through the appointment of such leadership, for instance, in the appointment of a national speciality lead for cardiovascular disease some 20 years ago, was attended by a substantial reduction in cardiovascular mortality. We've also seen the impact that such individuals can have on the research agenda.
Regulation is vitally important in incentivising innovation, and numerous reviews and assessments have determined that in many areas, our regulation is wanting. In this area, the regulation has the potential for a substantial negative impact on innovation, and it is innovative therapies that are going to improve clinical outcomes. So review of regulation is critically important. And I share the view of the noble Lord, my noble friend Lord Patel, that this three year window for delivery of that particular review of the regulatory framework appears far too long and maybe should be addressed by His Majesty's Government.
The final part of this bill is to enhance and promote the research effort. This is critically important. The mandate that the National Institute for Health Research, as part of its be part of Research initiative, establishes a special opportunities for registers for rare disease. Rare cancers is critically important. But beyond that, as we've heard from my noble friend Lord Patel, it is important that we go beyond just knowing where the patients are and providing patients with the opportunity to participate in clinical research.
The register should go beyond and provide the opportunity for appropriate genotyping and phenotyping of rare cancers as a resource to drive future research effort, and in this regard, the sharing of data within the NHS for research purposes is critically important. We saw the benefits of that during Covid, when the Secretary of State issued a copy notice which allowed for the sharing of primary care data with UK Biobank and allowed researchers, therefore, to use that important resource to identify many treatment options and a better understanding of Covid 19.
The sharing of data that will be facilitated as part of this bill is probably one of the most important elements that will drive forward the opportunity for improving clinical outcomes for those suffering from rare cancers.
11:00
Lord Blencathra (Conservative)
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Lord Blencathra (Conservative)
It's a bit. Kakkar, one of Britain's top professors of surgery, and I congratulate the noble Lady Baroness Elliott of Whitburn Bay on introducing a small but important bill, and I rise to support it, since I had a couple of run ins with council in the past, and so far I'm outrunning it. And I had my first cancer at the age of 32, two years after being elected to the House of Commons. That was a bit scary, I must tell you. But the excellent doctors at the then Westminster Hospital just round the corner, fixed that.
My Yorkshire whip visited me and said in that proper style I admire in whips a lad, you'd better not die on us. We can't afford another by election now. However, I am particularly. I'm particularly grateful to the brilliant men and women of the Royal Marsden, who topped out some nasty bits six years ago. It was not rare, cancer quite common, in fact, but kills 18,000 people per annum in the UK. Now before looking at this bill properly, my Lords, I'd assume there will be a dozen or so rare cancers, but I'm shocked to discover that over 230 different ones, affecting all ages and every part of the body, diagnosis of rare cancers can be very difficult, leading to delays, and a lot of research information is often limited to common cancers.
My Lords, in the time available, I will concentrate on clause two of the bill. Science is moving at breathtaking speed and one of the fastest innovative cancer centres in the world is the Royal Marsden Hospital in Fulham. The Marsden and its partner, the Institute of Cancer Research, are translating precision diagnostics, early phase drug development, immunotherapeutics, advanced cellular and gene therapies, and AI driven imaging and data science into patient care techniques that refine what redefine what radical treatment for rare cancer means today.
Now, the Royal Marsden Foundation NHS Foundation Trust, in partnership with the Institute of Cancer Research, is widely recognised as the leading expert on one of the top specialist cancer centres in the UK, and number and in the top four worldwide for the diagnosis, treatment and research of rare cancers. Now when we get to Committee stage, I would ideally like to amend clause two to say that we do not want to appoint a person to be known as the national speciality lead for rare cancers, since I don't think there's a single person capable of undertaking that task.
However, the Royal Marsden's record makes it uniquely qualified to lead this national effort. My Lords, it's astonishing what breakthroughs they are making. There are active programmes at the royal margins, National Institute for Health and Care and Care Research Centre, and it's the only one in the margins, the only one in the country to have that to be nominated for it. And they they're translating discoveries from the test bench into the into the bedside care right across eight translational themes. Now the Royal Marsden, as I say, is noted as Europe's largest cancer centre, whose expertise is enhanced by over 2500 cancer specialists who collaborate in weekly multidisciplinary team meetings and they develop personalised treatment plans.
My Lords, there were the first hospital in the UK to use amazing DaVinci robot with four arms, which are with microsurgical tools at the end, and they can get into the small cancer bits. Surgeons big hands cannot get into. Because if you want to see something amazing, Google search DaVinci robot and look at the demo it takes. A grape is cut in half and this robot stitches the grape together again without tearing the skin. That's why when they gave me a choice, I said, I'll have the robot operating on me, please.
And they did it quite successfully. My Lords, the hospital, the royal, the the, the Marginal Hospital Sarcoma Unit is one of the largest in Europe and a world leader in sarcoma research and treatment. And that's one, as the noble Lords surgeons present will say, that's one of the many rare cancers the marginal specialises in. In closing, my Lords, the bill's measures, especially a careful review of orphan medicinal product authorisations as in clause one, will protect the incentives that turn radical science into real cures.
And putting it simply, my Lords, if we want this bill to work, there are pointing the Royal Marsden as a speciality. Lead will give the UK the leadership, infrastructure and reach required to make the aims of the Bill a reality.
My Yorkshire whip visited me and said in that proper style I admire in whips a lad, you'd better not die on us. We can't afford another by election now. However, I am particularly. I'm particularly grateful to the brilliant men and women of the Royal Marsden, who topped out some nasty bits six years ago. It was not rare, cancer quite common, in fact, but kills 18,000 people per annum in the UK. Now before looking at this bill properly, my Lords, I'd assume there will be a dozen or so rare cancers, but I'm shocked to discover that over 230 different ones, affecting all ages and every part of the body, diagnosis of rare cancers can be very difficult, leading to delays, and a lot of research information is often limited to common cancers.
My Lords, in the time available, I will concentrate on clause two of the bill. Science is moving at breathtaking speed and one of the fastest innovative cancer centres in the world is the Royal Marsden Hospital in Fulham. The Marsden and its partner, the Institute of Cancer Research, are translating precision diagnostics, early phase drug development, immunotherapeutics, advanced cellular and gene therapies, and AI driven imaging and data science into patient care techniques that refine what redefine what radical treatment for rare cancer means today.
Now, the Royal Marsden Foundation NHS Foundation Trust, in partnership with the Institute of Cancer Research, is widely recognised as the leading expert on one of the top specialist cancer centres in the UK, and number and in the top four worldwide for the diagnosis, treatment and research of rare cancers. Now when we get to Committee stage, I would ideally like to amend clause two to say that we do not want to appoint a person to be known as the national speciality lead for rare cancers, since I don't think there's a single person capable of undertaking that task.
However, the Royal Marsden's record makes it uniquely qualified to lead this national effort. My Lords, it's astonishing what breakthroughs they are making. There are active programmes at the royal margins, National Institute for Health and Care and Care Research Centre, and it's the only one in the margins, the only one in the country to have that to be nominated for it. And they they're translating discoveries from the test bench into the into the bedside care right across eight translational themes. Now the Royal Marsden, as I say, is noted as Europe's largest cancer centre, whose expertise is enhanced by over 2500 cancer specialists who collaborate in weekly multidisciplinary team meetings and they develop personalised treatment plans.
My Lords, there were the first hospital in the UK to use amazing DaVinci robot with four arms, which are with microsurgical tools at the end, and they can get into the small cancer bits. Surgeons big hands cannot get into. Because if you want to see something amazing, Google search DaVinci robot and look at the demo it takes. A grape is cut in half and this robot stitches the grape together again without tearing the skin. That's why when they gave me a choice, I said, I'll have the robot operating on me, please.
And they did it quite successfully. My Lords, the hospital, the royal, the the, the Marginal Hospital Sarcoma Unit is one of the largest in Europe and a world leader in sarcoma research and treatment. And that's one, as the noble Lords surgeons present will say, that's one of the many rare cancers the marginal specialises in. In closing, my Lords, the bill's measures, especially a careful review of orphan medicinal product authorisations as in clause one, will protect the incentives that turn radical science into real cures.
And putting it simply, my Lords, if we want this bill to work, there are pointing the Royal Marsden as a speciality. Lead will give the UK the leadership, infrastructure and reach required to make the aims of the Bill a reality.
11:05
Lord Mott (Conservative)
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Lord Mott (Conservative)
My Lords, I would like to begin by thanking the hon. Member for Edinburgh South West for first introducing this Bill in the House of Commons and Baroness Elliott of Whitburn Bay for bringing it to the House today. Whilst I have campaigned extensively on prostate cancer, which is the most common cancer in England, it is important that all cancer patients get the treatment they need and taken as a whole, rare and less common cancers account for nearly half of all cancer diagnoses in the UK today.
As we've heard from a number of noble Lords already today, I will focus on two key areas regulation and research. The. The MH EFRA is a highly respected regulator with patient safety rightly at its core. However, rare cancers pose unique regulatory challenges that cannot always be addressed using the same evidentiary standards designed for common conditions. Patient populations are small and often geographically dispersed. Randomised controlled trials may be impractical, and real world evidence and international data become even more important.
The review of marketing authorisations for orphan drugs is therefore welcome, and it is important that we examine how much flexibility exists within the system to support innovation, including greater use of adaptive licensing, conditional approvals or role in evidence models better aligning with other jurisdictions so that data from international trials can be used here, ensuring a clear pathway for early dialogue between researchers, clinicians, regulators and patient groups so that trials are rigorous and feasible and that ultimately life saving and extending treatments can be approved as quickly as possible.
There are also challenges around research design. Traditional, traditional models of cancer research have delivered huge progress, but they are not always well suited to rare cancers, as we've heard today. By definition, rare cancers have smaller patient cohorts, meaning limited recruitment opportunities. Data may be less robust due to the smaller sample size, and the commercial market for treatments may be less attractive to investors, and the commercial market. Sorry, and the bill's emphasis on facilitating research and improving patient identification for trials is therefore critical.
But this must go hand in hand with regulatory improvement to see safe treatments quickly brought to market. I would like to briefly highlight two examples. The first has already been mentioned is glioblastoma, a rare and aggressive brain tumour. Survival rates have not improved in more than 50 years, and treatment options remain limited. Yet the nature of it means research is complex. Trials are difficult to design and patient numbers are necessarily small, making innovation improved. Trial access and regulatory flexibility essential if outcomes are ever to improve.
I also wish to briefly return to prostate cancer. Within it are rare and aggressive subtypes that behave very differently from early stage prostate cancer. Rare subtypes of common cancers like this can face challenges strikingly similar to those experienced by patients with rare with rarer diagnosis. This is not about competing for resources, but highlighting the complexity of these issues. I support this bill as one with potential to make a real difference for patients whose diseases have too often been overlooked, we need a research environment that can gather robust data, reach the right patients and be supported to develop new treatment and a regulatory framework that reflects the unique challenges that come with rare diseases.
To get safe and effective treatments approved as quickly as possible. If we get this right, we can not only improve outcomes for people with rare cancers today, but reshape how we think about evidence, regulation and fairness in healthcare for years to come.
As we've heard from a number of noble Lords already today, I will focus on two key areas regulation and research. The. The MH EFRA is a highly respected regulator with patient safety rightly at its core. However, rare cancers pose unique regulatory challenges that cannot always be addressed using the same evidentiary standards designed for common conditions. Patient populations are small and often geographically dispersed. Randomised controlled trials may be impractical, and real world evidence and international data become even more important.
The review of marketing authorisations for orphan drugs is therefore welcome, and it is important that we examine how much flexibility exists within the system to support innovation, including greater use of adaptive licensing, conditional approvals or role in evidence models better aligning with other jurisdictions so that data from international trials can be used here, ensuring a clear pathway for early dialogue between researchers, clinicians, regulators and patient groups so that trials are rigorous and feasible and that ultimately life saving and extending treatments can be approved as quickly as possible.
There are also challenges around research design. Traditional, traditional models of cancer research have delivered huge progress, but they are not always well suited to rare cancers, as we've heard today. By definition, rare cancers have smaller patient cohorts, meaning limited recruitment opportunities. Data may be less robust due to the smaller sample size, and the commercial market for treatments may be less attractive to investors, and the commercial market. Sorry, and the bill's emphasis on facilitating research and improving patient identification for trials is therefore critical.
But this must go hand in hand with regulatory improvement to see safe treatments quickly brought to market. I would like to briefly highlight two examples. The first has already been mentioned is glioblastoma, a rare and aggressive brain tumour. Survival rates have not improved in more than 50 years, and treatment options remain limited. Yet the nature of it means research is complex. Trials are difficult to design and patient numbers are necessarily small, making innovation improved. Trial access and regulatory flexibility essential if outcomes are ever to improve.
I also wish to briefly return to prostate cancer. Within it are rare and aggressive subtypes that behave very differently from early stage prostate cancer. Rare subtypes of common cancers like this can face challenges strikingly similar to those experienced by patients with rare with rarer diagnosis. This is not about competing for resources, but highlighting the complexity of these issues. I support this bill as one with potential to make a real difference for patients whose diseases have too often been overlooked, we need a research environment that can gather robust data, reach the right patients and be supported to develop new treatment and a regulatory framework that reflects the unique challenges that come with rare diseases.
To get safe and effective treatments approved as quickly as possible. If we get this right, we can not only improve outcomes for people with rare cancers today, but reshape how we think about evidence, regulation and fairness in healthcare for years to come.
11:09
Baroness Grey-Thompson (Crossbench)
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Baroness Grey-Thompson (Crossbench)
I'd like to. >> Or bringing this bill to your Lordships chamber today, and also pay tribute to two members of our Lordships chamber who are no longer Lordships chamber who are no longer with us. Baroness McDonagh, Baroness Jowell, who both had a huge impact on my own career. For about the last year I've been working with Kerry and Frances Davis and their campaign to highlight the challenges that face families who have a terminally ill child. Their website, It's Never You, clearly highlights many of the issues their son, Hugh had rhabdomyosarcoma, a rare cancer affecting muscles attached to bone which spread throughout his abdomen.
He was diagnosed in late 2020 and passed away in September 2021 at the age of six after undergoing intensive treatment, including radiotherapy. His parents described receiving the diagnosis as being thrown into an ice bath, having a concrete weight tied around your feet and the trauma that they experienced. With my work with them. I have an amendment in the Children's Wellbeing in Schools Bill, which may be debated on Monday, which asks for more research to find the true extent and impact that rare cancers have on families.
And it seeks to require the Secretary of State to report to Parliament on the barriers preventing parents being at the bedside of critically ill children. While the Journal of Paediatric Psychology and The Lancet Psychiatry has said that 30 to 50% of parents with critically ill children meet the diagnostic threshold for PD, the BMJ open has said that parents are more likely to experience anxiety, depression and suicidal thoughts. A mothers have a 50% increase in mortality and while there's no current target for research or funding allocation to be spent on paediatric cancer research, it appears that only 3% of current spend the national spend is is put in this area because it's rare, but we've heard it in your Lordships chamber today that these cancers are far from rare.
We have to be look beyond seeing it as a market to how we can truly help people. So I would like to see a minimum annual research target that is set for rare childhood cancers, and that the progress is published. My Lords, I strongly support this bill, especially the creation of the National Speciality Lead, and I hope that we can do that at pace, because the impact of this bill will be felt by so many, not just those with a cancer diagnosis, but their families as well.
And we've heard that a number of organisations that support this bill. Cancer research UK and others have highlighted how many fewer treatment options there are for those with rare cancers and also brain cancer. Patients have been in touch with me to say that they need far more support. My Lords, this week, Kerry and Francis Mini Davis hosted an event in Parliament and they now campaign under the banner Parents Deserve Better. My Lords, yes they do and this bill will help with that.
He was diagnosed in late 2020 and passed away in September 2021 at the age of six after undergoing intensive treatment, including radiotherapy. His parents described receiving the diagnosis as being thrown into an ice bath, having a concrete weight tied around your feet and the trauma that they experienced. With my work with them. I have an amendment in the Children's Wellbeing in Schools Bill, which may be debated on Monday, which asks for more research to find the true extent and impact that rare cancers have on families.
And it seeks to require the Secretary of State to report to Parliament on the barriers preventing parents being at the bedside of critically ill children. While the Journal of Paediatric Psychology and The Lancet Psychiatry has said that 30 to 50% of parents with critically ill children meet the diagnostic threshold for PD, the BMJ open has said that parents are more likely to experience anxiety, depression and suicidal thoughts. A mothers have a 50% increase in mortality and while there's no current target for research or funding allocation to be spent on paediatric cancer research, it appears that only 3% of current spend the national spend is is put in this area because it's rare, but we've heard it in your Lordships chamber today that these cancers are far from rare.
We have to be look beyond seeing it as a market to how we can truly help people. So I would like to see a minimum annual research target that is set for rare childhood cancers, and that the progress is published. My Lords, I strongly support this bill, especially the creation of the National Speciality Lead, and I hope that we can do that at pace, because the impact of this bill will be felt by so many, not just those with a cancer diagnosis, but their families as well.
And we've heard that a number of organisations that support this bill. Cancer research UK and others have highlighted how many fewer treatment options there are for those with rare cancers and also brain cancer. Patients have been in touch with me to say that they need far more support. My Lords, this week, Kerry and Francis Mini Davis hosted an event in Parliament and they now campaign under the banner Parents Deserve Better. My Lords, yes they do and this bill will help with that.
11:12
Lord Polak (Conservative)
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Lord Polak (Conservative)
My daughter. friend, the noble Lady Baroness Grey-Thompson, if I may just turn to the Lord O'Shaughnessy, who reminded us of that day. And I was sitting here, and that special day when Tessa Jowell spoke. But if I can add, and I think this is what Lord Blunkett was, was trying to say, that he the Lord O'Shaughnessy he he replied in that difficult moment with sympathy, with empathy and dignity. And I will always remember that too. I register interest. I am the vice chairman of the all party group for brain tumours, and I was diagnosed with a brain tumour back in 1988, and I'm one of the lucky ones.
And following the words of Lord Patel and I understand his bravery and his pain, many patients are unaware that tumour tissue removed during surgery may be used for diagnostic refinement, research and the development of future treatments, and that patients have choices about how that tissue is stored. This is acute in brain cancers and other rare cancers, where diagnosis is devastating, treatment is urgent, and patients and their families face complex decisions at moments of extreme distress. So in following in the forthcoming cancer plan, I believe there should be one a commitment to improving public and patient awareness of consent, including for tissue use in research, a commitment to clear and consistent national messaging developed with patients and carers about how consent can work, and a commitment to find ways so that the public can give advanced information.
Digital in advance. Informed consent, rather than at that moment of crisis. And let me pay tribute to the professor Katrina Kurian, Professor of Neuropathology at University of Bristol Medical School. She has advised me she is a friend and sadly some months ago she lost her own husband to brain cancer. And finally, earlier this week, I also had the privilege of meeting two courageous young men, Tom Riley and Dan Horrocks. My noble friend Lord Bourne has just spoken beautifully about Dan, both of them suffering from brain cancer.
But rather than just suffer, what they've done is they set up a grassroots organisation called Brain Cancer Justice, a movement of patients and families living with the consequences of, as they describe, under research, fragmented trials and a lack of accountability. They agreed that whilst the bill in itself is modest, it is, however, essential and I congratulate Doctor Scott, Arthur MP and the noble Lady Baroness Elliott and thank them for their leadership. My Lords, the Bill provides that leadership that will improve access to clinical trials and tests, whether the incentives for rare cancer medicines are indeed fit for purpose.
And I am honoured to support this Bill. But I urge the Minister to find a way to get it on the statute book as quickly as possible.
And following the words of Lord Patel and I understand his bravery and his pain, many patients are unaware that tumour tissue removed during surgery may be used for diagnostic refinement, research and the development of future treatments, and that patients have choices about how that tissue is stored. This is acute in brain cancers and other rare cancers, where diagnosis is devastating, treatment is urgent, and patients and their families face complex decisions at moments of extreme distress. So in following in the forthcoming cancer plan, I believe there should be one a commitment to improving public and patient awareness of consent, including for tissue use in research, a commitment to clear and consistent national messaging developed with patients and carers about how consent can work, and a commitment to find ways so that the public can give advanced information.
Digital in advance. Informed consent, rather than at that moment of crisis. And let me pay tribute to the professor Katrina Kurian, Professor of Neuropathology at University of Bristol Medical School. She has advised me she is a friend and sadly some months ago she lost her own husband to brain cancer. And finally, earlier this week, I also had the privilege of meeting two courageous young men, Tom Riley and Dan Horrocks. My noble friend Lord Bourne has just spoken beautifully about Dan, both of them suffering from brain cancer.
But rather than just suffer, what they've done is they set up a grassroots organisation called Brain Cancer Justice, a movement of patients and families living with the consequences of, as they describe, under research, fragmented trials and a lack of accountability. They agreed that whilst the bill in itself is modest, it is, however, essential and I congratulate Doctor Scott, Arthur MP and the noble Lady Baroness Elliott and thank them for their leadership. My Lords, the Bill provides that leadership that will improve access to clinical trials and tests, whether the incentives for rare cancer medicines are indeed fit for purpose.
And I am honoured to support this Bill. But I urge the Minister to find a way to get it on the statute book as quickly as possible.
11:15
Lord Mendelsohn (Labour)
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Lord Mendelsohn (Labour)
My Lords, I'd like to thank and congratulate Baroness Elliott of Whitburn Bay for bringing this into this House and for being able to get all of us in this chamber, to be able to focus on these issues. And we've heard from a number of colleagues here about their own personal stories, people they know, and, of course, those we admire. I think today of my dear friend, the former member for Alderman Phil Willis, who today is challenging, you know, and fighting for his life against one of these terrible cancers that we face.
I just wanted to declare my interest. I am the trustee and director of the Follicular Lymphoma Foundation, the UK arm, the US arm and the Israel arm. It's an international charity established to try and find a cure for follicular lymphoma. Because my real declaration of interest is my wife suffers from this cancer and incurable cancer, but a chronically treatable cancer. And so she, being the dynamic person that she is, decided, having been convinced by some brilliant researchers here that we were on the cusp of the potential for curative options to set up a foundation to do so.
And we have done and we have done so. She was diagnosed in 2016, started treatment in 2018, curtailed during Covid. She's in remission, but it will come back at some point. And I am very pleased to say that a huge amount of progress has been made. And whereas there was only one option for the next line of therapy, there are now a considerable number. The thing that I am disappointed about is that most of those are available outside the UK and not in the UK, so if she's to be treated in the most effective way, it cannot be currently in the UK.
I hope that will change by the time her condition comes back, because this is the point that I really want to get across about where we are. The the, the bill raises the importance of research and focuses us on rare cancers. And we do run by some traditional notions that these things are becoming, you know, have inherent difficulties and challenges which are not changing with times. They are, in the case of follicular lymphoma, advances that we can make in the research and the pursuit of a cure will certainly be contributory factors to helping 32 other cancers, which have very significant genetic sharing with the condition that we're focusing on the use of data, other sorts of things, the sorts of stuff that used to make these things really difficult now are reasons why the opportunity in science is so large, and that is why we can really look to the future at this moment, as a wonderful moment of opportunity where we can cure some of these cancers, not by, in most cases, one silver bullet by a variety of treatments and different modalities.
And here is why the bill is so essential. And not just the bill, but its support and its and its commitment by government is because we are a great country with great clinical practitioners and researchers. The noble Lord Kakkar is a perfect illustration. The noble Lord Darzi. We have got some of the finest. We've got great institutions, we've got a great history behind this, we've got scale and we've got opportunities not fully tapped with the NHS, but we are falling behind because of things that we're not doing in research, actually in culture, because of the consequences of the lack of research money from Brexit and others, even with philanthropy and capital.
And it is hard for us to apply the money that we could in the UK, and we apply much more money in other places outside that, including countries which have got public policy supporting this, because it is easier to do so, especially in areas of rare cancers. So this is so important to make progress on this. And for someone who is committed to doing as best as we can here, it pains me when we have rounds of funding where we are not giving to the UK, we are in other places or even where countries of smaller population where data is so important, we use for a place like Israel, which is able to scale what it's got in a way that we can't.
We are the country that should be at the lead of this. But finally, I just want to turn to the point. Car-T is a key therapy for us. It will be a transformational therapy for so many cancers. And the problem we have in this country is that we are reliant on trials and we are not using it as a treatment. And it's not just that Charlotte, a patient suffering from it that I know, who was told this will be the next line of therapy.
It is no longer available even at King's, one of our great institutions, which can't even recruit people for it. Because the real challenge here is that we have to send out these samples to another country to get them done, whereas in other countries they have labs in the hospitals which do these treatments. If we just focus on not applying the best that we can do, supporting the research, but getting it into treatment so that we have the right relationship with pharma and biotech, we will restrict ourselves.
This bill is a start. We have to support it.
I just wanted to declare my interest. I am the trustee and director of the Follicular Lymphoma Foundation, the UK arm, the US arm and the Israel arm. It's an international charity established to try and find a cure for follicular lymphoma. Because my real declaration of interest is my wife suffers from this cancer and incurable cancer, but a chronically treatable cancer. And so she, being the dynamic person that she is, decided, having been convinced by some brilliant researchers here that we were on the cusp of the potential for curative options to set up a foundation to do so.
And we have done and we have done so. She was diagnosed in 2016, started treatment in 2018, curtailed during Covid. She's in remission, but it will come back at some point. And I am very pleased to say that a huge amount of progress has been made. And whereas there was only one option for the next line of therapy, there are now a considerable number. The thing that I am disappointed about is that most of those are available outside the UK and not in the UK, so if she's to be treated in the most effective way, it cannot be currently in the UK.
I hope that will change by the time her condition comes back, because this is the point that I really want to get across about where we are. The the, the bill raises the importance of research and focuses us on rare cancers. And we do run by some traditional notions that these things are becoming, you know, have inherent difficulties and challenges which are not changing with times. They are, in the case of follicular lymphoma, advances that we can make in the research and the pursuit of a cure will certainly be contributory factors to helping 32 other cancers, which have very significant genetic sharing with the condition that we're focusing on the use of data, other sorts of things, the sorts of stuff that used to make these things really difficult now are reasons why the opportunity in science is so large, and that is why we can really look to the future at this moment, as a wonderful moment of opportunity where we can cure some of these cancers, not by, in most cases, one silver bullet by a variety of treatments and different modalities.
And here is why the bill is so essential. And not just the bill, but its support and its and its commitment by government is because we are a great country with great clinical practitioners and researchers. The noble Lord Kakkar is a perfect illustration. The noble Lord Darzi. We have got some of the finest. We've got great institutions, we've got a great history behind this, we've got scale and we've got opportunities not fully tapped with the NHS, but we are falling behind because of things that we're not doing in research, actually in culture, because of the consequences of the lack of research money from Brexit and others, even with philanthropy and capital.
And it is hard for us to apply the money that we could in the UK, and we apply much more money in other places outside that, including countries which have got public policy supporting this, because it is easier to do so, especially in areas of rare cancers. So this is so important to make progress on this. And for someone who is committed to doing as best as we can here, it pains me when we have rounds of funding where we are not giving to the UK, we are in other places or even where countries of smaller population where data is so important, we use for a place like Israel, which is able to scale what it's got in a way that we can't.
We are the country that should be at the lead of this. But finally, I just want to turn to the point. Car-T is a key therapy for us. It will be a transformational therapy for so many cancers. And the problem we have in this country is that we are reliant on trials and we are not using it as a treatment. And it's not just that Charlotte, a patient suffering from it that I know, who was told this will be the next line of therapy.
It is no longer available even at King's, one of our great institutions, which can't even recruit people for it. Because the real challenge here is that we have to send out these samples to another country to get them done, whereas in other countries they have labs in the hospitals which do these treatments. If we just focus on not applying the best that we can do, supporting the research, but getting it into treatment so that we have the right relationship with pharma and biotech, we will restrict ourselves.
This bill is a start. We have to support it.
11:21
Lord Randall of Uxbridge (Conservative)
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Lord Randall of Uxbridge (Conservative)
So I'm humbled to be following >> So I'm humbled to be following the honourable Lord Mendelsohn and indeed previous contributions. I indeed previous contributions. I don't know much about all this, and that's you might wonder why I'm speaking in this, because it seemed to me to be something for people who've got knowledge, specialities, personal experiences. But the reason is, and I congratulate the noble Lady Baroness Elliott of Whitburn Bay and indeed the Member of Parliament, Doctor Scott Arthur MP.
I have had two, I'll say, former constituents. One is Councillor Becky Hagar, who's a former mayor of Hillingdon, who has had sadly, her husband passed away through this. But she set up the Hillingdon Brain Tumour and Injury Group. And another Hillingdon resident who's been in constant communication with me in such a kind way, considering her son is going through terrible treatment, as far as I can see. So I asked her, I said I'm going to speak in it because I want to give support.
I'm not an expert. I just want to know that people have my support. And I asked her what was the I said, we've got four minutes. And I said, what is the most important thing to say? And she said, appointing a national speciality lead us along with brain cancer justice. They want to have this national cancer as an essential element of this bill. And she talking about brain tumours. But I know there are more. But the complexity of brain tumours and it's vital, she says, that the government appointee fully understands brain and other rare cancers to prevent them from being overlooked, especially since brain cancer remains the leading cause of cancer related deaths among children and people under 40.
An immediate nomination and appointment are urgently needed as patients can't afford to wait, this should be a top priority integrated into the National Cancer Plan, and data shows that while 20% of research funding goes to rare cancers, they account for around 40% of cancer deaths. So given their complexity, brain cancers must not be overlooked. When the UK government launches initiatives like the NHS National Cancer Vaccine Launch Pad. What I would just say to noble Lords here is that we have to have also awareness campaigns.
I think there's a the fact that most of these people very often just present to A&E, they just as an emergency and like 40 to 60% of diagnoses are done after presenting to A&E. But what I would say is, and we've heard from other noble Lords previously, and presumably after me, there's two things I would say is the urgency of this. And I would urge my noble friend not to put any amendments down. No, noble Lord, noble friend, not to put any amendments down.
If it makes this go longer than we would like. And we know how it works. We've always seen these private member's bills. And I would say the other thing that comes through plainly is hope. As we've been speaking, no doubt there are people throughout the country who have been just given a very devastating prognosis as we speak. We don't know where it is. It could be amongst us here, but certainly there will be some. And this bill, as far as I can say, may not the answer, be but it will give hope.
So I give it my full support.
I have had two, I'll say, former constituents. One is Councillor Becky Hagar, who's a former mayor of Hillingdon, who has had sadly, her husband passed away through this. But she set up the Hillingdon Brain Tumour and Injury Group. And another Hillingdon resident who's been in constant communication with me in such a kind way, considering her son is going through terrible treatment, as far as I can see. So I asked her, I said I'm going to speak in it because I want to give support.
I'm not an expert. I just want to know that people have my support. And I asked her what was the I said, we've got four minutes. And I said, what is the most important thing to say? And she said, appointing a national speciality lead us along with brain cancer justice. They want to have this national cancer as an essential element of this bill. And she talking about brain tumours. But I know there are more. But the complexity of brain tumours and it's vital, she says, that the government appointee fully understands brain and other rare cancers to prevent them from being overlooked, especially since brain cancer remains the leading cause of cancer related deaths among children and people under 40.
An immediate nomination and appointment are urgently needed as patients can't afford to wait, this should be a top priority integrated into the National Cancer Plan, and data shows that while 20% of research funding goes to rare cancers, they account for around 40% of cancer deaths. So given their complexity, brain cancers must not be overlooked. When the UK government launches initiatives like the NHS National Cancer Vaccine Launch Pad. What I would just say to noble Lords here is that we have to have also awareness campaigns.
I think there's a the fact that most of these people very often just present to A&E, they just as an emergency and like 40 to 60% of diagnoses are done after presenting to A&E. But what I would say is, and we've heard from other noble Lords previously, and presumably after me, there's two things I would say is the urgency of this. And I would urge my noble friend not to put any amendments down. No, noble Lord, noble friend, not to put any amendments down.
If it makes this go longer than we would like. And we know how it works. We've always seen these private member's bills. And I would say the other thing that comes through plainly is hope. As we've been speaking, no doubt there are people throughout the country who have been just given a very devastating prognosis as we speak. We don't know where it is. It could be amongst us here, but certainly there will be some. And this bill, as far as I can say, may not the answer, be but it will give hope.
So I give it my full support.
11:24
Lord St John of Bletso (Crossbench)
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Lord St John of Bletso (Crossbench)
Yes. >> The noble Baroness Elliott of Whitburn Bay for introducing this very worthwhile bill which has cross-party support. I should declare a personal interest and I was diagnosed with lung cancer last year. It was early stage lung year. It was early stage lung cancer and as the noble Lord Lord Blencathra said, I was treated with the Da Vinci robot, which was highly successful. But the statistics are alarming. As other noble Lords have mentioned, rare cancers account for up to 47% of all diagnosis and sadly, 55% of all deaths.
And we often speak of the battle against cancer in monolithic terms. If it was a single enemy to be defeated. But the reality is it is a war fought on a thousand different fronts. As we're all aware, pharmaceutical companies are profit driven enterprises. When a cancer affects only a small number of patients, the potential revenue cannot justify the enormous cost of drug development. And it means, sadly, that patients with rare cancers are often left behind not because treatments are impossible, but because they are not profitable.
The less survivable cancers, which include many rare cancers which are noble Lord O'Shaughnessy very aptly was describing about the challenges of brain cancer. But it's also pancreatic cancer and liver cancer. They only receive 19% of research funding, and when markets fail, it is the responsibility and duty of government to step in. Now, I was interested to see that the US Orphan Drug Act of 1983 was highly effective in America in dramatically increasing orphan drug approvals, but concerned that way back in 2013, the UK was ranked second in the orphan drug availability, but in last year it was ranked 11th.
I welcome the fact that this bill will provide accountability through a named responsible lead, as well as a review of orphan drug regulations to identify improvements, and the review would be an opportunity to ask what we can do better. This review in this bill would also improve our research infrastructure by ensuring that patient data from across the UK is shared and accessible for clinical trials and for diseases. This rare every patient counts. Connecting researchers with eligible patients is a fundamental barrier that this bill will help to dismantle, and it's encouraging that the bill has the support of so many notable charities in the cancer space.
And it calls essentially for a review rather than a prescriptive change. So as the noble Lord, my noble friend Lord Patel mentioned, we are seeing huge advances in genomics, creating more targeted treatments of rare conditions. In conclusion, this bill is not a panacea. It is a starting point. It does not in itself solve the complex and contentious issue of nice appraisals or the affordability of these high cost medicines. It creates the conditions for new treatments to be developed.
It provides the framework for that intervention. It is a modest. It is a sensible and pragmatic proposal, and I wish it a speedy access.
And we often speak of the battle against cancer in monolithic terms. If it was a single enemy to be defeated. But the reality is it is a war fought on a thousand different fronts. As we're all aware, pharmaceutical companies are profit driven enterprises. When a cancer affects only a small number of patients, the potential revenue cannot justify the enormous cost of drug development. And it means, sadly, that patients with rare cancers are often left behind not because treatments are impossible, but because they are not profitable.
The less survivable cancers, which include many rare cancers which are noble Lord O'Shaughnessy very aptly was describing about the challenges of brain cancer. But it's also pancreatic cancer and liver cancer. They only receive 19% of research funding, and when markets fail, it is the responsibility and duty of government to step in. Now, I was interested to see that the US Orphan Drug Act of 1983 was highly effective in America in dramatically increasing orphan drug approvals, but concerned that way back in 2013, the UK was ranked second in the orphan drug availability, but in last year it was ranked 11th.
I welcome the fact that this bill will provide accountability through a named responsible lead, as well as a review of orphan drug regulations to identify improvements, and the review would be an opportunity to ask what we can do better. This review in this bill would also improve our research infrastructure by ensuring that patient data from across the UK is shared and accessible for clinical trials and for diseases. This rare every patient counts. Connecting researchers with eligible patients is a fundamental barrier that this bill will help to dismantle, and it's encouraging that the bill has the support of so many notable charities in the cancer space.
And it calls essentially for a review rather than a prescriptive change. So as the noble Lord, my noble friend Lord Patel mentioned, we are seeing huge advances in genomics, creating more targeted treatments of rare conditions. In conclusion, this bill is not a panacea. It is a starting point. It does not in itself solve the complex and contentious issue of nice appraisals or the affordability of these high cost medicines. It creates the conditions for new treatments to be developed.
It provides the framework for that intervention. It is a modest. It is a sensible and pragmatic proposal, and I wish it a speedy access.
11:28
Lord Moylan (Conservative)
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Lord Moylan (Conservative)
Here are. >> My Lords. It's a privilege to speak after my old friend, the noble Lord Lord St John of Bletso. I declare an interest as an officer of the Appg on Less Survivable Cancers, which is a term that is more or less interchangeable with rare cancers as used in relation to this bill. I want to take this opportunity to thank the wonderful young people who work for the Less Survivable Cancers Taskforce, which stands behind the Appg and brings together so many of the charities that work.
For example, Pancreatic Cancer UK, which has been mentioned before, brain tumour, cancers, charities and so forth. To try and and achieve something on this front. The timing, although we have waited, as my noble friend Lady Browning said a long time for this Second Reading, the timing is in fact quite apposite because this is less survivable. Cancers Awareness Week and I think we are contributing to that as much as anything else. I also want to declare that, like other noble Lords, I mean, I am survivor until now of a less survivable cancer.
Having been diagnosed with terminal oesophageal cancer two and a half years ago, which, remarkably, has been in complete metabolic remission for most of the last two years, I want to congratulate, of course, Doctor Scott Arthur and the noble Baroness, Lady Elliot of Whitburn Bay, for introducing the bill. I want to make only two points, really, and the first is I want to depart slightly from the noble Lord Lord St John of Bletso in raising a tone of criticism, a word of criticism of of what we might call Big Pharma.
In my case, the immunotherapy drug that I think was probably crucial in achieving my recovery was in fact developed for breast cancer. Breast cancer is, of course, a cancer which is profitable for the pharmaceutical company. So they have developed some some wonderful drugs. But NE cancer, my cancer is part of a group of cancers that have come under the heading of NE cancers. Je NE cancer oncologists have adapted it and used it and taken it to to treat oesophageal cancer and other cancers of that sort.
And so I think we must be careful of shunning the big pharmaceutical companies. They are the source of much of the innovation, and it's a staggering pace of innovation that we're seeing that was mentioned by the noble Lord, Lord Mendelsohn. And I think it's up to us to work with them and to see, to get the best out of them as far as we possibly can. The second point I want to make is that it is easy to think that these cancers have suffered from a sort of casual neglect, that we just haven't bothered with them or put enough money into them.
In fact, they do present very acute difficulties of their own as far as
**** Possible New Speaker ****
research is concerned. If people diagnosed with one of the less survivable cancers tend to the less survivable cancers tend to die very quickly, many of them have very short survival periods and very short survival periods and conducting trials with patients who do not have, who are dying very do not have, who are dying very fast, if I may say, is very, very difficult, very difficult to construct a trial which gives you construct a trial which gives you the result that you want.
Now, I think that's the sort of thing that the I have a great hope in the national lead for rare cancers being appointed here, the right person can make a real difference in pulling things together so that we can get some trials going for these cancers that could produce statistically valuable results. I've got great hope for that. The other thing we should be doing, if I may say so, is ensuring that the transition from diagnosis to treatment is very, very rapid.
That is something that doesn't require research. It is in our hands already because it's essentially an organisational matter. I just conclude by saying that the if you are presented suddenly as usually a sudden, a sudden event, you're suddenly presented with a cancer diagnosis and that you're told you're facing death in a year or so short period ahead. You want to know the government and the state is on your side. This sort of bill, this bill is a good example of of government showing that they're on the side of people facing very difficult circumstances.
Yeah.
For example, Pancreatic Cancer UK, which has been mentioned before, brain tumour, cancers, charities and so forth. To try and and achieve something on this front. The timing, although we have waited, as my noble friend Lady Browning said a long time for this Second Reading, the timing is in fact quite apposite because this is less survivable. Cancers Awareness Week and I think we are contributing to that as much as anything else. I also want to declare that, like other noble Lords, I mean, I am survivor until now of a less survivable cancer.
Having been diagnosed with terminal oesophageal cancer two and a half years ago, which, remarkably, has been in complete metabolic remission for most of the last two years, I want to congratulate, of course, Doctor Scott Arthur and the noble Baroness, Lady Elliot of Whitburn Bay, for introducing the bill. I want to make only two points, really, and the first is I want to depart slightly from the noble Lord Lord St John of Bletso in raising a tone of criticism, a word of criticism of of what we might call Big Pharma.
In my case, the immunotherapy drug that I think was probably crucial in achieving my recovery was in fact developed for breast cancer. Breast cancer is, of course, a cancer which is profitable for the pharmaceutical company. So they have developed some some wonderful drugs. But NE cancer, my cancer is part of a group of cancers that have come under the heading of NE cancers. Je NE cancer oncologists have adapted it and used it and taken it to to treat oesophageal cancer and other cancers of that sort.
And so I think we must be careful of shunning the big pharmaceutical companies. They are the source of much of the innovation, and it's a staggering pace of innovation that we're seeing that was mentioned by the noble Lord, Lord Mendelsohn. And I think it's up to us to work with them and to see, to get the best out of them as far as we possibly can. The second point I want to make is that it is easy to think that these cancers have suffered from a sort of casual neglect, that we just haven't bothered with them or put enough money into them.
In fact, they do present very acute difficulties of their own as far as
**** Possible New Speaker ****
research is concerned. If people diagnosed with one of the less survivable cancers tend to the less survivable cancers tend to die very quickly, many of them have very short survival periods and very short survival periods and conducting trials with patients who do not have, who are dying very do not have, who are dying very fast, if I may say, is very, very difficult, very difficult to construct a trial which gives you construct a trial which gives you the result that you want.
Now, I think that's the sort of thing that the I have a great hope in the national lead for rare cancers being appointed here, the right person can make a real difference in pulling things together so that we can get some trials going for these cancers that could produce statistically valuable results. I've got great hope for that. The other thing we should be doing, if I may say so, is ensuring that the transition from diagnosis to treatment is very, very rapid.
That is something that doesn't require research. It is in our hands already because it's essentially an organisational matter. I just conclude by saying that the if you are presented suddenly as usually a sudden, a sudden event, you're suddenly presented with a cancer diagnosis and that you're told you're facing death in a year or so short period ahead. You want to know the government and the state is on your side. This sort of bill, this bill is a good example of of government showing that they're on the side of people facing very difficult circumstances.
Yeah.
11:34
Lord Freyberg (Crossbench)
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Lord Freyberg (Crossbench)
My Lords, this bill touches a matter close to my heart and which I've worked for on and off for over I've worked for on and off for over a decade since my sister Annabelle fell ill with mesothelioma in 2012. fell ill with mesothelioma in 2012. And her daughter, my niece blossom, died of neuroblastoma a few years earlier. While survival in common cancers has improved over time, progress has been limited in less common cancers, as we've heard, and almost negligible in rare cancers, reflected the limited research funding available for these awful diseases.
As a result, this bill has my full support and I would like to thank both sponsors for taking this bill through both houses. Being an enabling bill, I thought it would be most useful to share lessons learnt over that time. Including the risks policymakers must navigate in its delivery and possible role of new technology, and our return to Horizon Europe to accelerate the delivery of benefits to patients with rare cancer from any new funding. Firstly, these cancers and other neglected diseases like chronic fatigue syndrome and long Covid face a structural catch 22.
With no historic research funding. They have limited research capability when there are few brave clinicians try to secure funding, they compete against academics in well-funded areas with resulting strong citation track records. As a result, they cannot compete and fail to get funding, perpetuating the cycle. UQ and I are loathe to create disease dedicated funding streams in case scientific quality falls and citations per R&D pound invested drops a solution to this catch 22 must be found. Perhaps RNAi UK RNAi could bundle all these neglected diseases together, which would maintain competition and so scientific quality, but on a much fairer basis.
I would urge Ministers to direct research funders to explore the merits of such a scheme. Secondly, the fastest way to save lives is care quality improvement. As the Nobel, noble and Lord O'Shaughnessy and Lord Kakkar and Lord St John and others have have rightly drawn attention to. While the UK has great data for such analysis, we fail to put its insights rapidly into the hands of clinicians who can use it. For instance, there are recurring delays in processing of pathology reports for the national cancer surgery audits, driven by the need to manually process significant volumes of unstructured data.
Norway has automated this process, and this seems mostly a matter of appropriate technology deployment. Perhaps Baroness Blackwood, in her new role as chair of the Health Data Research Service, could help expedite such a change. Finally, we all know that the UK's cancer outcomes lag those of our European peers. I would like to commend to noble Lords the amazing programme of the cancer in Leeds Teaching Hospital called atom Cat, using privacy conservation technology, they have developed a way for an international consortium of hospitals to rapidly compare clinical practice that provides direct exposure for UK clinicians to learnings in better performing peer countries.
So accelerating UK cancer care improvement, careful design of the planned investments in health data can allow such safe digital comparison not only between our four great nations, but with our European peers. Essential scientifically in these cancers given their rarity. Now that we are back in horizon, such investment would also position our digital researchers to compete for and secure European funding. I wish this bill a speedy passage. Hold on.
As a result, this bill has my full support and I would like to thank both sponsors for taking this bill through both houses. Being an enabling bill, I thought it would be most useful to share lessons learnt over that time. Including the risks policymakers must navigate in its delivery and possible role of new technology, and our return to Horizon Europe to accelerate the delivery of benefits to patients with rare cancer from any new funding. Firstly, these cancers and other neglected diseases like chronic fatigue syndrome and long Covid face a structural catch 22.
With no historic research funding. They have limited research capability when there are few brave clinicians try to secure funding, they compete against academics in well-funded areas with resulting strong citation track records. As a result, they cannot compete and fail to get funding, perpetuating the cycle. UQ and I are loathe to create disease dedicated funding streams in case scientific quality falls and citations per R&D pound invested drops a solution to this catch 22 must be found. Perhaps RNAi UK RNAi could bundle all these neglected diseases together, which would maintain competition and so scientific quality, but on a much fairer basis.
I would urge Ministers to direct research funders to explore the merits of such a scheme. Secondly, the fastest way to save lives is care quality improvement. As the Nobel, noble and Lord O'Shaughnessy and Lord Kakkar and Lord St John and others have have rightly drawn attention to. While the UK has great data for such analysis, we fail to put its insights rapidly into the hands of clinicians who can use it. For instance, there are recurring delays in processing of pathology reports for the national cancer surgery audits, driven by the need to manually process significant volumes of unstructured data.
Norway has automated this process, and this seems mostly a matter of appropriate technology deployment. Perhaps Baroness Blackwood, in her new role as chair of the Health Data Research Service, could help expedite such a change. Finally, we all know that the UK's cancer outcomes lag those of our European peers. I would like to commend to noble Lords the amazing programme of the cancer in Leeds Teaching Hospital called atom Cat, using privacy conservation technology, they have developed a way for an international consortium of hospitals to rapidly compare clinical practice that provides direct exposure for UK clinicians to learnings in better performing peer countries.
So accelerating UK cancer care improvement, careful design of the planned investments in health data can allow such safe digital comparison not only between our four great nations, but with our European peers. Essential scientifically in these cancers given their rarity. Now that we are back in horizon, such investment would also position our digital researchers to compete for and secure European funding. I wish this bill a speedy passage. Hold on.
11:38
Lord Blunkett (Labour)
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Lord Blunkett (Labour)
Almost four minutes. I'd like to apologise to the House for my premature and ill timed premature and ill timed intervention. I'm after ten years in the House, I need to go back and sharply revise my understanding of procedure. I'm grateful to the House for the opportunity of being able to intervene. I'm emotionally moved today by two things. Firstly, by two of my most longstanding and closest friends, both of whom are married couple, both of whom were diagnosed with different cancers in the autumn and are now supporting and caring for themselves.
And secondly, by Lord O'Shaughnessy timely intervention and reminder of the very powerful final speech of my long standing friend, Baroness Tessa Jowell in this House. And I would like to thank Lord O'Shaughnessy for his part in carrying that legacy forward and the important concentration on research. I only wanted to do two things. One was to congratulate my noble friend Baroness Elliott on taking this forward into hope that in the next three months we can we can get Royal assent.
But secondly, just to add one point, and that is that rare cancers sometimes morph into being much less rare. And the more we can do to examine those so-called rare cancers, the more likely we are to be able to intervene early and to prevent developments which would otherwise lead to death. And if we can do that, then that early understanding of their development and the ability to be able to save people in the future will be much more likely in the past.
And I'm very grateful for the mention of oesophageal cancer this morning. In the past, oesophageal cancer was a rare cancer. People would sometimes ill diagnosed, wrongly diagnosed with stomach cancer, but it was relatively rare. No longer, sadly, and I'm recalling my very good friend Lord Bob Kerslake, who of course was from and remained in Sheffield, who died from oesophageal cancer not so long ago. Today we have the opportunity of turning the spotlight on those rare cancers which affect a very large number of people and in some cases may affect greater numbers in years to come as environmental, societal and dietary changes have their
**** Possible New Speaker ****
impact. Thank you for the opportunity of intervening here. Here.
**** Possible New Speaker ****
Here. My Lords, first of all, I must thank the sponsors of this Bill and thank the sponsors of this Bill and congratulate Baroness Elliot. And when she spoke of breakthroughs, which is which is a very important, which is which is a very important, as we might expect, we've heard
And secondly, by Lord O'Shaughnessy timely intervention and reminder of the very powerful final speech of my long standing friend, Baroness Tessa Jowell in this House. And I would like to thank Lord O'Shaughnessy for his part in carrying that legacy forward and the important concentration on research. I only wanted to do two things. One was to congratulate my noble friend Baroness Elliott on taking this forward into hope that in the next three months we can we can get Royal assent.
But secondly, just to add one point, and that is that rare cancers sometimes morph into being much less rare. And the more we can do to examine those so-called rare cancers, the more likely we are to be able to intervene early and to prevent developments which would otherwise lead to death. And if we can do that, then that early understanding of their development and the ability to be able to save people in the future will be much more likely in the past.
And I'm very grateful for the mention of oesophageal cancer this morning. In the past, oesophageal cancer was a rare cancer. People would sometimes ill diagnosed, wrongly diagnosed with stomach cancer, but it was relatively rare. No longer, sadly, and I'm recalling my very good friend Lord Bob Kerslake, who of course was from and remained in Sheffield, who died from oesophageal cancer not so long ago. Today we have the opportunity of turning the spotlight on those rare cancers which affect a very large number of people and in some cases may affect greater numbers in years to come as environmental, societal and dietary changes have their
**** Possible New Speaker ****
impact. Thank you for the opportunity of intervening here. Here.
**** Possible New Speaker ****
Here. My Lords, first of all, I must thank the sponsors of this Bill and thank the sponsors of this Bill and congratulate Baroness Elliot. And when she spoke of breakthroughs, which is which is a very important, which is which is a very important, as we might expect, we've heard
11:41
Lord Palmer of Childs Hill (Liberal Democrat)
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Lord Palmer of Childs Hill (Liberal Democrat)
heartrending stories and personal survivor stories, and we must, when we discuss this Bill, remember, dear friends and relatives, as as many of as many noble Lords have said, my Lords, rare cancers make up about 24% of cancers diagnosed in the UK and the EU per year. This also includes children and young people cancers. My reason for speaking today is the delays. Children and young people with cancer are experiencing when applying for disability benefits, DLA and Pip that they are entitled to.
So my plea to the Minister adding on to this bill about rare cancers is to remove the qualifying period to reduce the delays that these people experience. My Lords, is it acceptable for young people with cancer, some of them rare, some of them not rare, to wait several months or more to receive their disability benefits seven months or more. Every year, about 4200 children and young people under 25 are diagnosed with cancer. Some some of it rare. Cancer.
Beyond the medical impact of cancer, children, young people and families also face a hidden and often devastating financial burden of living with cancer. About £700 in additional costs every month for items including travel to hospital, food, energy bills, childcare, parking, accommodation and more. Due to the immediacy, intensity and impact of cancer and its treatment, most young people and families experience the burden of these additional costs immediately after diagnosis. Immediately after diagnosis, more than 3 in 5 64% face extra expenses within the first month.
Within three months, this increases to four and five. 79% while the impacts of cancer persist beyond treatment, with benefits still needed after treatment, the most significant costs for many occur during treatment, particularly the crucial first few months following diagnosis. My Lords, these sudden, unexpected costs are often coupled with significant drops in income of £6,000 a year on average. But for 1 in 3, this could reach £10,000. My Lords. Yet the disability benefits system designed to support them with with a financial impact is not meeting those needs, especially due to delays.
And we've heard many noble peers talk about the delays, delays in receiving their benefits, as well as delays in receiving treatment. I laws. To address these delays, children and young people with cancer and their families should be entitled to access welfare benefits immediately following diagnosis and not be subject to a full qualifying period. My Lords, the application process for welfare benefits should be simple, efficient, streamlined, utilising medical evidence to quickly determine eligibility for payments. My my my my Lords, we deal here with rare cancers, but we must also talk about people being diagnosed with cancers and the stresses they have and how how we deal with that.
I hope the Minister, when replying, will address these delays. And but from these benches, we support this bill.
So my plea to the Minister adding on to this bill about rare cancers is to remove the qualifying period to reduce the delays that these people experience. My Lords, is it acceptable for young people with cancer, some of them rare, some of them not rare, to wait several months or more to receive their disability benefits seven months or more. Every year, about 4200 children and young people under 25 are diagnosed with cancer. Some some of it rare. Cancer.
Beyond the medical impact of cancer, children, young people and families also face a hidden and often devastating financial burden of living with cancer. About £700 in additional costs every month for items including travel to hospital, food, energy bills, childcare, parking, accommodation and more. Due to the immediacy, intensity and impact of cancer and its treatment, most young people and families experience the burden of these additional costs immediately after diagnosis. Immediately after diagnosis, more than 3 in 5 64% face extra expenses within the first month.
Within three months, this increases to four and five. 79% while the impacts of cancer persist beyond treatment, with benefits still needed after treatment, the most significant costs for many occur during treatment, particularly the crucial first few months following diagnosis. My Lords, these sudden, unexpected costs are often coupled with significant drops in income of £6,000 a year on average. But for 1 in 3, this could reach £10,000. My Lords. Yet the disability benefits system designed to support them with with a financial impact is not meeting those needs, especially due to delays.
And we've heard many noble peers talk about the delays, delays in receiving their benefits, as well as delays in receiving treatment. I laws. To address these delays, children and young people with cancer and their families should be entitled to access welfare benefits immediately following diagnosis and not be subject to a full qualifying period. My Lords, the application process for welfare benefits should be simple, efficient, streamlined, utilising medical evidence to quickly determine eligibility for payments. My my my my Lords, we deal here with rare cancers, but we must also talk about people being diagnosed with cancers and the stresses they have and how how we deal with that.
I hope the Minister, when replying, will address these delays. And but from these benches, we support this bill.
11:45
Lord Kamall (Conservative)
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Lord Kamall (Conservative)
My Lords, can I begin by >> My Lords, can I begin by thanking the noble Baroness Elliott of Whitburn Bay for introducing this bill in such a clear and moving manner, and thank all noble moving manner, and thank all noble Lords who spoke in this debate, as well as echoing the sentiments expressed. It is pretty clear that many of you Lordships, if not all, who spoke, are welcome, and as members in the other place, did do welcome this bill on all benches.
And I should also thank doctor, should I want to thank Doctor Scott Arthur, who introduced this bill in the in the other place. If no one had not already done so, I would urge strongly encourage them to read the Hansard of the Second Reading debate. In the other place, from the 14th of March last year. Just like the debate today, it contained many powerful and personal contributions, sharing the devastating impact on patients and their loved ones. And can I particularly thank those noble Lords who shared their own experience, however difficult and emotional it may have been, I could sense a few tears being shed around the house.
I also have a personal story. I lost my mother in law who, despite growing up in an era of Les Dawson jokes about mother in laws I loved very dearly and sadly she passed. She died due to a cancerous brain tumour a few years ago. The noble Lady noble and learned Lord Elliott has really clearly and persuasively set out the purpose and content of the bill, but I think it's important to look at the three important tasks first, placing a legal duty on the Secretary of State for Health and Social Care to promote research into rare cancers driven by a national cancer speciality, lead for rare cancers.
As as two of the experts in this house, the noble Lord Kakkar noble Lord Patel also mentioned is it's really important that role and also my noble friend Lord Randall having a having a specialist lead to drive this forward. And the example that was given of the effectiveness of specialist leads in other areas. Secondly, the importance of improving access to clinical trials, particularly through the use of and better use of sharing of data and some of the stories we heard today, people still can't believe today.
We are still not sharing some of that data that that that should be available. And thirdly, requiring the government to conduct a UK wide review of the regulatory framework for orphan medicinal products used to diagnose, prevent or treat cancers. Now, these three objectives are sensible and laudable. But the thing is, is how do we deliver this? How do we move from aspiration to implementation? And as the excellent briefing from the library makes clear, we are dealing with a stark reality because rare cancers, despite the name, account for almost half of all cancer diagnoses in the UK each year.
A point that my noble friend Lord Blencathra made about there being over 200 rare cancers and how many people it affects, and yet they are often harder to diagnose and treat than many the most common cancers. But there are many reasons for this, and a few reasons were explained today, partly because patient populations are smaller and more dispersed, which makes recruiting sufficient numbers for clinical trials very difficult. A point made by my noble friend Lord Moylan and the noble Lord, Lord Mendelson, and also a point that was addressed, I know, and was addressed in the review by my noble friend Lord Shaughnessy.
And one of the reasons as well is that there are less commercial incentives to develop new treatments compared to more widely medicines. Now, as an academic, and in fact, I should apologise for not declaring my own interests at the beginning. I am a professor of politics and international relations at Saint Mary's University in Twickenham. We are, and I'm helping them on opening a new medical school there. And also I am teaching a module to MBA students on healthcare policy and healthcare strategy.
I also have an academic link to the University of Buckingham, though not to a medical school that is there, but I just want to make sure I've covered all bases. But as an academic, I was looking at some of the papers around this and the 2024 paper by Danielson Prime Minister found that cancers that are most common in teenagers and young adults are different from the types of cancers that are common in children and older adults, and their survival for the same cancers can differ, just shows how incredibly difficult it is to tackle this issue.
And crucially, the Teenage Cancer Trust report that cancer treatments can be less effective for young people, as it were. Less research and clinical trials for this particular age group and the range of cancers. As my noble friend Blencathra said, are over 200 we're talking about is vast blood cancers. Cancers of the female reproductive organs, head and neck cancers, pancreatic cancers, brain cancers, and many more besides. And that's why it shows what a complex and challenging problem it is. But that means that should not be an excuse for inaction.
And as all noble Lords have said, the call for action is now. So by introducing this bill, I, the noble Baroness Healy, is shining a light on an issue that too often receives insufficient attention, and proposing a measured, thoughtful and practical set of steps to make medical progress. Quite often, at least at this patch box, whether in government or whether in opposition, we hear about government aspirations rather than firm steps. And this is a very practical proposal to the government.
But in discussing progress, I think we should acknowledge extraordinary work of all those campaigners and charities who play their role in different ways some funding, some research, some advocating, some supporting families and loved ones as, as, as the the noble Baroness Morgan actually acknowledged, and I thank them for engaging with this bill, but more importantly, for their tireless efforts on behalf of those living with cancers. My Lords, while we are supportive of this Bill, I think it would be helpful for your Lordships to understand both the view of the government and the view of the noble Baroness, lady Elliott, on on a few issues.
So the first issue, and I was raised by a number of noble Lords, is the issue of funding. While the Bill places an important duty on the Secretary of State to promote research into cancers, it does not seek to wring funds or guarantee specific funding. So could the noble Lady Minister say a little about how the government envisages this duty being reflected in future funding decisions, and how we ensure that there will be the rare cancers do not continue to lose out when resources are allocated, and before and before that.
I must be clear, we understand the challenge of of trying to fund all these research. Of course, it will be also interested to learn the view of the noble Baroness, lady, if she has a view on this. Secondly, on clinical trials, one of the challenges is that patients and clinicians frequently raises simple. As my noble friend Baroness Browning said, not all clinicians are aware of all relevant trials, particularly where those trials are highly specialised or geographically distant. So could the Minister share the current thinking of the department on what steps could be taken to improve awareness and signpost rare cancer trials, especially for clinicians and patients in rural and remote areas? And related to that, even where new treatments or trials are available, access is often concentrated in a small number of specialist centres, so could enable the Minister to comment on the thinking in the department on ways to address these disparities in access, so that patients are not disadvantaged simply because of where they live.
And turning to the proposed review of the regulatory framework, as many have said about the time frame, could it be cut shorter than less than three years? And what are the implications of doing that? And also looking at the issue of of medicinal products. So while it says three years, I just wonder whether the government or even the noble Lady Elliott have any views on whether this, this three years could be shortened, given the urgency that many laws have raised? And also, what about the actual proposed review would include consideration of Nice's pricing and appraisal processes, and will also consider wider societal impact, a debate that we had last week.
So many stakeholders have highlighted difficulties of balancing affordability with price points while supporting innovation in rare cancers. So it would be really helpful to understand these points. And finally, while the bill is rightly focussed on rare cancers, many of the issues it seeks to address such as delayed diagnosis, limited research, small patient populations and the need for need for specialist care also affect people living with other rare conditions. So could the Minister say a little about how the government is thinking more broadly about rare diseases, and whether the lessons learnt from this bill might inform wider policy in this area? We've also heard about a few other issues thrown in by other noble Lords.
One is timelines, the other one is the abolition of NHS England. I know this was a point raised in the other place. I wonder what the government's thinking is on that issue. My Lords, this is a thoughtful and important bill, one which commands broad support across the House and addresses an area of clear and longstanding need. But it does so in a careful and proportionate way. It's a bill that reflects the voices and experiences of patients and families who too often feel overlooked, particularly those affected by rarer and less well understood cancers, which we should remember despite the name, accounts for 47% of all cancers.
This alone is an important and welcome development, and I commend the bill's sponsors for that. The questions I pose are not intended to delay or, but they are intended to be constructive, to understand how the bill would operate in practice, how ambitions could be turned into reality, and how principles might inform and provoke wider thinking across government. I see. I hope my questions will be seen as constructive, but once again I thank them. They will. Baroness Lady Elliott, for her leadership on this bill and look forward to working with her and supporting its progress through the remaining stages.
And I should also thank doctor, should I want to thank Doctor Scott Arthur, who introduced this bill in the in the other place. If no one had not already done so, I would urge strongly encourage them to read the Hansard of the Second Reading debate. In the other place, from the 14th of March last year. Just like the debate today, it contained many powerful and personal contributions, sharing the devastating impact on patients and their loved ones. And can I particularly thank those noble Lords who shared their own experience, however difficult and emotional it may have been, I could sense a few tears being shed around the house.
I also have a personal story. I lost my mother in law who, despite growing up in an era of Les Dawson jokes about mother in laws I loved very dearly and sadly she passed. She died due to a cancerous brain tumour a few years ago. The noble Lady noble and learned Lord Elliott has really clearly and persuasively set out the purpose and content of the bill, but I think it's important to look at the three important tasks first, placing a legal duty on the Secretary of State for Health and Social Care to promote research into rare cancers driven by a national cancer speciality, lead for rare cancers.
As as two of the experts in this house, the noble Lord Kakkar noble Lord Patel also mentioned is it's really important that role and also my noble friend Lord Randall having a having a specialist lead to drive this forward. And the example that was given of the effectiveness of specialist leads in other areas. Secondly, the importance of improving access to clinical trials, particularly through the use of and better use of sharing of data and some of the stories we heard today, people still can't believe today.
We are still not sharing some of that data that that that should be available. And thirdly, requiring the government to conduct a UK wide review of the regulatory framework for orphan medicinal products used to diagnose, prevent or treat cancers. Now, these three objectives are sensible and laudable. But the thing is, is how do we deliver this? How do we move from aspiration to implementation? And as the excellent briefing from the library makes clear, we are dealing with a stark reality because rare cancers, despite the name, account for almost half of all cancer diagnoses in the UK each year.
A point that my noble friend Lord Blencathra made about there being over 200 rare cancers and how many people it affects, and yet they are often harder to diagnose and treat than many the most common cancers. But there are many reasons for this, and a few reasons were explained today, partly because patient populations are smaller and more dispersed, which makes recruiting sufficient numbers for clinical trials very difficult. A point made by my noble friend Lord Moylan and the noble Lord, Lord Mendelson, and also a point that was addressed, I know, and was addressed in the review by my noble friend Lord Shaughnessy.
And one of the reasons as well is that there are less commercial incentives to develop new treatments compared to more widely medicines. Now, as an academic, and in fact, I should apologise for not declaring my own interests at the beginning. I am a professor of politics and international relations at Saint Mary's University in Twickenham. We are, and I'm helping them on opening a new medical school there. And also I am teaching a module to MBA students on healthcare policy and healthcare strategy.
I also have an academic link to the University of Buckingham, though not to a medical school that is there, but I just want to make sure I've covered all bases. But as an academic, I was looking at some of the papers around this and the 2024 paper by Danielson Prime Minister found that cancers that are most common in teenagers and young adults are different from the types of cancers that are common in children and older adults, and their survival for the same cancers can differ, just shows how incredibly difficult it is to tackle this issue.
And crucially, the Teenage Cancer Trust report that cancer treatments can be less effective for young people, as it were. Less research and clinical trials for this particular age group and the range of cancers. As my noble friend Blencathra said, are over 200 we're talking about is vast blood cancers. Cancers of the female reproductive organs, head and neck cancers, pancreatic cancers, brain cancers, and many more besides. And that's why it shows what a complex and challenging problem it is. But that means that should not be an excuse for inaction.
And as all noble Lords have said, the call for action is now. So by introducing this bill, I, the noble Baroness Healy, is shining a light on an issue that too often receives insufficient attention, and proposing a measured, thoughtful and practical set of steps to make medical progress. Quite often, at least at this patch box, whether in government or whether in opposition, we hear about government aspirations rather than firm steps. And this is a very practical proposal to the government.
But in discussing progress, I think we should acknowledge extraordinary work of all those campaigners and charities who play their role in different ways some funding, some research, some advocating, some supporting families and loved ones as, as, as the the noble Baroness Morgan actually acknowledged, and I thank them for engaging with this bill, but more importantly, for their tireless efforts on behalf of those living with cancers. My Lords, while we are supportive of this Bill, I think it would be helpful for your Lordships to understand both the view of the government and the view of the noble Baroness, lady Elliott, on on a few issues.
So the first issue, and I was raised by a number of noble Lords, is the issue of funding. While the Bill places an important duty on the Secretary of State to promote research into cancers, it does not seek to wring funds or guarantee specific funding. So could the noble Lady Minister say a little about how the government envisages this duty being reflected in future funding decisions, and how we ensure that there will be the rare cancers do not continue to lose out when resources are allocated, and before and before that.
I must be clear, we understand the challenge of of trying to fund all these research. Of course, it will be also interested to learn the view of the noble Baroness, lady, if she has a view on this. Secondly, on clinical trials, one of the challenges is that patients and clinicians frequently raises simple. As my noble friend Baroness Browning said, not all clinicians are aware of all relevant trials, particularly where those trials are highly specialised or geographically distant. So could the Minister share the current thinking of the department on what steps could be taken to improve awareness and signpost rare cancer trials, especially for clinicians and patients in rural and remote areas? And related to that, even where new treatments or trials are available, access is often concentrated in a small number of specialist centres, so could enable the Minister to comment on the thinking in the department on ways to address these disparities in access, so that patients are not disadvantaged simply because of where they live.
And turning to the proposed review of the regulatory framework, as many have said about the time frame, could it be cut shorter than less than three years? And what are the implications of doing that? And also looking at the issue of of medicinal products. So while it says three years, I just wonder whether the government or even the noble Lady Elliott have any views on whether this, this three years could be shortened, given the urgency that many laws have raised? And also, what about the actual proposed review would include consideration of Nice's pricing and appraisal processes, and will also consider wider societal impact, a debate that we had last week.
So many stakeholders have highlighted difficulties of balancing affordability with price points while supporting innovation in rare cancers. So it would be really helpful to understand these points. And finally, while the bill is rightly focussed on rare cancers, many of the issues it seeks to address such as delayed diagnosis, limited research, small patient populations and the need for need for specialist care also affect people living with other rare conditions. So could the Minister say a little about how the government is thinking more broadly about rare diseases, and whether the lessons learnt from this bill might inform wider policy in this area? We've also heard about a few other issues thrown in by other noble Lords.
One is timelines, the other one is the abolition of NHS England. I know this was a point raised in the other place. I wonder what the government's thinking is on that issue. My Lords, this is a thoughtful and important bill, one which commands broad support across the House and addresses an area of clear and longstanding need. But it does so in a careful and proportionate way. It's a bill that reflects the voices and experiences of patients and families who too often feel overlooked, particularly those affected by rarer and less well understood cancers, which we should remember despite the name, accounts for 47% of all cancers.
This alone is an important and welcome development, and I commend the bill's sponsors for that. The questions I pose are not intended to delay or, but they are intended to be constructive, to understand how the bill would operate in practice, how ambitions could be turned into reality, and how principles might inform and provoke wider thinking across government. I see. I hope my questions will be seen as constructive, but once again I thank them. They will. Baroness Lady Elliott, for her leadership on this bill and look forward to working with her and supporting its progress through the remaining stages.
11:54
Baroness Merron, The Parliamentary Under-Secretary for Health and Social Care (Labour)
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Baroness Merron, The Parliamentary Under-Secretary for Health and Social Care (Labour)
Here are my Lords. I am >> Here are my Lords. I am delighted to pledge the government's full support for this Bill. It is very much aligned with Bill. It is very much aligned with our commitments. It strengthens the research ecosystem and most importantly, I agree with the many comments today that it gives hope. It gives hope to patients and families who are affected by rare cancers. And I'm glad that the bill also has the support of the noble Lord Lord Kamall and the noble Lord, Lord Palmer, on behalf of their benches.
I am most grateful to noble Lords for their points and proposals today, and I will be reflecting on them after this debate with the Minister in this area. Ashley Dalton MP, and also Zubair Ahmed MP. And I'm also very touched by the fact that so many peers have shared their personal experiences, whether of their own or of their loved ones. And I particularly want to say that I feel that this bill does stand tribute to the memory of so many, including the late noble Ladies, the Baroness McDonagh and Baroness Bell.
But it also stands in tribute to the memory of so many who I believe have been brought into the chamber today by the very touching words and reflections of so many noble Lords. And I realised how difficult that that is. I congratulate my noble friend, the Baroness Elliott, for her tenacity and her clarity in bringing forward what is an important bill before your Lordships House. And I do want to associate myself with the comments of thanks to many of the campaigners and the charities who have worked so hard for so many years, and I know will continue to do so.
And my noble friend Baroness Morgan made this point particularly clearly. But I can say to your Lordships' House and to the noble Lord Lord Cromwell in particular, this government's quite clear. No patient should be left behind simply because their cancer is less common. The National Cancer Plan, which is soon to be published. And I heard what the noble Lord Lord Polak said about what he hopes will be in there, and he won't have to wait too long for that.
But the National Cancer Plan will build on the progress of this bill. They work very well together because they both seek to improve outcomes for cancer patients across the country, including those with rare cancers. And it is by fighting cancer on all fronts from prevention, diagnosis, treatment and research that we will make that change. My Lords, there has been much said today, and rightly so, about a number of cancers, but I just want to say a particular word on how little is currently known about the prevention, diagnosis and the management of brain tumours.
They remain one of the hardest cancers to treat, and we also know how crucial early diagnosis is for improving survival for all cancers, including brain tumours, and that's why we've committed to an additional £6 billion capital investment on new diagnostic, elective and urgent care capacity. And the noble Lord, Lord Patel, called for genome sequencing for brain tumours. And I can say to the noble Lord that the National Cancer Plan will include detail on how we ensure that patients have access to the latest treatments and technology, including genetic treatments that will points important points raised by the noble Lady Baroness Grey-Thompson and the noble Lord Lord O'Shaughnessy, amongst others, about how the £40 million commitment to NIH funding for brain tumour Research will be met.
I can say this commitment absolutely remains in place, but perhaps I could also add there is no upper limit to our funding of high quality brain tumour research, and we are committed to exceeding the £40 million target. And I should also add, there is also no there is not any limit on our funding of high quality childhood cancer research. My Lords, clinical research absolutely rightly is at the very core of this bill and it is one of the most powerful tools that we have.
I believe that this bill will complement the ambitions in our ten year health plan and the forthcoming National Cancer Plan, and that is to embed that research across the NHS as well as give patients greater control. And it will make it much easier for researchers to connect with patients with rare cancers and to streamline the recruitment for clinical trials and ensure our regulatory framework actually delivers for those who need it most. The noble Lord Lord O'Shaughnessy, the noble Lady Baroness Finlay, and the noble Lady Baroness Browning raised points about the database.
Yes, the database is live across the UK. It is a UK wide registry and I would certainly urge everyone to sign up to be part of the be part of research in order to connect with trials. Today. The noble Lady Baroness Browning also asked about strengthening of orphan drug regulations. And I just would say we must ensure there is a detailed review before there's any decision making related to the regulations to the noble Lord Lord Polak. We will ensure that we do all that we can to improve how we use research data for research, and also to raise public awareness of consent.
And I certainly fully support the digitisation of advanced consent. As he referred to. It is absolutely key that we incentivise, incentivise research and that we continue as we are, to support and develop cutting edge research for rare cancers and other rare diseases through the NIH. And in December, we launched a pioneering new, for example, a pioneering new Brain Tumour Research Consortium to accelerate accelerate research into new treatments through the NIH, which is investing an initial £13.7 million with significant further funding expected to be announced shortly.
We are also ensuring the effective coordination of research from other funders and charities through the office for Strategic Coordination of Health Research, and that is chaired by the noble Lord Lord Kakkar. And in August we published an update Transforming the Clinical Research System, outlining how we fully delivered against all of the recommendations in the review conducted by the noble Lord, Lord O'Shaughnessy, who I do thank for his work in respect of commercial clinical trials, and we will go still further to deliver on our ten year health plan and cut clinical trial set up times to under 150 days by March.
A target driven by the Prime Minister. And we are taking forward the most significant reform of clinical trials regulations in over 20 years. We need more and more efficient and adaptable regulatory framework, and that is what we will deliver. There were concerns raised about about timings of implementation and market authorisation of clinical trials. I should say the time frame within the bill is exactly that. It is a legal boundary, and we certainly expect to publish the report rather sooner.
And the noble Lord Lord Mott, asked about the UK's ranking for approving orphan drugs. And certainly I can say that the lessons learned from the review of the regulations will inform how we best approach regulation of UK orphan medicines with regard to the abolition of NHS. Work is underway on primary legislation that will enable the functions, the powers, the responsibilities to transform formally to the department and that will include responsibility for this bill. And I certainly heard loud and clear from a number of noble Lords, the wish to see a speciality lead for rare cancers brought into post, and to get to work as soon as possible.
I certainly agree on the their importance. I did hear what the noble Lord Lord Blencathra said, but this is the way we are going to be going forward and we will ensure that that appointment is made as soon as possible. My Lords, there are so many points that have been made, as I said at the outset of use, and they will be part of our consideration as we go further. But the main thing I want to say today is how glad we are to fully support this bill and how we will do all that we can to help progress it.
It reflects ambition and it reflects our support for a goal to be the UK global leader in clinical research, as noble Lords have called for, because this is about patients, particularly those facing rare cancers. They deserve and need a greater choice and speed and opportunity to participate in vital studies. And every breakthrough is absolutely key, because that means that we can maximise people's access to the benefits. So I thank my noble friend for bringing the bill forward.
I thank all noble Lords who have contributed today, and I thank all those who continue
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to champion its cause. And I apologise for keeping the house waiting a moment longer, but house waiting a moment longer, but I just wanted to ask her something very important. This has been a fantastic debate, a really high fantastic debate, a really high standard of debate in the best, in the best interests of the House of Lords as well. But there was a Lords as well. But there was a great focus on focus research on rare cancers. But would she just agree with me that what is also important is continued basic research on cell biology, on embryology, on a whole range of things about cell development, which has contributed so much to
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cancer research and to rare cancer research as well. This has been, as my noble
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This has been, as my noble friend said, an extremely valuable, friend said, an extremely valuable, well informed and moving debate. We are just focusing on rare cancers are just focusing on rare cancers because of the nature of the bill at present. But I absolutely take at present. But I absolutely take my noble friend's points about the importance of work outside of rare cancers, but also the overlap with that, and I thank him for it.
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My Lords, can I thank everyone who has taken part in this debate today? I think it truly has shown this House at its best, a combination of personal stories of incredible expertise on the subject, way beyond my level of knowledge, way beyond my level of knowledge, and everybody who has played an important part in highlighting just how important this is. I particularly want to thank members who have given personal stories often, which are very difficult and emotional to talk about.
It is not
I am most grateful to noble Lords for their points and proposals today, and I will be reflecting on them after this debate with the Minister in this area. Ashley Dalton MP, and also Zubair Ahmed MP. And I'm also very touched by the fact that so many peers have shared their personal experiences, whether of their own or of their loved ones. And I particularly want to say that I feel that this bill does stand tribute to the memory of so many, including the late noble Ladies, the Baroness McDonagh and Baroness Bell.
But it also stands in tribute to the memory of so many who I believe have been brought into the chamber today by the very touching words and reflections of so many noble Lords. And I realised how difficult that that is. I congratulate my noble friend, the Baroness Elliott, for her tenacity and her clarity in bringing forward what is an important bill before your Lordships House. And I do want to associate myself with the comments of thanks to many of the campaigners and the charities who have worked so hard for so many years, and I know will continue to do so.
And my noble friend Baroness Morgan made this point particularly clearly. But I can say to your Lordships' House and to the noble Lord Lord Cromwell in particular, this government's quite clear. No patient should be left behind simply because their cancer is less common. The National Cancer Plan, which is soon to be published. And I heard what the noble Lord Lord Polak said about what he hopes will be in there, and he won't have to wait too long for that.
But the National Cancer Plan will build on the progress of this bill. They work very well together because they both seek to improve outcomes for cancer patients across the country, including those with rare cancers. And it is by fighting cancer on all fronts from prevention, diagnosis, treatment and research that we will make that change. My Lords, there has been much said today, and rightly so, about a number of cancers, but I just want to say a particular word on how little is currently known about the prevention, diagnosis and the management of brain tumours.
They remain one of the hardest cancers to treat, and we also know how crucial early diagnosis is for improving survival for all cancers, including brain tumours, and that's why we've committed to an additional £6 billion capital investment on new diagnostic, elective and urgent care capacity. And the noble Lord, Lord Patel, called for genome sequencing for brain tumours. And I can say to the noble Lord that the National Cancer Plan will include detail on how we ensure that patients have access to the latest treatments and technology, including genetic treatments that will points important points raised by the noble Lady Baroness Grey-Thompson and the noble Lord Lord O'Shaughnessy, amongst others, about how the £40 million commitment to NIH funding for brain tumour Research will be met.
I can say this commitment absolutely remains in place, but perhaps I could also add there is no upper limit to our funding of high quality brain tumour research, and we are committed to exceeding the £40 million target. And I should also add, there is also no there is not any limit on our funding of high quality childhood cancer research. My Lords, clinical research absolutely rightly is at the very core of this bill and it is one of the most powerful tools that we have.
I believe that this bill will complement the ambitions in our ten year health plan and the forthcoming National Cancer Plan, and that is to embed that research across the NHS as well as give patients greater control. And it will make it much easier for researchers to connect with patients with rare cancers and to streamline the recruitment for clinical trials and ensure our regulatory framework actually delivers for those who need it most. The noble Lord Lord O'Shaughnessy, the noble Lady Baroness Finlay, and the noble Lady Baroness Browning raised points about the database.
Yes, the database is live across the UK. It is a UK wide registry and I would certainly urge everyone to sign up to be part of the be part of research in order to connect with trials. Today. The noble Lady Baroness Browning also asked about strengthening of orphan drug regulations. And I just would say we must ensure there is a detailed review before there's any decision making related to the regulations to the noble Lord Lord Polak. We will ensure that we do all that we can to improve how we use research data for research, and also to raise public awareness of consent.
And I certainly fully support the digitisation of advanced consent. As he referred to. It is absolutely key that we incentivise, incentivise research and that we continue as we are, to support and develop cutting edge research for rare cancers and other rare diseases through the NIH. And in December, we launched a pioneering new, for example, a pioneering new Brain Tumour Research Consortium to accelerate accelerate research into new treatments through the NIH, which is investing an initial £13.7 million with significant further funding expected to be announced shortly.
We are also ensuring the effective coordination of research from other funders and charities through the office for Strategic Coordination of Health Research, and that is chaired by the noble Lord Lord Kakkar. And in August we published an update Transforming the Clinical Research System, outlining how we fully delivered against all of the recommendations in the review conducted by the noble Lord, Lord O'Shaughnessy, who I do thank for his work in respect of commercial clinical trials, and we will go still further to deliver on our ten year health plan and cut clinical trial set up times to under 150 days by March.
A target driven by the Prime Minister. And we are taking forward the most significant reform of clinical trials regulations in over 20 years. We need more and more efficient and adaptable regulatory framework, and that is what we will deliver. There were concerns raised about about timings of implementation and market authorisation of clinical trials. I should say the time frame within the bill is exactly that. It is a legal boundary, and we certainly expect to publish the report rather sooner.
And the noble Lord Lord Mott, asked about the UK's ranking for approving orphan drugs. And certainly I can say that the lessons learned from the review of the regulations will inform how we best approach regulation of UK orphan medicines with regard to the abolition of NHS. Work is underway on primary legislation that will enable the functions, the powers, the responsibilities to transform formally to the department and that will include responsibility for this bill. And I certainly heard loud and clear from a number of noble Lords, the wish to see a speciality lead for rare cancers brought into post, and to get to work as soon as possible.
I certainly agree on the their importance. I did hear what the noble Lord Lord Blencathra said, but this is the way we are going to be going forward and we will ensure that that appointment is made as soon as possible. My Lords, there are so many points that have been made, as I said at the outset of use, and they will be part of our consideration as we go further. But the main thing I want to say today is how glad we are to fully support this bill and how we will do all that we can to help progress it.
It reflects ambition and it reflects our support for a goal to be the UK global leader in clinical research, as noble Lords have called for, because this is about patients, particularly those facing rare cancers. They deserve and need a greater choice and speed and opportunity to participate in vital studies. And every breakthrough is absolutely key, because that means that we can maximise people's access to the benefits. So I thank my noble friend for bringing the bill forward.
I thank all noble Lords who have contributed today, and I thank all those who continue
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to champion its cause. And I apologise for keeping the house waiting a moment longer, but house waiting a moment longer, but I just wanted to ask her something very important. This has been a fantastic debate, a really high fantastic debate, a really high standard of debate in the best, in the best interests of the House of Lords as well. But there was a Lords as well. But there was a great focus on focus research on rare cancers. But would she just agree with me that what is also important is continued basic research on cell biology, on embryology, on a whole range of things about cell development, which has contributed so much to
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cancer research and to rare cancer research as well. This has been, as my noble
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This has been, as my noble friend said, an extremely valuable, friend said, an extremely valuable, well informed and moving debate. We are just focusing on rare cancers are just focusing on rare cancers because of the nature of the bill at present. But I absolutely take at present. But I absolutely take my noble friend's points about the importance of work outside of rare cancers, but also the overlap with that, and I thank him for it.
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My Lords, can I thank everyone who has taken part in this debate today? I think it truly has shown this House at its best, a combination of personal stories of incredible expertise on the subject, way beyond my level of knowledge, way beyond my level of knowledge, and everybody who has played an important part in highlighting just how important this is. I particularly want to thank members who have given personal stories often, which are very difficult and emotional to talk about.
It is not
12:08
Baroness Elliott of Whitburn Bay (Labour)
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Baroness Elliott of Whitburn Bay (Labour)
an easy thing to do, and particularly to Lord Patel, who was particularly to Lord Patel, who was so recently been bereaved, I. I want to also highlight the contribution from Lord O'Shaughnessy, because when Dame Tessa Jowell made that most moving Tessa Jowell made that most moving and uplifting of speeches, in the circumstances, actually standing not far from where he is sitting not far from where he is sitting now, I was one of the members of the House of Commons who came and stood at the bar for the entirety of her contribution that day, and it was one of the few times I actually came to this, to the bar to listen to things in this chamber, but it is one that I shall never forget.
And that positivity, I think, is, is in this bill, because this is a bill about hope to change things for the better. I also want to mention the contribution from Lord Mendelson, who mentioned our friend Phil Wallace, who I had the privilege of serving in the House of Commons for a short time, but knew him long before that. And we wish him well. And his wife Tracy, and the entire family and his close friends as he battles the the terrible situation he is in at the moment.
I think the key message coming out of this bill today is the hope that it will give people who are diagnosed with rare cancers to them, their families and their friends. And at the moment there is little hope to those people. So in thanking Doctor Scott Arthur again, his staff, the charities who have got us to this point, I think let's leave here today with the hope that this bill can really change things for the better. I beg to move here.
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The question is, does this bill be now read a second time? As many
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be now read a second time? As many as I will say content, not content. The content. My Lords, I beg to move that
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this bill be committed to a Committee of the whole House. The question is this bill be committed to a Committee of the committed to a Committee of the whole House? As many as are of that opinion will say content, the opinion will say content, the contrary, not content. The contents have it. My Lords, before we start further consideration on Committee stage of the assisted dying and end of life bill, I wish to make a
And that positivity, I think, is, is in this bill, because this is a bill about hope to change things for the better. I also want to mention the contribution from Lord Mendelson, who mentioned our friend Phil Wallace, who I had the privilege of serving in the House of Commons for a short time, but knew him long before that. And we wish him well. And his wife Tracy, and the entire family and his close friends as he battles the the terrible situation he is in at the moment.
I think the key message coming out of this bill today is the hope that it will give people who are diagnosed with rare cancers to them, their families and their friends. And at the moment there is little hope to those people. So in thanking Doctor Scott Arthur again, his staff, the charities who have got us to this point, I think let's leave here today with the hope that this bill can really change things for the better. I beg to move here.
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The question is, does this bill be now read a second time? As many
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be now read a second time? As many as I will say content, not content. The content. My Lords, I beg to move that
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this bill be committed to a Committee of the whole House. The question is this bill be committed to a Committee of the committed to a Committee of the whole House? As many as are of that opinion will say content, the opinion will say content, the contrary, not content. The contents have it. My Lords, before we start further consideration on Committee stage of the assisted dying and end of life bill, I wish to make a
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Business of the House
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Business of the House
short statement. I emailed all peers on Wednesday afternoon to set out my position in light of the out my position in light of the agreement to Lord Falconer's motion agreed last Thursday. In this House, agreed last Thursday. In this House, I'll briefly set out the headlines again to assist the House. My Lords noble Lords clearly accepted the noble Lords clearly accepted the proposition last week that more time was needed to scrutinise the time was needed to scrutinise the Bill. I have taken time to consider all the options, discuss those options with Lord Falconer and other noble colleagues, other Lords, the usual channels and the House administration.
In coming to my recommended recommended position. Careful consideration has been given to the impact additional time would have on the House staff members and government legislation. We have always been clear that the government is neutral and that will not change. I also confirmed last week that additional time for the bill will not be provided in time, used for government legislation. Auckland House matters Fridays therefore, remain the only opportunity to scrutinise the Bill, which is a private member's bill.
Rather than seeking to adjourn the House of 3 p.m. today, as I've done in previous weeks. In the light of the motion, I will therefore seek to adjourn the House at around 5:30 p.m. today and at 6 p.m. on subsequent Fridays. Already allocated. I understand, my Lords, that some noble Lords are very disappointed by this fact, but the House spoke clearly last week and this is the only option I can see to fulfil the will of the House. Ultimately, though, when we rise remains in the hands of noble Lords here, and I remind colleagues, noble Lords, that should they wish to rise earlier and Annie noble Lord can seek to adjourn the House at any point before 530 by moving the motion that the House be now resumed.
If that motion was moved and carried, I will then adjourn the House. My Lords, as you've previously discussed, the concerns, particularly concerns from different faith groups and in particular accessibility alterations remain very sympathetic to those points and about a consequence of rising beyond 3 p.m. which is why discussed in the usual channels. And I will provide flexibility on that requirement to actually have to stay to the end of the debate. So colleagues need to want to leave, at least leave early they can, without having to wait to actually hear the contribution from the frontbenchers in the debate they've spoken to all of us would be is they either let their whip know or the government whips office or the convenor.
They are leaving. I will not go over previous statements or emails about usual courtesies, debates to save time and to allow us to go on to the subsidy bill by trusting the Lords will move forward in line with the guidance on how the Committee should proceed in the spirit of good self-governance regulation, respectable colleagues.
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And Lords, the the Chief Whip will know that I, amongst others, contacted him about this proposal and accepting that the House made and accepting that the House made its declaration last Thursday, one has to take that seriously and into has to take that seriously and into account. However, what the proposal before us now does is ensure that before us now does is ensure that those of us who cannot go outside the front door, get into our car and drive home will be effectively excluded from a large part of this debate.
And it's not good enough, if I may say so, to say that we can be excused from the normal courtesies of staying to the end. The purpose of putting down
In coming to my recommended recommended position. Careful consideration has been given to the impact additional time would have on the House staff members and government legislation. We have always been clear that the government is neutral and that will not change. I also confirmed last week that additional time for the bill will not be provided in time, used for government legislation. Auckland House matters Fridays therefore, remain the only opportunity to scrutinise the Bill, which is a private member's bill.
Rather than seeking to adjourn the House of 3 p.m. today, as I've done in previous weeks. In the light of the motion, I will therefore seek to adjourn the House at around 5:30 p.m. today and at 6 p.m. on subsequent Fridays. Already allocated. I understand, my Lords, that some noble Lords are very disappointed by this fact, but the House spoke clearly last week and this is the only option I can see to fulfil the will of the House. Ultimately, though, when we rise remains in the hands of noble Lords here, and I remind colleagues, noble Lords, that should they wish to rise earlier and Annie noble Lord can seek to adjourn the House at any point before 530 by moving the motion that the House be now resumed.
If that motion was moved and carried, I will then adjourn the House. My Lords, as you've previously discussed, the concerns, particularly concerns from different faith groups and in particular accessibility alterations remain very sympathetic to those points and about a consequence of rising beyond 3 p.m. which is why discussed in the usual channels. And I will provide flexibility on that requirement to actually have to stay to the end of the debate. So colleagues need to want to leave, at least leave early they can, without having to wait to actually hear the contribution from the frontbenchers in the debate they've spoken to all of us would be is they either let their whip know or the government whips office or the convenor.
They are leaving. I will not go over previous statements or emails about usual courtesies, debates to save time and to allow us to go on to the subsidy bill by trusting the Lords will move forward in line with the guidance on how the Committee should proceed in the spirit of good self-governance regulation, respectable colleagues.
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And Lords, the the Chief Whip will know that I, amongst others, contacted him about this proposal and accepting that the House made and accepting that the House made its declaration last Thursday, one has to take that seriously and into has to take that seriously and into account. However, what the proposal before us now does is ensure that before us now does is ensure that those of us who cannot go outside the front door, get into our car and drive home will be effectively excluded from a large part of this debate.
And it's not good enough, if I may say so, to say that we can be excused from the normal courtesies of staying to the end. The purpose of putting down
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Business of the House
Lord Kennedy of Southwark (Labour)
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Business of the House
Lord Kennedy of Southwark (Labour)
amendments is to hear the response from the proposal of the Bill and from the Minister. Now, I know that we can't get up at any point and move an adjournment or a resumption of the House, but I don't think we would want to get into into a situation where we're bouncing around, looking around to see if we can win a vote for an adjournment. I think we would need an agreed situation and I certainly with others, will be giving consideration to that over the weekend and perhaps returning to the noble Lord at the beginning of the week with some suggestions that accepts and acknowledges the will of the House expressed last Thursday, but at the same time does not mean that those of us who have to travel a distance effectively are forced with the situation of having to stay over for the weekend to to certainly to Saturday, because if we're leaving here at 6:00 or around 6:00, it's impossible for us to get home and therefore we would have to stay over.
As to the current proposal for today to be bounced with that at 5:30 on Wednesday, when we make bookings weeks in advance, perhaps have commitments already entered into, it's utterly impossible to react. How can you change your plans at that late stage? Now, I know we're all in politics. I know we have to adjust. In the house has its natural rhythms, but I have to say that this is discriminating against anybody who has to travel from a significant difference. And we're against discrimination on this House and discriminating on the basis of geography, I don't think is fair.
And I think that we'll have to revisit this and see if we can find a way forward that meets the will of the House, expressed on the Thursday of last week, and at the same time does not exclude or effectively disadvantage those of us who have to travel a
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significant distance. Can I purchase? I have huge respect for the noble Lord and colleagues who actually serve in this House in all parts of our United Kingdom, including Northern United Kingdom, including Northern Ireland and Scotland. I accept the points he makes about the inconvenience he causes to colleagues. My door remains open. colleagues. My door remains open. I'll happily meet the noble Lord next week to discuss with you in future. I don't come here to annoy and aggravate all members of the House, and I feel that at the moment I'm doing just that is not my intention.
I love the house and I want the house to work well and I remain, you know, willing at any point, at any level or any ideas they've actually got. But, I mean, I'm both the government's business manager and people and the government's business through, and people want to use government time. I've also conscious of party debates and select committee reports and important colleagues, and it is very difficult, but I'm certainly able and my door is always open to any colleague to come and see me to discuss any other further, how we can move this
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forward. I'm very sorry to labour laws today. Chief Whip on when we should
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Chief Whip on when we should adjourn discussion of a group and carry it forward to the next designated day after we've reached the official knocking off time, the official knocking off time, shall we say the noble Lord, the Chief Whip, will know that on Tuesday last, when we're due to Tuesday last, when we're due to finish at 11:00, at two minutes to 11, the whip on duty suggested that we should adjourn the debate and we should adjourn the debate and continue the next day, even though there was only one peer left to speak.
We resolve that matter with the noble Lord. The Chief whips help. We continue the discussion. We finished at 11:07. Could you contrast that with last Friday, when at 2:30, when there were four noble peers ready, waiting to speak, the whip on duty decided that we needed to hear from the frontbench, and because the whole group had to be concluded by 3:00. I don't think that's right in accordance with our procedures. So I'd like some clarity from the noble Lord, the Chief Whip, please, on when we can, that we should be able to carry forward the remaining discussion on a group if we have not completed it by the official stopping time.
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I agree with the noble Lord Blencathra who is obviously very experienced member of this House. I experienced member of this House. I think it's fair to say that ideally, when we're discussing any legislation, if you can conclude a group of amendments on that day, it group of amendments on that day, it is better than not to conclude them. It's just better for management of the house, management of business. the house, management of business. But sometimes that is not possible, and I fully accept that when that is the case, what you should do is is the case, what you should do is you should adjourn mid group and then come back to it the next day.
And if that happens today, at any
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point I'll ensure that actually happens. I would like to ask what the
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I would like to ask what the Lord Empey said, and I know that many of our Scottish and Northern England colleagues are very much England colleagues are very much affected by this. I just want to draw his attention to one thing, my Lords. The House normally rises Lords. The House normally rises around 7:00 on Thursday evenings. That is reflected by the fact that there's no dinner, for example, in the dining room on Thursday evenings. Would it not be possible for the Lord to sit, the Lords to sit from 7:00 till, say, 10:00 and then release us at 3:00 on Friday so that we don't incur extra expense, which the House has to pay
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because of this change of business. I'm very happy to discuss that further. Noble Lady, next week and with the usual channels. But up to now, of course, PM's are dealt with on Fridays and and I think all my on Fridays and and I think all my colleagues want wanted to keep tonight. I wanted to keep to that. But as I said, I'm very happy to have that discussion next week to find another way forward to affordable. The House wants to do is buy more time for this bill and is buy more time for this bill and see if we can do that.
I'm very week.
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My Lords, I wonder if I might. Order particularly the concern of Jewish members of the House who are in a particular difficulty on Fridays. And perhaps it's better for something that's not Jewish to for something that's not Jewish to put that forward and say, could he please look at that very carefully?
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please look at that very carefully? I thank the Lord for his point. I genuinely do understand that, and I'm very conscious of that. And again, you know, I don't wish to cause any colleague, any member who is Jewish or any other faith, distress or inconvenience or problems in their faith by sitting beyond 3 p.m. It's why I did suggest that people could actually leave without hearing the debates. But that may not be acceptable for some colleagues. But I'm aware of that.
And as I said again, I will discuss this. What else we can do, but I apologise if not my intention to cause colleagues or members, noble Lords in the House who are Jewish, any distress or problems
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with their faith. I have a point of clarification from the noble Lord. But before I express that, I want to say that I think I speak for the whole house think I speak for the whole house when I say that we understand what a difficult position the noble Lord finds himself in, and how fair and how very fair he's trying to be to all sides in attempting to resolve all sides in attempting to resolve this. And certainly I can say I'm extremely grateful to him consistently for the fairness that he's displayed to the house.
My point is a point of the procedures of the House. When we have that unusual motion. Last week, the noble Lady Lady still of Beeston, a former Leader of the House, as we might recall, raised an important point at the end. And her point was simply this does this affect precedent and future procedure on private member's bill? I don't think she got an adequate response. And my question to the noble Lord today is, while I appreciate his flexibility in allowing noble Lords to leave before the end of the debate on a particular amendment, and I completely endorse all the comments made by other colleagues who live further away from the House about the troubles they would encounter.
But when we change the procedures of the House and more or less drive a coach of a coach and horses through the companion, are we not expected to have a debate on changes to the companion and make clear that we're not setting procedure in having that? And
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should we not be having a vote on that? I thank the noble Lady for a
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I thank the noble Lady for a very kind comments. I was much appreciated by me. I think what I can say is that we are a can say is that we are a self-regulating house and we have we've got a companion, we don't have fixed rules, we have have fixed rules, we have conventions, and we all try to work around those. And that enables our house to work in the unique way. It does work in that it's not in some ways it's it's not like the House of Commons.
I know the colleagues who come from the House of Commons say that they have strains. They find this when they first arrive here, but it does work. We actually, although the companion does, advise us to rise at around 3 p.m. on the on the Fridays. I did actually check and we actually, since 2021, have set 24 times beyond 3 p.m. on PMS. And actually we're already set. You know, I think on the on the two days of Second Reading, this bill sat beyond 3 p.m.
So although it's advisory and it's the convention, it actually isn't a hard, fast rule. We don't have those at a hard, fast rules in terms of the points made by the noble Lady Baroness Stowell of Beeston when she was in the house. Again, because we are self-regulating, I don't think it does set a precedent, actually. You know, at the end of the day, this House decide what he wants to decide. You know, and as I said earlier on today, if you want to adjourn at 3:00, then you carry a motion.
We're going to adjourn at 3:00. So I don't think he does. But I do think I do accept, right, that these are this is a very important bill. Strongly held views on both sides. People want to give it scrutiny. And we have to have that flexibility maybe to ensure that
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all happens. I just wanted to, for the obvious reason, to place on record my personal thanks to the my personal thanks to the government Chief Whip, because I know he does take these matters extremely seriously. And if I may extremely seriously. And if I may say, I think he is placed in an invidious position because our procedures, it seems to me, are procedures, it seems to me, are just not designed for large, controversial, notionally private members bills of this nature.
And the government Chief whip, for whom I have the highest personal regard, is really caught in the middle in a very difficult position. But I wanted to put my thanks on record. I should tell the House that the way we are going to deal with it today is that my noble friend, Lord Kamall is at the moment attending Friday prayers. And so I'm here. And then from 3:00, when I'll be observing Shabbat, he'll be here. And I hope that's an example of the ecumenical of the ecumenical way.
These benches deal with these
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matters. Can I thank the noble Lord Fellowes very kind comments? Again, Fellowes very kind comments? Again, I say that although this is difficult, I've only ever had courtesy and and very, very warm courtesy and and very, very warm discussion with colleagues around the House on different views. Yes, it is a bit challenging at the moment. I actually do love being the Government Chief Whip and Captain of the Gentlemen at Arms is an absolute honour and a privilege,
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an absolute honour and a privilege, and I do want to work to serve the House to get this right. And thank you very much. Yeah. House be again.
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In Committee on the terminally ill adults end of life bill Lord Falconer of Thoroton. The House to now again resolve
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The House to now again resolve itself into a committee upon the bill. Question is that the House do
As to the current proposal for today to be bounced with that at 5:30 on Wednesday, when we make bookings weeks in advance, perhaps have commitments already entered into, it's utterly impossible to react. How can you change your plans at that late stage? Now, I know we're all in politics. I know we have to adjust. In the house has its natural rhythms, but I have to say that this is discriminating against anybody who has to travel from a significant difference. And we're against discrimination on this House and discriminating on the basis of geography, I don't think is fair.
And I think that we'll have to revisit this and see if we can find a way forward that meets the will of the House, expressed on the Thursday of last week, and at the same time does not exclude or effectively disadvantage those of us who have to travel a
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significant distance. Can I purchase? I have huge respect for the noble Lord and colleagues who actually serve in this House in all parts of our United Kingdom, including Northern United Kingdom, including Northern Ireland and Scotland. I accept the points he makes about the inconvenience he causes to colleagues. My door remains open. colleagues. My door remains open. I'll happily meet the noble Lord next week to discuss with you in future. I don't come here to annoy and aggravate all members of the House, and I feel that at the moment I'm doing just that is not my intention.
I love the house and I want the house to work well and I remain, you know, willing at any point, at any level or any ideas they've actually got. But, I mean, I'm both the government's business manager and people and the government's business through, and people want to use government time. I've also conscious of party debates and select committee reports and important colleagues, and it is very difficult, but I'm certainly able and my door is always open to any colleague to come and see me to discuss any other further, how we can move this
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forward. I'm very sorry to labour laws today. Chief Whip on when we should
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Chief Whip on when we should adjourn discussion of a group and carry it forward to the next designated day after we've reached the official knocking off time, the official knocking off time, shall we say the noble Lord, the Chief Whip, will know that on Tuesday last, when we're due to Tuesday last, when we're due to finish at 11:00, at two minutes to 11, the whip on duty suggested that we should adjourn the debate and we should adjourn the debate and continue the next day, even though there was only one peer left to speak.
We resolve that matter with the noble Lord. The Chief whips help. We continue the discussion. We finished at 11:07. Could you contrast that with last Friday, when at 2:30, when there were four noble peers ready, waiting to speak, the whip on duty decided that we needed to hear from the frontbench, and because the whole group had to be concluded by 3:00. I don't think that's right in accordance with our procedures. So I'd like some clarity from the noble Lord, the Chief Whip, please, on when we can, that we should be able to carry forward the remaining discussion on a group if we have not completed it by the official stopping time.
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I agree with the noble Lord Blencathra who is obviously very experienced member of this House. I experienced member of this House. I think it's fair to say that ideally, when we're discussing any legislation, if you can conclude a group of amendments on that day, it group of amendments on that day, it is better than not to conclude them. It's just better for management of the house, management of business. the house, management of business. But sometimes that is not possible, and I fully accept that when that is the case, what you should do is is the case, what you should do is you should adjourn mid group and then come back to it the next day.
And if that happens today, at any
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point I'll ensure that actually happens. I would like to ask what the
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I would like to ask what the Lord Empey said, and I know that many of our Scottish and Northern England colleagues are very much England colleagues are very much affected by this. I just want to draw his attention to one thing, my Lords. The House normally rises Lords. The House normally rises around 7:00 on Thursday evenings. That is reflected by the fact that there's no dinner, for example, in the dining room on Thursday evenings. Would it not be possible for the Lord to sit, the Lords to sit from 7:00 till, say, 10:00 and then release us at 3:00 on Friday so that we don't incur extra expense, which the House has to pay
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because of this change of business. I'm very happy to discuss that further. Noble Lady, next week and with the usual channels. But up to now, of course, PM's are dealt with on Fridays and and I think all my on Fridays and and I think all my colleagues want wanted to keep tonight. I wanted to keep to that. But as I said, I'm very happy to have that discussion next week to find another way forward to affordable. The House wants to do is buy more time for this bill and is buy more time for this bill and see if we can do that.
I'm very week.
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My Lords, I wonder if I might. Order particularly the concern of Jewish members of the House who are in a particular difficulty on Fridays. And perhaps it's better for something that's not Jewish to for something that's not Jewish to put that forward and say, could he please look at that very carefully?
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please look at that very carefully? I thank the Lord for his point. I genuinely do understand that, and I'm very conscious of that. And again, you know, I don't wish to cause any colleague, any member who is Jewish or any other faith, distress or inconvenience or problems in their faith by sitting beyond 3 p.m. It's why I did suggest that people could actually leave without hearing the debates. But that may not be acceptable for some colleagues. But I'm aware of that.
And as I said again, I will discuss this. What else we can do, but I apologise if not my intention to cause colleagues or members, noble Lords in the House who are Jewish, any distress or problems
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with their faith. I have a point of clarification from the noble Lord. But before I express that, I want to say that I think I speak for the whole house think I speak for the whole house when I say that we understand what a difficult position the noble Lord finds himself in, and how fair and how very fair he's trying to be to all sides in attempting to resolve all sides in attempting to resolve this. And certainly I can say I'm extremely grateful to him consistently for the fairness that he's displayed to the house.
My point is a point of the procedures of the House. When we have that unusual motion. Last week, the noble Lady Lady still of Beeston, a former Leader of the House, as we might recall, raised an important point at the end. And her point was simply this does this affect precedent and future procedure on private member's bill? I don't think she got an adequate response. And my question to the noble Lord today is, while I appreciate his flexibility in allowing noble Lords to leave before the end of the debate on a particular amendment, and I completely endorse all the comments made by other colleagues who live further away from the House about the troubles they would encounter.
But when we change the procedures of the House and more or less drive a coach of a coach and horses through the companion, are we not expected to have a debate on changes to the companion and make clear that we're not setting procedure in having that? And
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should we not be having a vote on that? I thank the noble Lady for a
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I thank the noble Lady for a very kind comments. I was much appreciated by me. I think what I can say is that we are a can say is that we are a self-regulating house and we have we've got a companion, we don't have fixed rules, we have have fixed rules, we have conventions, and we all try to work around those. And that enables our house to work in the unique way. It does work in that it's not in some ways it's it's not like the House of Commons.
I know the colleagues who come from the House of Commons say that they have strains. They find this when they first arrive here, but it does work. We actually, although the companion does, advise us to rise at around 3 p.m. on the on the Fridays. I did actually check and we actually, since 2021, have set 24 times beyond 3 p.m. on PMS. And actually we're already set. You know, I think on the on the two days of Second Reading, this bill sat beyond 3 p.m.
So although it's advisory and it's the convention, it actually isn't a hard, fast rule. We don't have those at a hard, fast rules in terms of the points made by the noble Lady Baroness Stowell of Beeston when she was in the house. Again, because we are self-regulating, I don't think it does set a precedent, actually. You know, at the end of the day, this House decide what he wants to decide. You know, and as I said earlier on today, if you want to adjourn at 3:00, then you carry a motion.
We're going to adjourn at 3:00. So I don't think he does. But I do think I do accept, right, that these are this is a very important bill. Strongly held views on both sides. People want to give it scrutiny. And we have to have that flexibility maybe to ensure that
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all happens. I just wanted to, for the obvious reason, to place on record my personal thanks to the my personal thanks to the government Chief Whip, because I know he does take these matters extremely seriously. And if I may extremely seriously. And if I may say, I think he is placed in an invidious position because our procedures, it seems to me, are procedures, it seems to me, are just not designed for large, controversial, notionally private members bills of this nature.
And the government Chief whip, for whom I have the highest personal regard, is really caught in the middle in a very difficult position. But I wanted to put my thanks on record. I should tell the House that the way we are going to deal with it today is that my noble friend, Lord Kamall is at the moment attending Friday prayers. And so I'm here. And then from 3:00, when I'll be observing Shabbat, he'll be here. And I hope that's an example of the ecumenical of the ecumenical way.
These benches deal with these
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matters. Can I thank the noble Lord Fellowes very kind comments? Again, Fellowes very kind comments? Again, I say that although this is difficult, I've only ever had courtesy and and very, very warm courtesy and and very, very warm discussion with colleagues around the House on different views. Yes, it is a bit challenging at the moment. I actually do love being the Government Chief Whip and Captain of the Gentlemen at Arms is an absolute honour and a privilege,
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an absolute honour and a privilege, and I do want to work to serve the House to get this right. And thank you very much. Yeah. House be again.
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In Committee on the terminally ill adults end of life bill Lord Falconer of Thoroton. The House to now again resolve
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The House to now again resolve itself into a committee upon the bill. Question is that the House do
12:25
Legislation: Terminally Ill Adults (End of Life) Bill - committee stage (day 6)
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Legislation: Terminally Ill Adults (End of Life) Bill - committee stage (day 6)
>> Question is that the House do now again resolve itself into a committee upon the bill, as many of committee upon the bill, as many of that opinion will say, content the contrary, not contents. The contrary, not contents. The contents have it. In clause one, amendment 27 Baroness Finlay of Llandaff.
12:25
Baroness Finlay of Llandaff (Crossbench)
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Baroness Finlay of Llandaff (Crossbench)
My Lords, amendment 27 is to ensure the person has made independent contact for information from their local assisted death service provider, not subtly coerced or pressured by someone who thought that they ought to consider assisted death. Getting information to inform decision making is crucial to supporting autonomy. Patients must be able to access all the details they need about an assisted death from a place that is not their primary source of care. Their doctor having alternative and independent sources of information for assisted death gives greater latitude for patients to understand their choice and at the pace that they need.
Excuse me one moment. I wonder if I could. Oh, I could do with some water, actually. Thank with some water, actually. Thank you so much. Thank you. I apologise for thank you. This bill, as the sponsors have made very clear, is about autonomy, their autonomy and decision making depends on having the information they need and in any format that they require, as as they drive their information gathering process themselves outside of the intricacies of the relationship with clinicians, the power imbalance between the doctor or senior nurse and the patient can be a distorting influence.
This amendment is designed to give the patient agency in how they learn about an assisted death, and amendment 42 requires that they're fully informed. Having an assisted death is a hugely consequential choice for someone to make, and their understanding of the drugs that they'll take and how the process works, and the consequences for self and others is crucial. I am concerned the bill does not include enough details about the process through which this can happen. My Lords, the Bill discusses but provides very few details about how this service is to be provided and funded.
It feels like a black hole in the bill. The Delegated Powers and Regulatory Reform Committee noted that one might expect the integration of the assisted dying system with the NHS to involve a substantial degree of new regulation, but the powers contained next to no indication of the shape or substance of the regulatory regime that is intended for these services. Instead, they give Ministers almost unlimited powers to legislate in an area by Statutory Instrument, and they go on to say in the report and I should declare that I was a member of that.
I'm a member of that committee. Clauses 41 and 42 are skeleton provision because they are so insubstantial that the real operation of the act would be entirely by regulations or orders made under it. The committee recommended that the delegated powers, clauses 41 and 42 could be removed from the bill, and, if alternative delegated powers in relation to the services are introduced, they're appropriately justified. Include sufficient detail and statement of principle to understand the intended regulatory system, limited to what is necessary to meet their objectives, and subject to the affirmative procedure.
In a similar way, there are glaring gaps in the bill. Clause five preliminary discussion with registered practitioners specifies in subsection six that a doctor unwilling or unable to conduct a preliminary discussion must ensure the person's directed to whether they can obtain information and have the preliminary discussion. Nothing's more said, though, about who may provide that information, what their qualifications are, and whether there's any government or regulatory oversight of those providing such information. Nor does the bill address the need for a trusted and neutral source of information, whether it is a register or an agency, or a local assisted dying service, all get to the heart of legislating in this way, none of the detail has been seems to have been worked through.
If this is to be a private service, the regulation envisaged in the bill is entirely inadequate. And if this is an NHS service, is it to be fully integrated or a separate service? How do we how we do this on the NHS doesn't seem to be clear at all. We must heed what the medical bodies have said on this. The BMA said there is nothing in the bill about how an assisted dying service might be delivered, although the possibility of a separate service is mentioned in the explanatory notes.
Whilst it is not for the BMA to determine how any assisted dying service should be delivered, our view is that assisted dying should not be part of the standard role of doctors or integrated into existing care pathways. It is not something that a doctor can just add to their usual role. Doctor Mulholland, from the Royal College of General Practitioners, had in his evidence said the shape of the service is not set out in the bill. We would say GPS need to have a space where they can step away from it.
That's a key point that we want to get across. For those who want to take part, it may be that they decide to do it, but it would have to sit outside the core general medical services that we provide at the moment. Amendment 28 also aims to avoid coercion by financial stringencies those patients thought to have a prognosis of a year or less are eligible for additional financial support. Under the special rules, the medical form SR one triggers faster, higher payments in existing benefits like personal independence payments and so on.
For those nearing the end of life, of course, the prognosis of the year is a pretty wild guess. So the Department of Work and Pensions allow a three year leeway before requiring greater individual assessment, ensuring people are able to access all the benefits they are entitled to is a safeguard against a person seeking assisted dying because of poverty. Evidence to the committee in the Other place highlighted that people who are ineligible for fast track funding, with a prognosis of over three months, are often concerned about their savings being rapidly depleted by the high cost of care and the impact.
Doctor Luke Hogan, policy lead of the British Association of Social Workers, in oral evidence to our Select Committee on the bill, stated we have been clear from the outset that social care in this country is in crisis and people are not getting the services they are entitled to. If you're not getting the care services and support services you're entitled to, and assisted death may be something that you would not have otherwise considered. Financial pressures are real. Six months care costs could equate to 25 to £40,000 of expense borne by an individual paying for their own residential care.
Annual Oregon data consistently shows almost half of those dying by ingesting lethal drug doses are influenced by feeling a burden to others. My Lords, I must apologise to the House for failing to spot that amendment 36 should not have been put in this group. Hence I am not speaking to that now. So in responding, I hope the noble Lord, Lord Faulkner, will explain how information to patients will be monitored for accuracy and impartiality. And when the noble Lady, the Minister dismisses amendments which could have been drafted, which have been drafted with the extensive help of the public Bill office, could she please explain how we can access the technical drafting support needed to ensure that amendments are workable, effective and enforceable? I beg to move.
Excuse me one moment. I wonder if I could. Oh, I could do with some water, actually. Thank with some water, actually. Thank you so much. Thank you. I apologise for thank you. This bill, as the sponsors have made very clear, is about autonomy, their autonomy and decision making depends on having the information they need and in any format that they require, as as they drive their information gathering process themselves outside of the intricacies of the relationship with clinicians, the power imbalance between the doctor or senior nurse and the patient can be a distorting influence.
This amendment is designed to give the patient agency in how they learn about an assisted death, and amendment 42 requires that they're fully informed. Having an assisted death is a hugely consequential choice for someone to make, and their understanding of the drugs that they'll take and how the process works, and the consequences for self and others is crucial. I am concerned the bill does not include enough details about the process through which this can happen. My Lords, the Bill discusses but provides very few details about how this service is to be provided and funded.
It feels like a black hole in the bill. The Delegated Powers and Regulatory Reform Committee noted that one might expect the integration of the assisted dying system with the NHS to involve a substantial degree of new regulation, but the powers contained next to no indication of the shape or substance of the regulatory regime that is intended for these services. Instead, they give Ministers almost unlimited powers to legislate in an area by Statutory Instrument, and they go on to say in the report and I should declare that I was a member of that.
I'm a member of that committee. Clauses 41 and 42 are skeleton provision because they are so insubstantial that the real operation of the act would be entirely by regulations or orders made under it. The committee recommended that the delegated powers, clauses 41 and 42 could be removed from the bill, and, if alternative delegated powers in relation to the services are introduced, they're appropriately justified. Include sufficient detail and statement of principle to understand the intended regulatory system, limited to what is necessary to meet their objectives, and subject to the affirmative procedure.
In a similar way, there are glaring gaps in the bill. Clause five preliminary discussion with registered practitioners specifies in subsection six that a doctor unwilling or unable to conduct a preliminary discussion must ensure the person's directed to whether they can obtain information and have the preliminary discussion. Nothing's more said, though, about who may provide that information, what their qualifications are, and whether there's any government or regulatory oversight of those providing such information. Nor does the bill address the need for a trusted and neutral source of information, whether it is a register or an agency, or a local assisted dying service, all get to the heart of legislating in this way, none of the detail has been seems to have been worked through.
If this is to be a private service, the regulation envisaged in the bill is entirely inadequate. And if this is an NHS service, is it to be fully integrated or a separate service? How do we how we do this on the NHS doesn't seem to be clear at all. We must heed what the medical bodies have said on this. The BMA said there is nothing in the bill about how an assisted dying service might be delivered, although the possibility of a separate service is mentioned in the explanatory notes.
Whilst it is not for the BMA to determine how any assisted dying service should be delivered, our view is that assisted dying should not be part of the standard role of doctors or integrated into existing care pathways. It is not something that a doctor can just add to their usual role. Doctor Mulholland, from the Royal College of General Practitioners, had in his evidence said the shape of the service is not set out in the bill. We would say GPS need to have a space where they can step away from it.
That's a key point that we want to get across. For those who want to take part, it may be that they decide to do it, but it would have to sit outside the core general medical services that we provide at the moment. Amendment 28 also aims to avoid coercion by financial stringencies those patients thought to have a prognosis of a year or less are eligible for additional financial support. Under the special rules, the medical form SR one triggers faster, higher payments in existing benefits like personal independence payments and so on.
For those nearing the end of life, of course, the prognosis of the year is a pretty wild guess. So the Department of Work and Pensions allow a three year leeway before requiring greater individual assessment, ensuring people are able to access all the benefits they are entitled to is a safeguard against a person seeking assisted dying because of poverty. Evidence to the committee in the Other place highlighted that people who are ineligible for fast track funding, with a prognosis of over three months, are often concerned about their savings being rapidly depleted by the high cost of care and the impact.
Doctor Luke Hogan, policy lead of the British Association of Social Workers, in oral evidence to our Select Committee on the bill, stated we have been clear from the outset that social care in this country is in crisis and people are not getting the services they are entitled to. If you're not getting the care services and support services you're entitled to, and assisted death may be something that you would not have otherwise considered. Financial pressures are real. Six months care costs could equate to 25 to £40,000 of expense borne by an individual paying for their own residential care.
Annual Oregon data consistently shows almost half of those dying by ingesting lethal drug doses are influenced by feeling a burden to others. My Lords, I must apologise to the House for failing to spot that amendment 36 should not have been put in this group. Hence I am not speaking to that now. So in responding, I hope the noble Lord, Lord Faulkner, will explain how information to patients will be monitored for accuracy and impartiality. And when the noble Lady, the Minister dismisses amendments which could have been drafted, which have been drafted with the extensive help of the public Bill office, could she please explain how we can access the technical drafting support needed to ensure that amendments are workable, effective and enforceable? I beg to move.
12:34
Baroness O'Loan (Crossbench)
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Baroness O'Loan (Crossbench)
Amendment proposed clause one, >> Amendment proposed clause one, page one, line 12. At end, insert the words as printed on Marshalled List.
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List. To amend my name, and I put my name to five other amendments in this group, all of which seek to ensure clarity about what's involved in the bill, to identify vulnerability, and to provide protection for those who may be subject to coercion or unaware of their rights. I support the noble Baroness Baroness Finlay amendment 27. The importance of this derives from the current structure of the bill and the massive deficiency in the bill's provisions. The bill does not say how assisted death services are to be provided.
As the DRC said, it's a huge black hole in the middle of the bill. No, it doesn't tell us where, when and by whom how services be delivered, and I think it's indicative of how unfit the bill is. Clause 41, as the noble Baroness Baroness Finlay said, does confer significant Henry the Eighth powers on the Secretary of State, requiring him to make provision to secure arrangements. And clause 42 permits Welsh Ministers to make provision. But there's no provision in the bill which came from the Commons.
And the noble Lord, Lord Falconer, hasn't introduced any amendments to address this lacuna. Does the noble Lord intend to do so? My Lords doctor, the those who were meant to deliver this service have not been consulted. As the BMA said, our view is that assisted dying should not be part of the standard role of doctors or integrated into existing care pathways. It's not something that doctors can just add to their usual role. And in 2024, 45% of BMA members said they weren't prepared to actively participate in the process.
19% were undecided. Where does the patient get neutral, unbiased information? Doctor Mulholland of the Royal College of General Practitioners, said the shape of the service is not set out in the bill. General practitioners need to have a space where they can step away from it. That is the key point we want to get across. For those who want to take part, if it may be that they decide to do so, but it would have to sit outside the core general medical services that we provide at the moment.
Chris Whitty, an oral Evans, said that Parliament should resolve this. How does the noble Lord, Lord Falconer, intend to resolve it? As a consequence of this, a person, particularly one with no family or friends, who can support the person for a variety of reasons, possibly when advised by a doctor that because of their condition, voluntary assisted death could be provided to them, is intensely vulnerable. This could happen even when they've made no requests for such provision. It may come as a significant shock to them on top of their existing vulnerability, as a consequence of the diagnosis and prognosis which they have received.
In such a situation. Isolated and vulnerable, accustomed, accustomed to believing that a doctor will always seek to help their recovery and do no harm, possibly even thinking that assisted death means palliative care rather than death, they will need some independent person to talk to, if only to try to ensure that they understand what they are committing to. As far as I can see, there is no such provision in the bill. It doesn't even say that the person who makes the request to die provided for in clause one, line 13 has to be the person who's referred to in clause one relatives, friends, professional adviser, or indeed anyone else could initiate the process.
Hence, I put my name to amendment 31, which would change the words of the bill from on request to on their own request. And further, since the bill doesn't exclude sections nine and 11 of the Mental Capacity Act, someone with a lasting power of attorney under the act could request assistance on behalf of the individual concerned. Once that request is made, the provisions follow. My Lords Amendment 68 a in the name of the noble Baroness Coffey is vital because it ensures that someone with an LPA can't assist the process.
Does the noble Lord, Lord Falconer, accept? This is a very real gap which this amendment was filled. If he doesn't accept the amendment, can he tell the House how he intends to ensure a person's voluntary wish to end their life in these circumstances? Amendment 38, in my name excludes from eligibility those with serious mental health conditions. It concerns whether they wish to die as a symptom of a specific illness. It applies to those with conditions known to cause episodic or chronic suicidal ideation, including but not limited to, bipolar disorder, borderline personality disorder, major depressive disorder, or schizoaffective disorder.
It seeks to distinguish between those who might seek an assisted death as an autonomous choice, and those who are seeking suicide because of serious history of mental health or disorder. My Lord, some mental health conditions have suicidality as a feature of the disorder. These people are by very definition at high risk of suicidality and self-harm. The intention of the bill should not be to view these people as the same as those who have made a voluntary choice to end their own lives.
Serious mental health conditions impair decision making and effective person's ability to make the irreversible decision to die. The amendment is limited and mental health issues like depression or anxiety would not be in the scope of this amendment. Doctor Annabelle Price notes that 20% of terminally ill patients have diagnostic depression, and around 10% have wished to hasten death, with this strongly linked to feeling suicidal. Professor Owen gave evidence that even subclinical mood problems or anxiety can affect judgement. And as the Royal College of Psychiatrists said in evidence as the voice of psychiatry and an organisation that has campaigned for decades to prevent people from dying by suicide, it is important that we directly acknowledge that the passing of this legislation would result in amendments to the suicide Act.
What, then, would this mean for suicide prevention efforts among the terminally ill population in England and Wales, a duty of care is imposed on clinicians to protect the safety and wellbeing of their patients, including those who are at risk of self-harm or suicide by the Mental Health Act, the Mental Capacity Act and the Human Rights Act. My Lords. In 2011, Lord Faulks commission resolved that does must be satisfied that there is no treatable mental condition. Contributing to the suicidal wish. Is the noble Lord Falconer now satisfied that these serious mental conditions are irrelevant to doctor and panel approval? I hope he will indicate that he will accept this amendment.
But if not, what amendments could he offer to establish protections for these individuals? I also support the noble Baroness Finlay amendment 28, which seeks to ensure that fast tracked benefits are made to those who qualify so they don't end their lives for financial reasons. In so many cases, the availability of financial support, which may be critical, is not known. And my brother died of cancer a couple of years ago. We had no knowledge that such support should have been made available available to him.
There are many others in similar circumstances who may opt for assisted death because their situation cannot be improved, as it could be if the financial help which should be made available were to be made available. I also support amendment 39, which deals with the very situation in which a person in care may be suffering from undiagnosed dementia. All in all that goes from that, it's important that there is a dementia assessment in the three months preceding an application for assisted death.
Given the government's figures on undiagnosed dementia, which range from 29 to 71% of cases in primary care. My Lords, many of us sadly have seen people we know and love in care homes and our experience has told us that they are suffering from undiagnosed dementia. It can take time for a diagnosis to be reached, especially where an individual with with dementia still understands the question that they may be asked and how to answer them, although they can't remember where they had a visit that day visitor that day, and do not even understand why they have to see a doctor.
People can be very convincing even when suffering from fairly advanced dementia. A visiting doctor, one of two independent doctors, will not necessarily identify undiagnosed dementia in a single visit. Amendment 39 requiring a specific clinical assessment for dementia in care homes is a very necessary safeguard. The question for the noble Lord, Lord Faulkner, must be would it be satisfactory for a patient with undiagnosed dementia deemed compliant by an overworked care home staff member, to be signed off by a doctor who has met them once? Always remembering that the second doctor has doesn't have to meet them at all.
Amendment 68 makes a categorical statement that nobody can take a decision on behalf of anyone else. Such clarity is very necessary, as I'm sure the noble Lord, Lord Falconer, will accept this. If he does not accept this amendment, can you provide details of any amendments which he will table to ensure that nobody other than, as provided for in the Bill, can take a decision that should someone else should be helped to die.
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List. To amend my name, and I put my name to five other amendments in this group, all of which seek to ensure clarity about what's involved in the bill, to identify vulnerability, and to provide protection for those who may be subject to coercion or unaware of their rights. I support the noble Baroness Baroness Finlay amendment 27. The importance of this derives from the current structure of the bill and the massive deficiency in the bill's provisions. The bill does not say how assisted death services are to be provided.
As the DRC said, it's a huge black hole in the middle of the bill. No, it doesn't tell us where, when and by whom how services be delivered, and I think it's indicative of how unfit the bill is. Clause 41, as the noble Baroness Baroness Finlay said, does confer significant Henry the Eighth powers on the Secretary of State, requiring him to make provision to secure arrangements. And clause 42 permits Welsh Ministers to make provision. But there's no provision in the bill which came from the Commons.
And the noble Lord, Lord Falconer, hasn't introduced any amendments to address this lacuna. Does the noble Lord intend to do so? My Lords doctor, the those who were meant to deliver this service have not been consulted. As the BMA said, our view is that assisted dying should not be part of the standard role of doctors or integrated into existing care pathways. It's not something that doctors can just add to their usual role. And in 2024, 45% of BMA members said they weren't prepared to actively participate in the process.
19% were undecided. Where does the patient get neutral, unbiased information? Doctor Mulholland of the Royal College of General Practitioners, said the shape of the service is not set out in the bill. General practitioners need to have a space where they can step away from it. That is the key point we want to get across. For those who want to take part, if it may be that they decide to do so, but it would have to sit outside the core general medical services that we provide at the moment.
Chris Whitty, an oral Evans, said that Parliament should resolve this. How does the noble Lord, Lord Falconer, intend to resolve it? As a consequence of this, a person, particularly one with no family or friends, who can support the person for a variety of reasons, possibly when advised by a doctor that because of their condition, voluntary assisted death could be provided to them, is intensely vulnerable. This could happen even when they've made no requests for such provision. It may come as a significant shock to them on top of their existing vulnerability, as a consequence of the diagnosis and prognosis which they have received.
In such a situation. Isolated and vulnerable, accustomed, accustomed to believing that a doctor will always seek to help their recovery and do no harm, possibly even thinking that assisted death means palliative care rather than death, they will need some independent person to talk to, if only to try to ensure that they understand what they are committing to. As far as I can see, there is no such provision in the bill. It doesn't even say that the person who makes the request to die provided for in clause one, line 13 has to be the person who's referred to in clause one relatives, friends, professional adviser, or indeed anyone else could initiate the process.
Hence, I put my name to amendment 31, which would change the words of the bill from on request to on their own request. And further, since the bill doesn't exclude sections nine and 11 of the Mental Capacity Act, someone with a lasting power of attorney under the act could request assistance on behalf of the individual concerned. Once that request is made, the provisions follow. My Lords Amendment 68 a in the name of the noble Baroness Coffey is vital because it ensures that someone with an LPA can't assist the process.
Does the noble Lord, Lord Falconer, accept? This is a very real gap which this amendment was filled. If he doesn't accept the amendment, can he tell the House how he intends to ensure a person's voluntary wish to end their life in these circumstances? Amendment 38, in my name excludes from eligibility those with serious mental health conditions. It concerns whether they wish to die as a symptom of a specific illness. It applies to those with conditions known to cause episodic or chronic suicidal ideation, including but not limited to, bipolar disorder, borderline personality disorder, major depressive disorder, or schizoaffective disorder.
It seeks to distinguish between those who might seek an assisted death as an autonomous choice, and those who are seeking suicide because of serious history of mental health or disorder. My Lord, some mental health conditions have suicidality as a feature of the disorder. These people are by very definition at high risk of suicidality and self-harm. The intention of the bill should not be to view these people as the same as those who have made a voluntary choice to end their own lives.
Serious mental health conditions impair decision making and effective person's ability to make the irreversible decision to die. The amendment is limited and mental health issues like depression or anxiety would not be in the scope of this amendment. Doctor Annabelle Price notes that 20% of terminally ill patients have diagnostic depression, and around 10% have wished to hasten death, with this strongly linked to feeling suicidal. Professor Owen gave evidence that even subclinical mood problems or anxiety can affect judgement. And as the Royal College of Psychiatrists said in evidence as the voice of psychiatry and an organisation that has campaigned for decades to prevent people from dying by suicide, it is important that we directly acknowledge that the passing of this legislation would result in amendments to the suicide Act.
What, then, would this mean for suicide prevention efforts among the terminally ill population in England and Wales, a duty of care is imposed on clinicians to protect the safety and wellbeing of their patients, including those who are at risk of self-harm or suicide by the Mental Health Act, the Mental Capacity Act and the Human Rights Act. My Lords. In 2011, Lord Faulks commission resolved that does must be satisfied that there is no treatable mental condition. Contributing to the suicidal wish. Is the noble Lord Falconer now satisfied that these serious mental conditions are irrelevant to doctor and panel approval? I hope he will indicate that he will accept this amendment.
But if not, what amendments could he offer to establish protections for these individuals? I also support the noble Baroness Finlay amendment 28, which seeks to ensure that fast tracked benefits are made to those who qualify so they don't end their lives for financial reasons. In so many cases, the availability of financial support, which may be critical, is not known. And my brother died of cancer a couple of years ago. We had no knowledge that such support should have been made available available to him.
There are many others in similar circumstances who may opt for assisted death because their situation cannot be improved, as it could be if the financial help which should be made available were to be made available. I also support amendment 39, which deals with the very situation in which a person in care may be suffering from undiagnosed dementia. All in all that goes from that, it's important that there is a dementia assessment in the three months preceding an application for assisted death.
Given the government's figures on undiagnosed dementia, which range from 29 to 71% of cases in primary care. My Lords, many of us sadly have seen people we know and love in care homes and our experience has told us that they are suffering from undiagnosed dementia. It can take time for a diagnosis to be reached, especially where an individual with with dementia still understands the question that they may be asked and how to answer them, although they can't remember where they had a visit that day visitor that day, and do not even understand why they have to see a doctor.
People can be very convincing even when suffering from fairly advanced dementia. A visiting doctor, one of two independent doctors, will not necessarily identify undiagnosed dementia in a single visit. Amendment 39 requiring a specific clinical assessment for dementia in care homes is a very necessary safeguard. The question for the noble Lord, Lord Faulkner, must be would it be satisfactory for a patient with undiagnosed dementia deemed compliant by an overworked care home staff member, to be signed off by a doctor who has met them once? Always remembering that the second doctor has doesn't have to meet them at all.
Amendment 68 makes a categorical statement that nobody can take a decision on behalf of anyone else. Such clarity is very necessary, as I'm sure the noble Lord, Lord Falconer, will accept this. If he does not accept this amendment, can you provide details of any amendments which he will table to ensure that nobody other than, as provided for in the Bill, can take a decision that should someone else should be helped to die.
12:43
Baroness Berger (Labour)
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Baroness Berger (Labour)
My Lords, I rise to speak to >> My Lords, I rise to speak to amendment 31, which is in the name of the Baroness, my friend Baroness Ritchie. This clarifies that the Ritchie. This clarifies that the request for assistance to end one's life must come from the terminally life must come from the terminally ill person themselves, leaving no room for doubt over whether someone else is able to make the request for them. Now, this may seem like a statement of the obvious, given that eligibility under the bill depends on both a clear, settled and informed wish to die and an absence of coercion.
But there are situations where it is possible to imagine the request being initiated by another person who claims to be speaking on the ill persons behalf, and in assessing doctor being persuaded to go along with it. The Bill, as we receive it, contains a number of provisions that are designed to allow another person a substantive role in the process, from the independent advocate who helps the terminally ill person to engage with their options, to the proxy who can sign a first or second declaration on their behalf.
It is not difficult to envision such a person taking taking it on themselves to tell a doctor that the ill person is interested in having a preliminary discussion under section five, or being the one to make an appointment that they explicitly say is for the purposes of a first declaration under section eight. Neither scenario is explicitly ruled out by the bill. And of course, there are no limits specified to the role of independent advocates. In particular, this is just one example of the many things that are not on the face of this bill, and are left to be decided through regulations later on.
We might even imagine a partner, a relative or friend purporting to speak on behalf of an ill person, telling the doctor that he or she is shy, exhausted or overwhelmed when in reality they are acting in their own interests. In oral evidence to the Lords Select Committee on the bill, we heard from Cheryl Henry Leach. She is the chief executive of Standing Together Against Domestic Abuse, and she highlighted that by nature, coercion is difficult to spot and there are serious concerns about protecting victims of abuse in this bill.
She also said, as did various other experts, including the mental health charity charity mind, that the current safeguards in this bill were not yet adequate. It is therefore vital that we do not leave any doubt on the face of this bill that a request for an assisted death can only be made by the person themselves. It is essential that clause one, which sets out the key principles of eligibility for an assisted death, is as clear and as accurate as possible, leaving no room at all for ambiguity or a wider interpretation later on.
I would be very grateful for confirmation from my noble and learned friend, Lord Faulkner, that it is his intention, as I take it to be, that there should be no scope at all for a person to request an assisted death on another person's behalf. If it is, then I urge him to accept that this is not a currently explicit in clause one and should be made. So, my Lords, this is a straightforward amendment, a straightforward safeguard that would make the bill clearer without complicating or clearer without complicating or slowing down the process in any way.
But there are situations where it is possible to imagine the request being initiated by another person who claims to be speaking on the ill persons behalf, and in assessing doctor being persuaded to go along with it. The Bill, as we receive it, contains a number of provisions that are designed to allow another person a substantive role in the process, from the independent advocate who helps the terminally ill person to engage with their options, to the proxy who can sign a first or second declaration on their behalf.
It is not difficult to envision such a person taking taking it on themselves to tell a doctor that the ill person is interested in having a preliminary discussion under section five, or being the one to make an appointment that they explicitly say is for the purposes of a first declaration under section eight. Neither scenario is explicitly ruled out by the bill. And of course, there are no limits specified to the role of independent advocates. In particular, this is just one example of the many things that are not on the face of this bill, and are left to be decided through regulations later on.
We might even imagine a partner, a relative or friend purporting to speak on behalf of an ill person, telling the doctor that he or she is shy, exhausted or overwhelmed when in reality they are acting in their own interests. In oral evidence to the Lords Select Committee on the bill, we heard from Cheryl Henry Leach. She is the chief executive of Standing Together Against Domestic Abuse, and she highlighted that by nature, coercion is difficult to spot and there are serious concerns about protecting victims of abuse in this bill.
She also said, as did various other experts, including the mental health charity charity mind, that the current safeguards in this bill were not yet adequate. It is therefore vital that we do not leave any doubt on the face of this bill that a request for an assisted death can only be made by the person themselves. It is essential that clause one, which sets out the key principles of eligibility for an assisted death, is as clear and as accurate as possible, leaving no room at all for ambiguity or a wider interpretation later on.
I would be very grateful for confirmation from my noble and learned friend, Lord Faulkner, that it is his intention, as I take it to be, that there should be no scope at all for a person to request an assisted death on another person's behalf. If it is, then I urge him to accept that this is not a currently explicit in clause one and should be made. So, my Lords, this is a straightforward amendment, a straightforward safeguard that would make the bill clearer without complicating or clearer without complicating or slowing down the process in any way.
12:47
Baroness Coffey (Conservative)
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Baroness Coffey (Conservative)
Now I'm conscious that I did ask the noble and learned Lord Lord Falconer of Thoroton about whether lasting power of attorney can be used. I'm pleased to say in debate that he said no, but what I am concerned about is that we may start to see quite a lot of case law emerge with this bill if it becomes an act. And therefore, I think it's really important that we start to put the level of protections in on the face of the bill.
And as has just also been suggested by the noble Baroness, Lady Berger, the reason I'm particularly keen on the lasting power of attorney issue to be put on the face of the bill, is in recognition that people are recognised as people who are getting towards the end of their life, who may have just only or less than six months to to live, that this is starting to could become something they would expect if they'd already transferred their decisions to an LPA.
A person acting with an LPA in order to start to make these decisions. But I think the sentiment of the House, and certainly that expressed by the noble and learned Lord, the sponsor of the bill, is that should not be the case. Therefore, that is why I have particularly want to see this on the face of the bill. I appreciate I haven't got a bill team of civil servants to say whether this is precisely how it should be addressed, but I hope that it's been sufficiently comprehensive.
Also, considering sections 911 of the different act to make sure that somebody's decision, if they're going to make it, has to be wholly and exclusively their own. It cannot be done with fluctuating conditions where people interchange on who's making that decision. Just the one person whose life it is that they are considering, who is going to take their own lives.
And as has just also been suggested by the noble Baroness, Lady Berger, the reason I'm particularly keen on the lasting power of attorney issue to be put on the face of the bill, is in recognition that people are recognised as people who are getting towards the end of their life, who may have just only or less than six months to to live, that this is starting to could become something they would expect if they'd already transferred their decisions to an LPA.
A person acting with an LPA in order to start to make these decisions. But I think the sentiment of the House, and certainly that expressed by the noble and learned Lord, the sponsor of the bill, is that should not be the case. Therefore, that is why I have particularly want to see this on the face of the bill. I appreciate I haven't got a bill team of civil servants to say whether this is precisely how it should be addressed, but I hope that it's been sufficiently comprehensive.
Also, considering sections 911 of the different act to make sure that somebody's decision, if they're going to make it, has to be wholly and exclusively their own. It cannot be done with fluctuating conditions where people interchange on who's making that decision. Just the one person whose life it is that they are considering, who is going to take their own lives.
12:49
Baroness Cash (Conservative)
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Baroness Cash (Conservative)
My Lords, I rise in support of >> My Lords, I rise in support of this group of amendments for a very specific reason. I did try to raise this in the Minister's closing last week as a question, but there was not time. The Ehrc came to give not time. The Ehrc came to give evidence, the Equality and Human Rights Commission and I declare an interest because at the time, but no longer was I commissioner of it. They gave evidence at the select committee, both in writing and orally, expressing grave concern about the adequacy of the equality impact assessment and the points that are coming up this morning in support of this group raised for me real questions around this.
And so I want to raise this now for Lord Faulkner to address the question about when are we going to see the gaps identified in that evidence given by Alastair Henderson, a commissioner at the. And in a follow up letter written to Lord Hope, identifying specifically where the Ehrc was concerned. When we're going to see a follow up to that, because it seems to me that many of the points here and in subsequent groups today are about the vulnerabilities of individuals in because of certain protected characteristics and lack of protection for those.
And we really as a house, the Ehrc has expressed no position on this bill, but is very concerned about it. And I think the same applies to many members of the House, that we really need answers to these questions in order to inform this debate fully. My Lords, I rise to speak to my amendments 40 and 59. The changes I'm proposing here may
And so I want to raise this now for Lord Faulkner to address the question about when are we going to see the gaps identified in that evidence given by Alastair Henderson, a commissioner at the. And in a follow up letter written to Lord Hope, identifying specifically where the Ehrc was concerned. When we're going to see a follow up to that, because it seems to me that many of the points here and in subsequent groups today are about the vulnerabilities of individuals in because of certain protected characteristics and lack of protection for those.
And we really as a house, the Ehrc has expressed no position on this bill, but is very concerned about it. And I think the same applies to many members of the House, that we really need answers to these questions in order to inform this debate fully. My Lords, I rise to speak to my amendments 40 and 59. The changes I'm proposing here may
12:51
Baroness Lawlor (Conservative)
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Baroness Lawlor (Conservative)
seem puzzling or pedantic, but when we're dealing with legislation we're dealing with legislation about life and death, every word matters. My two amendments, 40 and 59, aim to bring the same careful language to Subclauses two and three as already used in some three as already used in some clause one Subclause one sets out that if and only if conditions A, B, and C are met, then assistance to end a person's own life in accordance with sections 8 to 30 may be provided.
If any of these conditions is not met, then the action is subject to the existing criminal provisions of the Suicide Act 1961. Subclauses two and three. As they now stand, do not set out conditions in this way. Rather, these subclauses describe other parts of the bill. One. Two is framed as an observation about what sections 8 to 30 and one three sets out, and one three apparently sets out a geographical marker for what certain steps provided for elsewhere in this bill must be taken.
Subclause two therefore seems entirely redundant, since it purports merely to note what is said elsewhere. Subclause three is passing. Is the must a mistake for May only? My Lords, what perhaps is more important than such redundancy in elegance and imprecision in drafting is that in their present form, one two and one three do not deprive those who act in contravention, contravention of their subclauses of the protection of the law from assisting suicide. They fail to make it explicit that suicide remains prohibited and punishable unless it meets two A and two B and three A and three B.
My amendment removes this perhaps unintentional looseness. Perhaps the noble Lord would, like the sponsor would like to comment on the intention or non-intervention of the looseness my amendments, but try to do so by making it explicit that assistance to end a persons life may not be provided, unless to A to B and three A and three B are
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all met. My Lords, I rise to speak in support of amendment 38. In this support of amendment 38. In this group, which raises for the first time in your Lordships House, the complex issues of those who may be complex issues of those who may be physically terminally ill but also have long standing mental illnesses. Whilst the act cannot be used only Whilst the act cannot be used only for mental illness in clause two, for the cases where there is both physical and mental illness can be
If any of these conditions is not met, then the action is subject to the existing criminal provisions of the Suicide Act 1961. Subclauses two and three. As they now stand, do not set out conditions in this way. Rather, these subclauses describe other parts of the bill. One. Two is framed as an observation about what sections 8 to 30 and one three sets out, and one three apparently sets out a geographical marker for what certain steps provided for elsewhere in this bill must be taken.
Subclause two therefore seems entirely redundant, since it purports merely to note what is said elsewhere. Subclause three is passing. Is the must a mistake for May only? My Lords, what perhaps is more important than such redundancy in elegance and imprecision in drafting is that in their present form, one two and one three do not deprive those who act in contravention, contravention of their subclauses of the protection of the law from assisting suicide. They fail to make it explicit that suicide remains prohibited and punishable unless it meets two A and two B and three A and three B.
My amendment removes this perhaps unintentional looseness. Perhaps the noble Lord would, like the sponsor would like to comment on the intention or non-intervention of the looseness my amendments, but try to do so by making it explicit that assistance to end a persons life may not be provided, unless to A to B and three A and three B are
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all met. My Lords, I rise to speak in support of amendment 38. In this support of amendment 38. In this group, which raises for the first time in your Lordships House, the complex issues of those who may be complex issues of those who may be physically terminally ill but also have long standing mental illnesses. Whilst the act cannot be used only Whilst the act cannot be used only for mental illness in clause two, for the cases where there is both physical and mental illness can be
12:54
Baroness Berridge (Conservative)
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Baroness Berridge (Conservative)
physical and mental illness can be very complex and is an area where particular safeguards are needed, my main questions around those safeguards are for those who may be detained under the Mental Health Act and are more matters, I believe, from the noble Lady, the Minister rather than the sponsor. I served on your Lordships House Select Committee on the Mental Health Bill and, of course, a person detained under the Mental Health Act may yet still have capacity to make some or most of their own decisions.
So if someone has gone through the process in this bill with a six month prognosis, but they're outliving it, they can also have regular periods of being detained under the Mental Health Act. And it's and it's important that we are clear about the position legislatively for the patient clinicians and their family. So what is the position which of these statutes will make clear which piece of legislation takes priority? If it is the case, as I understand it, that there are scenarios where both pieces of legislation could apply to a particular patient.
You can be terminally, terminally, physically ill detained under the Mental Health Act but still have capacity. So you're under the Tia as well as the Mental Health Act. For clinicians, this relates to the strident evidence given to the Select Committee of your Lordships' House on this bill by Professor Alex Rudkin KC, which partly was outlined by my noble friend Lord Goodman, previously in your Lordships House, when he was speaking about teaching clinicians on capacity and the criminal law.
And I quote he said, I need to be able to say with crystal clarity, you are no longer in that zone, meaning the suicide prevention zone. You're now in the zone of the Tia bill. Now, obviously, the suicide prevention zone he was referring to is a general duty for clinicians to all patients. But it's highly relevant when there is detention under the Mental Health Act. When you're thinking of a patient under the mental health, it focuses that issue down. It is also important to know which regime takes precedence for the family.
The Tia bill this bill is about individual autonomy. So the family are irrelevant. But the new Mental Health Back Act has extensive powers for nominated persons, and that is often the family members to exercise certain powers, even to discharge the patient. It is also, of course, key for the patient who has capacity but is under the Mental Health Act and has a six month prognosis. Under the Mental Health Act, they can be made to take treatment. Treatment that may well then mean that they don't want to take the action under their existing declaration.
Under Tia has the noble Lady. The Minister considered how the new Mental Health Act relates to this situation. I think, my Lords, that this issue exemplifies that the committee of this House is actually trying to do a white paper or consultation function. The problem that I have outlined and that Mr. Rankine outlined stems, I believe, from the different philosophy under each of these pieces of legislation. The Terminally ill Adults Bill is all about personal autonomy. But the Mental Health Act is about treatment of illness, prevention of harm and preservation of life.
This bill is the state enabling and enhancing autonomy to take your own life. But the Mental Health Act is the state taking away some of your autonomy in order to preserve your life and prevent you taking your life? So the guiding principle in the in the new Mental Health Act is, of course, one of the guiding principles is about enhancing choice and autonomy, precisely because the Mental Health Act powers take away some of an individual's autonomy, even when they still have capacity.
So no wonder if we've got different philosophical bases under two pieces of legislation, that there is not the crystal clarity that Mr. Ruck-keene outlined to us for him and other clinicians, in practice, there is a human face, of course, also to this. Let's take, for instance, a young adult lives at home. They've been out of secure care for decades. They've always been treated well, their suicidal ideations managed, and they're well known to the local services. But they now have a terminal physical diagnosis and they have a six month diagnosis.
They've gone through the procedure in the bill, but they're now outliving that. But on the powers of admission for the mental illness, they're treated and they've been treated on a number of occasions, and they're no longer want to exercise their declaration. However, let's take, for instance, their family carers go on an extended family and extended holiday, and they go to stay with other family in a different part of the country. They get mentally ill. They're admitted they have capacity under the Mental Capacity Act.
So can the Tia bill be used in this situation on their declaration or do they have to treat? Do the nominated persons have to be told? Because if you're exercising a Tia, you're no longer under the Mental Health Act? Could it be that the Tia is actually used without the family being told? Which we know is the scenario given by evidence from medical examiners? They come home and their relatives died, and no one knew that they'd just been accepted on a clinical trial at the local hospital for all concerned.
My Lords, the way in which these two pieces of legislation and this matter was the subject of comment and discussion in the House of Commons, how they fit together needs to be considered because it could affect the very good and hard work that's been done by the noble Lady, the Minister on the Mental Health Act. So I do hope His Majesty's Government actually will come forward with amendments, or offer a meeting to noble Lords and the relevant clinicians. The Royal College of Psychiatrists, Professor Sir Alex Ruck-keene, so that we can understand how these pieces of legislation will work together and avoid further amendments being laid,
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which is why I've taken the first opportunity to raise this matter with your Lordship. Thank you. To me.
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To me. This is an opportunity for the noble Lord to help the House and noble Lord to help the House and speed the bill, because here are a whole series of amendments which whole series of amendments which are designed to deal with the
So if someone has gone through the process in this bill with a six month prognosis, but they're outliving it, they can also have regular periods of being detained under the Mental Health Act. And it's and it's important that we are clear about the position legislatively for the patient clinicians and their family. So what is the position which of these statutes will make clear which piece of legislation takes priority? If it is the case, as I understand it, that there are scenarios where both pieces of legislation could apply to a particular patient.
You can be terminally, terminally, physically ill detained under the Mental Health Act but still have capacity. So you're under the Tia as well as the Mental Health Act. For clinicians, this relates to the strident evidence given to the Select Committee of your Lordships' House on this bill by Professor Alex Rudkin KC, which partly was outlined by my noble friend Lord Goodman, previously in your Lordships House, when he was speaking about teaching clinicians on capacity and the criminal law.
And I quote he said, I need to be able to say with crystal clarity, you are no longer in that zone, meaning the suicide prevention zone. You're now in the zone of the Tia bill. Now, obviously, the suicide prevention zone he was referring to is a general duty for clinicians to all patients. But it's highly relevant when there is detention under the Mental Health Act. When you're thinking of a patient under the mental health, it focuses that issue down. It is also important to know which regime takes precedence for the family.
The Tia bill this bill is about individual autonomy. So the family are irrelevant. But the new Mental Health Back Act has extensive powers for nominated persons, and that is often the family members to exercise certain powers, even to discharge the patient. It is also, of course, key for the patient who has capacity but is under the Mental Health Act and has a six month prognosis. Under the Mental Health Act, they can be made to take treatment. Treatment that may well then mean that they don't want to take the action under their existing declaration.
Under Tia has the noble Lady. The Minister considered how the new Mental Health Act relates to this situation. I think, my Lords, that this issue exemplifies that the committee of this House is actually trying to do a white paper or consultation function. The problem that I have outlined and that Mr. Rankine outlined stems, I believe, from the different philosophy under each of these pieces of legislation. The Terminally ill Adults Bill is all about personal autonomy. But the Mental Health Act is about treatment of illness, prevention of harm and preservation of life.
This bill is the state enabling and enhancing autonomy to take your own life. But the Mental Health Act is the state taking away some of your autonomy in order to preserve your life and prevent you taking your life? So the guiding principle in the in the new Mental Health Act is, of course, one of the guiding principles is about enhancing choice and autonomy, precisely because the Mental Health Act powers take away some of an individual's autonomy, even when they still have capacity.
So no wonder if we've got different philosophical bases under two pieces of legislation, that there is not the crystal clarity that Mr. Ruck-keene outlined to us for him and other clinicians, in practice, there is a human face, of course, also to this. Let's take, for instance, a young adult lives at home. They've been out of secure care for decades. They've always been treated well, their suicidal ideations managed, and they're well known to the local services. But they now have a terminal physical diagnosis and they have a six month diagnosis.
They've gone through the procedure in the bill, but they're now outliving that. But on the powers of admission for the mental illness, they're treated and they've been treated on a number of occasions, and they're no longer want to exercise their declaration. However, let's take, for instance, their family carers go on an extended family and extended holiday, and they go to stay with other family in a different part of the country. They get mentally ill. They're admitted they have capacity under the Mental Capacity Act.
So can the Tia bill be used in this situation on their declaration or do they have to treat? Do the nominated persons have to be told? Because if you're exercising a Tia, you're no longer under the Mental Health Act? Could it be that the Tia is actually used without the family being told? Which we know is the scenario given by evidence from medical examiners? They come home and their relatives died, and no one knew that they'd just been accepted on a clinical trial at the local hospital for all concerned.
My Lords, the way in which these two pieces of legislation and this matter was the subject of comment and discussion in the House of Commons, how they fit together needs to be considered because it could affect the very good and hard work that's been done by the noble Lady, the Minister on the Mental Health Act. So I do hope His Majesty's Government actually will come forward with amendments, or offer a meeting to noble Lords and the relevant clinicians. The Royal College of Psychiatrists, Professor Sir Alex Ruck-keene, so that we can understand how these pieces of legislation will work together and avoid further amendments being laid,
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which is why I've taken the first opportunity to raise this matter with your Lordship. Thank you. To me.
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To me. This is an opportunity for the noble Lord to help the House and noble Lord to help the House and speed the bill, because here are a whole series of amendments which whole series of amendments which are designed to deal with the
13:01
Lord Deben (Conservative)
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Lord Deben (Conservative)
genuine concerns of the experts who are going to have to actually carry this law into effect if we are to pass it. Now, those of us who are may in fact have strong views about the principle, but we have a duty to do our best to make this bill work. And I want to say to the noble Lord that one of the problems that people have is that he has so far not been willing to tell the House that he will meet concerns by proposing amendments himself.
And in this particular group of amendments, which is why I tried to wait until the end of it, because it's not any individual one that I write to speak. In. This particular group of amendments are a whole series of reflections of the concerns of those who are going to have to deal with this bill when it is passed. And it does seem to me that this is an occasion in which we can overcome a lot of the concerns, and I might even say, suspicions that actually there is no intention of changing anything, and that it will just be pushed through however long it takes, in order that there should not be a concern at the other end of the corridor, I'm sure that the noble Lord doesn't really think that, but I do think he needs to reassure the House, and I think we'll get much faster, further and much faster if he can look at these amendments and say, I am going to bring forward amendments which reflect the concerns here, which themselves reflect the concerns of the various medical bodies, in particular, in order that this bill will be a more effective act.
Now, if he doesn't do that, there is a very serious criticism of this bill, and it is that we are not reflecting in this House the concerns of those who, next to the people who make this choice matter most, they are the people who have to implement it. And all the medical bodies have reservations. Some few are opposed to it. In principle, I am perhaps more interested in those who are not opposed to it in principle, but who are concerned about it in practice.
Now, if we are not prepared to make the changes which make them happy, well, perhaps happy is the wrong word. Able in good conscience to support this bill and follow it through, then we will not have done our job as this reforming house. And I say this because I have become rather weary with the fact that what appears to be true is that there are those for whom this is so important a doctrinal position, that they are not prepared to consider that this particular formulation needs alteration.
And I therefore ask the noble Lord when he comes to answer, to consider very seriously a willingness to say, I will go through these amendments, talk to the people outside if necessary, and I will bring forward the kinds of amendments which will meet the real concerns of those people upon whom I'm going to depend for the efficacy of this legislation. If it is passed. I have to say that if the noble Lord is unable to do that, then more and more of us will begin to wonder whether this is really a debate about the issue in which we're trying to improve and make the best bill possible.
Or is it merely a debate which will be prolonged for as long as has to be, in order to put exactly the same bill through to the House of Commons? If it's that, then frankly, all of us who have doubts about it should redouble our doubts. If it is not that, then we have a duty to help the noble Lord to get the best bill possible. But it's in his hands, and this may well be the moment for him to show his hand.
And in this particular group of amendments, which is why I tried to wait until the end of it, because it's not any individual one that I write to speak. In. This particular group of amendments are a whole series of reflections of the concerns of those who are going to have to deal with this bill when it is passed. And it does seem to me that this is an occasion in which we can overcome a lot of the concerns, and I might even say, suspicions that actually there is no intention of changing anything, and that it will just be pushed through however long it takes, in order that there should not be a concern at the other end of the corridor, I'm sure that the noble Lord doesn't really think that, but I do think he needs to reassure the House, and I think we'll get much faster, further and much faster if he can look at these amendments and say, I am going to bring forward amendments which reflect the concerns here, which themselves reflect the concerns of the various medical bodies, in particular, in order that this bill will be a more effective act.
Now, if he doesn't do that, there is a very serious criticism of this bill, and it is that we are not reflecting in this House the concerns of those who, next to the people who make this choice matter most, they are the people who have to implement it. And all the medical bodies have reservations. Some few are opposed to it. In principle, I am perhaps more interested in those who are not opposed to it in principle, but who are concerned about it in practice.
Now, if we are not prepared to make the changes which make them happy, well, perhaps happy is the wrong word. Able in good conscience to support this bill and follow it through, then we will not have done our job as this reforming house. And I say this because I have become rather weary with the fact that what appears to be true is that there are those for whom this is so important a doctrinal position, that they are not prepared to consider that this particular formulation needs alteration.
And I therefore ask the noble Lord when he comes to answer, to consider very seriously a willingness to say, I will go through these amendments, talk to the people outside if necessary, and I will bring forward the kinds of amendments which will meet the real concerns of those people upon whom I'm going to depend for the efficacy of this legislation. If it is passed. I have to say that if the noble Lord is unable to do that, then more and more of us will begin to wonder whether this is really a debate about the issue in which we're trying to improve and make the best bill possible.
Or is it merely a debate which will be prolonged for as long as has to be, in order to put exactly the same bill through to the House of Commons? If it's that, then frankly, all of us who have doubts about it should redouble our doubts. If it is not that, then we have a duty to help the noble Lord to get the best bill possible. But it's in his hands, and this may well be the moment for him to show his hand.
13:05
Baroness Jay of Paddington (Labour)
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Baroness Jay of Paddington (Labour)
Yeah. >> Would accept. >> The actual evidence of one member of the medical profession who gave evidence to the Royal committee. Sorry. So to the select committee, who I think did reflect a lot of the concerns that people who support the bill do agree with, in which she said, and I quote her directly, when the healthcare professions get it wrong, it's usually because we're being paternalistic. Now, I would say that a great many of the amendments which are produced this morning under this group, are very well intentioned, very well meaning in terms of their concern for patients, do allow the fact that they rely on an assumption that the medical professions in their doubts may act.
Paternalistically now, I've been married for a very long time to a doctor who would certainly say that the practice of medicine has changed hugely in his lifetime, and that when he first qualified and was a young doctor, they were paternalistic. But now there is much greater assumption that the the words, the intentions, the wishes of the patient should be the ones that carry force. And that is obviously the philosophy behind so much of this amendments, which is, in a sense, to reintroduce the paternalistic attitude of the medical profession when those of us who support the bill would be much more concerned to support its underlying principle of the
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autonomy of the individual patient. Intervention. And I hope it was because then I would be able to to to comment on it. If I say to the noble Lady, I really do think that if we're starting to talk in terms if we're starting to talk in terms of paternalism, we're really going backwards in time. We really aren't talking about that at all. What talking about that at all. What we're talking about is the legislation of this House and the House of Commons.
We are talking about how we produce legislation that works. And what worries me is that there are a lot of words like paternalism and kindness and others that we can use, and that makes us less precise. And law has got to be precise enough for it to be properly implemented. And frankly, the intervention of the noble Lady some something else up there is a paternalism among some in this House who really do feel that if that they're so right about this bill, that they can ignore the comments of people who are trying very hard to overcome their own prejudices, if that's the right word, in order to get this bill right.
And I do find it a bit discomfiting from time to time to be lectured as if I should not be making any of these comments, because I don't seem to understand the higher views which are being presented. All I'm trying to do is after being a member of Parliament for 40 years and knowing what goes on in families in terrible circumstances, I want to protect people and that's my job. It's been my job all my life, and the fact that the noble Lady is shaking her head, that isn't paternalism.
That's the role of leadership in any circumstances. And it's what decent people do. And above all, it's what kindness demands.
Paternalistically now, I've been married for a very long time to a doctor who would certainly say that the practice of medicine has changed hugely in his lifetime, and that when he first qualified and was a young doctor, they were paternalistic. But now there is much greater assumption that the the words, the intentions, the wishes of the patient should be the ones that carry force. And that is obviously the philosophy behind so much of this amendments, which is, in a sense, to reintroduce the paternalistic attitude of the medical profession when those of us who support the bill would be much more concerned to support its underlying principle of the
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autonomy of the individual patient. Intervention. And I hope it was because then I would be able to to to comment on it. If I say to the noble Lady, I really do think that if we're starting to talk in terms if we're starting to talk in terms of paternalism, we're really going backwards in time. We really aren't talking about that at all. What talking about that at all. What we're talking about is the legislation of this House and the House of Commons.
We are talking about how we produce legislation that works. And what worries me is that there are a lot of words like paternalism and kindness and others that we can use, and that makes us less precise. And law has got to be precise enough for it to be properly implemented. And frankly, the intervention of the noble Lady some something else up there is a paternalism among some in this House who really do feel that if that they're so right about this bill, that they can ignore the comments of people who are trying very hard to overcome their own prejudices, if that's the right word, in order to get this bill right.
And I do find it a bit discomfiting from time to time to be lectured as if I should not be making any of these comments, because I don't seem to understand the higher views which are being presented. All I'm trying to do is after being a member of Parliament for 40 years and knowing what goes on in families in terrible circumstances, I want to protect people and that's my job. It's been my job all my life, and the fact that the noble Lady is shaking her head, that isn't paternalism.
That's the role of leadership in any circumstances. And it's what decent people do. And above all, it's what kindness demands.
13:09
Lord Harper (Conservative)
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Lord Harper (Conservative)
Yeah, yeah, yeah. >> My Lords, I'm going to speak to two group groups in or two blocks of amendments in this group. But before I just turn to that, I just before I just turn to that, I just wanted to just pick up on the points that the noble Lord Lord Deben made. I strongly agreed with the thrust of his speech, and I look forward to the response of the noble and learned Lord, Lord Falconer of Thoroton, to this group, not just on his response to these specific amendments, but perhaps it will give us a sign of how he intends to respond.
Because I do agree that if the noble and learned Lord listens to the concerns that there are in the House and sets out clearly on the floor of the House on the public record, what he intends to do about some of them, that's actually the best way, from his point of view, in in making Progress. And I do think it's important that those commitments are made on the floor of the House in public rather than in private meetings.
I think that's how Ministers generally conduct themselves when they're discussing concerns with backbenchers. They might have meetings to discuss those concerns, but certainly when I was a Minister, I was always expected to set out at the Dispatch Box what it was I was committing to do on behalf of the government, so that people were confident that we all had an agreement and that it couldn't be walked back. And I think, given that we're in a slightly different situation here because it's a private member's bill, and the noble and learned Lord is the sponsor, I would expect him to behave in the same way as a Minister piloting a bill through to give that level of public transparency, and I hope he'll be able to do so.
I'd also just like to pick up on what Lord Deben said in response to the noble Baroness Jay of Paddington. I actually I agree with her that we shouldn't be paternalistic, but I don't agree that that's what we're in danger of doing. What this group of amendments about is about making sure that other people are not making decisions on behalf of the individual who is going to end up losing their life. This is about making sure it is actually their decision, and they're not being pressured into it, and someone isn't making it on their behalf.
Actually allowing somebody else to allow someone to be killed is that that's the paternalistic thing, to turn a blind eye to it and to do nothing about it, to make sure that it is genuinely that individual's settled will. That's the opposite of paternalism. And that's what we're trying to do in this group of amendments. The first one I wanted to just briefly refer to was amendment 28. That's in the name of my noble friend, the Baroness Finlay of Llandaff.
It's about setting out the eligibility criteria that someone is entitled to benefits under the special rules. So that's Personal Independence Payment, for example, on the grounds of terminal illness. The reason for it. And I accept that the noble and learned Lord Hall Falconer may quibble with the wording. The point of it is to make sure that the person is has gone through that process to apply for that benefit, to make sure that one of the reasons they're not seeking assisted suicide is because of financial pressure.
Now, there may be other ways of achieving that, but that is the purpose of the amendment. And I think that's very important. The House will be aware that under our rules, under Personal Independence Payment, if you have a terminal illness diagnosis, there's a fast track procedure, rightly so, that you can get financial support much more quickly than under the normal process. That's very important, so that someone facing a terminal diagnosis doesn't have financial pressures added to all of the other things that they're dealing with.
And I think this amendment is a sensible way of ensuring that someone has got that financial support to make sure that isn't the reason they're seeking assisted suicide. The second group that I wanted to support, amendment 31, amendment 68 and 68, to which I've attached my names. This is to make sure that it is genuinely somebody's own request. Now, the reason why that's important is we'll hear from the noble and Lord in a minute about whether he thinks the drafting of the bill already deals with this.
But I'm very mindful of the issue that we hear. I think every week, pretty much. And I suspect we will again today from the noble Lady, the Minister, who usually has an extensive piece in her briefing about counselling us, about the concerns about the Convention on Human Rights and the extent to which decisions that this House might take might end up being challenged under that legislation, that we should bear that in mind. And I always listen to the noble Lady, the Minister with care, and I'm effectively doing what she's asking us to do, which is being concerned about that.
And so my concern would be, even if the noble and learned Lord, Lord Falconer of Thoroton is able to assure us that the Bill, as drafted, in his view, doesn't present this risk. My concern, and why I would still want him to look seriously at these amendments is because of a concern which we've seen in other jurisdictions about judicial oversight and judicial moving of the goalposts. And I think it's only by we know this legislation will get inevitably get challenged.
And what I want to do is make sure that we don't find judges starting to move the goalposts when there are challenges and allowing things to happen that we wouldn't want it to have happened. And if, as I think is agreed on both sides of this argument, that you shouldn't be able, for example, to use a lasting power of attorney to seek the death of another person? I think there's general. I see the noble and learned Lord nodding. There's general agreement on that.
I think it should be put explicitly on the face of the bill, and that prevents any judicial change to it. Now, a judicial ruling could then say that the the bill was incompatible, but what it couldn't do without Parliament is change the law. It could say it thought that this was incompatible with the Human Rights Act, but it absolutely couldn't change the law and allow somebody to have an assisted suicide at the request of somebody else. So even if the noble Lord thinks that the concerns that we've got are misplaced, given that he does actually agree with our contention that this should be put beyond doubt, I would argue that either accepting these amendments or if they are technically faulty, which I accept given that we don't have all of the support that the the government and he is having in terms of drafting support has, if he can come forward with some better drafted amendments to deal with that concern on an issue on which there is agreement, then I think that would be very welcome and would enable us to make progress.
And I hope that he will be able to address this group of amendments in that spirit and the
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spirit with which I know they are intended. If I may.
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If I may. Lords, I very strongly support what the noble Lord Lord Deben has what the noble Lord Lord Deben has said. I just would like to correct something that the noble and learned Lord Falconer of Thoroton learned Lord Falconer of Thoroton said in his email yesterday. I think I'm extremely anxious to get think I'm extremely anxious to get this bill through to Third Reading, but I profoundly dislike it, and I never said that I wanted to get it through right the way through to the House of Commons.
I just wanted
Because I do agree that if the noble and learned Lord listens to the concerns that there are in the House and sets out clearly on the floor of the House on the public record, what he intends to do about some of them, that's actually the best way, from his point of view, in in making Progress. And I do think it's important that those commitments are made on the floor of the House in public rather than in private meetings.
I think that's how Ministers generally conduct themselves when they're discussing concerns with backbenchers. They might have meetings to discuss those concerns, but certainly when I was a Minister, I was always expected to set out at the Dispatch Box what it was I was committing to do on behalf of the government, so that people were confident that we all had an agreement and that it couldn't be walked back. And I think, given that we're in a slightly different situation here because it's a private member's bill, and the noble and learned Lord is the sponsor, I would expect him to behave in the same way as a Minister piloting a bill through to give that level of public transparency, and I hope he'll be able to do so.
I'd also just like to pick up on what Lord Deben said in response to the noble Baroness Jay of Paddington. I actually I agree with her that we shouldn't be paternalistic, but I don't agree that that's what we're in danger of doing. What this group of amendments about is about making sure that other people are not making decisions on behalf of the individual who is going to end up losing their life. This is about making sure it is actually their decision, and they're not being pressured into it, and someone isn't making it on their behalf.
Actually allowing somebody else to allow someone to be killed is that that's the paternalistic thing, to turn a blind eye to it and to do nothing about it, to make sure that it is genuinely that individual's settled will. That's the opposite of paternalism. And that's what we're trying to do in this group of amendments. The first one I wanted to just briefly refer to was amendment 28. That's in the name of my noble friend, the Baroness Finlay of Llandaff.
It's about setting out the eligibility criteria that someone is entitled to benefits under the special rules. So that's Personal Independence Payment, for example, on the grounds of terminal illness. The reason for it. And I accept that the noble and learned Lord Hall Falconer may quibble with the wording. The point of it is to make sure that the person is has gone through that process to apply for that benefit, to make sure that one of the reasons they're not seeking assisted suicide is because of financial pressure.
Now, there may be other ways of achieving that, but that is the purpose of the amendment. And I think that's very important. The House will be aware that under our rules, under Personal Independence Payment, if you have a terminal illness diagnosis, there's a fast track procedure, rightly so, that you can get financial support much more quickly than under the normal process. That's very important, so that someone facing a terminal diagnosis doesn't have financial pressures added to all of the other things that they're dealing with.
And I think this amendment is a sensible way of ensuring that someone has got that financial support to make sure that isn't the reason they're seeking assisted suicide. The second group that I wanted to support, amendment 31, amendment 68 and 68, to which I've attached my names. This is to make sure that it is genuinely somebody's own request. Now, the reason why that's important is we'll hear from the noble and Lord in a minute about whether he thinks the drafting of the bill already deals with this.
But I'm very mindful of the issue that we hear. I think every week, pretty much. And I suspect we will again today from the noble Lady, the Minister, who usually has an extensive piece in her briefing about counselling us, about the concerns about the Convention on Human Rights and the extent to which decisions that this House might take might end up being challenged under that legislation, that we should bear that in mind. And I always listen to the noble Lady, the Minister with care, and I'm effectively doing what she's asking us to do, which is being concerned about that.
And so my concern would be, even if the noble and learned Lord, Lord Falconer of Thoroton is able to assure us that the Bill, as drafted, in his view, doesn't present this risk. My concern, and why I would still want him to look seriously at these amendments is because of a concern which we've seen in other jurisdictions about judicial oversight and judicial moving of the goalposts. And I think it's only by we know this legislation will get inevitably get challenged.
And what I want to do is make sure that we don't find judges starting to move the goalposts when there are challenges and allowing things to happen that we wouldn't want it to have happened. And if, as I think is agreed on both sides of this argument, that you shouldn't be able, for example, to use a lasting power of attorney to seek the death of another person? I think there's general. I see the noble and learned Lord nodding. There's general agreement on that.
I think it should be put explicitly on the face of the bill, and that prevents any judicial change to it. Now, a judicial ruling could then say that the the bill was incompatible, but what it couldn't do without Parliament is change the law. It could say it thought that this was incompatible with the Human Rights Act, but it absolutely couldn't change the law and allow somebody to have an assisted suicide at the request of somebody else. So even if the noble Lord thinks that the concerns that we've got are misplaced, given that he does actually agree with our contention that this should be put beyond doubt, I would argue that either accepting these amendments or if they are technically faulty, which I accept given that we don't have all of the support that the the government and he is having in terms of drafting support has, if he can come forward with some better drafted amendments to deal with that concern on an issue on which there is agreement, then I think that would be very welcome and would enable us to make progress.
And I hope that he will be able to address this group of amendments in that spirit and the
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spirit with which I know they are intended. If I may.
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If I may. Lords, I very strongly support what the noble Lord Lord Deben has what the noble Lord Lord Deben has said. I just would like to correct something that the noble and learned Lord Falconer of Thoroton learned Lord Falconer of Thoroton said in his email yesterday. I think I'm extremely anxious to get think I'm extremely anxious to get this bill through to Third Reading, but I profoundly dislike it, and I never said that I wanted to get it through right the way through to the House of Commons.
I just wanted
13:17
Baroness Butler-Sloss (Crossbench)
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Baroness Butler-Sloss (Crossbench)
to put that right. I would doubt that the points made by the noble that the points made by the noble Lord Harper, that judges would be moving the goalposts. I think he is moving the goalposts. I think he is in a different world from me. Having been a judge. I don't remember ever moving the goalposts. It's only when the law is uncertain that judges from time to time have that judges from time to time have to come to decisions as to what the
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law really matter. noble and learned Lady. And of course, I defer to her on the course, I defer to her on the knowledge of the point I was making. I think is the same one. The point I'm saying is we should make sure that the legislation is absolutely clear. Then there's no risk of it. The other issue, of course, is so The other issue, of course, is so much of this legislation is not in statute, but is left to regulations. And that's much easier for judges to challenge than primary legislation.
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Yes. If Parliament has passed regulations or Parliament has regulations or Parliament has passed primary legislation, judges apply it. They certainly don't look apply it. They certainly don't look to try and move the goalposts. That's the only point I'm making. And the last point I wanted to make And the last point I wanted to make was as a recipient of a lasting power of attorney in the hands of my children. I certainly don't want
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my children. I certainly don't want them to decide when I die. They're here, my Lord, my Lords, I support the point about lasting
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law really matter. noble and learned Lady. And of course, I defer to her on the course, I defer to her on the knowledge of the point I was making. I think is the same one. The point I'm saying is we should make sure that the legislation is absolutely clear. Then there's no risk of it. The other issue, of course, is so The other issue, of course, is so much of this legislation is not in statute, but is left to regulations. And that's much easier for judges to challenge than primary legislation.
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Yes. If Parliament has passed regulations or Parliament has regulations or Parliament has passed primary legislation, judges apply it. They certainly don't look apply it. They certainly don't look to try and move the goalposts. That's the only point I'm making. And the last point I wanted to make And the last point I wanted to make was as a recipient of a lasting power of attorney in the hands of my children. I certainly don't want
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my children. I certainly don't want them to decide when I die. They're here, my Lord, my Lords, I support the point about lasting
13:19
Lord Moore of Etchingham (Non-affiliated)
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Lord Moore of Etchingham (Non-affiliated)
power of attorney that the noble Baroness Lady Coffey, has made, and the noble Lord, Lord Harper, the noble Lord, Lord Harper, reinforcement. And but also look at it another way round the fear here. It a very justified fear is that It a very justified fear is that the power could be abused in the case of of assisted suicide. But I case of of assisted suicide. But I also think it's important to look at it from the point of view of the person who is given the lasting power of attorney.
Many members, many, many noble Lords, will have a lasting power of attorney. I do myself, I declare, and. It carries certain responsibilities. And one thing that surprised me when I first got the lasting power of attorney was that I might be asked to take a view about whether or not a do not resuscitate order should be should be given. And of course, that was a sort of intimidating responsibility. And and something that I need to establish with the person concerned.
Suppose I understand why that had to happen, but it was pretty, pretty difficult, pretty inducing in anxiety. Imagine if we had we who possess lasting power of attorney, had some responsibility to take a view about whether the person over whom we have those powers should have an assisted suicide. It would seem to me to be a very, very unpleasant responsibility. And therefore it's important on both sides, both not the person on whom who who transfers the powers and the person who receives those transferred powers that that should be quite excluded from this.
Yeah.
Many members, many, many noble Lords, will have a lasting power of attorney. I do myself, I declare, and. It carries certain responsibilities. And one thing that surprised me when I first got the lasting power of attorney was that I might be asked to take a view about whether or not a do not resuscitate order should be should be given. And of course, that was a sort of intimidating responsibility. And and something that I need to establish with the person concerned.
Suppose I understand why that had to happen, but it was pretty, pretty difficult, pretty inducing in anxiety. Imagine if we had we who possess lasting power of attorney, had some responsibility to take a view about whether the person over whom we have those powers should have an assisted suicide. It would seem to me to be a very, very unpleasant responsibility. And therefore it's important on both sides, both not the person on whom who who transfers the powers and the person who receives those transferred powers that that should be quite excluded from this.
Yeah.
13:20
Lord Markham (Conservative)
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Lord Markham (Conservative)
If I if I may, I would say that every. >> Point that's been raised is a very valid concern. And I'm sure when the Lord Rook gets up to respond, he will he will acknowledge those points as well. I think the question, though, in each case is whether we want it to be a black or white assessment, whether that should apply or not. So I can take the financial support is a very good example, where in some cases that may be very, very relevant, in others it may not.
I remember my my mother, unfortunately, was given a matter of weeks to live and was helped on her way when it was a matter of days left. And you know, the financial circumstances just didn't even come into it at that point. And so having a black and white assessment on on that point of saying, oh, she didn't seek financial support or didn't have it, it wasn't even a relevant criteria. The the question about mental health and whether they've had any disorders very relevant.
If it was a recent episode, I think we'd probably say not very relevant at all. If it was 50, 60 years ago. So I think in all these circumstances, aren't we seeing cases that it depends on the circumstances. And to me, it's a question of whether we trust the, the, the panel, whether we trust the doctors who are assessing the case, who are looking into those all those criteria and will have the opportunity to call any evidence
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they need on it, whether we trust them to be able to to do that. I.
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I. Friend, accept that one of the problems is that those very people whom we're trusting, their organisations have said that they want to have clarification on these things. And the issue, therefore, things. And the issue, therefore, is we should be giving them that clarification that they want and then we can trust them. They say then we can trust them. They say they don't want to be trusted unless they have that clarification. That's the only point we're trying to make.
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And and again, there is whether you put that clarification in the black and white nature. So the financial support one, whether you say this must be something that someone's done where it might not someone's done where it might not even be relevant to the circumstances or whether you.
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circumstances or whether you. The fact that somebody has got a six month terminal diagnosis six month terminal diagnosis automatically triggers SR one. So it's superfluous that that part of the amendment. So there are things in amendments which actually automatically happen, which are now on the face of the bill, which
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don't need to be on the face of the bill in the amendments because they already happen. I just wonder if. No.
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No, no you can't. Oh, I beg your pardon. I'm sorry.
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Oh, I beg your pardon. I'm sorry. Yeah, yeah. Well I think I think no, I think this whole debate is no, I think this whole debate is showing that, you know, these are not black and white matters. And whilst they are all relevant whilst they are all relevant criteria, which I think absolutely should be in the assessment, and my understanding from the bill is they are in the assessment, it should not be put down as some sort of tick box exercise that you're either eligible or not according to them.
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Can I just check that? Is the noble Lord Markham really saying that he wants it to be open, that that he wants it to be open, that somebody a lasting power of attorney could be used by somebody else to seek the death of the person on behalf of you. Now, does he actually want that to be available? Because I don't think he available? Because I don't think he does. And it appeared noble and learned Lord, Lord Falconer didn't either. If we don't think it should Absolutely.
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Absolutely. So what. What what what I'm trying to come back to and at this point that my noble friend Lord Devin was making, in terms of the criteria, there are some very valid criteria here. But what I'm trying to do is build some flexibility into this system. So there are some which so I'm not trying to and there are lots and lots of eligibility criteria that are being set out here. You know, in in all these
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different amendments. I. Just take I believe the noble Lord had answered that intervention Lord had answered that intervention service is a separate intervention. The noble Lord served on the select committee with other noble Lords. committee with other noble Lords. We heard clear evidence from Alex We heard clear evidence from Alex Keen that and others about. It's not a flexibility. You need to know which piece of legislation are you which piece of legislation are you as a clinician to be applying? Are you under suicide prevention, your general duty, or are you, as in the example I have given, are you either under the Mental Health Act or are you under T.
It's there's no there's no flexibility about that. That's what they're asking for is that clarity. And that needs to be with all due respect, on the face of the bill.
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It's it's whether you're trying to build everything. And I will try and make the point. Now, I've taken a few interventions on that. The point I'm trying to make in all of this is these groups of amendments are setting out lots of different eligibility criteria. Some of them are about nursing homes and whether you're a resident of them, some of you're a resident of them, some of them are about, as I say, whether you've had ever had a mental health assessment. Some of them are around assessment.
Some of them are around financial support. And I think everyone in every circumstance says that in some people's circumstances, these are very, very relevant and should be the criteria that you set down that the doctors are going to make. And that should be very clear under that, that the doctors and the panel should be taking those things into account. And there are others whereby it might be totally irrelevant for that. Case in point. And what we're trying to do is give the opportunity for the doctors and the panels to make those decisions without trying to tie them up into so many knots on black and white exercises of your applicable or your not applicable according to this or that, so that we can have a workable set of rules which takes into account the, quite rightly, all the concerns that all noble Lords had to make it safe as possible, but also make it a process that ultimately it is the experts, it's the doctors and the social workers and the panels who
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are best placed to make a decision. I wonder if I could just briefly
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I wonder if I could just briefly come back to something that Lord Deben said, which I have a great deal of respect for him, and I deal of respect for him, and I agree with a great deal of what he said in his last speech just now. said in his last speech just now. But I do want to just suggest that the word concerns when it comes to the medical practitioners and the the medical practitioners and the medical and caring profession doesn't necessarily mean that they're against the bill.
And I think it's very important to understand that as a member or fellow of a number of these different. Organisations, what surprises me is how little correspondence, which actually is against the bill. Sometimes there is some concern and it needs quite, of course, reasonable regulation and proper agreement. But I think overall we have to be very careful how we understand those words, because I think certainly I have not heard from my colleagues in many, many conversations over the last months, really, that this bill should be stopped.
On the contrary, they are interested to see actually how it goes. And I think certainly many will say that they feel that this is a good bill to be looking at.
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To interrupt it. No, I didn't for one moment suggest that I was concerned with this because people were opposed to the bill. What I were opposed to the bill. What I said was indeed, I specifically said I was not thinking of those who were in principle opposed to who were in principle opposed to the bill. What I wanted to say was that certain specific concerns had that certain specific concerns had been expressed, and that some of these amendments seek to meet those concerns of the very people who are going to actually carry this bill through.
I was not proposing this in order to stop the bill. I was saying that even those of us who don't like the bill want to do our job to produce a bill which will at least be, in the proper terms, workable. That's the only point that I make in.
I remember my my mother, unfortunately, was given a matter of weeks to live and was helped on her way when it was a matter of days left. And you know, the financial circumstances just didn't even come into it at that point. And so having a black and white assessment on on that point of saying, oh, she didn't seek financial support or didn't have it, it wasn't even a relevant criteria. The the question about mental health and whether they've had any disorders very relevant.
If it was a recent episode, I think we'd probably say not very relevant at all. If it was 50, 60 years ago. So I think in all these circumstances, aren't we seeing cases that it depends on the circumstances. And to me, it's a question of whether we trust the, the, the panel, whether we trust the doctors who are assessing the case, who are looking into those all those criteria and will have the opportunity to call any evidence
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they need on it, whether we trust them to be able to to do that. I.
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I. Friend, accept that one of the problems is that those very people whom we're trusting, their organisations have said that they want to have clarification on these things. And the issue, therefore, things. And the issue, therefore, is we should be giving them that clarification that they want and then we can trust them. They say then we can trust them. They say they don't want to be trusted unless they have that clarification. That's the only point we're trying to make.
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And and again, there is whether you put that clarification in the black and white nature. So the financial support one, whether you say this must be something that someone's done where it might not someone's done where it might not even be relevant to the circumstances or whether you.
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circumstances or whether you. The fact that somebody has got a six month terminal diagnosis six month terminal diagnosis automatically triggers SR one. So it's superfluous that that part of the amendment. So there are things in amendments which actually automatically happen, which are now on the face of the bill, which
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don't need to be on the face of the bill in the amendments because they already happen. I just wonder if. No.
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No, no you can't. Oh, I beg your pardon. I'm sorry.
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Oh, I beg your pardon. I'm sorry. Yeah, yeah. Well I think I think no, I think this whole debate is no, I think this whole debate is showing that, you know, these are not black and white matters. And whilst they are all relevant whilst they are all relevant criteria, which I think absolutely should be in the assessment, and my understanding from the bill is they are in the assessment, it should not be put down as some sort of tick box exercise that you're either eligible or not according to them.
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Can I just check that? Is the noble Lord Markham really saying that he wants it to be open, that that he wants it to be open, that somebody a lasting power of attorney could be used by somebody else to seek the death of the person on behalf of you. Now, does he actually want that to be available? Because I don't think he available? Because I don't think he does. And it appeared noble and learned Lord, Lord Falconer didn't either. If we don't think it should Absolutely.
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Absolutely. So what. What what what I'm trying to come back to and at this point that my noble friend Lord Devin was making, in terms of the criteria, there are some very valid criteria here. But what I'm trying to do is build some flexibility into this system. So there are some which so I'm not trying to and there are lots and lots of eligibility criteria that are being set out here. You know, in in all these
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different amendments. I. Just take I believe the noble Lord had answered that intervention Lord had answered that intervention service is a separate intervention. The noble Lord served on the select committee with other noble Lords. committee with other noble Lords. We heard clear evidence from Alex We heard clear evidence from Alex Keen that and others about. It's not a flexibility. You need to know which piece of legislation are you which piece of legislation are you as a clinician to be applying? Are you under suicide prevention, your general duty, or are you, as in the example I have given, are you either under the Mental Health Act or are you under T.
It's there's no there's no flexibility about that. That's what they're asking for is that clarity. And that needs to be with all due respect, on the face of the bill.
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It's it's whether you're trying to build everything. And I will try and make the point. Now, I've taken a few interventions on that. The point I'm trying to make in all of this is these groups of amendments are setting out lots of different eligibility criteria. Some of them are about nursing homes and whether you're a resident of them, some of you're a resident of them, some of them are about, as I say, whether you've had ever had a mental health assessment. Some of them are around assessment.
Some of them are around financial support. And I think everyone in every circumstance says that in some people's circumstances, these are very, very relevant and should be the criteria that you set down that the doctors are going to make. And that should be very clear under that, that the doctors and the panel should be taking those things into account. And there are others whereby it might be totally irrelevant for that. Case in point. And what we're trying to do is give the opportunity for the doctors and the panels to make those decisions without trying to tie them up into so many knots on black and white exercises of your applicable or your not applicable according to this or that, so that we can have a workable set of rules which takes into account the, quite rightly, all the concerns that all noble Lords had to make it safe as possible, but also make it a process that ultimately it is the experts, it's the doctors and the social workers and the panels who
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are best placed to make a decision. I wonder if I could just briefly
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I wonder if I could just briefly come back to something that Lord Deben said, which I have a great deal of respect for him, and I deal of respect for him, and I agree with a great deal of what he said in his last speech just now. said in his last speech just now. But I do want to just suggest that the word concerns when it comes to the medical practitioners and the the medical practitioners and the medical and caring profession doesn't necessarily mean that they're against the bill.
And I think it's very important to understand that as a member or fellow of a number of these different. Organisations, what surprises me is how little correspondence, which actually is against the bill. Sometimes there is some concern and it needs quite, of course, reasonable regulation and proper agreement. But I think overall we have to be very careful how we understand those words, because I think certainly I have not heard from my colleagues in many, many conversations over the last months, really, that this bill should be stopped.
On the contrary, they are interested to see actually how it goes. And I think certainly many will say that they feel that this is a good bill to be looking at.
**** Possible New Speaker ****
To interrupt it. No, I didn't for one moment suggest that I was concerned with this because people were opposed to the bill. What I were opposed to the bill. What I said was indeed, I specifically said I was not thinking of those who were in principle opposed to who were in principle opposed to the bill. What I wanted to say was that certain specific concerns had that certain specific concerns had been expressed, and that some of these amendments seek to meet those concerns of the very people who are going to actually carry this bill through.
I was not proposing this in order to stop the bill. I was saying that even those of us who don't like the bill want to do our job to produce a bill which will at least be, in the proper terms, workable. That's the only point that I make in.
13:29
Lord Winston (Labour)
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Lord Winston (Labour)
The conversation, and I'm glad to hear him say that. But of course, to hear him say that. But of course, unfortunately, the word concerns is often bandied about by other people who just say, well, of course the doctors are against the bill. And that is not, of course, a fair assumption. Certainly, from the evidence we heard in the select
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committee, it's very clear there were various opinions. I want to rise briefly to speak
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I want to rise briefly to speak in firm support of the suite of amendments, because they do not obstruct compassion, but they obstruct compassion, but they restore clarity and protect the vulnerable. And as many noble Lords have said, the bill is drafted leaves crucial decisions to discretion and delegated guidance. As my noble friend Lord Deben has said, it is not precise. Now, when said, it is not precise. Now, when I slightly disagree with my noble friend Lord Harper, is that I am not.
I'm not worried about the judges moving the goalposts on the main act of Parliament itself, but I believe there will be over 40
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committee, it's very clear there were various opinions. I want to rise briefly to speak
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I want to rise briefly to speak in firm support of the suite of amendments, because they do not obstruct compassion, but they obstruct compassion, but they restore clarity and protect the vulnerable. And as many noble Lords have said, the bill is drafted leaves crucial decisions to discretion and delegated guidance. As my noble friend Lord Deben has said, it is not precise. Now, when said, it is not precise. Now, when I slightly disagree with my noble friend Lord Harper, is that I am not.
I'm not worried about the judges moving the goalposts on the main act of Parliament itself, but I believe there will be over 40
13:29
Lord Blencathra (Conservative)
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Lord Blencathra (Conservative)
regulations which we've not seen hide nor hair of. We will not even see a draft before this bill becomes law. And those regulations, becomes law. And those regulations, every single one of them will be wide open to judicial review. Now, that's where the judges won't move the goalposts, but they will have to fill in the gaps on issues which neither House of Parliament have neither House of Parliament have have considered. And they will have to decide where the goalposts are rugby goalposts or football rugby goalposts or football goalposts, because neither house will have determined what it is.
And that's what I'm deeply concerned that law is. The act is not precise enough on the details, which my noble friends and noble Lords have specified. So because it's imprecise, that leaves a big legal vacuum where the most sensitive judgements about life and death can be initiated or driven by others, where serious mental illness can be overlooked, and where people in care homes are in poverty can be pushed forward, pushed towards an irrevocable choice without robust statutory safeguards. The amendments in this group are practical, proportionate and targeted fixes to those groups gaps.
I suggest my Lords First amendments make clear that only the person themselves may initiate a request, and that lasting powers of attorney cannot be used to start the process, and that is essential. I believe the noble and learned Lord Doyle Lord Falconer of Thoroton agrees with that. If you agree with it, let's put it in the bill. And the law must be ambiguous. It must not be ambiguous about agency of any sort. The lowest silent pressure and expediency will fill the silence. And we've seen in other jurisdictions how a third party can accelerate a fatal outcome.
And this bill must not replicate that risk. Second, my Lords, the amendments addressing severe mental health are not an attack on economy or autonomy. They are a recognition of clinical reality. A person can meet the narrow legal tests of capacity while still having a treatable or episodic mental disorder that that drives suicidal ideation, excluding those with a history or pattern of suicidality from eligibility, or at least requiring a specialist psychiatric assessment, protects people whose wish to die is a symptom rather than a settled, autonomous decision.
Third, the bill must provide an independent, neutral route for information. Many doctors will rightly decline to participate. Patients must not, must not be left to navigate a black box where the only signpost is a clinician who may be unwilling or conflicted, an independent local service or register ensures that information is unbiased, accessible, and that the pathway into assessment is not covertly steered by those with other motives. And fourth, my Lords. Care home residents deserve heightened safeguards. Undiagnosed dementia and fluctuating capacity are common in residential settings.
A single visiting doctor cannot reliably detect these risks. In one brief encounter, requiring a specialist assessment for care home residents is a modest, necessary step to prevent tragic mistakes. But these amendments do not create delay for those who are clearly eligible. They create clear statutory thresholds and processes so that clinicians, patients and families know where they stand. They reduce litigation risk, prevent inconsistent local practice, and ensure that the law aligns with the seriousness of the act it permits. My Lords, in this House is to legislate for assisted dying.
We must do so with precision. These amendments are not obstructionist. They are the scaffolding of a safe, humane system. I urge noble Lords to support them so that the Bill protects autonomy while safeguarding those most at risk of being failed by ambiguity or poverty, or by untreated mental illness. I conclude, my Lords, making a a more inadequate way than my noble friend Lord Deben the point he also made to the noble and learned Lord Dunlop Lord Fuller if the noble and learned Lord cannot produce an assurance of amendments on this bill, which he will which will implement some of the concerns by the Royal Colleges, by the three select committees of this House who have raised concerns on the bill.
Then some of us will be left with the impression that his strategy is not to accept amendments, but to beg for more time and drive through this bill line by line and amended. And that, my Lords, I think, would be unacceptable. I hope that is not the noble Lords intention, but he can reassure us all by coming forward with revisions to this Bill and amendments which seek to implement the safeguards. Many, many organisations outside this House have been calling for.
And that's what I'm deeply concerned that law is. The act is not precise enough on the details, which my noble friends and noble Lords have specified. So because it's imprecise, that leaves a big legal vacuum where the most sensitive judgements about life and death can be initiated or driven by others, where serious mental illness can be overlooked, and where people in care homes are in poverty can be pushed forward, pushed towards an irrevocable choice without robust statutory safeguards. The amendments in this group are practical, proportionate and targeted fixes to those groups gaps.
I suggest my Lords First amendments make clear that only the person themselves may initiate a request, and that lasting powers of attorney cannot be used to start the process, and that is essential. I believe the noble and learned Lord Doyle Lord Falconer of Thoroton agrees with that. If you agree with it, let's put it in the bill. And the law must be ambiguous. It must not be ambiguous about agency of any sort. The lowest silent pressure and expediency will fill the silence. And we've seen in other jurisdictions how a third party can accelerate a fatal outcome.
And this bill must not replicate that risk. Second, my Lords, the amendments addressing severe mental health are not an attack on economy or autonomy. They are a recognition of clinical reality. A person can meet the narrow legal tests of capacity while still having a treatable or episodic mental disorder that that drives suicidal ideation, excluding those with a history or pattern of suicidality from eligibility, or at least requiring a specialist psychiatric assessment, protects people whose wish to die is a symptom rather than a settled, autonomous decision.
Third, the bill must provide an independent, neutral route for information. Many doctors will rightly decline to participate. Patients must not, must not be left to navigate a black box where the only signpost is a clinician who may be unwilling or conflicted, an independent local service or register ensures that information is unbiased, accessible, and that the pathway into assessment is not covertly steered by those with other motives. And fourth, my Lords. Care home residents deserve heightened safeguards. Undiagnosed dementia and fluctuating capacity are common in residential settings.
A single visiting doctor cannot reliably detect these risks. In one brief encounter, requiring a specialist assessment for care home residents is a modest, necessary step to prevent tragic mistakes. But these amendments do not create delay for those who are clearly eligible. They create clear statutory thresholds and processes so that clinicians, patients and families know where they stand. They reduce litigation risk, prevent inconsistent local practice, and ensure that the law aligns with the seriousness of the act it permits. My Lords, in this House is to legislate for assisted dying.
We must do so with precision. These amendments are not obstructionist. They are the scaffolding of a safe, humane system. I urge noble Lords to support them so that the Bill protects autonomy while safeguarding those most at risk of being failed by ambiguity or poverty, or by untreated mental illness. I conclude, my Lords, making a a more inadequate way than my noble friend Lord Deben the point he also made to the noble and learned Lord Dunlop Lord Fuller if the noble and learned Lord cannot produce an assurance of amendments on this bill, which he will which will implement some of the concerns by the Royal Colleges, by the three select committees of this House who have raised concerns on the bill.
Then some of us will be left with the impression that his strategy is not to accept amendments, but to beg for more time and drive through this bill line by line and amended. And that, my Lords, I think, would be unacceptable. I hope that is not the noble Lords intention, but he can reassure us all by coming forward with revisions to this Bill and amendments which seek to implement the safeguards. Many, many organisations outside this House have been calling for.
13:34
Baroness Grey-Thompson (Crossbench)
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Baroness Grey-Thompson (Crossbench)
Yes. >> Yes. >> Speak to are three amendments in this group amendments 38. In the name of my noble friend Baroness name of my noble friend Baroness O'Loan, to which my name is attached, and amendments 39 and 68. Amendment 38 seeks to address challenges of those who have bipolar disorder, borderline personality disorder, or other conditions associated with episodic suicide ideation, who face a higher baseline risk of self-harm and suicide. Research indicates that suicidal thoughts and behaviours are significantly more prevalent among people with these diagnoses, even without terminal illness, as reported by nice in 2022 and Public Health England in 2021.
But critically, evidence also shows that suicidal ideation tends to increase following a terminal diagnosis. So without the safeguard of this amendment, the bill risks enabling assisted dying decisions to be influenced by pre-existing mental health vulnerabilities exacerbated by the receipt of a terminal diagnosis. I do support calls in the chamber this afternoon to look at the benefit system. It is a really complicated process, whether you have a terminal diagnosis or not, and I think it's important to remember and learn from other jurisdictions where the 2024 Oregon official report cited that 9% of those who requested to end their lives did so for financial reasons, 42% requested it because they were felt burden.
And I think it's already been quoted. But in 2011, the noble and learned Lord, Lord Falconer with the report said that no remedial mental health condition should be eligible for assisted suicide. So I don't expect an answer in the chamber on this question this afternoon because it might take us longer. Very happy to meet outside, but be interested to understand what has changed from his view in 2011 to thinking that this would work in the bill now, and many of the amendments that I get will talk about a settled wish.
And I could sort of almost half see how somebody could try and justify that. Someone with a terminal condition and suicide ideation. Requesting assisted dying might be a form of suicide prevention. I feel like I'm tying myself in knots with this argument, but I think when we hear the argument that people are already dying, we do need protection for these groups of individuals. The noble Lady Baroness Jay who sorry, I haven't got my glasses on, who's I don't think is in a place at the moment.
No, she raised evidence given in the select committee and she talked about paternalism, my personal experiences. I don't see much paternalism in the health service. What I do see is an awful lot of ableism. And I think if we're talking about paternalism, we should be talking about ableism as well, because from a disabled person's perspective, this recognises the intersection between disability, chronic illness, mental health, vulnerability, and I think it's already been raised in the chamber this afternoon. It has been about the panel.
And the panel's a really important part of of the eligibility and actually deciding whether somebody could go forward. I think probably one of the only things the noble Lord, Lord Winston myself could agree on today is that words are important. And this relates to the place that the panel would take place. And I draw your Lordship's attention to the clarification statement that was issued by the Association of Palliative Medicine this week. And because words are important, I'm going to read it.
They said in Friday's debate on the 9th of January 26, Lord Falconer cited and misrepresented expert evidence presented to the Terminally Ill Adults Committee last year by the Association of Palliative Medicine. They go on to say that, crucially, panel members would not be required to meet the patient. They would therefore have no individual clinical perspective to bring to bear on the person applying for an assisted death. This renders the panel a mere administrative review, stripping it of the very nuance and human understanding that defines robust, compassionate decision making at the end of life.
So this is where these amendments are even more important in terms of what we're trying to do. I've previously discussed suicide amongst unpaid carers and the pressure that they have in Canada. There's a case of a man who had carer burnout, who arranged for an assessment, an urgent assessment for his wife. She died that day that is listed in the Ontario coroner's report. And also, you know, the other half in written evidence, provided evidence to show that two men who had caring responsibilities for their partners actually ended up having a mercy killing, which is often very strangely, very sympathetically portrayed in the media.
My Lords, amendment 39, in my name is recognising where an assisted death will take place and who will be most directly affected, and the settings that could be affected are care homes or nursing homes, communities that care for those living with dementia, frailty, disability or advanced illness, where dependency is a condition of daily life rather than an exception. So I think it's important to recognise that a significant proportion of people living with dementia or cognitive impairment remain undiagnosed until the later stages of the disease.
On average, people with dementia live with symptoms for three and a half years before receiving a diagnosis, and current NHS England and Alzheimer's Society data show that only about two thirds of those with dementia receive a formal diagnosis. Diagnosis rates in Wales is even lower, so this further underscores the need for a specialist clinical assessment before any conclusion about capacity is reached. So if 1 in 3 people with dementia are never diagnosed, then 1 in 3 potential applicants under this bill may have an unrecognised impairment in capacity.
This is not a margin of error that any legislator can reasonably accept, and a recent report by the whistleblower charity Compassion and Care further illustrates the heightened vulnerability of care home residents. Based on evidence submitted by over 1000 caseworkers. Sorry care workers who called the charity helpline to express their concerns about the terminally ill adults. End of life bill. The most predominant issue, raised in 97% of cases was that of fluctuation capacity, which is common amongst those residing in care homes.
The British Geriatrics Society, which gave evidence during the Select committee, estimated that the prevalence of delirium among care and nursing home residents to be as high as 60%. Finally, my Lords, Amendment 68 is about protecting autonomy. This amendment ensures that the right to request assistance when one's life remains solely with the individual who is terminally ill, it prevents any surrogate family member or medical professional from making that decision on their behalf. By explicitly prohibiting third party decisions. We safeguard vulnerable individuals from coercion or misinterpretation of their wishes.
Finally, my Lords, I'd like to ask the noble and learned Lord a few questions. How does the noble and learned Lords seek to protect those who are in care homes or who may be vulnerable? Secondly, how will this bill protect those individuals? Have previous who've had previous suicide ideation? And where does this bill actually seek to understand the intersection between those with suicide ideation and those who then have a terminal diagnosis to actually understand whether this is a genuine settled wish? And my final question is how, through this bill, we're able to offer protection to those who have a previous history of self-harm.
But critically, evidence also shows that suicidal ideation tends to increase following a terminal diagnosis. So without the safeguard of this amendment, the bill risks enabling assisted dying decisions to be influenced by pre-existing mental health vulnerabilities exacerbated by the receipt of a terminal diagnosis. I do support calls in the chamber this afternoon to look at the benefit system. It is a really complicated process, whether you have a terminal diagnosis or not, and I think it's important to remember and learn from other jurisdictions where the 2024 Oregon official report cited that 9% of those who requested to end their lives did so for financial reasons, 42% requested it because they were felt burden.
And I think it's already been quoted. But in 2011, the noble and learned Lord, Lord Falconer with the report said that no remedial mental health condition should be eligible for assisted suicide. So I don't expect an answer in the chamber on this question this afternoon because it might take us longer. Very happy to meet outside, but be interested to understand what has changed from his view in 2011 to thinking that this would work in the bill now, and many of the amendments that I get will talk about a settled wish.
And I could sort of almost half see how somebody could try and justify that. Someone with a terminal condition and suicide ideation. Requesting assisted dying might be a form of suicide prevention. I feel like I'm tying myself in knots with this argument, but I think when we hear the argument that people are already dying, we do need protection for these groups of individuals. The noble Lady Baroness Jay who sorry, I haven't got my glasses on, who's I don't think is in a place at the moment.
No, she raised evidence given in the select committee and she talked about paternalism, my personal experiences. I don't see much paternalism in the health service. What I do see is an awful lot of ableism. And I think if we're talking about paternalism, we should be talking about ableism as well, because from a disabled person's perspective, this recognises the intersection between disability, chronic illness, mental health, vulnerability, and I think it's already been raised in the chamber this afternoon. It has been about the panel.
And the panel's a really important part of of the eligibility and actually deciding whether somebody could go forward. I think probably one of the only things the noble Lord, Lord Winston myself could agree on today is that words are important. And this relates to the place that the panel would take place. And I draw your Lordship's attention to the clarification statement that was issued by the Association of Palliative Medicine this week. And because words are important, I'm going to read it.
They said in Friday's debate on the 9th of January 26, Lord Falconer cited and misrepresented expert evidence presented to the Terminally Ill Adults Committee last year by the Association of Palliative Medicine. They go on to say that, crucially, panel members would not be required to meet the patient. They would therefore have no individual clinical perspective to bring to bear on the person applying for an assisted death. This renders the panel a mere administrative review, stripping it of the very nuance and human understanding that defines robust, compassionate decision making at the end of life.
So this is where these amendments are even more important in terms of what we're trying to do. I've previously discussed suicide amongst unpaid carers and the pressure that they have in Canada. There's a case of a man who had carer burnout, who arranged for an assessment, an urgent assessment for his wife. She died that day that is listed in the Ontario coroner's report. And also, you know, the other half in written evidence, provided evidence to show that two men who had caring responsibilities for their partners actually ended up having a mercy killing, which is often very strangely, very sympathetically portrayed in the media.
My Lords, amendment 39, in my name is recognising where an assisted death will take place and who will be most directly affected, and the settings that could be affected are care homes or nursing homes, communities that care for those living with dementia, frailty, disability or advanced illness, where dependency is a condition of daily life rather than an exception. So I think it's important to recognise that a significant proportion of people living with dementia or cognitive impairment remain undiagnosed until the later stages of the disease.
On average, people with dementia live with symptoms for three and a half years before receiving a diagnosis, and current NHS England and Alzheimer's Society data show that only about two thirds of those with dementia receive a formal diagnosis. Diagnosis rates in Wales is even lower, so this further underscores the need for a specialist clinical assessment before any conclusion about capacity is reached. So if 1 in 3 people with dementia are never diagnosed, then 1 in 3 potential applicants under this bill may have an unrecognised impairment in capacity.
This is not a margin of error that any legislator can reasonably accept, and a recent report by the whistleblower charity Compassion and Care further illustrates the heightened vulnerability of care home residents. Based on evidence submitted by over 1000 caseworkers. Sorry care workers who called the charity helpline to express their concerns about the terminally ill adults. End of life bill. The most predominant issue, raised in 97% of cases was that of fluctuation capacity, which is common amongst those residing in care homes.
The British Geriatrics Society, which gave evidence during the Select committee, estimated that the prevalence of delirium among care and nursing home residents to be as high as 60%. Finally, my Lords, Amendment 68 is about protecting autonomy. This amendment ensures that the right to request assistance when one's life remains solely with the individual who is terminally ill, it prevents any surrogate family member or medical professional from making that decision on their behalf. By explicitly prohibiting third party decisions. We safeguard vulnerable individuals from coercion or misinterpretation of their wishes.
Finally, my Lords, I'd like to ask the noble and learned Lord a few questions. How does the noble and learned Lords seek to protect those who are in care homes or who may be vulnerable? Secondly, how will this bill protect those individuals? Have previous who've had previous suicide ideation? And where does this bill actually seek to understand the intersection between those with suicide ideation and those who then have a terminal diagnosis to actually understand whether this is a genuine settled wish? And my final question is how, through this bill, we're able to offer protection to those who have a previous history of self-harm.
13:42
Lord Empey (Ulster Unionist Party)
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Lord Empey (Ulster Unionist Party)
My Lords, following on from Baroness Gray Thompson's proposal of amendment 39, one of the issues that I think perhaps is not fully appreciated or understood, and it's only perhaps if you've actually witnessed it, you get the full implications of it, which is delirium, which is brought about by a combination of medications that are applied. One particular medication can clash with another, and it produces this situation where it appears almost like dementia, as the patient actually is not suffering from dementia, but actually is suffering from delirium, which can be brought on by a combination of medications.
And that is something that I do think that Prime Minister Thompson has expressed very well, also Baroness Berger in producing amendment 31 and delivering that. Again, it seems an elementary thing, but unless the person is sufficiently capable at the point in time and is not suffering from delirium and or dementia, and that is best judged by somebody, by the clinician who actually knows the patient and works with the patient, rather than somebody who's dashing in with a white coat in and out of a ward room and trying to assess the person on the hoof, as it were.
But I wanted just to say, in respect of what the noble Lord Lord Deben and others have said earlier on, like him, I don't like this bill. But I'd said at Second Reading, I'm also like everybody else in this room, a legislative. So we have a role above and beyond our personal prejudices or personal beliefs. And I have to say to the noble and learned Lord Lord Falconer of Thoroton, as has been mentioned by Lord Deben, we've had a lot of issues have come up in the last few weeks.
Last week we had the series of amendments put forward by Lord Carlile, which dealt with a very serious issue the week before with five separate issues dealing with prisoners, pregnant women, etc. and we've had other issues now. I know it's only a part way through the committee, but I would have to say to the noble Lord, if he wants this House to compress the process, rather than have to reiterate all of this again at report, if he brings forward a coherent amendments that address the issues that have been raised, then I think that would make a difference to how people approach the rest of this legislation.
I have to say to him, I don't mean to be unkind, but there's no point in him getting up every Friday like Stonewall Jackson and saying basically that I'm writing you wrong. There is a difference of opinion, a chasm in many respects over a lot of these issues. And it does seem to me to be brutal about it. We need to see the colour of his money, and that will, I hope, would allow us to go forward. But unless we deal with these fundamental basic issues, then we will have a very long slog indeed.
And that is something that I do think that Prime Minister Thompson has expressed very well, also Baroness Berger in producing amendment 31 and delivering that. Again, it seems an elementary thing, but unless the person is sufficiently capable at the point in time and is not suffering from delirium and or dementia, and that is best judged by somebody, by the clinician who actually knows the patient and works with the patient, rather than somebody who's dashing in with a white coat in and out of a ward room and trying to assess the person on the hoof, as it were.
But I wanted just to say, in respect of what the noble Lord Lord Deben and others have said earlier on, like him, I don't like this bill. But I'd said at Second Reading, I'm also like everybody else in this room, a legislative. So we have a role above and beyond our personal prejudices or personal beliefs. And I have to say to the noble and learned Lord Lord Falconer of Thoroton, as has been mentioned by Lord Deben, we've had a lot of issues have come up in the last few weeks.
Last week we had the series of amendments put forward by Lord Carlile, which dealt with a very serious issue the week before with five separate issues dealing with prisoners, pregnant women, etc. and we've had other issues now. I know it's only a part way through the committee, but I would have to say to the noble Lord, if he wants this House to compress the process, rather than have to reiterate all of this again at report, if he brings forward a coherent amendments that address the issues that have been raised, then I think that would make a difference to how people approach the rest of this legislation.
I have to say to him, I don't mean to be unkind, but there's no point in him getting up every Friday like Stonewall Jackson and saying basically that I'm writing you wrong. There is a difference of opinion, a chasm in many respects over a lot of these issues. And it does seem to me to be brutal about it. We need to see the colour of his money, and that will, I hope, would allow us to go forward. But unless we deal with these fundamental basic issues, then we will have a very long slog indeed.
13:46
Lord Wolfson of Tredegar (Conservative)
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Lord Wolfson of Tredegar (Conservative)
Absolutely right. >> Very good. >> The amendments in this group relate to two fundamental questions. relate to two fundamental questions. First, who should have the legal right to assistance under the bill and secondly, who should not? They are both important questions. We've heard concerns about eligibility throughout the discussion in committee, in particular, the question whether a person must be in pain to access assistance has been a point of contention, and I think that's something which will come up in the next group about motivation.
But I hope all noble Lords across the House, across the committee, would agree that this bill needs sufficient safeguards to ensure that those asking for an assisted death meet three conditions. First, they have sufficient reason to do so. Secondly, they have the mental capacity to do so. And thirdly, they are fully aware of what they are asking for. And if any one of those conditions is not met, then I would suggest that someone should not be able to ask for an assisted death on their part.
Now that is because this bill is generally intentionally, as I understand it, from the noble and learned Lord Moore a tightly drawn proposal, and therefore it would not be right for the bill to become law without its provisions tightly defining assistance in line with the intentions of Parliament. And I know that reports of incidents in other countries where people have used assisted dying services to end lives for reasons other than terminal illness, are concerning, and therefore I understand the reasons why the various noble Lords have put forward the amendments in this group.
I'll just pick up a couple. The noble Baroness. Lady Findlay's Amendment 28, is seeking to ensure that people who are seeking assistance are not doing so out of financial difficulties. As I understand the course of the debate in this House, that does not run contrary to the underlying principle set out by the noble and learned Lord Lord Falconer of Thoroton. So I hope he would be able to explain how protections for those in financial difficulty would function under the bill.
Can we strengthen its provisions to ensure that those in financial difficulty who are also terminally ill, are not choosing to end their life, mainly because of their financial circumstances? I would also highlight the noble Baroness, Lady Grey Thomson's Amendment 39, which would require a heightened evidential standard for those in care homes and nursing homes. We know from events not only during the pandemic, but in particular perhaps during the pandemic and otherwise, that those living in care homes and nursing homes are particularly vulnerable.
They can also be taken advantage of. So I understand respectfully the noble Ladies motivation in probing the noble and learned Lord Hall Falconer on whether there are sufficient protections for vulnerable residents of care homes. Amendment 38. In the name of the noble Baroness, Lady Alone focuses on another particularly vulnerable group those with certain mental health conditions. The impetus, of course, of this legislation is concern for those who seek an assisted death because they are considered to be in distress or in pain and vulnerable, but in legislating for that vulnerable group, it is important, I would suggest, that we do not unintentionally endanger other vulnerable people and groups.
And so I therefore look forward not only to the contribution from the Minister, but also in particular to the noble and learned Lords. Reply. And also, if I if I may add, whether going forward it is the idea that we would receive amendments from him on a sort of a rolling basis, because that will obviously help us not only around the committee, but also on the front bench to plan our work going forward as well. OK.
But I hope all noble Lords across the House, across the committee, would agree that this bill needs sufficient safeguards to ensure that those asking for an assisted death meet three conditions. First, they have sufficient reason to do so. Secondly, they have the mental capacity to do so. And thirdly, they are fully aware of what they are asking for. And if any one of those conditions is not met, then I would suggest that someone should not be able to ask for an assisted death on their part.
Now that is because this bill is generally intentionally, as I understand it, from the noble and learned Lord Moore a tightly drawn proposal, and therefore it would not be right for the bill to become law without its provisions tightly defining assistance in line with the intentions of Parliament. And I know that reports of incidents in other countries where people have used assisted dying services to end lives for reasons other than terminal illness, are concerning, and therefore I understand the reasons why the various noble Lords have put forward the amendments in this group.
I'll just pick up a couple. The noble Baroness. Lady Findlay's Amendment 28, is seeking to ensure that people who are seeking assistance are not doing so out of financial difficulties. As I understand the course of the debate in this House, that does not run contrary to the underlying principle set out by the noble and learned Lord Lord Falconer of Thoroton. So I hope he would be able to explain how protections for those in financial difficulty would function under the bill.
Can we strengthen its provisions to ensure that those in financial difficulty who are also terminally ill, are not choosing to end their life, mainly because of their financial circumstances? I would also highlight the noble Baroness, Lady Grey Thomson's Amendment 39, which would require a heightened evidential standard for those in care homes and nursing homes. We know from events not only during the pandemic, but in particular perhaps during the pandemic and otherwise, that those living in care homes and nursing homes are particularly vulnerable.
They can also be taken advantage of. So I understand respectfully the noble Ladies motivation in probing the noble and learned Lord Hall Falconer on whether there are sufficient protections for vulnerable residents of care homes. Amendment 38. In the name of the noble Baroness, Lady Alone focuses on another particularly vulnerable group those with certain mental health conditions. The impetus, of course, of this legislation is concern for those who seek an assisted death because they are considered to be in distress or in pain and vulnerable, but in legislating for that vulnerable group, it is important, I would suggest, that we do not unintentionally endanger other vulnerable people and groups.
And so I therefore look forward not only to the contribution from the Minister, but also in particular to the noble and learned Lords. Reply. And also, if I if I may add, whether going forward it is the idea that we would receive amendments from him on a sort of a rolling basis, because that will obviously help us not only around the committee, but also on the front bench to plan our work going forward as well. OK.
13:50
Baroness Merron, The Parliamentary Under-Secretary for Health and Social Care (Labour)
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Baroness Merron, The Parliamentary Under-Secretary for Health and Social Care (Labour)
And my Lords, I would like to >> And my Lords, I would like to thank all noble Lords for for this debate and their contributions. As debate and their contributions. As I've said previously, any detailed comments I'm going to limit to amendments on which the government has major legal, technical, operational workability concerns. And to that point, I'd like to to clarify, as the point was raised by the noble Lady Baroness Berridge, that does include interaction with other legislation on account of the government's clear duty to the statute book.
And I did hear the noble Lady Baroness Berridge make a request for for government engagement. Perhaps I could say that, of course, should Parliament choose to pass this bill, we will then work with stakeholders to design a robust and effective service. But in the meantime, engagement is a matter for the sponsor.
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I have raised issues in relation to a different piece of legislation that the noble Lady the Minister that the noble Lady the Minister has. Once this legislation is passed, if it's not compatible, it's too late. So can I make that it's too late. So can I make that request? I'm not requesting a meeting under Tia. I'm requesting a meeting for the Royal College of meeting for the Royal College of Psychiatrists. Professor Sir Alex Rankine, under the mental health law. And I don't understand why the noble Lady, the Minister, can't
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noble Lady, the Minister, can't grant that meeting. For the reasons that I've already outlined. But I would also clarify that that's why I made that clarification, that when I say I'm only speaking about where there are particular concerns, if I don't refer to them, then there are no concerns to raise for the attention of your Lordships House, which I would be always very clear in doing whilst I'm in this area, the noble Lady Baroness Finlay asked about peers access to technical drafting support.
And again, to reiterate, as we all know, it is the sponsor of course, who leads on engagement with peers on policy content to meet our responsibilities as a government. We have been working with the sponsor of the bill on amendments to ensure operational workability. Were the bill to pass, it might be helpful for the noble Lady, if I say, and the other place where amendments had been voted on to the bill, there was then support to the sponsor to ensure that those amendments were meeting the test of fully workable, effective and enforceable.
And in these cases it was for the sponsor to table amendments to address any workability concerns. So turning now to.
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I apologise for interrupting the Minister, who's being extremely helpful. But there is one point I think, that does need to be clarified as a result of what she's just said. If an amendment is just said. If an amendment is passed at Report stage, but before the bill has passed, I understood the bill has passed, I understood that the government was saying that assistance would then be available of the same kind that was available to the sponsor, so that that amendment could be come workable in the context of the bill and other law by the time the bill was passed.
Now, that was a very clear understanding that's been given to me in various quarters. Are we hearing now that that facility will not be given if an amendment is passed at Report stage, and if so, why?
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I'm not sure that there is that difference, but what I will do is review the Hansard of this debate review the Hansard of this debate and ensure that I come back to the noble Lord and place a copy in the noble Lord and place a copy in the library of my response, because I'm not entirely clear about the point not entirely clear about the point that the noble Lord is making. So if I may continue with the point, I if I may continue with the point, I realise that's disappointing to the noble Lord, and I'm happy to give way to.
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Only intervene once more. It seems to me to be a fundamentally seems to me to be a fundamentally necessary situation, that if an amendment is passed at Report stage amendment is passed at Report stage which changes something that has been put in the bill by the sponsor, been put in the bill by the sponsor, who has had the advantage of the consultation process, which we've discussed at length in these discussed at length in these proceedings, that once that Report stage amendment is passed, the same attention should be given to it.
Otherwise, we run the risk of asking, and I'm sure that's exactly what the noble and learned Lord expects. Otherwise, we run the risk of asking people like if there is anybody like Baroness Butler-Sloss not to move the goal to move the goalposts rather than do what she really does, which is be extremely
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nimble between the goalposts. I'm grateful for the clarification on goalpost moving and and what the noble Lord is and and what the noble Lord is saying is correct, and there isn't going to be a any change to what going to be a any change to what has been said previously. And I hope the noble Lord and your Lordships' House will forgive me, Lordships' House will forgive me, should I have not put it as clearly as certainly the noble Lord would have liked? And I still will make a review of the words and ensure
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everything is clear. I hope that will be helpful. Just sits down and I've listened
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Just sits down and I've listened really carefully to this. Have I? In my simplistic, non-legal and In my simplistic, non-legal and non-ministerial way, understood that the drafting of an amendment that the drafting of an amendment will be down to us and the public Bill office. If that wording, however inadequate, is then voted into the bill at that stage, advice over workability would be given and therefore a further correction to vote would be coming would be at
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Third Reading. Is that correct? That'd be the noble. It is the normal way of doing
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It is the normal way of doing things. I hope that again is helpful. If I can turn now to amendment 27, in this group, which has been tabled by the noble Lady Baroness Finlay, this amendment would require a terminally ill person to have made independent contact with their local voluntary assisted death service for information that was in quotes, in order to be eligible to request assistance under the bill. However, the fact is that a local voluntary assisted death service is not defined and this concept does not feature anywhere else in the bill.
Furthermore, there is no mechanism provided for assessing whether this eligibility requirement has been met. This would render the bill unworkable as drafted, and would require further amendments to ensure its workability. Turning to amendment 28, also tabled by the noble Lady Baroness Finlay, the amendment would add two eligibility requirements for a person seeking an assisted death under the bill. Firstly, that the person is eligible for benefits from the Department of Work and Pensions via the Special Rules for End of Life.
The SRL process, and secondly, that the person has received a home visit from their GP in the six months preceding their request for an assisted death. My Lords, not all terminally ill people opt to apply for, or are eligible for certain benefits at the end of their life, and those people who don't claim would therefore become ineligible under the provision as drafted. The Bill and SRL system also have different definitions for end of life. The bill defines terminally ill as six months to live, while the SRL process uses 12 months.
That would be operationally confusing. Equally not terminally ill people will necessarily have had a recent home visit by GP, and this again poses operational challenges for GP resources. Lord Prentis amendment 28 refers to SR one. This, my Lords, is the medical evidence form that clinicians issue to evidence that a person is at the end of their life. It is unusual for forms of this nature to be put into primary legislation, and the form by itself does not establish eligibility for benefits.
Furthermore, referring to the form in primary legislation could result in delivery challenges should DWP amend that form at any point in the future. Amendment 38, tabled by the noble Lady Baroness O'Loan, would introduce several qualifications to the eligibility criteria in clause one. This amendment could cause operational challenges for assessing doctors and panels. As drafted, the amendments contain undefined and unclear terminology, and it is not evident how this these new criteria should be assessed.
Noble Lords may also wish to note the risk that these amendments could give rise to challenge on the grounds, as they would lead to a difference in treatment. For those who have a history of mental health conditions, suicide, suicidal ideation or self-harm, any differential treatment would need to be objectively and reasonably justified in order to comply with obligations. And lastly, I turn to amendment 39 table by the noble Lady Baroness Grey-Thompson. This amendment would create differential treatment for people in care or nursing homes, as opposed to, for example, those who are being cared for at home.
Once again, any differential treatment would need to be objectively and reasonably justified in order to comply with Echr obligations. Significant further work will be required to define key terms and concepts. If this is Parliament's will. For example, it is uncertain about what would constitute a and I quote heightened evidential standard for the amendments in this group. I make no comment. Any workability concerns are likely to be less significant. Whilst these are choices for noble Lords, they may introduce inconsistencies and ambiguities to the Bill as noble Lords will be aware.
And as we discussed earlier, these amendments have not had technical drafting support from officials. And so the way they are currently drafted means they may not be fully
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workable, effective or enforceable. I'm grateful to everybody who has contributed to this very important debate. I do, first of important debate. I do, first of all, with what the noble Lord Lord Deben said. Of course I have to listen. Of course I have to make listen. Of course I have to make changes. I am not Stonewall Jackson. Stonewall Jackson was a tactical genius who died at 39. I'm a man trying to do my best, aged 74, so trying to do my best, aged 74, so I'm in a completely different situation to him.
But he makes an situation to him. But he makes an important point, which is I have to convince the House that I'm listening and that if sensible proposals are put, then I must deal
And I did hear the noble Lady Baroness Berridge make a request for for government engagement. Perhaps I could say that, of course, should Parliament choose to pass this bill, we will then work with stakeholders to design a robust and effective service. But in the meantime, engagement is a matter for the sponsor.
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I have raised issues in relation to a different piece of legislation that the noble Lady the Minister that the noble Lady the Minister has. Once this legislation is passed, if it's not compatible, it's too late. So can I make that it's too late. So can I make that request? I'm not requesting a meeting under Tia. I'm requesting a meeting for the Royal College of meeting for the Royal College of Psychiatrists. Professor Sir Alex Rankine, under the mental health law. And I don't understand why the noble Lady, the Minister, can't
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noble Lady, the Minister, can't grant that meeting. For the reasons that I've already outlined. But I would also clarify that that's why I made that clarification, that when I say I'm only speaking about where there are particular concerns, if I don't refer to them, then there are no concerns to raise for the attention of your Lordships House, which I would be always very clear in doing whilst I'm in this area, the noble Lady Baroness Finlay asked about peers access to technical drafting support.
And again, to reiterate, as we all know, it is the sponsor of course, who leads on engagement with peers on policy content to meet our responsibilities as a government. We have been working with the sponsor of the bill on amendments to ensure operational workability. Were the bill to pass, it might be helpful for the noble Lady, if I say, and the other place where amendments had been voted on to the bill, there was then support to the sponsor to ensure that those amendments were meeting the test of fully workable, effective and enforceable.
And in these cases it was for the sponsor to table amendments to address any workability concerns. So turning now to.
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I apologise for interrupting the Minister, who's being extremely helpful. But there is one point I think, that does need to be clarified as a result of what she's just said. If an amendment is just said. If an amendment is passed at Report stage, but before the bill has passed, I understood the bill has passed, I understood that the government was saying that assistance would then be available of the same kind that was available to the sponsor, so that that amendment could be come workable in the context of the bill and other law by the time the bill was passed.
Now, that was a very clear understanding that's been given to me in various quarters. Are we hearing now that that facility will not be given if an amendment is passed at Report stage, and if so, why?
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I'm not sure that there is that difference, but what I will do is review the Hansard of this debate review the Hansard of this debate and ensure that I come back to the noble Lord and place a copy in the noble Lord and place a copy in the library of my response, because I'm not entirely clear about the point not entirely clear about the point that the noble Lord is making. So if I may continue with the point, I if I may continue with the point, I realise that's disappointing to the noble Lord, and I'm happy to give way to.
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Only intervene once more. It seems to me to be a fundamentally seems to me to be a fundamentally necessary situation, that if an amendment is passed at Report stage amendment is passed at Report stage which changes something that has been put in the bill by the sponsor, been put in the bill by the sponsor, who has had the advantage of the consultation process, which we've discussed at length in these discussed at length in these proceedings, that once that Report stage amendment is passed, the same attention should be given to it.
Otherwise, we run the risk of asking, and I'm sure that's exactly what the noble and learned Lord expects. Otherwise, we run the risk of asking people like if there is anybody like Baroness Butler-Sloss not to move the goal to move the goalposts rather than do what she really does, which is be extremely
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nimble between the goalposts. I'm grateful for the clarification on goalpost moving and and what the noble Lord is and and what the noble Lord is saying is correct, and there isn't going to be a any change to what going to be a any change to what has been said previously. And I hope the noble Lord and your Lordships' House will forgive me, Lordships' House will forgive me, should I have not put it as clearly as certainly the noble Lord would have liked? And I still will make a review of the words and ensure
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everything is clear. I hope that will be helpful. Just sits down and I've listened
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Just sits down and I've listened really carefully to this. Have I? In my simplistic, non-legal and In my simplistic, non-legal and non-ministerial way, understood that the drafting of an amendment that the drafting of an amendment will be down to us and the public Bill office. If that wording, however inadequate, is then voted into the bill at that stage, advice over workability would be given and therefore a further correction to vote would be coming would be at
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Third Reading. Is that correct? That'd be the noble. It is the normal way of doing
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It is the normal way of doing things. I hope that again is helpful. If I can turn now to amendment 27, in this group, which has been tabled by the noble Lady Baroness Finlay, this amendment would require a terminally ill person to have made independent contact with their local voluntary assisted death service for information that was in quotes, in order to be eligible to request assistance under the bill. However, the fact is that a local voluntary assisted death service is not defined and this concept does not feature anywhere else in the bill.
Furthermore, there is no mechanism provided for assessing whether this eligibility requirement has been met. This would render the bill unworkable as drafted, and would require further amendments to ensure its workability. Turning to amendment 28, also tabled by the noble Lady Baroness Finlay, the amendment would add two eligibility requirements for a person seeking an assisted death under the bill. Firstly, that the person is eligible for benefits from the Department of Work and Pensions via the Special Rules for End of Life.
The SRL process, and secondly, that the person has received a home visit from their GP in the six months preceding their request for an assisted death. My Lords, not all terminally ill people opt to apply for, or are eligible for certain benefits at the end of their life, and those people who don't claim would therefore become ineligible under the provision as drafted. The Bill and SRL system also have different definitions for end of life. The bill defines terminally ill as six months to live, while the SRL process uses 12 months.
That would be operationally confusing. Equally not terminally ill people will necessarily have had a recent home visit by GP, and this again poses operational challenges for GP resources. Lord Prentis amendment 28 refers to SR one. This, my Lords, is the medical evidence form that clinicians issue to evidence that a person is at the end of their life. It is unusual for forms of this nature to be put into primary legislation, and the form by itself does not establish eligibility for benefits.
Furthermore, referring to the form in primary legislation could result in delivery challenges should DWP amend that form at any point in the future. Amendment 38, tabled by the noble Lady Baroness O'Loan, would introduce several qualifications to the eligibility criteria in clause one. This amendment could cause operational challenges for assessing doctors and panels. As drafted, the amendments contain undefined and unclear terminology, and it is not evident how this these new criteria should be assessed.
Noble Lords may also wish to note the risk that these amendments could give rise to challenge on the grounds, as they would lead to a difference in treatment. For those who have a history of mental health conditions, suicide, suicidal ideation or self-harm, any differential treatment would need to be objectively and reasonably justified in order to comply with obligations. And lastly, I turn to amendment 39 table by the noble Lady Baroness Grey-Thompson. This amendment would create differential treatment for people in care or nursing homes, as opposed to, for example, those who are being cared for at home.
Once again, any differential treatment would need to be objectively and reasonably justified in order to comply with Echr obligations. Significant further work will be required to define key terms and concepts. If this is Parliament's will. For example, it is uncertain about what would constitute a and I quote heightened evidential standard for the amendments in this group. I make no comment. Any workability concerns are likely to be less significant. Whilst these are choices for noble Lords, they may introduce inconsistencies and ambiguities to the Bill as noble Lords will be aware.
And as we discussed earlier, these amendments have not had technical drafting support from officials. And so the way they are currently drafted means they may not be fully
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workable, effective or enforceable. I'm grateful to everybody who has contributed to this very important debate. I do, first of important debate. I do, first of all, with what the noble Lord Lord Deben said. Of course I have to listen. Of course I have to make listen. Of course I have to make changes. I am not Stonewall Jackson. Stonewall Jackson was a tactical genius who died at 39. I'm a man trying to do my best, aged 74, so trying to do my best, aged 74, so I'm in a completely different situation to him.
But he makes an situation to him. But he makes an important point, which is I have to convince the House that I'm listening and that if sensible proposals are put, then I must deal
14:02
Lord Falconer of Thoroton (Labour)
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Lord Falconer of Thoroton (Labour)
with them. I believe that has been my attitude throughout. So I just site by way of example, the very sensible proposals made in relation to involving the multidisciplinary team who are looking after somebody should be incorporated in the bill and I am working on that to try to achieve that. Proposals were made achieve that. Proposals were made saying people who are between 18 and 25 might be especially sorry, I and 25 might be especially sorry, I apologise, I apologise are especially vulnerable and they need extra protection.
I sought to develop proposals in relation to that. Another example is people who suffered, not suffered, have either made an error or somebody in respect of them has made an application that their liberty be taken away because they are seriously mentally ill or lack capacity, or they've actually had their liberty deprived. Again, special provision maybe should be made to them. I mention these points only to indicate that far from being Stonewall Jackson, I am the House of Lords trying to do its best to make sure that we improve the workability of the Bill.
In that spirit, can I go to these particular amendments? First of all, amendment 27, my noble friend Baroness Merron has gone through the technical problems with the amendment. For example, it refers to somebody being referred to an independent voluntary assisted dying service which might or might not be a sensible thing to do. And I suspect my hon. Friend Lord Birt proposals that come later may relate to that. But the noble Baroness Finlay was making a wider point, which she expressed very clearly, which is that you should not be making a decision about whether or not you want an assisted death or not, until you've been fully informed about all of the consequences and all of the processes.
And she made reference to a number of issues in relation to that, including diagnosis, prognosis, effect of an assisted death in terms of the substance. In my respectful submission, the bill reflects exactly the points that she is making. Namely, there needs to be proper information by statute made available to the patient. Could I draw attention to, first of all, clause five five? This is the preliminary discussion that has to be recorded. If a registered medical practitioner conducts such a preliminary discussion.
The practitioner must explain to and discuss with that person the diagnosis and the prognosis, any treatment and the likely effect of it. All appropriate palliative, hospice or other care, including symptom management and psychological support, and offer to refer them to a registered medical practitioner who specialises in such care. For the purposes of further discussion. So all of that has got to be made available at the preliminary discussion. And then noble Lords will remember that there are two doctors that have to look at it.
First of all, the the person who is called the doctor and then the independent doctor, and both the independent doctor and the coordinating doctor must, pursuant to clause 12 two of the bill explained to you and discuss with the person being assessed the person's diagnosis and prognosis, any treatment available and the likely effect of it, any available palliative, hospice or other care, including symptom management and psychological support. And finally, the nature of the substance that is to be provided to assist the person to end their own life, including how it will bring about death and how it will be administered.
The panel have to be satisfied that all of these processes have been gone through. So with the just finish this and I'll come to you Baroness O'Loan in a moment. So I completely agree with the underlying proposition, underlying amendment 27, which is that you should be fully informed, and amendment 42 as well, which puts in the word fully informed. But I believe that the bill has both made provision for that and has a means of enforcing it, which is the panel that.
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I thank the Noble and learned will forgive me. I just wondered if you could clarify for me and for the house.
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the house. I'm so sorry.
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I'm so sorry. I'm sorry. I apologise. I thank the noble and learned Lord for giving way. I just wondered if he giving way. I just wondered if he could clarify for me what is meant could clarify for me what is meant by in clause 12 to C3 and the available palliative, hospice or other care? Because we know that palliative and hospice care is available if you can travel to it, if you live in a particular area and it's not available in very significant areas.
So what is meant by available in that context? Please.
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Available in that context obviously means available in a obviously means available in a practical sense for that particular patient. So the fact that one lives in John O'Groats, I'm sorry, the in John O'Groats, I'm sorry, the western part of England and there is part of care of a particular sort available in a place you sort available in a place you cannot access that would not be available. Amendment 28, again proposed by the noble Baroness Baroness Finlay. Again, my noble friend Baroness Merron indicated what the effect of that amendment is.
The effect of that amendment is that there are two additional requirements before you are eligible for assisted death. First, that you are eligible for certain specific benefits available at end of life, and secondly, that there has been a home visit by a GP to consider it. Neither of those are appropriate for eligibility requirements for assisted death, for example. As my learned friend Baroness Merron said, you might well not be eligible for particular benefits, for example, because they are means tested and you are above the particular means, it would be wholly wrong that that would prevent you getting assisted death if you were otherwise entitled to it.
But again, I don't think that the purpose of of Baroness Finlay in advancing that particular provision was in order to say you have got to satisfy these specific requirements with all the problems that my noble friend Baroness Merron indicated. What I think she was getting at was, you've got to be sure that financial circumstances, because you are short of money, is not a relevant reason for assisted death. In, in in putting forward this bill, I put forward the bill on the basis that choice is the key thing.
Your financial position might be an element in what makes you reach a decision, and the way that the safeguards are put in the bill is what they are trying to do, is to ensure that it's your decision
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freely made. I am slightly incredulous of
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I am slightly incredulous of this. I'm just going to make sure I'm understanding correctly. He's talking about and we heard, I think, talking about and we heard, I think, from the noble Lady Baroness Gale about someone's autonomy. If you're in a financial position where you in a financial position where you feel that you are unable to live properly because you have no money, properly because you have no money, and as a result of that, you decide you want to end your life, that isn't a freely reached decision that is being done because of your circumstances.
Is he? Is he? Is he really saying that poor people are going to? It is OK with poor people ending their lives with the assistance of others because they're poor, because that is what it. That is what it sounds like. And all we're talking about with these amendments is putting provisions to make sure that isn't the case. That's not paternalistic, that is protecting people. And exactly as my noble friend Lord Deben said, that is what we should be doing in this house.
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I am saying that what this bill
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I am saying that what this bill does is allow you to make your own decision. I am strongly against decision. I am strongly against saying poor people should not have that choice, which appears to be that choice, which appears to be what the noble Lord, Lord Harper is saying. And the evidence from abroad is that it's people from perhaps more financially secure circumstances who make this sort of choice. I'm.
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Come back once more because he, I think, suggested why I was saying what I was saying, and that is absolutely not the case. What I'm absolutely not the case. What I'm saying is, if someone's making the decision because they feel pressured, because of their pressured, because of their financial circumstances, that is not a free choice. That is a choice not a free choice. That is a choice that's being forced upon someone by their circumstances. They're not in an equal position to someone with an equal position to someone with resources.
That would be very wrong. And I think people will be horrified that he is suggesting that someone, because of their financial circumstances, should be more likely to end their life than someone who isn't.
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I'm saying it's their choice.
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I'm saying it's their choice. Can we go on to to amendment 31, which is in the name of Baroness Ritchie of Downpatrick, but was Ritchie of Downpatrick, but was moved by or referred to by Baroness Burger in relation to the issue? Burger in relation to the issue? What Baroness Berger is saying on behalf of Baroness Ritchie of Diane behalf of Baroness Ritchie of Diane Park, it must be their own request for an assisted death. The whole bill is posited on the proposition that the person making the request has got to be doing it as their own free choice.
Could I just draw your attention in that respect to, first of all, one one has the capacity to make the decision to end their own life. Then one two has a clear, settled and informed wish to end their own life, and has made the decision that they wish to end their own life voluntarily and has not been coerced. And then if one goes over the page to the conditions, they ate one. A person who wishes to be revived with assistance must make a declaration to that effect.
They must make that declaration. The only. As it were concession made, is in clause 21, where they make a declaration. If you look at section 21 one, this section applies where a person intending to make a declaration or a second declaration declares to a proxy that they are unable to sign their own name, so it allows a proxy to sign their own name. What the Baroness Burger and I am saying, and I apologise for turning my back on people, what they are, what they are, what we are both saying is it's got to be you that does it.
The person who wants the patient. Now, my own view and having consulted on this is that that is absolutely clear under the bill and that the terms of the amendment will make absolutely no difference legally to it. But I just want to make it clear that the policy intent that Baroness Berger wishes to achieve is exactly what I say. The policy intent that has been achieved. Could I go? Because it's convenient to deal with this at the same time, which is amendment 68 A in the name of Baroness Coffey, which she is wishing to put on the face of the bill, somebody who was granted a power of attorney to friends or loved ones should not be in a position where the people who to whom they have granted the power of attorney can then decide for them whether they have an assisted death or not.
Now, I am absolutely clear that the wording of the bill absolutely prevents that, because at every stage in the bill, it requires, first of all, the person to make the declaration themselves, except for the signature, which can be done by a proxy. And the whole process involves the two doctors and the panel looking to see whether it is the clear and voluntary view of that person. And it's settled and firm, and they've got the capacity, but that's what they want to do.
And that is wholly inconsistent with it being done by somebody with a power of attorney. I must say, I am very, very sympathetic to the view of the noble and learned Baroness Baroness Butler-Sloss, that I do not want my children to tell me that I'm about to be killed, which would be inconvenient in a number of respects. But I sense around the house concern about this. And people are saying, well, why don't we just put it on the face of the bill to make it clear? Because there's absolutely no difference between me and Baroness Coffey in relation to the approach.
So I am sure I will get very strong resistance from the draughters of the bill, who will say this is completely unnecessary and messes up the statute book by putting in words that don't matter? But I will raise the issue and I will invite lawyers and anybody else who wants to come to then discuss what the result is. I genuinely do not think it is necessary, but I, I, I feel the concern of the House in relation to it, and I also can't see if one put it on the face of the bill, how it would detrimentally affect the bill.
So I hope that provides some reassurance. The next, the Baroness Finlay, was kind enough to say that she wasn't pushing amendment 36 in this group, but I'm not happy with that. Amendment 38 the Baroness Grey-Thompson moves amendment, which which which requires a further eligibility requirement, which is that this is this is this is shortening it. But I don't want to to to to to people should look at it. Anyone who's ever been subject to a psychotic condition or other mental illness, which causes episodic or chronic suicidal ideation or might be subject to that now, cannot have an assisted death, and that's shortening it.
But that's basically what she is proposing. I am strongly against putting that in. Unfortunately, the whole purpose of the provisions, the two doctors, the panel is that they are checking. Do you have the capacity? Is it your wish? If it if you do have capacity and it is your wish, then you should be entitled to an assisted death. Again, it's your choice. It may very, very well be that the sorts of condition that the noble Baroness refers to in her amendment would be red flags, both for the two doctors and the panel, but it should not rule it out completely.
So, having thought very carefully about it, I do not think that would be an appropriate amendment. Could I go to amendment 39? What the essence of that one is, is that there should be a higher standard for an assisted death for those in care homes, and the the words used in the amendment are higher evidential standard for for many people, a care home is their final home. I recognise all the risks that there may be in relation to it, but again, the whole purpose of the safeguards to doctors and a panel is to ensure they have the capacity and it is their genuine, firm and settled wish.
I do not think it is necessary for there to be a higher evidential standard in relation to that. Again, once the scheme is started, one would very much expect that the terms of the safeguards would be well able to deal with that particular position. Baroness Lawlor has two amendments in this group, amendment 40 and 59, and the effect of amendments 40 and 59, as I understand it, is that instead of and if one goes to clause one two, it says section 8 to 30.
This is what it says at the moment in particular, require steps to be taken to establish that the person has a clear, settled and fully formed wish, etc. the essence of the amendments that the Baroness Lawlor proposes are that you can't have an assisted death unless the steps are taken again. Again, with respect, and I completely understand the point that she's making, and I agree with the policy purpose that she's proposing. But the bill could not be clearer that unless those things are done, you're not entitled to an assisted death.
And that is made because she rightly draws attention to the suicide act, and she will know that it clause the. Hold on. Sorry, I apologise if one looks at clause 32, which specifically spells out that you only, you only are protected from prosecution under the suicide act if the steps within the bill have been gone through. So, agreeing with her approach, I don't think legally that it's necessary
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to to do it. And I thank the noble Lord
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And I thank the noble Lord sponsor for his response. And I agree with him. As I said over the summer. Section one. But but we summer. Section one. But but we want to. My amendment seeks to bring the same precise language to bring the same precise language to two and three, because they don't set out the conditions as in the same way as in one. They they're more descriptive. And it's for that reason that I put in the amendment.
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They are more descriptive. But the provisions say must, must, must each time. And clause 32 says you only escape the consequences of the only escape the consequences of the suicide act if you've complied with all the provisions. So, so as a all the provisions. So, so as a drafting legal matter, I am not in any way disagreeing with the point she's making. I think it's covered it.
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Is the must. There may only.
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I, I didn't quite get that. It's in Subclause three. I find
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the must there a bit puzzling. Is this must in Subclause three. Of course three of.
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Of course three of. Of one goes one if you go down there. If. If the noble Lord goes there. If. If the noble Lord goes down there, the steps to be taken under section sections eight, ten, 11 and 19 must be taken, and it gives under the. When the term patient is in England or Wales, or in the steps under ten and 11, by persons in England and Wales. My my clarification point question is that section eight, ten, 11 and 19
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must be taken is that a may only be taken. It is the reason the two are
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It is the reason the two are different is one. Two is describing what is coming later in sections 8 what is coming later in sections 8 to 31. Three is a mandatory requirement that the steps that requirement that the steps that come later have to take place when the person is in England and Wales, so they're doing different things. so they're doing different things. That's why the the May in two is descriptive and the three is a legal requirement. I'm very happy to say that the shadow attorney general is nodding, which I find is very, very, very, very.
Strong strengthening in relation to this. I the, the the the, the one point I haven't dealt with properly or at all, indeed, is the point that Baroness Berridge makes about the interaction between the Mental Health Act and the, the this bill. As far as and I wasn't sure which specific amendment she was referring to. Was it amendment 38? I don't know, but I don't think there is any legal difficulty as far as I can see in this bill sitting with the Mental Health Act, because as long as these conditions are satisfied, then the patient is entitled to have an assisted death.
And there's nothing in the Mental Health Act that would prevent that. I am more than happy to have a more detailed conversation with her, and if she wishes to bring along Professor Ruskin, would be would he be willing to come and more than happy to have that conversation? I hope I've dealt with every amendment put forward.
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Just one point. It's a matter of personal explanation. I did not call the noble Lord Stonewall. That was the Lord MP who did so. And I don't want to take his excellent
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don't want to take his excellent comment away from him. And I apologise, and I don't know whether or not you feel that know whether or not you feel that you're withdrawing a compliment there or withdrawing an insult, but I get what you're saying. Baroness I get what you're saying. Baroness Cash before you even get to your feet. You're right in relation to the points that have been raised by the. Was it Mr. Stevenson? Who was the commissioner? I've got the name wrong.
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Alistair Henderson. Gave evidence to the Lord Risby and raised a lot of the concerns and raised a lot of the concerns which have been reiterated by noble, Baroness, Lady Berger and others Baroness, Lady Berger and others today about the. Indeed, my Lord, the point you make about being poor and having a choice is something and having a choice is something that is really of concern to the Ehre and raised by that evidence Ehre and raised by that evidence orally and in writing, and subsequently in the letter to Lord Hope.
Because indirect discrimination, because of circumstances is one of the problems with this bill, which is troubling us most greatly, and it that has not been addressed. And that is why the HRC, or without taking a position on the principle, have asked for that clarification. I'd just like to know what do they need to write formally to request that? Or is there evidence before the select committee and the subsequent letter adequate? And would the noble Lord please clarify.
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The Commissioner could be raised
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The Commissioner could be raised a number of points in relation to the the risk of discrimination the the risk of discrimination under the convention. The the. There's an equality impact There's an equality impact assessment that's been done by the government. And broadly they adopt government. And broadly they adopt the approach that it is unlikely that the that the that the that the courts will interfere in a deliberate choice made by government as to legislatures in this case, as to what the limits would be of an assisted dying bill.
I agree strongly with that. It's the approach that the English courts have reflected in relation to assisted dying, and it's the approach the European Court of Human Rights has taken as well. So I don't think that the views expressed by the commissioner to the, to the, to the, to the are. Thank you select committee are right. But I am more than happy if Baroness Cash has got specific ones or all of them that she'd like to raise that a she can raise them with me and b I can raise it with the government as well.
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On that point on my. Noble and learned I'm most grateful. And on this particular grateful. And on this particular point, that there is something fundamental that would equip all of us in this House, irrespective of us in this House, irrespective of our views on the principle of the bill before us, and that is on the equality impact assessment or the equality impact assessment or the lacking of an equality impact assessment. The equality impact assessment only came forward from assessment only came forward from the government at the end of Committee stage in the House of Commons, and the response from the Equalities and Human Rights Commission is that that assessment is wholly inadequate and is in no way commensurate to the length and detail that we would expect on a government bill.
And I would just urge, and I obviously already heard from the Minister in response to the the current set of amendments, but I would urge in the future responses, if we might hear from the government about whether there might be forthcoming with an updated equality impact assessment in order to inform our discussions and debate and deliberations in this House, in terms of what we might be considering going forward, because so far, certainly what we've heard from the Equalities and Human Rights Commission is that we do not have the information before us.
And they in particular, as the commission responsible for this legislation, have some serious concerns that particularly in terms of the societal impacts that this
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bill is, has no way been addressed or deliberated by government in the otherwise. Can I just.
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Can I just. Don't agree with the proposition that it was about equality impact assessment? Secondly, Baroness Cash assessment? Secondly, Baroness Cash legitimately raises the question of of of differing economic of of differing economic circumstances. Could that lead to discrimination if differing economic circumstances could lead to discrimination, which is the point that she's quite properly raising, then? Almost every single assisted dying law throughout Europe would be contrary to the European Convention on Human Rights. I think one's got, one's got, one's got to be to to provide some degree of realism, what the limits of the law are and what the, what the courts are saying here and in Europe is, it's for this is a sensitive and delicate area where we will defer to legislatures.
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I'm grateful for the chance to clarify my point. It's not to litigate any of those complex issues. It's that the Ear is the regulator for this law in this country. And the Ear evidence before the select committee and written in answer to questions from the committee subsequently, is that the equality impact assessment is inadequate and it requests that those inadequacies are clarified and they specify I don't have the text of the letter to hand, but they specify in that letter to Lord Hope the categories of protected characteristic categories that they are particularly concerned about.
And it is that inadequacy, as highlighted by the noble Lady Baroness Berger just now, that inadequacy is what is leaving us with our hands tied behind our backs, unable to answer in this way.
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Well. May I say your hands are not tied behind your back. Ultimately, whatever the ihrc says, whatever whatever the ihrc says, whatever the equality assessment said, we've got to decide here whether we think got to decide here whether we think because of problems under the convention, we should make amendments. And I'm very happy to amendments. And I'm very happy to discuss any. It's clear it's Stonewall Jackson is back that I'm not that persuaded at the moment that you do need changes, but I'm that you do need changes, but I'm more than happy to discuss them.
And particularly I would welcome a discussion with Baroness Cash and anybody else who wants to come along with particular ones that you're really worried about. But I'm starting from the proposition, which is reflected in equality assessment, that the courts are very unlikely to make much change here. And I'm, I'm, I'm, I'm fortified in that by what the Baroness Noble and learned friend, the noble and learned Baroness Baroness Butler-Sloss, said. I'm happy to take any other questions.
I sought to develop proposals in relation to that. Another example is people who suffered, not suffered, have either made an error or somebody in respect of them has made an application that their liberty be taken away because they are seriously mentally ill or lack capacity, or they've actually had their liberty deprived. Again, special provision maybe should be made to them. I mention these points only to indicate that far from being Stonewall Jackson, I am the House of Lords trying to do its best to make sure that we improve the workability of the Bill.
In that spirit, can I go to these particular amendments? First of all, amendment 27, my noble friend Baroness Merron has gone through the technical problems with the amendment. For example, it refers to somebody being referred to an independent voluntary assisted dying service which might or might not be a sensible thing to do. And I suspect my hon. Friend Lord Birt proposals that come later may relate to that. But the noble Baroness Finlay was making a wider point, which she expressed very clearly, which is that you should not be making a decision about whether or not you want an assisted death or not, until you've been fully informed about all of the consequences and all of the processes.
And she made reference to a number of issues in relation to that, including diagnosis, prognosis, effect of an assisted death in terms of the substance. In my respectful submission, the bill reflects exactly the points that she is making. Namely, there needs to be proper information by statute made available to the patient. Could I draw attention to, first of all, clause five five? This is the preliminary discussion that has to be recorded. If a registered medical practitioner conducts such a preliminary discussion.
The practitioner must explain to and discuss with that person the diagnosis and the prognosis, any treatment and the likely effect of it. All appropriate palliative, hospice or other care, including symptom management and psychological support, and offer to refer them to a registered medical practitioner who specialises in such care. For the purposes of further discussion. So all of that has got to be made available at the preliminary discussion. And then noble Lords will remember that there are two doctors that have to look at it.
First of all, the the person who is called the doctor and then the independent doctor, and both the independent doctor and the coordinating doctor must, pursuant to clause 12 two of the bill explained to you and discuss with the person being assessed the person's diagnosis and prognosis, any treatment available and the likely effect of it, any available palliative, hospice or other care, including symptom management and psychological support. And finally, the nature of the substance that is to be provided to assist the person to end their own life, including how it will bring about death and how it will be administered.
The panel have to be satisfied that all of these processes have been gone through. So with the just finish this and I'll come to you Baroness O'Loan in a moment. So I completely agree with the underlying proposition, underlying amendment 27, which is that you should be fully informed, and amendment 42 as well, which puts in the word fully informed. But I believe that the bill has both made provision for that and has a means of enforcing it, which is the panel that.
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I thank the Noble and learned will forgive me. I just wondered if you could clarify for me and for the house.
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the house. I'm so sorry.
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I'm so sorry. I'm sorry. I apologise. I thank the noble and learned Lord for giving way. I just wondered if he giving way. I just wondered if he could clarify for me what is meant could clarify for me what is meant by in clause 12 to C3 and the available palliative, hospice or other care? Because we know that palliative and hospice care is available if you can travel to it, if you live in a particular area and it's not available in very significant areas.
So what is meant by available in that context? Please.
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Available in that context obviously means available in a obviously means available in a practical sense for that particular patient. So the fact that one lives in John O'Groats, I'm sorry, the in John O'Groats, I'm sorry, the western part of England and there is part of care of a particular sort available in a place you sort available in a place you cannot access that would not be available. Amendment 28, again proposed by the noble Baroness Baroness Finlay. Again, my noble friend Baroness Merron indicated what the effect of that amendment is.
The effect of that amendment is that there are two additional requirements before you are eligible for assisted death. First, that you are eligible for certain specific benefits available at end of life, and secondly, that there has been a home visit by a GP to consider it. Neither of those are appropriate for eligibility requirements for assisted death, for example. As my learned friend Baroness Merron said, you might well not be eligible for particular benefits, for example, because they are means tested and you are above the particular means, it would be wholly wrong that that would prevent you getting assisted death if you were otherwise entitled to it.
But again, I don't think that the purpose of of Baroness Finlay in advancing that particular provision was in order to say you have got to satisfy these specific requirements with all the problems that my noble friend Baroness Merron indicated. What I think she was getting at was, you've got to be sure that financial circumstances, because you are short of money, is not a relevant reason for assisted death. In, in in putting forward this bill, I put forward the bill on the basis that choice is the key thing.
Your financial position might be an element in what makes you reach a decision, and the way that the safeguards are put in the bill is what they are trying to do, is to ensure that it's your decision
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freely made. I am slightly incredulous of
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I am slightly incredulous of this. I'm just going to make sure I'm understanding correctly. He's talking about and we heard, I think, talking about and we heard, I think, from the noble Lady Baroness Gale about someone's autonomy. If you're in a financial position where you in a financial position where you feel that you are unable to live properly because you have no money, properly because you have no money, and as a result of that, you decide you want to end your life, that isn't a freely reached decision that is being done because of your circumstances.
Is he? Is he? Is he really saying that poor people are going to? It is OK with poor people ending their lives with the assistance of others because they're poor, because that is what it. That is what it sounds like. And all we're talking about with these amendments is putting provisions to make sure that isn't the case. That's not paternalistic, that is protecting people. And exactly as my noble friend Lord Deben said, that is what we should be doing in this house.
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I am saying that what this bill
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I am saying that what this bill does is allow you to make your own decision. I am strongly against decision. I am strongly against saying poor people should not have that choice, which appears to be that choice, which appears to be what the noble Lord, Lord Harper is saying. And the evidence from abroad is that it's people from perhaps more financially secure circumstances who make this sort of choice. I'm.
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Come back once more because he, I think, suggested why I was saying what I was saying, and that is absolutely not the case. What I'm absolutely not the case. What I'm saying is, if someone's making the decision because they feel pressured, because of their pressured, because of their financial circumstances, that is not a free choice. That is a choice not a free choice. That is a choice that's being forced upon someone by their circumstances. They're not in an equal position to someone with an equal position to someone with resources.
That would be very wrong. And I think people will be horrified that he is suggesting that someone, because of their financial circumstances, should be more likely to end their life than someone who isn't.
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I'm saying it's their choice.
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I'm saying it's their choice. Can we go on to to amendment 31, which is in the name of Baroness Ritchie of Downpatrick, but was Ritchie of Downpatrick, but was moved by or referred to by Baroness Burger in relation to the issue? Burger in relation to the issue? What Baroness Berger is saying on behalf of Baroness Ritchie of Diane behalf of Baroness Ritchie of Diane Park, it must be their own request for an assisted death. The whole bill is posited on the proposition that the person making the request has got to be doing it as their own free choice.
Could I just draw your attention in that respect to, first of all, one one has the capacity to make the decision to end their own life. Then one two has a clear, settled and informed wish to end their own life, and has made the decision that they wish to end their own life voluntarily and has not been coerced. And then if one goes over the page to the conditions, they ate one. A person who wishes to be revived with assistance must make a declaration to that effect.
They must make that declaration. The only. As it were concession made, is in clause 21, where they make a declaration. If you look at section 21 one, this section applies where a person intending to make a declaration or a second declaration declares to a proxy that they are unable to sign their own name, so it allows a proxy to sign their own name. What the Baroness Burger and I am saying, and I apologise for turning my back on people, what they are, what they are, what we are both saying is it's got to be you that does it.
The person who wants the patient. Now, my own view and having consulted on this is that that is absolutely clear under the bill and that the terms of the amendment will make absolutely no difference legally to it. But I just want to make it clear that the policy intent that Baroness Berger wishes to achieve is exactly what I say. The policy intent that has been achieved. Could I go? Because it's convenient to deal with this at the same time, which is amendment 68 A in the name of Baroness Coffey, which she is wishing to put on the face of the bill, somebody who was granted a power of attorney to friends or loved ones should not be in a position where the people who to whom they have granted the power of attorney can then decide for them whether they have an assisted death or not.
Now, I am absolutely clear that the wording of the bill absolutely prevents that, because at every stage in the bill, it requires, first of all, the person to make the declaration themselves, except for the signature, which can be done by a proxy. And the whole process involves the two doctors and the panel looking to see whether it is the clear and voluntary view of that person. And it's settled and firm, and they've got the capacity, but that's what they want to do.
And that is wholly inconsistent with it being done by somebody with a power of attorney. I must say, I am very, very sympathetic to the view of the noble and learned Baroness Baroness Butler-Sloss, that I do not want my children to tell me that I'm about to be killed, which would be inconvenient in a number of respects. But I sense around the house concern about this. And people are saying, well, why don't we just put it on the face of the bill to make it clear? Because there's absolutely no difference between me and Baroness Coffey in relation to the approach.
So I am sure I will get very strong resistance from the draughters of the bill, who will say this is completely unnecessary and messes up the statute book by putting in words that don't matter? But I will raise the issue and I will invite lawyers and anybody else who wants to come to then discuss what the result is. I genuinely do not think it is necessary, but I, I, I feel the concern of the House in relation to it, and I also can't see if one put it on the face of the bill, how it would detrimentally affect the bill.
So I hope that provides some reassurance. The next, the Baroness Finlay, was kind enough to say that she wasn't pushing amendment 36 in this group, but I'm not happy with that. Amendment 38 the Baroness Grey-Thompson moves amendment, which which which requires a further eligibility requirement, which is that this is this is this is shortening it. But I don't want to to to to to people should look at it. Anyone who's ever been subject to a psychotic condition or other mental illness, which causes episodic or chronic suicidal ideation or might be subject to that now, cannot have an assisted death, and that's shortening it.
But that's basically what she is proposing. I am strongly against putting that in. Unfortunately, the whole purpose of the provisions, the two doctors, the panel is that they are checking. Do you have the capacity? Is it your wish? If it if you do have capacity and it is your wish, then you should be entitled to an assisted death. Again, it's your choice. It may very, very well be that the sorts of condition that the noble Baroness refers to in her amendment would be red flags, both for the two doctors and the panel, but it should not rule it out completely.
So, having thought very carefully about it, I do not think that would be an appropriate amendment. Could I go to amendment 39? What the essence of that one is, is that there should be a higher standard for an assisted death for those in care homes, and the the words used in the amendment are higher evidential standard for for many people, a care home is their final home. I recognise all the risks that there may be in relation to it, but again, the whole purpose of the safeguards to doctors and a panel is to ensure they have the capacity and it is their genuine, firm and settled wish.
I do not think it is necessary for there to be a higher evidential standard in relation to that. Again, once the scheme is started, one would very much expect that the terms of the safeguards would be well able to deal with that particular position. Baroness Lawlor has two amendments in this group, amendment 40 and 59, and the effect of amendments 40 and 59, as I understand it, is that instead of and if one goes to clause one two, it says section 8 to 30.
This is what it says at the moment in particular, require steps to be taken to establish that the person has a clear, settled and fully formed wish, etc. the essence of the amendments that the Baroness Lawlor proposes are that you can't have an assisted death unless the steps are taken again. Again, with respect, and I completely understand the point that she's making, and I agree with the policy purpose that she's proposing. But the bill could not be clearer that unless those things are done, you're not entitled to an assisted death.
And that is made because she rightly draws attention to the suicide act, and she will know that it clause the. Hold on. Sorry, I apologise if one looks at clause 32, which specifically spells out that you only, you only are protected from prosecution under the suicide act if the steps within the bill have been gone through. So, agreeing with her approach, I don't think legally that it's necessary
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to to do it. And I thank the noble Lord
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And I thank the noble Lord sponsor for his response. And I agree with him. As I said over the summer. Section one. But but we summer. Section one. But but we want to. My amendment seeks to bring the same precise language to bring the same precise language to two and three, because they don't set out the conditions as in the same way as in one. They they're more descriptive. And it's for that reason that I put in the amendment.
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They are more descriptive. But the provisions say must, must, must each time. And clause 32 says you only escape the consequences of the only escape the consequences of the suicide act if you've complied with all the provisions. So, so as a all the provisions. So, so as a drafting legal matter, I am not in any way disagreeing with the point she's making. I think it's covered it.
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Is the must. There may only.
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I, I didn't quite get that. It's in Subclause three. I find
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the must there a bit puzzling. Is this must in Subclause three. Of course three of.
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Of course three of. Of one goes one if you go down there. If. If the noble Lord goes there. If. If the noble Lord goes down there, the steps to be taken under section sections eight, ten, 11 and 19 must be taken, and it gives under the. When the term patient is in England or Wales, or in the steps under ten and 11, by persons in England and Wales. My my clarification point question is that section eight, ten, 11 and 19
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must be taken is that a may only be taken. It is the reason the two are
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It is the reason the two are different is one. Two is describing what is coming later in sections 8 what is coming later in sections 8 to 31. Three is a mandatory requirement that the steps that requirement that the steps that come later have to take place when the person is in England and Wales, so they're doing different things. so they're doing different things. That's why the the May in two is descriptive and the three is a legal requirement. I'm very happy to say that the shadow attorney general is nodding, which I find is very, very, very, very.
Strong strengthening in relation to this. I the, the the the, the one point I haven't dealt with properly or at all, indeed, is the point that Baroness Berridge makes about the interaction between the Mental Health Act and the, the this bill. As far as and I wasn't sure which specific amendment she was referring to. Was it amendment 38? I don't know, but I don't think there is any legal difficulty as far as I can see in this bill sitting with the Mental Health Act, because as long as these conditions are satisfied, then the patient is entitled to have an assisted death.
And there's nothing in the Mental Health Act that would prevent that. I am more than happy to have a more detailed conversation with her, and if she wishes to bring along Professor Ruskin, would be would he be willing to come and more than happy to have that conversation? I hope I've dealt with every amendment put forward.
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Just one point. It's a matter of personal explanation. I did not call the noble Lord Stonewall. That was the Lord MP who did so. And I don't want to take his excellent
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don't want to take his excellent comment away from him. And I apologise, and I don't know whether or not you feel that know whether or not you feel that you're withdrawing a compliment there or withdrawing an insult, but I get what you're saying. Baroness I get what you're saying. Baroness Cash before you even get to your feet. You're right in relation to the points that have been raised by the. Was it Mr. Stevenson? Who was the commissioner? I've got the name wrong.
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Alistair Henderson. Gave evidence to the Lord Risby and raised a lot of the concerns and raised a lot of the concerns which have been reiterated by noble, Baroness, Lady Berger and others Baroness, Lady Berger and others today about the. Indeed, my Lord, the point you make about being poor and having a choice is something and having a choice is something that is really of concern to the Ehre and raised by that evidence Ehre and raised by that evidence orally and in writing, and subsequently in the letter to Lord Hope.
Because indirect discrimination, because of circumstances is one of the problems with this bill, which is troubling us most greatly, and it that has not been addressed. And that is why the HRC, or without taking a position on the principle, have asked for that clarification. I'd just like to know what do they need to write formally to request that? Or is there evidence before the select committee and the subsequent letter adequate? And would the noble Lord please clarify.
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The Commissioner could be raised
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The Commissioner could be raised a number of points in relation to the the risk of discrimination the the risk of discrimination under the convention. The the. There's an equality impact There's an equality impact assessment that's been done by the government. And broadly they adopt government. And broadly they adopt the approach that it is unlikely that the that the that the that the courts will interfere in a deliberate choice made by government as to legislatures in this case, as to what the limits would be of an assisted dying bill.
I agree strongly with that. It's the approach that the English courts have reflected in relation to assisted dying, and it's the approach the European Court of Human Rights has taken as well. So I don't think that the views expressed by the commissioner to the, to the, to the, to the are. Thank you select committee are right. But I am more than happy if Baroness Cash has got specific ones or all of them that she'd like to raise that a she can raise them with me and b I can raise it with the government as well.
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On that point on my. Noble and learned I'm most grateful. And on this particular grateful. And on this particular point, that there is something fundamental that would equip all of us in this House, irrespective of us in this House, irrespective of our views on the principle of the bill before us, and that is on the equality impact assessment or the equality impact assessment or the lacking of an equality impact assessment. The equality impact assessment only came forward from assessment only came forward from the government at the end of Committee stage in the House of Commons, and the response from the Equalities and Human Rights Commission is that that assessment is wholly inadequate and is in no way commensurate to the length and detail that we would expect on a government bill.
And I would just urge, and I obviously already heard from the Minister in response to the the current set of amendments, but I would urge in the future responses, if we might hear from the government about whether there might be forthcoming with an updated equality impact assessment in order to inform our discussions and debate and deliberations in this House, in terms of what we might be considering going forward, because so far, certainly what we've heard from the Equalities and Human Rights Commission is that we do not have the information before us.
And they in particular, as the commission responsible for this legislation, have some serious concerns that particularly in terms of the societal impacts that this
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bill is, has no way been addressed or deliberated by government in the otherwise. Can I just.
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Can I just. Don't agree with the proposition that it was about equality impact assessment? Secondly, Baroness Cash assessment? Secondly, Baroness Cash legitimately raises the question of of of differing economic of of differing economic circumstances. Could that lead to discrimination if differing economic circumstances could lead to discrimination, which is the point that she's quite properly raising, then? Almost every single assisted dying law throughout Europe would be contrary to the European Convention on Human Rights. I think one's got, one's got, one's got to be to to provide some degree of realism, what the limits of the law are and what the, what the courts are saying here and in Europe is, it's for this is a sensitive and delicate area where we will defer to legislatures.
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I'm grateful for the chance to clarify my point. It's not to litigate any of those complex issues. It's that the Ear is the regulator for this law in this country. And the Ear evidence before the select committee and written in answer to questions from the committee subsequently, is that the equality impact assessment is inadequate and it requests that those inadequacies are clarified and they specify I don't have the text of the letter to hand, but they specify in that letter to Lord Hope the categories of protected characteristic categories that they are particularly concerned about.
And it is that inadequacy, as highlighted by the noble Lady Baroness Berger just now, that inadequacy is what is leaving us with our hands tied behind our backs, unable to answer in this way.
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Well. May I say your hands are not tied behind your back. Ultimately, whatever the ihrc says, whatever whatever the ihrc says, whatever the equality assessment said, we've got to decide here whether we think got to decide here whether we think because of problems under the convention, we should make amendments. And I'm very happy to amendments. And I'm very happy to discuss any. It's clear it's Stonewall Jackson is back that I'm not that persuaded at the moment that you do need changes, but I'm that you do need changes, but I'm more than happy to discuss them.
And particularly I would welcome a discussion with Baroness Cash and anybody else who wants to come along with particular ones that you're really worried about. But I'm starting from the proposition, which is reflected in equality assessment, that the courts are very unlikely to make much change here. And I'm, I'm, I'm, I'm fortified in that by what the Baroness Noble and learned friend, the noble and learned Baroness Baroness Butler-Sloss, said. I'm happy to take any other questions.
14:31
Baroness Finlay of Llandaff (Crossbench)
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Baroness Finlay of Llandaff (Crossbench)
I this has been. >> In many ways a fascinating debate, and I think, as illustrated very clearly, the problems of this very clearly, the problems of this being a private member's bill and the difficulties we are having in trying to raise issues and draft amendments to improve the bill. There have been a lot of suggestions about how the bill could be made safer because of the concerns of coercion, because of the concerns over protection for people.
When I'm I, I'm not going to take time commenting on everyone. I'm really grateful to all of the comments that have been made just in relation to the lasting power of attorney. I would really caution against dismissing this going on to the face of the bill, given the number of complaints that go to the Court of Protection, where lasting powers of attorney have been abused by people who hold them. And I think that needs to be looked at really carefully. I appreciate the fact that the noble and learned Lord has begun to look at enhanced assessment for people who may be particularly vulnerable, and it would be helpful to know when those amendments may be before us and for us to look at before we get into further rounds of amendments, which we will then be told are poorly drafted or not workable.
If I could just make a couple of other comments. I was very grateful to the noble Lord Lord Wolfson of Tredegar for re-emphasising the criteria about having a fully informed decision with capacity to make that decision and make it voluntarily. And if I heard the noble and learned Lord correctly, it sounded to me as if he's actually willing to accept my amendment 42 to insert the word fully in ahead of the word informed to ensure that it is a fully informed decision that's being taken.
Excuse me, there are just a couple of other comments I do want
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to make. One in relation to poverty. Unfortunately. It's being said not to create
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It's being said not to create false hopes. I don't think the word fully is necessary. And I think you're right to say I never quite you're right to say I never quite made that clear. But I don't think it's necessary because I went through all the provisions that required the information to be given there anyway.
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given there anyway. Well, I think it's really disappointing because I think the House would greatly welcome the recognition by the noble and learned Lord that some of the things that we're trying to put down are to improve the bill, and perhaps we could work further on them in terms of sorry, I've slightly lost my place, that in terms of poverty, unfortunately, the SR1 does not automatically happen. There is no automatic trigger, and the point of that amendment was because one wants to make sure that a person who may be in real financial straits has never known that there may be benefits that they're eligible for, and that they should have somebody say, if are you finding things particularly difficult? Do you know there are some benefits that might help improve your quality of life, irrespective of whether they wish to proceed or don't wish to proceed? It's not to stop them, but it's to make sure that they can access what they need.
In terms of poverty, I'm afraid that the the Ontario Coroner Review does report people who, because of financial stringencies, have sought and been approved for having an assisted death and indeed have dropped that request when there has been fundraising, a donor has come forward to bail them out of their difficult circumstances. So to say that there isn't any is really difficult, and I have understood that it is our duty towards society to try to narrow the gaps in poverty, not just accept that if you are in poverty, then this may be a decision that you'd want to take, which there was some expressions of slight horror, I think, at the way that the noble and learned Lord expressed his dismissal of poverty.
And the last thing I do want to clarify, I feel professionally, I must say, is that the noble Lord, Lord Markham, has referred on a few occasions to his mother being helped on her way. Now I'm sure that the doctor was not giving your. I beg your pardon, the noble Lords mother a massive, lethal overdose of drugs, which is what would happen within this bill, but may well have been giving her a little bit more analgesia and some other medication in order for her to be comfortable.
That is really routine clinical practice when dying as be saying to the family, look, they are they don't seem comfortable and they really are near the end and actually will give a bit more analgesia and possibly an anxiolytic as well, which will allow the person to just gently let go of life and they die. And we know that pain is a potent drive to respiration, and people can't let go of life until they're comfortable and out of pain.
And sometimes it's a small dose, sometimes it's a larger dose. That is not what we're talking about in this bill. And I think it's really important that people listening to this debate out there do not think that we're going around shortening life by giving people the dose of analgesia or anxiolytic that they need at the end of life with other, other comments that have been made. I'm not going to go through them all because of of time. This has been a long and very informed debate, except to request that the equality impact assessment should be looked at again.
And whilst it may not be the opinion of the noble and learned Lord that it's inadequate, we have heard substantially from people who know well about equality impact assessments that they are unhappy with it, and I do not see the harm in it being revisited and retabled for us, so that we could have an up to date version. And perhaps the same should go for the impact assessment as well, where there are concerns that the numbers may be inappropriately low in that
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assessment. With that, I beg leave to withdraw the amendment. Is it your Lordships pleasure
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Is it your Lordships pleasure that this amendment be withdrawn? It is by leave withdrawn. Baroness It is by leave withdrawn. Baroness Finlay amendment 2829 not moved by my Lords. We now come to the next group, which is starts with amendment 30 and Baroness Foster in
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amendment 30 and Baroness Foster in clause one, amendment 30. Oh yes. I apologise, my Lords. I had notified the speaker's office and the the whips. I would be moving amendment 30, which has my name,
When I'm I, I'm not going to take time commenting on everyone. I'm really grateful to all of the comments that have been made just in relation to the lasting power of attorney. I would really caution against dismissing this going on to the face of the bill, given the number of complaints that go to the Court of Protection, where lasting powers of attorney have been abused by people who hold them. And I think that needs to be looked at really carefully. I appreciate the fact that the noble and learned Lord has begun to look at enhanced assessment for people who may be particularly vulnerable, and it would be helpful to know when those amendments may be before us and for us to look at before we get into further rounds of amendments, which we will then be told are poorly drafted or not workable.
If I could just make a couple of other comments. I was very grateful to the noble Lord Lord Wolfson of Tredegar for re-emphasising the criteria about having a fully informed decision with capacity to make that decision and make it voluntarily. And if I heard the noble and learned Lord correctly, it sounded to me as if he's actually willing to accept my amendment 42 to insert the word fully in ahead of the word informed to ensure that it is a fully informed decision that's being taken.
Excuse me, there are just a couple of other comments I do want
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to make. One in relation to poverty. Unfortunately. It's being said not to create
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It's being said not to create false hopes. I don't think the word fully is necessary. And I think you're right to say I never quite you're right to say I never quite made that clear. But I don't think it's necessary because I went through all the provisions that required the information to be given there anyway.
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given there anyway. Well, I think it's really disappointing because I think the House would greatly welcome the recognition by the noble and learned Lord that some of the things that we're trying to put down are to improve the bill, and perhaps we could work further on them in terms of sorry, I've slightly lost my place, that in terms of poverty, unfortunately, the SR1 does not automatically happen. There is no automatic trigger, and the point of that amendment was because one wants to make sure that a person who may be in real financial straits has never known that there may be benefits that they're eligible for, and that they should have somebody say, if are you finding things particularly difficult? Do you know there are some benefits that might help improve your quality of life, irrespective of whether they wish to proceed or don't wish to proceed? It's not to stop them, but it's to make sure that they can access what they need.
In terms of poverty, I'm afraid that the the Ontario Coroner Review does report people who, because of financial stringencies, have sought and been approved for having an assisted death and indeed have dropped that request when there has been fundraising, a donor has come forward to bail them out of their difficult circumstances. So to say that there isn't any is really difficult, and I have understood that it is our duty towards society to try to narrow the gaps in poverty, not just accept that if you are in poverty, then this may be a decision that you'd want to take, which there was some expressions of slight horror, I think, at the way that the noble and learned Lord expressed his dismissal of poverty.
And the last thing I do want to clarify, I feel professionally, I must say, is that the noble Lord, Lord Markham, has referred on a few occasions to his mother being helped on her way. Now I'm sure that the doctor was not giving your. I beg your pardon, the noble Lords mother a massive, lethal overdose of drugs, which is what would happen within this bill, but may well have been giving her a little bit more analgesia and some other medication in order for her to be comfortable.
That is really routine clinical practice when dying as be saying to the family, look, they are they don't seem comfortable and they really are near the end and actually will give a bit more analgesia and possibly an anxiolytic as well, which will allow the person to just gently let go of life and they die. And we know that pain is a potent drive to respiration, and people can't let go of life until they're comfortable and out of pain.
And sometimes it's a small dose, sometimes it's a larger dose. That is not what we're talking about in this bill. And I think it's really important that people listening to this debate out there do not think that we're going around shortening life by giving people the dose of analgesia or anxiolytic that they need at the end of life with other, other comments that have been made. I'm not going to go through them all because of of time. This has been a long and very informed debate, except to request that the equality impact assessment should be looked at again.
And whilst it may not be the opinion of the noble and learned Lord that it's inadequate, we have heard substantially from people who know well about equality impact assessments that they are unhappy with it, and I do not see the harm in it being revisited and retabled for us, so that we could have an up to date version. And perhaps the same should go for the impact assessment as well, where there are concerns that the numbers may be inappropriately low in that
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assessment. With that, I beg leave to withdraw the amendment. Is it your Lordships pleasure
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Is it your Lordships pleasure that this amendment be withdrawn? It is by leave withdrawn. Baroness It is by leave withdrawn. Baroness Finlay amendment 2829 not moved by my Lords. We now come to the next group, which is starts with amendment 30 and Baroness Foster in
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amendment 30 and Baroness Foster in clause one, amendment 30. Oh yes. I apologise, my Lords. I had notified the speaker's office and the the whips. I would be moving amendment 30, which has my name,
14:39
14:39
AMDT: 30
Lord Weir of Ballyholme (Democratic Unionist Party)
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AMDT: 30
Lord Weir of Ballyholme (Democratic Unionist Party)
Lord Empey. This group obviously deals with the issue of motivation, and there is a level of link with and there is a level of link with the previous group on eligibility. In the interest of time, I will In the interest of time, I will allow the other proposers of the other amendments to speak to those and I will concentrate entirely upon amendment 30. The purpose of amendment 30 is largely to ensure that the underlying principle. I think one of the key underlying principles of this Bill remains true, namely, that when dealing with motivation, that the substantial motivation for anyone applying for the assisted dying service, that there is a critical causal link between that desire to have assisted death directly with the terminal illness, and that the application for an assisted death does not arise from a range of other motivations.
Now, also linked in with this, I think, is an attempt at least, to try and ease the gap between two. I think tensions that will lie within public policy should this bill become law. Because should the bill become law, the state will then play a role in assisting the death of members of the public, while at the same time there is also a public policy commitment and priority to try to prevent suicide. And in many ways, these two objectives are pulling in opposite directions.
And I think this amendment at least tries to create a little bit of clear blue water between the two. It cannot square that particular circle, but I think it goes some way towards dealing with that issue, sticking to the original principles of the bill are all the more important, because I think one of the most fundamental motivations behind the bill itself has been had to be abandoned from the face of the bill. We know that the proposer of the bill Kim Leadbeater in another place, both before the bill and during the bill, has said on numerous occasions that this is principally about pain and suffering.
Indeed, I think on one occasion as she Dakota to the made the comments, I think the Archbishop of Canterbury, then my proposed legislation is less about ending life, but very much about easing suffering and shortening death. Now we know, and I'm sure Lord Falconer will give us very good reasons as to why this is the case. But nowhere does pain and suffering appear as a as part of this, this bill. And I know that this is an issue which should be probed, particularly by the amendments in this group by Baroness Coffey.
So to try and ensure that there is that strong critical causal link between the termination of life being the motivator and the assisted death, the amendment therefore, seeks to exclude six other areas which could be considered as substantial motivation for an assisted death. Firstly, on the issue of lack of access or delay of access to alternative medical treatments. Now, I don't wish to reiterate the earlier debates that we've had, for instance, on palliative care or indeed the question marks that would be there sometimes around a certain level of postcode lottery.
As regards the NHS, those have been debated already. But if we are again to fulfil, I think one of the key arguments for the Bill, that of bodily autonomy, if there is to be autonomy, then autonomy has to be real choice. And if there is no availability within a reasonable opportunity for access to any alternative medications, then it is not really a choice. And that should not be the motivation for an application. Secondly, and again this was touched in the the last group.
It should not be the case that the substantial motivation is lack of resources. Now, I would agree with with one thing with Lord Falconer, this shouldn't be something which discriminates against people on the basis of socioeconomic background, but therefore it means that it shouldn't be something which becomes a driver for the poor to have to go down this route because they don't have any other opportunity. And this is not simply a question of a concern, which is hypothetical. We have seen it happen time and time again, particularly in the Canadian example, in which people, particularly with mounting debts, which are quite commonplace amongst those who have who are debilitated by illnesses, feel under a massive financial pressure that the only route through is to actually then have an assisted death.
And that should not be the principal motivator. Thirdly, it should not be because someone feels themselves to be a burden. Now, we've mentioned before that obviously we will want to put in all provisions that we can on the issue of coercion, but what may be described as soft coercion is a feeling amongst those who are terminally ill, that they are being a burden on their family, to their loved ones, perhaps to society as a whole, and that that acts as a level of driver towards the assisted dying.
And again, there is plenty of evidence that we can see that this is a major factor in other jurisdictions. So, for example, amongst those who were applying in the process for assisted dying in Oregon in 1998, whenever it was introduced, around 13% indicated that feeling of burden was part of the was a substantial part of the motivation. That figure has now risen to 42% of those applying, and in other jurisdictions it can be even higher. So we want to safeguard against that.
Fourthly, the issues that should not be we have got to be very careful that we do not conflate the issue of disability with terminal illness. It is not the same as saying someone is disabled, even very severely disabled. Someone has very life limiting conditions and someone is terminally ill. There are two very different things. While I think at a later groups we will debate many of the issues around disability. We know the grave concern that has been there amongst people within the disabled community.
That is why there are hundreds of groups who have indicated who represent disabled people, that they are not happy with the bill, and not a single one has indicated they are in favour of it. So therefore, I think it was important, for the sake of clarity, that we put on the face of the bill this level of protection. And finally the other two groups, which I think are interlinked, are those suffering from mental disorders and ideation, suicidal ideation, because there's a strong connection between the two.
We know that, for example, there has been research done which suggests that around 10 to 15% of those suffering from severe bipolar disorders have committed suicide, and that those with the same condition who have attempted suicide is an even much greater figure. And again, we cannot have a situation in which suicide, a route through for suicide, is then fast tracked through this. And so therefore I think we have to have this protection. We also know that all these concerns cannot simply be met by capacity.
One can be severely depressed. One can be have severe disabilities or feel levels of financial burden or whatever. But all those things can happen and you can still have full capacity. So capacity I think is a necessary requirement to be eligible, but it is not a sufficient requirement. Can I say in conclusion, and I say this with an element of hope, perhaps more so in experience, they learn a noble Lord. I would urge him with his responding to these amendments, to try and adopt a very positive approach to it.
He has, I think, in the earlier group, said that he does not see his role model as Stonewall Jackson, who seems to be the American civil general of the of the day. And I would say to him that Stonewall Jackson, he is right in adopting that approach. Stonewall Jackson is not a good role model, not simply because he died at the age of 39, but his demise was brought about by inadvertently being shot by his own troops in that regard. A fate which I am sure that none of us hopes befalls the noble noble and learned Lord.
So I look forward to a positive embracing of these important amendments. And with that,
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I beg to move the amendment 30. Page one, line 12. Insert the words as printed on the Marshalled words as printed on the Marshalled List. My Lords, as amendment 30 Z a is an amendment to amendment 30. I call Baroness Lawlor.
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call Baroness Lawlor. My Lords, I support all six subsections of the amendment in the subsections of the amendment in the name of of Baroness Hodge of she name of of Baroness Hodge of she but proposed today for us by the noble Lord mayor of Ballyholme, and
Now, also linked in with this, I think, is an attempt at least, to try and ease the gap between two. I think tensions that will lie within public policy should this bill become law. Because should the bill become law, the state will then play a role in assisting the death of members of the public, while at the same time there is also a public policy commitment and priority to try to prevent suicide. And in many ways, these two objectives are pulling in opposite directions.
And I think this amendment at least tries to create a little bit of clear blue water between the two. It cannot square that particular circle, but I think it goes some way towards dealing with that issue, sticking to the original principles of the bill are all the more important, because I think one of the most fundamental motivations behind the bill itself has been had to be abandoned from the face of the bill. We know that the proposer of the bill Kim Leadbeater in another place, both before the bill and during the bill, has said on numerous occasions that this is principally about pain and suffering.
Indeed, I think on one occasion as she Dakota to the made the comments, I think the Archbishop of Canterbury, then my proposed legislation is less about ending life, but very much about easing suffering and shortening death. Now we know, and I'm sure Lord Falconer will give us very good reasons as to why this is the case. But nowhere does pain and suffering appear as a as part of this, this bill. And I know that this is an issue which should be probed, particularly by the amendments in this group by Baroness Coffey.
So to try and ensure that there is that strong critical causal link between the termination of life being the motivator and the assisted death, the amendment therefore, seeks to exclude six other areas which could be considered as substantial motivation for an assisted death. Firstly, on the issue of lack of access or delay of access to alternative medical treatments. Now, I don't wish to reiterate the earlier debates that we've had, for instance, on palliative care or indeed the question marks that would be there sometimes around a certain level of postcode lottery.
As regards the NHS, those have been debated already. But if we are again to fulfil, I think one of the key arguments for the Bill, that of bodily autonomy, if there is to be autonomy, then autonomy has to be real choice. And if there is no availability within a reasonable opportunity for access to any alternative medications, then it is not really a choice. And that should not be the motivation for an application. Secondly, and again this was touched in the the last group.
It should not be the case that the substantial motivation is lack of resources. Now, I would agree with with one thing with Lord Falconer, this shouldn't be something which discriminates against people on the basis of socioeconomic background, but therefore it means that it shouldn't be something which becomes a driver for the poor to have to go down this route because they don't have any other opportunity. And this is not simply a question of a concern, which is hypothetical. We have seen it happen time and time again, particularly in the Canadian example, in which people, particularly with mounting debts, which are quite commonplace amongst those who have who are debilitated by illnesses, feel under a massive financial pressure that the only route through is to actually then have an assisted death.
And that should not be the principal motivator. Thirdly, it should not be because someone feels themselves to be a burden. Now, we've mentioned before that obviously we will want to put in all provisions that we can on the issue of coercion, but what may be described as soft coercion is a feeling amongst those who are terminally ill, that they are being a burden on their family, to their loved ones, perhaps to society as a whole, and that that acts as a level of driver towards the assisted dying.
And again, there is plenty of evidence that we can see that this is a major factor in other jurisdictions. So, for example, amongst those who were applying in the process for assisted dying in Oregon in 1998, whenever it was introduced, around 13% indicated that feeling of burden was part of the was a substantial part of the motivation. That figure has now risen to 42% of those applying, and in other jurisdictions it can be even higher. So we want to safeguard against that.
Fourthly, the issues that should not be we have got to be very careful that we do not conflate the issue of disability with terminal illness. It is not the same as saying someone is disabled, even very severely disabled. Someone has very life limiting conditions and someone is terminally ill. There are two very different things. While I think at a later groups we will debate many of the issues around disability. We know the grave concern that has been there amongst people within the disabled community.
That is why there are hundreds of groups who have indicated who represent disabled people, that they are not happy with the bill, and not a single one has indicated they are in favour of it. So therefore, I think it was important, for the sake of clarity, that we put on the face of the bill this level of protection. And finally the other two groups, which I think are interlinked, are those suffering from mental disorders and ideation, suicidal ideation, because there's a strong connection between the two.
We know that, for example, there has been research done which suggests that around 10 to 15% of those suffering from severe bipolar disorders have committed suicide, and that those with the same condition who have attempted suicide is an even much greater figure. And again, we cannot have a situation in which suicide, a route through for suicide, is then fast tracked through this. And so therefore I think we have to have this protection. We also know that all these concerns cannot simply be met by capacity.
One can be severely depressed. One can be have severe disabilities or feel levels of financial burden or whatever. But all those things can happen and you can still have full capacity. So capacity I think is a necessary requirement to be eligible, but it is not a sufficient requirement. Can I say in conclusion, and I say this with an element of hope, perhaps more so in experience, they learn a noble Lord. I would urge him with his responding to these amendments, to try and adopt a very positive approach to it.
He has, I think, in the earlier group, said that he does not see his role model as Stonewall Jackson, who seems to be the American civil general of the of the day. And I would say to him that Stonewall Jackson, he is right in adopting that approach. Stonewall Jackson is not a good role model, not simply because he died at the age of 39, but his demise was brought about by inadvertently being shot by his own troops in that regard. A fate which I am sure that none of us hopes befalls the noble noble and learned Lord.
So I look forward to a positive embracing of these important amendments. And with that,
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I beg to move the amendment 30. Page one, line 12. Insert the words as printed on the Marshalled words as printed on the Marshalled List. My Lords, as amendment 30 Z a is an amendment to amendment 30. I call Baroness Lawlor.
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call Baroness Lawlor. My Lords, I support all six subsections of the amendment in the subsections of the amendment in the name of of Baroness Hodge of she name of of Baroness Hodge of she but proposed today for us by the noble Lord mayor of Ballyholme, and
14:49
Baroness Lawlor (Conservative)
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Baroness Lawlor (Conservative)
supported by Baroness Fox and Lord Empey. But I urge that there should Empey. But I urge that there should be an additional subsection, the subsections, as they stand in amendment 30, provide a checklist amendment 30, provide a checklist to help those deciding on whether to allow an assisted suicide to go to allow an assisted suicide to go ahead, whether the person has been led to the decision by an improper led to the decision by an improper type of motivation. Some of the types of motivation listed here are improper because it permitted.
They risk leading to a situation where people, under some circumstances are pressed or influenced into suicide as a way of solving social problems. And we've heard quite a bit about that today. And my extra subclause mentions families explicitly and adds to the idea of not being a burden on the family, that of not causing distress to. It is all too easy to imagine families pressing, influencing, perhaps coercing an ill person into suicide they do not genuinely desire by appeal to altruistic feelings, that they do not want to be a burden, that they do not want to cause distress, especially to those they most love.
Even worse, it is all too easy to imagine how in the
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dismal future of a world where this bill becomes law. Just.
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Just. So that I can properly respond to this. Which amendment in the group is this addressed to?
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group is this addressed to? 30 Mac. Thank you. 30 Z a
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30 Mac. Thank you. 30 Z a amending amendment 30. It's on page amending amendment 30. It's on page two of the six marshals. And just it is all too easy to imagine such appeals by a family to altruistic feelings. They do not want to cause distress. They do not want to be a burden, especially to those they most love. And in the world, in the dismal world where this bill has become law, such ways of thinking have become a social norm.
That is very easy, my Lords, to imagine my clause is designed to make that future a little less dismal by putting in an obstacle to this insidious form of coercion. To those the person in question may love, most.
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Amendment proposed as an amendment to amendment 30 before subparagraph I insert AI not wanting to cause distress or be a burden on their families. My Lords burden on their families. My Lords Lord Shinkwin is taking part remotely. I invite Lord Shinkwin to speak.
They risk leading to a situation where people, under some circumstances are pressed or influenced into suicide as a way of solving social problems. And we've heard quite a bit about that today. And my extra subclause mentions families explicitly and adds to the idea of not being a burden on the family, that of not causing distress to. It is all too easy to imagine families pressing, influencing, perhaps coercing an ill person into suicide they do not genuinely desire by appeal to altruistic feelings, that they do not want to be a burden, that they do not want to cause distress, especially to those they most love.
Even worse, it is all too easy to imagine how in the
**** Possible New Speaker ****
dismal future of a world where this bill becomes law. Just.
**** Possible New Speaker ****
Just. So that I can properly respond to this. Which amendment in the group is this addressed to?
**** Possible New Speaker ****
group is this addressed to? 30 Mac. Thank you. 30 Z a
**** Possible New Speaker ****
30 Mac. Thank you. 30 Z a amending amendment 30. It's on page amending amendment 30. It's on page two of the six marshals. And just it is all too easy to imagine such appeals by a family to altruistic feelings. They do not want to cause distress. They do not want to be a burden, especially to those they most love. And in the world, in the dismal world where this bill has become law, such ways of thinking have become a social norm.
That is very easy, my Lords, to imagine my clause is designed to make that future a little less dismal by putting in an obstacle to this insidious form of coercion. To those the person in question may love, most.
**** Possible New Speaker ****
Amendment proposed as an amendment to amendment 30 before subparagraph I insert AI not wanting to cause distress or be a burden on their families. My Lords burden on their families. My Lords Lord Shinkwin is taking part remotely. I invite Lord Shinkwin to speak.
14:52
Lord Shinkwin (Conservative)
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Lord Shinkwin (Conservative)
speak. >> My Lords, I rise to speak on two amendment 30, in the name of the noble Baroness O'Grady foster are. From C and the noble Lords were aware of Ballyholme and also support the other amendments in this group. My Lords, I first put on record that while I liked and respect the w Chief Whip as I now do, so many members of your Lordships' House, I am deeply disappointed that without any consultation and despite my having written to the Prime Minister, it has effectively been decided that is a member who has to leave the House by 3:00 pm on the Friday in order to catch my flight home.
I should not be enabled to contribute on an equal and non-discriminatory basis to scrutiny of a bill that would have a devastating impact on disabled people if it became law. Instead, I have had to fly home at very short notice so I can contribute, but unequally, without the ability to intervene, to debate remotely. My Lords, the Prime Minister never replied to my letter, so I assume this decision is his response. I have to say it doesn't reflect well on him or his great party, whom I respect.
His great party deserves better than being saddled with what everyone knows is ultimately the Prime Minister's Bill. My Lords, returning to amendment 30, I hope we can assume that all noble Lords accept the motivations listed in the Noble Bonuses Amendment and that they apply on the basis that the noble and learned Lords is not contested. That fact. I don't really understand why anyone would not want a doctor to rule the solely vital motivations out at the start, and for the bill to make absolutely clear that they must do so.
I'd be very grateful if, in his closing remarks, the noble and learned Lord, to make absolutely clear that not only does he accept the existence of these motivations, but also he accepts that the Bill should ensure they are addressed as set out in amendment 30 models. I can completely understand as to why it's difficult for us as an overwhelmingly non-disabled group of people, and thus a privileged and hugely unrepresentative body, to appreciate the extent to which these motivations go with the territory of being disabled in the UK in 2026, let's consider the motivation in this amendment a feeling like a burden.
Personal experience has taught me that society continues to view disabled people like me as a burden, rather than as a contributor with equal rights and such a perspective tolerates societal attitudes, which in turn inform our continued exclusion by default from employment. Just look at the disability employment gap. Access to services such as shops, pubs, bars and restaurants which non-disabled person assumes and takes for granted. And of course, from the policy making process here in Parliament.
My Lords, in case any. Adapts to, I just invite the noble Lords in the chamber to cast their eyes around the chamber and count how many members of your Lordships' House with lifelong lived experience of disability are present today, even if every member of such lived experience represents, it would still be the case that no more than 1% of the House of Lords could speak on the basis of such experience. And yet, as a sinfully, disproportionately non-disabled lawmaking body, we presume through this bill that we have a right effectively to pronounce on the fate of disabled people who the evidence from other jurisdictions show shows will be disproportionately affected by it.
So I thank the Baroness Whitaker amendment 30 because it gives us an opportunity. Following Rebecca Paul's blocked attempt to introduce a similar amendment at Report stage. In the other place, an opportunity to at least ensure that disability and other motivations are taken into account. And my Lords, I completely agree with those who argue that the reputation of your Lordships' House is at stake. It is, but not for the reason some would have us believe.
I believe that our reputation will be irretrievably damaged if we are seen to put completing the process of scrutiny of this Life and Death Bill ahead of our overriding duty to ensure it is scrutinised forensically, the two are quite distinct. Let us not be deceived that the time spent plotting amendment after amendment, including Rebecca Paul's, which I just mentioned, which mirrored this amendment in the other place, somehow amounts to evidence that the bill was subject to effective scrutiny before it came to us.
It does not. The very fact moguls that Baroness Prosser has had to table this amendment is proof that this bill is only now receiving proper scrutiny for the very first time here in your Lordships' House. My Lords, in conclusion, let us never forget that it's not just our reputation to perform our duty to scrutinise that hangs in the balance as a result of our consideration of this bill. The lives of people far more vulnerable than many of us will ever be hang in the balance to those who have no voice are depending on us.
My Lords. However, now the siren voices to rush our scrutiny, to subvert the transparency of the House, where, as my noble friend Lord Harper reminded us, every word spoken is on the public record, and to do grubby deals through some shady so-called shadow neutral channels process, we must not fail them. I trust that the noble and learned Lord realises that how he responds to this and other amendments will show whether he appreciates that failing.
I should not be enabled to contribute on an equal and non-discriminatory basis to scrutiny of a bill that would have a devastating impact on disabled people if it became law. Instead, I have had to fly home at very short notice so I can contribute, but unequally, without the ability to intervene, to debate remotely. My Lords, the Prime Minister never replied to my letter, so I assume this decision is his response. I have to say it doesn't reflect well on him or his great party, whom I respect.
His great party deserves better than being saddled with what everyone knows is ultimately the Prime Minister's Bill. My Lords, returning to amendment 30, I hope we can assume that all noble Lords accept the motivations listed in the Noble Bonuses Amendment and that they apply on the basis that the noble and learned Lords is not contested. That fact. I don't really understand why anyone would not want a doctor to rule the solely vital motivations out at the start, and for the bill to make absolutely clear that they must do so.
I'd be very grateful if, in his closing remarks, the noble and learned Lord, to make absolutely clear that not only does he accept the existence of these motivations, but also he accepts that the Bill should ensure they are addressed as set out in amendment 30 models. I can completely understand as to why it's difficult for us as an overwhelmingly non-disabled group of people, and thus a privileged and hugely unrepresentative body, to appreciate the extent to which these motivations go with the territory of being disabled in the UK in 2026, let's consider the motivation in this amendment a feeling like a burden.
Personal experience has taught me that society continues to view disabled people like me as a burden, rather than as a contributor with equal rights and such a perspective tolerates societal attitudes, which in turn inform our continued exclusion by default from employment. Just look at the disability employment gap. Access to services such as shops, pubs, bars and restaurants which non-disabled person assumes and takes for granted. And of course, from the policy making process here in Parliament.
My Lords, in case any. Adapts to, I just invite the noble Lords in the chamber to cast their eyes around the chamber and count how many members of your Lordships' House with lifelong lived experience of disability are present today, even if every member of such lived experience represents, it would still be the case that no more than 1% of the House of Lords could speak on the basis of such experience. And yet, as a sinfully, disproportionately non-disabled lawmaking body, we presume through this bill that we have a right effectively to pronounce on the fate of disabled people who the evidence from other jurisdictions show shows will be disproportionately affected by it.
So I thank the Baroness Whitaker amendment 30 because it gives us an opportunity. Following Rebecca Paul's blocked attempt to introduce a similar amendment at Report stage. In the other place, an opportunity to at least ensure that disability and other motivations are taken into account. And my Lords, I completely agree with those who argue that the reputation of your Lordships' House is at stake. It is, but not for the reason some would have us believe.
I believe that our reputation will be irretrievably damaged if we are seen to put completing the process of scrutiny of this Life and Death Bill ahead of our overriding duty to ensure it is scrutinised forensically, the two are quite distinct. Let us not be deceived that the time spent plotting amendment after amendment, including Rebecca Paul's, which I just mentioned, which mirrored this amendment in the other place, somehow amounts to evidence that the bill was subject to effective scrutiny before it came to us.
It does not. The very fact moguls that Baroness Prosser has had to table this amendment is proof that this bill is only now receiving proper scrutiny for the very first time here in your Lordships' House. My Lords, in conclusion, let us never forget that it's not just our reputation to perform our duty to scrutinise that hangs in the balance as a result of our consideration of this bill. The lives of people far more vulnerable than many of us will ever be hang in the balance to those who have no voice are depending on us.
My Lords. However, now the siren voices to rush our scrutiny, to subvert the transparency of the House, where, as my noble friend Lord Harper reminded us, every word spoken is on the public record, and to do grubby deals through some shady so-called shadow neutral channels process, we must not fail them. I trust that the noble and learned Lord realises that how he responds to this and other amendments will show whether he appreciates that failing.
15:01
Baroness Monckton of Dallington Forest (Conservative)
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Baroness Monckton of Dallington Forest (Conservative)
My Lords, all these amendments address motivation. One of the areas that the noble and learned areas that the noble and learned Lord Faulkner identified as a key area in his email sent to some noble Lords on Wednesday. This, therefore, feels an appropriate moment to make some short observations on general matters arising from that email. My amendments focus on risks to people with learning disabilities and autism, and also an amendment to exclude hospices who provide palliative care, which is, I believe, true assisted dying.
As I understand it, the emails proposal has two parts. First, that we move away from this house's established line by line scrutiny and condense 74 groups into 13 areas. And second, any concessions will be limited to those areas. My question is straightforward and has been asked in various ways by my noble friends Lord Harper, Lord Deben and Lord Blencathra. When will we see the detail? What amendments will the noble and learned Lord make to address each of the areas of concern he has identified as key in this bill? What are the terms of the noble and learned Lords proposals to address the concerns raised by the Delegated Powers and Constitution Committee? We are told that amendments will be brought forward at Report stage to address a limited number of these concerns.
Advertising independent advocates and some regulation making powers. But we have not been told which ones. There are now 42 such powers and a further seven Henry the Eighth powers, but no detail has been provided. Commitments to respond to these reports were made months ago. We need to know. The email identifies only three further changes the position of those aged 18 to 25, those deprived of their liberty through the Court of Protection and the role of multidisciplinary teams.
These are important, but they do not go very far, nor is there any reference to excluding hospices, as suggested in the email from the noble and learned Lady Baroness Butler-sloss. And finally, there is no mention at all of the serious concerns raised by five major Royal colleges. They were flagged as long ago as May. To conclude we need answers long before Report stage, so that all members of this House can properly consider what is proposed.
As I understand it, the emails proposal has two parts. First, that we move away from this house's established line by line scrutiny and condense 74 groups into 13 areas. And second, any concessions will be limited to those areas. My question is straightforward and has been asked in various ways by my noble friends Lord Harper, Lord Deben and Lord Blencathra. When will we see the detail? What amendments will the noble and learned Lord make to address each of the areas of concern he has identified as key in this bill? What are the terms of the noble and learned Lords proposals to address the concerns raised by the Delegated Powers and Constitution Committee? We are told that amendments will be brought forward at Report stage to address a limited number of these concerns.
Advertising independent advocates and some regulation making powers. But we have not been told which ones. There are now 42 such powers and a further seven Henry the Eighth powers, but no detail has been provided. Commitments to respond to these reports were made months ago. We need to know. The email identifies only three further changes the position of those aged 18 to 25, those deprived of their liberty through the Court of Protection and the role of multidisciplinary teams.
These are important, but they do not go very far, nor is there any reference to excluding hospices, as suggested in the email from the noble and learned Lady Baroness Butler-sloss. And finally, there is no mention at all of the serious concerns raised by five major Royal colleges. They were flagged as long ago as May. To conclude we need answers long before Report stage, so that all members of this House can properly consider what is proposed.
15:04
Baroness Fox of Buckley (Non-affiliated)
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Baroness Fox of Buckley (Non-affiliated)
Here. Here. >> I would like to really thank the noble Baroness, Lady Monckton of Darlington, for that excellently Darlington, for that excellently clear way of expressing some of the discomfort and what we would like to see, because I myself would be to see, because I myself would be much happier in feeling that I don't have to speak too much if I was getting reassurance and seeing on paper what exactly it was that was going to change some of the concerns or address some of the concerns, whereas at the moment we're not getting that.
And if I could just say to the noble Lord, Lord, we wish you were here, and that the fact that you aren't is a real shame for the quality of this debate. But that's just on that in, in, inside and outside of this house. Just to stress, I actually know plenty of people who support assisted dying support this bill in as much as they know the broad sense of what it's about. I try and avoid living in echo chambers, and whenever we discuss why they support the bill and potentially have a bit of an argument, they invariably say in a very humane and compassionate way that they support a bill like this because they think it will help people who are suffering.
And anyone who goes and says I'm suffering should be allowed to have access to assisted dying. It's assumed, therefore, that the motivation of illness induced suffering is at the heart of this bill. I mean, that's what most people think. And it's actually come up a lot in this chamber. But ironically, suffering isn't mentioned in the bill, and neither is there any reference to motivations in the way that one would imagine. And that bothers me, because the bill checks on capacity, it checks on prognosis, it checks on residents, but it never it doesn't enforce a check on motivation.
It seems to me to ask somebody who says that they want assisted dying, that you say why? And it's a crucial absence in the bill. And I hope that the noble and learned Lord might rectify that, or explain maybe exactly why the Bill doesn't think that doctors should ask, why do you want assisted dying? I think it would throw up a whole range of red flags in relation to coercion and things that people have mentioned. But anyway, I've added my name to two amendments in this group.
Amendment 30, in the name of Baroness Lister, so ably moved by the noble Lord Lord Weir of Ballyholme and amendment 56, in the name of Baroness Coffey. But to save time, I'm just going to concentrate on amendment 30, which is about in seeking to ensure that those with who are seeking assisted dying are not substantially motivated by a number of factors. And I'm going to just focus on two of these again, in terms of time, those not substantially motivated by wanting to be a burden on others or public services, and to ensure that people are not motivated by some mental disorder, including depression.
This week was the 29th anniversary of the death of my father, John Fox. 29 years ago. He died. He was only 66. He was diagnosed with cancer. He was given three months to live. He actually made it for four and a half. But when we were, he was told, obviously the whole family, we were all devastated as you would be. But the one thing that really shocked me and stays with me, really shocked me to the core was when I had that kind of very emotional initial father oldest daughter conversation was that my father kept apologising.
Now believe me, that was not usual. Our relationship. He didn't say sorry Claire, sorry Claire, lots and lots of times. So he he was so distraught. And what it was, was he was convinced that he'd be a burden on us. He was convinced that his daughters, that my mother, that looking after him, that we'd all have to miss work and all the rest of it. And he kept saying, I'm really, really sorry, all that distress. And, you know, he was worried how we'd cope.
And actually he didn't want to distress others, which was the point that the noble Lady Baroness Lawlor was making with her amendment to this amendment. But I also noticed that he kept saying sorry to the nurses and to the doctors and to everybody. He kept saying, I'm really sorry for taking up your time. I'm really sorry that you're having to give me so much attention. And there were stories in the media at the time about bed blocking, and he was a vociferous reader of newspapers, and I was hiding the newspapers because I didn't want I thought, he's going to say sorry even more now.
He's going to be convinced that he is taking up NHS resources. And we it took some time and determination to reassure him from the family, but I kept thinking afterwards if he'd been on his own or if he'd been in a care home or whatever, how sad that would have been. And to be honest, if a GP had suggested assisted death was a medical option in today's circumstances, then I think that my father would have said yes, but not because he wanted it, but because he felt a burden for the family and it wouldn't be the GP's fault.
It's an internal feeling of being a burden and that is not the same as choice. By the way, I was struck by a letter from the Lord Sumption in the Times, which I think is worth reflecting on. He says the current bill contains a number of provisions designed to ensure that patients are not pressured by another person into taking their own lives. This was something else. But anyway. So the real problem, however, is not the pressure applied by other persons. It is sumption which many old and ill people spontaneously make about the society around them.
They are afraid of being an emotion or a financial, emotional or financial burden. And I do think that's very important. So, oh, by the way, I'd better say that in the four and a half months that my father lived, we had some of the most meaningful time of our lives with him. It was through a veil of tears, but there was love, joy, reconciliation, conversations that would never have happened, and so on and so forth. So I wanted to to just say that it was a time that was important to him and us as a family, in a way that I can't really describe.
Another motivation I feel strongly we need to explore are those with a mental disorder. As many noble Lords have noted, a number of mental health conditions have suicidality as a feature of their disorder. And again, sorry to do the kind of personal stuff, but the first time I encountered that was as a young mental health community worker and I worked, you know, I met a young man who was bipolar, and he, myself and others worked very hard. Psychiatric medics and social workers, not just to prevent his suicide, but also using all of our skills and pharmacological and psychological interventions to alleviate that terrible black dog depression and the horror of the obsessive suicide ideation that that young man had.
I and I have to ask them, could this bill allow that such a suicidal person's depression induced desire for death and all of those who worked with him suddenly be expected to welcome this young man if he made the choice of an assisted death, of an assisted suicide, and then would be expected to not just welcome it, but say, oh, look, perfect exemplar of autonomy and choice. I therefore, was a little bit taken aback that the noble and learned Lord in in his summation of the last group on eligibility, said that in relation to those with the mental disorder, that it's their choice, and if they want it and they have capacity, then that's all right.
But can I just point out that anybody who wants to commit suicide, it's their choice and they want it. And some of us spend a lot of time saying, please don't. Not going, yippee, right. And so I just can't see what I would do in relation to that young man if he said, I've got terrible story, I've got terminal illness on in addition to my bipolar depression. And I want to take your have your support and help in, in assisted dying that I would say it's all perfectly fine.
Get on. I'm delighted for you. This shows that you are a free, autonomous individual. I'd say please don't, because the four and a half months that we had with my father would be the kind of quality time I would want to ensure that that young man had living every day of his life, even if he was terminally ill and dying, and to try and make sure that he wasn't depressed or suicidal during the time he lived. Yeah, yeah.
And if I could just say to the noble Lord, Lord, we wish you were here, and that the fact that you aren't is a real shame for the quality of this debate. But that's just on that in, in, inside and outside of this house. Just to stress, I actually know plenty of people who support assisted dying support this bill in as much as they know the broad sense of what it's about. I try and avoid living in echo chambers, and whenever we discuss why they support the bill and potentially have a bit of an argument, they invariably say in a very humane and compassionate way that they support a bill like this because they think it will help people who are suffering.
And anyone who goes and says I'm suffering should be allowed to have access to assisted dying. It's assumed, therefore, that the motivation of illness induced suffering is at the heart of this bill. I mean, that's what most people think. And it's actually come up a lot in this chamber. But ironically, suffering isn't mentioned in the bill, and neither is there any reference to motivations in the way that one would imagine. And that bothers me, because the bill checks on capacity, it checks on prognosis, it checks on residents, but it never it doesn't enforce a check on motivation.
It seems to me to ask somebody who says that they want assisted dying, that you say why? And it's a crucial absence in the bill. And I hope that the noble and learned Lord might rectify that, or explain maybe exactly why the Bill doesn't think that doctors should ask, why do you want assisted dying? I think it would throw up a whole range of red flags in relation to coercion and things that people have mentioned. But anyway, I've added my name to two amendments in this group.
Amendment 30, in the name of Baroness Lister, so ably moved by the noble Lord Lord Weir of Ballyholme and amendment 56, in the name of Baroness Coffey. But to save time, I'm just going to concentrate on amendment 30, which is about in seeking to ensure that those with who are seeking assisted dying are not substantially motivated by a number of factors. And I'm going to just focus on two of these again, in terms of time, those not substantially motivated by wanting to be a burden on others or public services, and to ensure that people are not motivated by some mental disorder, including depression.
This week was the 29th anniversary of the death of my father, John Fox. 29 years ago. He died. He was only 66. He was diagnosed with cancer. He was given three months to live. He actually made it for four and a half. But when we were, he was told, obviously the whole family, we were all devastated as you would be. But the one thing that really shocked me and stays with me, really shocked me to the core was when I had that kind of very emotional initial father oldest daughter conversation was that my father kept apologising.
Now believe me, that was not usual. Our relationship. He didn't say sorry Claire, sorry Claire, lots and lots of times. So he he was so distraught. And what it was, was he was convinced that he'd be a burden on us. He was convinced that his daughters, that my mother, that looking after him, that we'd all have to miss work and all the rest of it. And he kept saying, I'm really, really sorry, all that distress. And, you know, he was worried how we'd cope.
And actually he didn't want to distress others, which was the point that the noble Lady Baroness Lawlor was making with her amendment to this amendment. But I also noticed that he kept saying sorry to the nurses and to the doctors and to everybody. He kept saying, I'm really sorry for taking up your time. I'm really sorry that you're having to give me so much attention. And there were stories in the media at the time about bed blocking, and he was a vociferous reader of newspapers, and I was hiding the newspapers because I didn't want I thought, he's going to say sorry even more now.
He's going to be convinced that he is taking up NHS resources. And we it took some time and determination to reassure him from the family, but I kept thinking afterwards if he'd been on his own or if he'd been in a care home or whatever, how sad that would have been. And to be honest, if a GP had suggested assisted death was a medical option in today's circumstances, then I think that my father would have said yes, but not because he wanted it, but because he felt a burden for the family and it wouldn't be the GP's fault.
It's an internal feeling of being a burden and that is not the same as choice. By the way, I was struck by a letter from the Lord Sumption in the Times, which I think is worth reflecting on. He says the current bill contains a number of provisions designed to ensure that patients are not pressured by another person into taking their own lives. This was something else. But anyway. So the real problem, however, is not the pressure applied by other persons. It is sumption which many old and ill people spontaneously make about the society around them.
They are afraid of being an emotion or a financial, emotional or financial burden. And I do think that's very important. So, oh, by the way, I'd better say that in the four and a half months that my father lived, we had some of the most meaningful time of our lives with him. It was through a veil of tears, but there was love, joy, reconciliation, conversations that would never have happened, and so on and so forth. So I wanted to to just say that it was a time that was important to him and us as a family, in a way that I can't really describe.
Another motivation I feel strongly we need to explore are those with a mental disorder. As many noble Lords have noted, a number of mental health conditions have suicidality as a feature of their disorder. And again, sorry to do the kind of personal stuff, but the first time I encountered that was as a young mental health community worker and I worked, you know, I met a young man who was bipolar, and he, myself and others worked very hard. Psychiatric medics and social workers, not just to prevent his suicide, but also using all of our skills and pharmacological and psychological interventions to alleviate that terrible black dog depression and the horror of the obsessive suicide ideation that that young man had.
I and I have to ask them, could this bill allow that such a suicidal person's depression induced desire for death and all of those who worked with him suddenly be expected to welcome this young man if he made the choice of an assisted death, of an assisted suicide, and then would be expected to not just welcome it, but say, oh, look, perfect exemplar of autonomy and choice. I therefore, was a little bit taken aback that the noble and learned Lord in in his summation of the last group on eligibility, said that in relation to those with the mental disorder, that it's their choice, and if they want it and they have capacity, then that's all right.
But can I just point out that anybody who wants to commit suicide, it's their choice and they want it. And some of us spend a lot of time saying, please don't. Not going, yippee, right. And so I just can't see what I would do in relation to that young man if he said, I've got terrible story, I've got terminal illness on in addition to my bipolar depression. And I want to take your have your support and help in, in assisted dying that I would say it's all perfectly fine.
Get on. I'm delighted for you. This shows that you are a free, autonomous individual. I'd say please don't, because the four and a half months that we had with my father would be the kind of quality time I would want to ensure that that young man had living every day of his life, even if he was terminally ill and dying, and to try and make sure that he wasn't depressed or suicidal during the time he lived. Yeah, yeah.
15:13
Lord Empey (Ulster Unionist Party)
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Lord Empey (Ulster Unionist Party)
Lord Fowler I was associated. >> Lord Fowler I was associated. With some of these amendments and I wouldn't I don't think we want to wouldn't I don't think we want to get completely hung up on the minutiae of each, each, each particular line, because there are variations that one could, could add. And I guess when one is drafting a bill, there are choices to be made, and language can be better if one gets professional assistance, etc. but the fundamental point is, as been outlined by Lord Weir and Baroness Fox, if anybody here has, and I know some have represented a an inner city, working class constituency.
The approach that a lot of people have towards the medical profession, doctors and so on is very different, perhaps to the approach we have if we want medical assistance. I guess most people in this room can pay for it if they if they so wish. That is not an option that other people have. And my anxiety about the absence of a motivational test is we encourage us representatives, people to avail of the health service. We encourage them not to smoke.
We encourage them to go and get tested. But what we're going to create, in my view, if we're not very careful, is we will create a barrier to people going to seek medical assistance when they shoot, and it will be translated at street level. I'm not going to see Doctor Death. He'll sign me off. And that is the sort of thing you will get in a housing estate somewhere. That's how people will view all of this. And it seems to me that in order to avoid that, that we have a magnifying glass is turned on.
The motivation. Why is this person here at this time? Because I want to see people going to the health service at an earlier time, even if they're very unwell. But if they have the fear that they'll be signed off in their terms for for death, then it will be a barrier. So I think it's important, irrespective of the minutia of these proposals, that we have the concept in our minds as to how people will see all of this, how it will play out at street level.
It's all very well in the tea room here. We can have our intellectual exchanges, but that's not what happens on the ground. It's a very, very different motivation. People look at it in a different way and as was pointed out at Second Reading by quite a number of people, the family unit is not always the soft cell welcoming environment that we all would like to see. It can be brutal, it can be bitter, it can be vicious and pressure can it be applied.
You only have to take people in economic difficulties, young marriage with a family, big mortgage. And there's granny sitting in a half million pound house and you can see straight away what happens. So I think the noble and learned Lord Moore perhaps needs to address this, and I apologise to him, perhaps for the analogy of Stonewall Jackson I seem to have. He is the same age as Stonewall Jackson. The only difference? He's had a tougher paper round.
The approach that a lot of people have towards the medical profession, doctors and so on is very different, perhaps to the approach we have if we want medical assistance. I guess most people in this room can pay for it if they if they so wish. That is not an option that other people have. And my anxiety about the absence of a motivational test is we encourage us representatives, people to avail of the health service. We encourage them not to smoke.
We encourage them to go and get tested. But what we're going to create, in my view, if we're not very careful, is we will create a barrier to people going to seek medical assistance when they shoot, and it will be translated at street level. I'm not going to see Doctor Death. He'll sign me off. And that is the sort of thing you will get in a housing estate somewhere. That's how people will view all of this. And it seems to me that in order to avoid that, that we have a magnifying glass is turned on.
The motivation. Why is this person here at this time? Because I want to see people going to the health service at an earlier time, even if they're very unwell. But if they have the fear that they'll be signed off in their terms for for death, then it will be a barrier. So I think it's important, irrespective of the minutia of these proposals, that we have the concept in our minds as to how people will see all of this, how it will play out at street level.
It's all very well in the tea room here. We can have our intellectual exchanges, but that's not what happens on the ground. It's a very, very different motivation. People look at it in a different way and as was pointed out at Second Reading by quite a number of people, the family unit is not always the soft cell welcoming environment that we all would like to see. It can be brutal, it can be bitter, it can be vicious and pressure can it be applied.
You only have to take people in economic difficulties, young marriage with a family, big mortgage. And there's granny sitting in a half million pound house and you can see straight away what happens. So I think the noble and learned Lord Moore perhaps needs to address this, and I apologise to him, perhaps for the analogy of Stonewall Jackson I seem to have. He is the same age as Stonewall Jackson. The only difference? He's had a tougher paper round.
15:17
Baroness Whitaker (Labour)
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Baroness Whitaker (Labour)
In connection with amendment 30. Could I just say, in contradistinction to some of the contradistinction to some of the speeches? Mrs. If I were interested in having an assisted death, I in having an assisted death, I would most definitely. Part of the reason why I would not want to be a burden on my family. I told my children this. They perfectly understand and I trust them to carry out my wishes. If I don't have any more pleasure in living, I must particularly don't want to add to that the burden on my family.
It seems to me that is one of the perfectly good reasons to have a decision.
It seems to me that is one of the perfectly good reasons to have a decision.
15:18
Lord Harper (Conservative)
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Lord Harper (Conservative)
Of course. >> Of course. >> My Lords, if I can touch on amendment 30, 56 and 57, the latter amendment 30, 56 and 57, the latter two on which I've attached my name. But before I launch into my arguments, if I may say, it's a delight for me to see the noble Lady Baroness Campbell of Surbiton in her place. After an unavoidable absence. She and I worked very closely when I was Shadow Minister for disabled people. I found her insight and her lived experience, and her willingness to spend time with me on improving my knowledge of disability.
Extraordinarily helpful, and I was very grateful to her for the time that she was willing to spend. I'm very pleased to see her here in this important debate. The latter contribution, I thought was very helpful, but it kind of goes to the heart of at two things. I think what this bill is about, and also whether the promoters of the bill are being entirely straightforward about what it's about. So the bill is called the terminally ill adults end of life bill.
And the primary requirement is that you have a terminally ill diagnosis. But the arguments that are made for it are almost entirely around preventing people from suffering or having physical pain. But as has been pointed out, that's currently not anywhere a requirement in the legislation. And then sometimes supporters of the bill don't actually make that argument, and they make the argument which, for example, that the noble Lady Baroness Jay of Paddington did this morning and focus on autonomy, or as the noble and learned Lord Doyle Falconer did in response to my challenging him on someone's financial circumstances, on choice.
Now, I think we should be very straightforward if we're if the promoters of this bill are making an argument that it's entirely about somebody's choice, then they should just be very straightforward about it. Don't make any arguments about people have got to be suffering, and it's about relieving suffering, which is actually the thing, as my noble friend Lady Fox said, is the thing that compassionate and kind people think is the motivation for this legislation if they think it should be open to anybody, regardless of the motivation, then they should say so.
And it's very helpful when when some of them are prepared to say that because it becomes more straightforward about what this is about. But that goes to the heart of why many of us have concerns. Because if it becomes and we know, we know this is going to get challenged in the courts and it will get expanded. That's what's happened everywhere else. And as I said earlier, the Minister keeps telling us about the human rights provisions that will be used, if not to change what's on the face of the bill, absolutely used to widen and challenge the regulations that are made under this bill, which is why so many of us want more of the safeguards.
On the face of it, not left to Statutory Instruments, which we know judges are very happy to change and strike down, that it'll get expanded. And that's why it's important in the clauses that we put down about the motivations. Because if it's about choice, then it has to be a real choice. And for people to have genuine choices, they can't be being forced by circumstance into making them. And the reason why I was exercised with the noble and learned Lord, Lord Falconer earlier was if somebody has enormous pressures upon them, whether they're financial or housing or feeling like a burden, or, as has been said.
By other people, feeling like they wish, for example, financial resources to go to their families. Now, some people think those are perfectly fine reasons that somebody should have an assisted suicide, but I do not. And I don't think most members of the public think that that is why somebody should seek to kill themselves or have others kill themselves, help kill themselves. And we should just be honest about it, if that's what you think. If you think that, that's fine, say so.
See whether that argument carries water. That isn't the argument that people are making. It's about whether you're suffering. If that's what you think is the critical matter, then put it on the face of the bill. Make it so that you can only get a distance with your suicide. If you are suffering, you are in pain. And that's the reason for you seeking that course of action. If it's one of these other things, then we should rule it out. And if you're not prepared to rule it out, then it becomes a bit clearer about what this is really about.
And that goes to the point that my noble friend Lord Shinkwin made, and why so many of us have concerns. And the remarks that I made at Second Reading are absolutely highlighted by these amendments that I've referred to, and why there is not a single organisation of or for disabled people that supports this legislation, and that's because they are concerned that for two, two things, they're concerned, as my noble friend Lord Shinkwin said, that because so many disabled people feel are made to feel that they're a burden or have because of the cost of their disability, financial pressures, housing pressures, pressures that others don't have that they will feel forced into seeking an assisted suicide when that isn't really what they want.
That's one reason they're concerned. The second reason they're concerned is because if society decides that it's OK for you to get help in ending your life because you feel like you're a burden, or because you don't want to cause problems for other people, that fundamentally changes how society treats and looks after disabled people. Instead of wanting them to live well and have great lives, and being prepared to find the resources to do so, we would rather they weren't here.
That is the message that they're getting. And these groups of amendments are about making it very clear that this legislation is about one thing, which is about alleviating suffering and pain, and it's not about these other things. And that's why I strongly support these amendments. And I hope that in his response, the noble and learned Lord Filkin will recognise that those are the reasons why so many people take a different view than the one he does. But if he actually limited the provisions of this bill to those people that were in pain or suffering, it would reassure the many disabled people in this country who are terrified that the passage of this legislation will fundamentally alter their lives for the worse.
Extraordinarily helpful, and I was very grateful to her for the time that she was willing to spend. I'm very pleased to see her here in this important debate. The latter contribution, I thought was very helpful, but it kind of goes to the heart of at two things. I think what this bill is about, and also whether the promoters of the bill are being entirely straightforward about what it's about. So the bill is called the terminally ill adults end of life bill.
And the primary requirement is that you have a terminally ill diagnosis. But the arguments that are made for it are almost entirely around preventing people from suffering or having physical pain. But as has been pointed out, that's currently not anywhere a requirement in the legislation. And then sometimes supporters of the bill don't actually make that argument, and they make the argument which, for example, that the noble Lady Baroness Jay of Paddington did this morning and focus on autonomy, or as the noble and learned Lord Doyle Falconer did in response to my challenging him on someone's financial circumstances, on choice.
Now, I think we should be very straightforward if we're if the promoters of this bill are making an argument that it's entirely about somebody's choice, then they should just be very straightforward about it. Don't make any arguments about people have got to be suffering, and it's about relieving suffering, which is actually the thing, as my noble friend Lady Fox said, is the thing that compassionate and kind people think is the motivation for this legislation if they think it should be open to anybody, regardless of the motivation, then they should say so.
And it's very helpful when when some of them are prepared to say that because it becomes more straightforward about what this is about. But that goes to the heart of why many of us have concerns. Because if it becomes and we know, we know this is going to get challenged in the courts and it will get expanded. That's what's happened everywhere else. And as I said earlier, the Minister keeps telling us about the human rights provisions that will be used, if not to change what's on the face of the bill, absolutely used to widen and challenge the regulations that are made under this bill, which is why so many of us want more of the safeguards.
On the face of it, not left to Statutory Instruments, which we know judges are very happy to change and strike down, that it'll get expanded. And that's why it's important in the clauses that we put down about the motivations. Because if it's about choice, then it has to be a real choice. And for people to have genuine choices, they can't be being forced by circumstance into making them. And the reason why I was exercised with the noble and learned Lord, Lord Falconer earlier was if somebody has enormous pressures upon them, whether they're financial or housing or feeling like a burden, or, as has been said.
By other people, feeling like they wish, for example, financial resources to go to their families. Now, some people think those are perfectly fine reasons that somebody should have an assisted suicide, but I do not. And I don't think most members of the public think that that is why somebody should seek to kill themselves or have others kill themselves, help kill themselves. And we should just be honest about it, if that's what you think. If you think that, that's fine, say so.
See whether that argument carries water. That isn't the argument that people are making. It's about whether you're suffering. If that's what you think is the critical matter, then put it on the face of the bill. Make it so that you can only get a distance with your suicide. If you are suffering, you are in pain. And that's the reason for you seeking that course of action. If it's one of these other things, then we should rule it out. And if you're not prepared to rule it out, then it becomes a bit clearer about what this is really about.
And that goes to the point that my noble friend Lord Shinkwin made, and why so many of us have concerns. And the remarks that I made at Second Reading are absolutely highlighted by these amendments that I've referred to, and why there is not a single organisation of or for disabled people that supports this legislation, and that's because they are concerned that for two, two things, they're concerned, as my noble friend Lord Shinkwin said, that because so many disabled people feel are made to feel that they're a burden or have because of the cost of their disability, financial pressures, housing pressures, pressures that others don't have that they will feel forced into seeking an assisted suicide when that isn't really what they want.
That's one reason they're concerned. The second reason they're concerned is because if society decides that it's OK for you to get help in ending your life because you feel like you're a burden, or because you don't want to cause problems for other people, that fundamentally changes how society treats and looks after disabled people. Instead of wanting them to live well and have great lives, and being prepared to find the resources to do so, we would rather they weren't here.
That is the message that they're getting. And these groups of amendments are about making it very clear that this legislation is about one thing, which is about alleviating suffering and pain, and it's not about these other things. And that's why I strongly support these amendments. And I hope that in his response, the noble and learned Lord Filkin will recognise that those are the reasons why so many people take a different view than the one he does. But if he actually limited the provisions of this bill to those people that were in pain or suffering, it would reassure the many disabled people in this country who are terrified that the passage of this legislation will fundamentally alter their lives for the worse.
15:25
Baroness Grey-Thompson (Crossbench)
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Baroness Grey-Thompson (Crossbench)
And. It's great. >> The noble Lord, Lord Harper. >> Who I think when he was the Minister, we had many interesting discussions, possibly not as discussions, possibly not as collaborative as that with my noble friend Baroness Campbell, but this group is talking about motivation, and I'm sure we're going to be told it's people with terminal condition. They're dying anyway. But I do think we have to understand there may be a number of other motivations that are part of this.
And the noble Lord, Lord Harper, as a non-disabled person, I assume, highlights many of the reasons that disabled people are very worried about this bill. Now, we look at other jurisdictions around the world and Oregon and Washington and Belgium, Holland. But in one of the newer jurisdictions that has changed the law Australia. They have surprisingly high figures on the number of people who request assisted dying because they feel a burden in Western Australia in 20 2223, 35.3% of people requested assisted death because they felt a burden in 2324, that figure was 32.2%.
And I think we have to understand that unfortunately in the UK at the moment, the health and social care system for many people is broken. And and actually, you know, the fact you might not be able to get good social care, you might not be able to get a job, you might not be able to get access to work. All these things will, you know, add layer on layer to a reason that someone may request it. Now, I'm told it's not for disabled people, but I'm not suggesting we draw up a list of, you know, actually every single condition of people who would qualify or not.
And I've spoken about it many times in the chamber about how people just assumed that I would want to change the law because someone with my condition would probably rather be dead than alive. My condition, spina bifida. I would assume that I would not be eligible for an assisted death because of that, but if I got a pressure sore, I would very easily and very quickly fit into that six month diagnosis. I've lost many friends through pressure sores. One of them, a friend I was in school with who had a pressure sore on the base of her spine.
She had spina bifida, and one of the problems with a developing so rapidly is she couldn't feel it. She was paralysed. She didn't realise she had a pressure sore. The way it was discovered was by the smell. And as soon as it was discovered, the number of people around who started talking very, very differently about that young woman's life, about how, you know, basically she would be better off dead because it was never going to heal. And this is why disabled people are so fearful, because if the law changes, disabled people would very easily with a doctor, two doctors, whatever the assessment process.
And I don't believe the assessment process in the bill at the moment is is anywhere near strong enough. There would be ablest doctors who would very quickly think and agree that, you know, we'd be better off, you know, not being around. Well, if we look at other jurisdictions and looking at the number of people and again, why they choose to end their lives. And I think when I talk to people outside, people assume that we are talking about cancer and leukaemia. We're not talking about lots of other conditions in Belgium.
Their official figures from last year show that 54% of people who request an assisted death have cancer, but 26.8% have poly pathology. Now, I'm not a medic, so that sounds like an interesting combination of conditions. Actually, what's included in those figures is being tired of life. So this comes back to the debate we had in the previous group about the equality impact assessment. That is based on the first ten years of Oregon, where the numbers were very low because there was no social media and people didn't know about it.
And I think this provides more evidence of why we need to reconsider, or the government needs to reconsider looking at the impact assessment to actually understand the numbers that might be involved. And I think noble Lord Harper is absolutely right. We need to be honest about what we're doing here and not wrapping it up in in euphemisms and easy soundbites, which, you know, I've said this consistently. It's you know, you do an interview about this bill. It's not easy to, you know, in four minutes to lay down every single reason that, you know, a number of people have many, many concerns with this bill.
So, you know, tide of life is is a real worry for me. And I absolutely understand why people don't want to be a burden for the family, but there are people who will feel a burden and will feel that they have no other choice. And I think another condition we need to be thinking about is, is people who've had strokes. My husband had a stroke at the back end of 2020. In Belgium, 3.2% of people request assisted suicide because they've had a stroke.
And again, that is not something that the general public probably think would be a motivation. But behind having it and who can forget that? And this was reported in the times on the 9th of January last year, Luke Van Gorp was arguing that it was important to expand the euthanasia laws to prevent crisis in social care. You know, if this bill passes, how many and the noble and the Lord has has mentioned in previous debates apologies to the chamber. I can't remember which date, but, you know, there's no reason why, you know, we can't tie the hands of future parliaments.
There's no reason, if this bill passes, why we couldn't have a debate in this chamber about saving social health and social care, about saving the National Health Service, or, you know, taking into account other motivations. So, my Lords, I think this is a really important group of amendments. I do think we need a lot of honesty about what we're trying to do here. And like, again, I'm quoting the noble Lord. Apologies. Sorry. Is that an intervention? Sorry. Thank you.
Apologies. I thought it was an intervention. I appear to be quoting the noble Lord, Lord Harper, quite a lot today. That is not a scenario I possibly ever thought would happen. But I would like to join him in very, very much welcoming my noble friend Baroness Campbell back to the chamber today. Her expertise not in this bill is paramount, and as well, I wouldn't dream to count how many disabled people are in this chamber. But there's two wheelchair users.
I'm very, very much looking forward to
**** Possible New Speaker ****
the contribution that she will make on this bill. I hope the.
**** Possible New Speaker ****
I hope the. noble Lord will forgive me. For
**** Possible New Speaker ****
noble Lord will forgive me. For intervening in this. Stage on the road in a hurry, but I haven't got my name on any of the amendments. Yes, Netherlands will know that
And the noble Lord, Lord Harper, as a non-disabled person, I assume, highlights many of the reasons that disabled people are very worried about this bill. Now, we look at other jurisdictions around the world and Oregon and Washington and Belgium, Holland. But in one of the newer jurisdictions that has changed the law Australia. They have surprisingly high figures on the number of people who request assisted dying because they feel a burden in Western Australia in 20 2223, 35.3% of people requested assisted death because they felt a burden in 2324, that figure was 32.2%.
And I think we have to understand that unfortunately in the UK at the moment, the health and social care system for many people is broken. And and actually, you know, the fact you might not be able to get good social care, you might not be able to get a job, you might not be able to get access to work. All these things will, you know, add layer on layer to a reason that someone may request it. Now, I'm told it's not for disabled people, but I'm not suggesting we draw up a list of, you know, actually every single condition of people who would qualify or not.
And I've spoken about it many times in the chamber about how people just assumed that I would want to change the law because someone with my condition would probably rather be dead than alive. My condition, spina bifida. I would assume that I would not be eligible for an assisted death because of that, but if I got a pressure sore, I would very easily and very quickly fit into that six month diagnosis. I've lost many friends through pressure sores. One of them, a friend I was in school with who had a pressure sore on the base of her spine.
She had spina bifida, and one of the problems with a developing so rapidly is she couldn't feel it. She was paralysed. She didn't realise she had a pressure sore. The way it was discovered was by the smell. And as soon as it was discovered, the number of people around who started talking very, very differently about that young woman's life, about how, you know, basically she would be better off dead because it was never going to heal. And this is why disabled people are so fearful, because if the law changes, disabled people would very easily with a doctor, two doctors, whatever the assessment process.
And I don't believe the assessment process in the bill at the moment is is anywhere near strong enough. There would be ablest doctors who would very quickly think and agree that, you know, we'd be better off, you know, not being around. Well, if we look at other jurisdictions and looking at the number of people and again, why they choose to end their lives. And I think when I talk to people outside, people assume that we are talking about cancer and leukaemia. We're not talking about lots of other conditions in Belgium.
Their official figures from last year show that 54% of people who request an assisted death have cancer, but 26.8% have poly pathology. Now, I'm not a medic, so that sounds like an interesting combination of conditions. Actually, what's included in those figures is being tired of life. So this comes back to the debate we had in the previous group about the equality impact assessment. That is based on the first ten years of Oregon, where the numbers were very low because there was no social media and people didn't know about it.
And I think this provides more evidence of why we need to reconsider, or the government needs to reconsider looking at the impact assessment to actually understand the numbers that might be involved. And I think noble Lord Harper is absolutely right. We need to be honest about what we're doing here and not wrapping it up in in euphemisms and easy soundbites, which, you know, I've said this consistently. It's you know, you do an interview about this bill. It's not easy to, you know, in four minutes to lay down every single reason that, you know, a number of people have many, many concerns with this bill.
So, you know, tide of life is is a real worry for me. And I absolutely understand why people don't want to be a burden for the family, but there are people who will feel a burden and will feel that they have no other choice. And I think another condition we need to be thinking about is, is people who've had strokes. My husband had a stroke at the back end of 2020. In Belgium, 3.2% of people request assisted suicide because they've had a stroke.
And again, that is not something that the general public probably think would be a motivation. But behind having it and who can forget that? And this was reported in the times on the 9th of January last year, Luke Van Gorp was arguing that it was important to expand the euthanasia laws to prevent crisis in social care. You know, if this bill passes, how many and the noble and the Lord has has mentioned in previous debates apologies to the chamber. I can't remember which date, but, you know, there's no reason why, you know, we can't tie the hands of future parliaments.
There's no reason, if this bill passes, why we couldn't have a debate in this chamber about saving social health and social care, about saving the National Health Service, or, you know, taking into account other motivations. So, my Lords, I think this is a really important group of amendments. I do think we need a lot of honesty about what we're trying to do here. And like, again, I'm quoting the noble Lord. Apologies. Sorry. Is that an intervention? Sorry. Thank you.
Apologies. I thought it was an intervention. I appear to be quoting the noble Lord, Lord Harper, quite a lot today. That is not a scenario I possibly ever thought would happen. But I would like to join him in very, very much welcoming my noble friend Baroness Campbell back to the chamber today. Her expertise not in this bill is paramount, and as well, I wouldn't dream to count how many disabled people are in this chamber. But there's two wheelchair users.
I'm very, very much looking forward to
**** Possible New Speaker ****
the contribution that she will make on this bill. I hope the.
**** Possible New Speaker ****
I hope the. noble Lord will forgive me. For
**** Possible New Speaker ****
noble Lord will forgive me. For intervening in this. Stage on the road in a hurry, but I haven't got my name on any of the amendments. Yes, Netherlands will know that
15:33
Baroness Campbell of Surbiton (Crossbench)
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Baroness Campbell of Surbiton (Crossbench)
I've been away for over six months because of an accident on the high seas. When I found myself trolled across the room by a wave, I broke my leg, I my shoulder and had all sorts of internal injuries and spent the next six weeks in Thomas's hospital instead of here talking about this bill. I don't know quite where I would rather be, but I I'm here now and I hope you will forgive my late interventions.
Having not been at Second Reading, but I'm pleased to be back and thank you for your welcome. It's been very, very nice. I just want to say something very briefly about burden and motivation. I think we all know that burden is one of the primary reasons for people to seek an assisted death, not only in the conversations that I've had here, but we know that it is a primary reason throughout the world. Burden is real, and it is why in another life I set up the organisation, the National Centre for Independent Living, because I realise that there are hundreds of disabled people living in institutions or in their mom and Dan's back room, basically just surviving, not living.
And I also campaigned for an Oracle, the Direct Payments Act, to which the noble Lord Lord Harper will be very familiar with, and that was an act that would allow severely disabled people to employ their own personal assistants, so that they were no longer a burden on their families. No one wants to rely on their families or their spouses. I certainly don't want to rely on my husband to get me up in the morning and to put me to bed at night.
I am his wife. I am not, he is my camera. He is my husband. And that's a good relationship. But you know, there's an answer to burden and that is good social care support. It's good infrastructure of technology that allows you to be independent, to not be a burden on others and to to begin and to post your life as you would want it to be. I know this because I've helped hundreds of disabled people do it.
Some of them who had progressive conditions would not live long, but the life they had during those years. Would give us good months and good weeks. Now, I'm not saying it's always the answer, but we must surely find out from anybody who is asking for their to be ended. What are your reasons? Is it because you don't have adequate social care? Is it because you can't get out of your house because nobody's come to build your brand? For the local authority? These small things can make a difference between disabled people, people with terminal illnesses, people with progressive conditions.
This makes a difference between them wanting to die and them not wishing to die. I know this, they've told it to me how many disabled people come up to me and say, change, do you know I love my independent living? I love my direct payments. But if that was taken away and I was forced to go into an institution against my will, I don't know what I would do. I'd probably ask for an assistant there. They weren't making a joke.
It's the truth. And I think we should all think about the issue of motivation. And that is why I support this suite of amendments, because I think to date we haven't you.
Having not been at Second Reading, but I'm pleased to be back and thank you for your welcome. It's been very, very nice. I just want to say something very briefly about burden and motivation. I think we all know that burden is one of the primary reasons for people to seek an assisted death, not only in the conversations that I've had here, but we know that it is a primary reason throughout the world. Burden is real, and it is why in another life I set up the organisation, the National Centre for Independent Living, because I realise that there are hundreds of disabled people living in institutions or in their mom and Dan's back room, basically just surviving, not living.
And I also campaigned for an Oracle, the Direct Payments Act, to which the noble Lord Lord Harper will be very familiar with, and that was an act that would allow severely disabled people to employ their own personal assistants, so that they were no longer a burden on their families. No one wants to rely on their families or their spouses. I certainly don't want to rely on my husband to get me up in the morning and to put me to bed at night.
I am his wife. I am not, he is my camera. He is my husband. And that's a good relationship. But you know, there's an answer to burden and that is good social care support. It's good infrastructure of technology that allows you to be independent, to not be a burden on others and to to begin and to post your life as you would want it to be. I know this because I've helped hundreds of disabled people do it.
Some of them who had progressive conditions would not live long, but the life they had during those years. Would give us good months and good weeks. Now, I'm not saying it's always the answer, but we must surely find out from anybody who is asking for their to be ended. What are your reasons? Is it because you don't have adequate social care? Is it because you can't get out of your house because nobody's come to build your brand? For the local authority? These small things can make a difference between disabled people, people with terminal illnesses, people with progressive conditions.
This makes a difference between them wanting to die and them not wishing to die. I know this, they've told it to me how many disabled people come up to me and say, change, do you know I love my independent living? I love my direct payments. But if that was taken away and I was forced to go into an institution against my will, I don't know what I would do. I'd probably ask for an assistant there. They weren't making a joke.
It's the truth. And I think we should all think about the issue of motivation. And that is why I support this suite of amendments, because I think to date we haven't you.
15:37
Baroness Royall of Blaisdon (Labour)
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Baroness Royall of Blaisdon (Labour)
Yeah. >> Yeah. >> I too warmly welcome the return of my noble friend Baroness Campbell, the most extraordinary person and advocate for disabled people and so many more in our people and so many more in our societies. I would just remind the House that in all of these discussions about burdens, about people who've had stroke, and I'm terribly sorry that your your husband had a stroke, but we are talking about six months for somebody who has been diagnosed with a terminal illness.
And I think we should reflect on that and remember that in all of our deliberations on this bill.
And I think we should reflect on that and remember that in all of our deliberations on this bill.
15:38
Lord Markham (Conservative)
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Lord Markham (Conservative)
Yeah, yeah. >> If I may just build on that, because the noble Lady is quite right. It is six months. And this right. It is six months. And this is about choice. It is absolutely about choice. And behind that choice is the person's motivation. And pain of course, is a very valid reason. But it's not the only reason. And again, research has shown this for lots of people. It's about loss of dignity. For others, it's about a loss of control of bodily functions.
For others, it's about losing autonomy. It's about being less able to engage in enjoyable activities. Yes, sometimes it is about feeling a burden. Sometimes it is about inadequate, inadequate pain controls. And sometimes it is financial concerns as well. But I think what that shows is it's a complex area. And actually on average people gave 3 or 4 different reasons, different motivations. And for me, it's not for us to to assess what is a valid or not is a valid motivation.
Absolutely. We should be considering that there's no coercion in, in, in, in those decisions. But beyond that it is absolutely about choice. And recognising choice is about having your own motivations behind this. And it is not for us to decide whether those are valid or not.
For others, it's about losing autonomy. It's about being less able to engage in enjoyable activities. Yes, sometimes it is about feeling a burden. Sometimes it is about inadequate, inadequate pain controls. And sometimes it is financial concerns as well. But I think what that shows is it's a complex area. And actually on average people gave 3 or 4 different reasons, different motivations. And for me, it's not for us to to assess what is a valid or not is a valid motivation.
Absolutely. We should be considering that there's no coercion in, in, in, in those decisions. But beyond that it is absolutely about choice. And recognising choice is about having your own motivations behind this. And it is not for us to decide whether those are valid or not.
15:40
The Lord Bishop of Chester (Bishops)
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The Lord Bishop of Chester (Bishops)
My Lords, this is an important and moving debate, and it's an and moving debate, and it's an honour to speak in it and to follow some of the previous contributions. These amendments highlight the fact that eligibility is not the same as motivation, and I agree with almost everything that's been said before me. I won't delay the house by repeating those points, but there are two things that I want to bring to your Lordships attention. One is to remind you of points made by my friend, the prelate, the Bishop of Gloucester, that things in this bill, if it is passed, will apply to those who are in our prison system, for whom there will be very particular motivations, which we need to make sure can be fairly applied to them.
But the other actually is that if this bill is passed, we have a duty of care for those who survive the deceased. Some of us have had the privilege of sitting with many, many bereaved families. And I have to say, in my experience, there is almost not a death which doesn't leave a huge wake of pain in behind it. Indeed, the 1 or 2 where that hasn't been the case have been some of the most distressing pastoral situations I have ever dealt with, and where there has been an element of choice to that dying, the what if's, the if only's, the longings are deeply profound scars which live with people for a long period of time.
And in passing this bill, if we do pass it, we have a responsibility of care, not just to those who are considering their own death, but those who are left behind, those who are caring, those who long to do everything they can in order to be with, to support and to enable those whom they love deeply, to carry on living and to do so well.
But the other actually is that if this bill is passed, we have a duty of care for those who survive the deceased. Some of us have had the privilege of sitting with many, many bereaved families. And I have to say, in my experience, there is almost not a death which doesn't leave a huge wake of pain in behind it. Indeed, the 1 or 2 where that hasn't been the case have been some of the most distressing pastoral situations I have ever dealt with, and where there has been an element of choice to that dying, the what if's, the if only's, the longings are deeply profound scars which live with people for a long period of time.
And in passing this bill, if we do pass it, we have a responsibility of care, not just to those who are considering their own death, but those who are left behind, those who are caring, those who long to do everything they can in order to be with, to support and to enable those whom they love deeply, to carry on living and to do so well.
15:41
Baroness Smith of Newnham (Liberal Democrat)
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Baroness Smith of Newnham (Liberal Democrat)
My Lords. Thank you. >> I rise briefly to speak to this group of amendments, and in particular to amendment 30. I know particular to amendment 30. I know from listening to previous groups that the noble Lady, the Minister, will feel the need to explain that amendment 30, as currently drafted, is not fit for purpose and will not help the bill. But I think at Committee stage, the important thing is to flag up the key issues and to see whether we can put forward proposals.
And I realise this is going to be a very tall order, but somehow to put forward wording, suggestions, ideas that might be acceptable to the sponsor of the bill, because there are a set of issues in amendment 30 that I think warrant careful listening and attention. It is not sufficient to say this bill is about providing choice, because as the noble Lord, Lord MP said, most members of your Lordships House do have the have many advantages that would allow us to get specialist treatment, would allow us to get the opportunities of second opinions, possibly of having social care that we might need.
Other people don't have that. And therefore, while it might be appropriate to say, well, at the end of life, I don't want to be a burden, I want not to be a burden to my family. I should have an assisted death. But that's fine. If the choice is about an individual who has all of their faculties and all the resources available to them saying, this is my choice, I want to do that. But what about the person who says, actually, I think I need an assisted death because there's nobody to care for me, because social care in my area is not adequate, the state cannot afford to fund it, or the palliative care is not available.
And the answers to the group at the end of last week about palliative care started off a series of what I think are quite chilling responses that palliative care isn't equal across the country, but we can't wait until we get something like equality before this legislation should come in. I think that's what I heard the noble and learned Lord say at the end of last week. But, my Lords, why should some people be put in that invidious position of maybe not really wanting an assisted death, but feeling there is no palliative or inadequate palliative care available to them, that social care isn't available to them when other people wouldn't be making those choices.
And I think it is incredibly important that, as this Chamber of Westminster, we do our duty not just to pass legislation, because we think in principle it is what society wants, that in principle, people might want a bill that allows for assisted dying. We have to ensure that any piece of legislation that is passed doesn't leave certain people more vulnerable. And at the moment, this legislation doesn't do that. And the question of motivation does matter.
If the bill really is, as its proponents say, about dealing only with those people with a prognosis of six months, and even that is very uncertain. There are many cases of people living much longer than a six month prognosis, but if it really is about people with a terminal illness, then what is wrong? What is the objection to asking people why they wish for an assisted death? And if it is that they are afraid of pain, if it is afraid because they don't think they can get assistance, but that those things could be dealt with, surely we should have in place arrangements that allow for people to have those conversations.
At the moment, none of that is in the bill, and the motivations might not just simply be about autonomy, but about constraint that not everyone has the privileges that many members of your Lordships House have in really being able to say, any choice we make might be unconstrained. We need to be legislating for those people for whom many, many choices are profoundly constrained. The Lord.
And I realise this is going to be a very tall order, but somehow to put forward wording, suggestions, ideas that might be acceptable to the sponsor of the bill, because there are a set of issues in amendment 30 that I think warrant careful listening and attention. It is not sufficient to say this bill is about providing choice, because as the noble Lord, Lord MP said, most members of your Lordships House do have the have many advantages that would allow us to get specialist treatment, would allow us to get the opportunities of second opinions, possibly of having social care that we might need.
Other people don't have that. And therefore, while it might be appropriate to say, well, at the end of life, I don't want to be a burden, I want not to be a burden to my family. I should have an assisted death. But that's fine. If the choice is about an individual who has all of their faculties and all the resources available to them saying, this is my choice, I want to do that. But what about the person who says, actually, I think I need an assisted death because there's nobody to care for me, because social care in my area is not adequate, the state cannot afford to fund it, or the palliative care is not available.
And the answers to the group at the end of last week about palliative care started off a series of what I think are quite chilling responses that palliative care isn't equal across the country, but we can't wait until we get something like equality before this legislation should come in. I think that's what I heard the noble and learned Lord say at the end of last week. But, my Lords, why should some people be put in that invidious position of maybe not really wanting an assisted death, but feeling there is no palliative or inadequate palliative care available to them, that social care isn't available to them when other people wouldn't be making those choices.
And I think it is incredibly important that, as this Chamber of Westminster, we do our duty not just to pass legislation, because we think in principle it is what society wants, that in principle, people might want a bill that allows for assisted dying. We have to ensure that any piece of legislation that is passed doesn't leave certain people more vulnerable. And at the moment, this legislation doesn't do that. And the question of motivation does matter.
If the bill really is, as its proponents say, about dealing only with those people with a prognosis of six months, and even that is very uncertain. There are many cases of people living much longer than a six month prognosis, but if it really is about people with a terminal illness, then what is wrong? What is the objection to asking people why they wish for an assisted death? And if it is that they are afraid of pain, if it is afraid because they don't think they can get assistance, but that those things could be dealt with, surely we should have in place arrangements that allow for people to have those conversations.
At the moment, none of that is in the bill, and the motivations might not just simply be about autonomy, but about constraint that not everyone has the privileges that many members of your Lordships House have in really being able to say, any choice we make might be unconstrained. We need to be legislating for those people for whom many, many choices are profoundly constrained. The Lord.
15:46
Baroness O'Loan (Crossbench)
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Baroness O'Loan (Crossbench)
It's a privilege to follow the >> It's a privilege to follow the noble Baroness Grey-Thompson and Campbell, because I think they have articulated for us the suddenness articulated for us the suddenness with which those with a disability can move into the category of those for whom death is imminent, and it for whom death is imminent, and it can happen very suddenly and without warning. And I thought that their contributions were enormously important to us. As we contemplate this, my Lords, there is in this Bill nothing that at the present time would make doctors really determine that they are able to identify real coercive threats, particularly where the ill person is being subjected to pressure, which may be concealed on all occasions where medical and social care staff are available.
But the person is afraid to speak because of those pressures. Making a person like feel like a burden is abusive, but it's very, very hard to detect now. There's no provision requiring doctors to inquire about those internal pressures, and we've heard a lot about them feeling a burden, financial pressure, lack of adequate NHS resources. And those are pressures which can lead to an inability to conceive of solutions which may exist or to access them. If the bill is to provide for them, then it must state what motivations are acceptable for the state to help someone end their own life.
I'd like to echo the words of the noble Baroness Barran Smith, because I asked the noble and learned Lord, Lord Faulkner, a minute ago, you know what was meant by saying that a doctor must discuss with someone seeking assisted death the availability of palliative care. And he said, well, it's not available. I understood him to say if it's not available, then it cannot be discussed. It's not a matter. But my Lord, why? Why does somebody who is in that situation and for whom palliative care would provide an answer, not have access to palliative care simply because of where they are? That, my Lord, I have to ask the house, is it is it happy that or is it even content that that is that that is a standard which we should accept.
And in debating his own bill on this topic in 2014, and looking at the issue of burden, the noble and learned Lord, Lord Falconer said that he opposed someone choosing assisted death for feeling like a burden. Can I ask the noble and learned Lord today? Does he oppose making explicit what he has agreed is implicit in this type of bill? And if not, will he accept these amendments? I know it's.
But the person is afraid to speak because of those pressures. Making a person like feel like a burden is abusive, but it's very, very hard to detect now. There's no provision requiring doctors to inquire about those internal pressures, and we've heard a lot about them feeling a burden, financial pressure, lack of adequate NHS resources. And those are pressures which can lead to an inability to conceive of solutions which may exist or to access them. If the bill is to provide for them, then it must state what motivations are acceptable for the state to help someone end their own life.
I'd like to echo the words of the noble Baroness Barran Smith, because I asked the noble and learned Lord, Lord Faulkner, a minute ago, you know what was meant by saying that a doctor must discuss with someone seeking assisted death the availability of palliative care. And he said, well, it's not available. I understood him to say if it's not available, then it cannot be discussed. It's not a matter. But my Lord, why? Why does somebody who is in that situation and for whom palliative care would provide an answer, not have access to palliative care simply because of where they are? That, my Lord, I have to ask the house, is it is it happy that or is it even content that that is that that is a standard which we should accept.
And in debating his own bill on this topic in 2014, and looking at the issue of burden, the noble and learned Lord, Lord Falconer said that he opposed someone choosing assisted death for feeling like a burden. Can I ask the noble and learned Lord today? Does he oppose making explicit what he has agreed is implicit in this type of bill? And if not, will he accept these amendments? I know it's.
15:49
Baroness Cass (Crossbench)
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Baroness Cass (Crossbench)
I have to agree with everybody who. Has said that. There must be who. Has said that. There must be the question asked of what is the motivation for that individual? Because I would submit that unless a doctor is able to ask that question, they are not able to discharge their duties in two ways. One is to assess the capacity of the individual to make that decision. Unless you hear the decision articulated in their own words. And secondly, if you are going to offer them all the options that may help to address their fears or the issues, you can't do that unless you know what the motivation is.
Now, in this House and in broader society, there will be a spectrum of what anyone feels is acceptable in an assisted death. For some people, there is the absolute clarity that an assisted death is never, under any circumstances, acceptable. And then for those of us who do feel that an accepted death is acceptable, we will have different cut offs. For some it will be because they want to. They don't want their children to be financially disadvantaged for their illness, by their illness, and for others, it will be that intolerable suffering is the only acceptable rationale.
And I would guess that across most of society, the main line that they have been given for this is that it should be related to suffering. Now, is there any practical way in which we can say along that spectrum, and we could all line ourselves up along that spectrum? Is there any practical way of determining where that Cut-Off should be? And if we do go back to the very long discussions we had, I think on day one about coercion, I think it has become clearer and clearer.
Also during the course of this discussion, that it is impossible to determine coercion driven internally, i.e. the feeling of being a burden from coercion driven externally in subtle or less subtle ways. It's very hard to determine that if you live with the family and know them well, let alone if you have 1 or 2 contacts, the thing that is easier to make an objective assessment of is whether what the patient or the person describes to you as their their personal, their personal distress makes sense in the context of the illness that they are discussing, and that may be being incontinent.
It may be losing independence and it may be unmanageable pain. And if we are asking the doctors involved in this to assess for coercion, we're giving them an impossible task. If we are asking them to determine whether the person has a source of distress, which is only going to get better and cannot get worse because of the terminal illness, that is a much more tangible form of assessment. So I would suggest that that suffering related to the illness itself, however, that the the the sufferer describes, it is the only way in which we can have any objective way of distinguishing those who are being coerced from those who have an internally driven reason for seeking an assisted death.
Now, in this House and in broader society, there will be a spectrum of what anyone feels is acceptable in an assisted death. For some people, there is the absolute clarity that an assisted death is never, under any circumstances, acceptable. And then for those of us who do feel that an accepted death is acceptable, we will have different cut offs. For some it will be because they want to. They don't want their children to be financially disadvantaged for their illness, by their illness, and for others, it will be that intolerable suffering is the only acceptable rationale.
And I would guess that across most of society, the main line that they have been given for this is that it should be related to suffering. Now, is there any practical way in which we can say along that spectrum, and we could all line ourselves up along that spectrum? Is there any practical way of determining where that Cut-Off should be? And if we do go back to the very long discussions we had, I think on day one about coercion, I think it has become clearer and clearer.
Also during the course of this discussion, that it is impossible to determine coercion driven internally, i.e. the feeling of being a burden from coercion driven externally in subtle or less subtle ways. It's very hard to determine that if you live with the family and know them well, let alone if you have 1 or 2 contacts, the thing that is easier to make an objective assessment of is whether what the patient or the person describes to you as their their personal, their personal distress makes sense in the context of the illness that they are discussing, and that may be being incontinent.
It may be losing independence and it may be unmanageable pain. And if we are asking the doctors involved in this to assess for coercion, we're giving them an impossible task. If we are asking them to determine whether the person has a source of distress, which is only going to get better and cannot get worse because of the terminal illness, that is a much more tangible form of assessment. So I would suggest that that suffering related to the illness itself, however, that the the the sufferer describes, it is the only way in which we can have any objective way of distinguishing those who are being coerced from those who have an internally driven reason for seeking an assisted death.
15:53
Baroness Finlay of Llandaff (Crossbench)
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Baroness Finlay of Llandaff (Crossbench)
I'm really grateful to my noble friend Baroness Cass for having friend Baroness Cass for having clarified that so well, and I welcome Baroness Campbell back here welcome Baroness Campbell back here in the chamber for her contribution with all of the in-depth experience that she has, which complements and builds on that of my noble friend Baroness Grey-Thompson, I think this debate has gone right to the heart of a real area that is not clear in this bill, and that is really whether this is a medical treatment or is it not a medical treatment in terms of providing an assisted death? There does seem to be lack of clarity on that.
We in when the bill was in the other place, the bill committee in an exchange highlighted, I think, the ongoing confusion around the point and the profound consequences of it. One member of the committee asked the sponsor of doctors would have to suggest assisted dying to every potentially eligible patient, as they are required to do with all medical treatments. You must inform the patient of everything that is an option for you, the sponsor replied positively that doctors are required to set out all the available options.
The sponsor was then asked again about doctors having a duty to raise it with every patient by a different member of the committee, to which she replied they did not. It should be down to professional judgement. Now there's a fundamental conflict there for the routine doctor looking after a patient, and we heard earlier on today about the concern over ableist attitudes. And I would have to say one does see them. It is not uncommon to hear people say, oh, it must be awful to be like that in relation to somebody who has a disability of some sort.
Of course, nobody wants to be disabled. I have never come across a patient who has said, I want to have spinal cord compression. Now, of course they don't. Nobody wants it. But in the event you have to try to not get into a very negative view with the patient and make sure that you make options available, which are likely to improve their quality of life irrespective of whether it extends their life or not. So I think it would be really important for the noble and learned law to confirm whether he considers assisted dying to be a form of medical treatment.
And if it is, do doctors have a duty to raise it with every potentially eligible patient? I know that there's been concern that some patients might be hinting that they want to talk about having an assisted death, but they can't quite verbalise it. But as anyone who's taught communication skills knows, when you're in doubt, you answer a question with a question and you keep on exploring so people will tell you what they really are wanting to know about and think about.
And you use their own words because people have different words for different things, and that's quite common. But the bill needs to make it absolutely clear what it is, because requiring an assessment would be quite different if it's being suggested by a doctor versus if it is, as we have debated earlier on today, instigated by the patient, the person themselves, the medical royal colleges and equivalent bodies are clear. They do not regard assisted dying as a medical treatment, and would prefer for it to be delivered outside medical settings.
My own professional group, the Association for Palliative Medicine, has expressed the view that assisted dying services should be implemented outside of usual medical practice. The BMA has does not believe that assisted dying should be integrated into existing care pathways, and Frazer Richardson from Care England pointed out in their survey some expressed very clearly that this goes against their ethos of a care service. Michael Mulholland, from the Royal College of GPS told our select committee the whole question of making decisions for assisted dying is against every thing I have been trained in and have practised for 30 years.
The outcome at the end of life has been that we will support and care for you and provide palliative care as best we can in the circumstances, as a college. He went on to say we would hope that this goes on the face of the bill and we would have a separate service. So we've had discussions about people's internal feelings about external possible pressures and coercion that may be felt by a person and the difficulties of assessing those and all the grey areas that my noble friend Baroness Cass has referred to in this spectrum that we deal with really every day in clinical practice.
But I do think there are some very fundamental issues that this debate has raised and that do need to be clarified as the way of going forwards.
We in when the bill was in the other place, the bill committee in an exchange highlighted, I think, the ongoing confusion around the point and the profound consequences of it. One member of the committee asked the sponsor of doctors would have to suggest assisted dying to every potentially eligible patient, as they are required to do with all medical treatments. You must inform the patient of everything that is an option for you, the sponsor replied positively that doctors are required to set out all the available options.
The sponsor was then asked again about doctors having a duty to raise it with every patient by a different member of the committee, to which she replied they did not. It should be down to professional judgement. Now there's a fundamental conflict there for the routine doctor looking after a patient, and we heard earlier on today about the concern over ableist attitudes. And I would have to say one does see them. It is not uncommon to hear people say, oh, it must be awful to be like that in relation to somebody who has a disability of some sort.
Of course, nobody wants to be disabled. I have never come across a patient who has said, I want to have spinal cord compression. Now, of course they don't. Nobody wants it. But in the event you have to try to not get into a very negative view with the patient and make sure that you make options available, which are likely to improve their quality of life irrespective of whether it extends their life or not. So I think it would be really important for the noble and learned law to confirm whether he considers assisted dying to be a form of medical treatment.
And if it is, do doctors have a duty to raise it with every potentially eligible patient? I know that there's been concern that some patients might be hinting that they want to talk about having an assisted death, but they can't quite verbalise it. But as anyone who's taught communication skills knows, when you're in doubt, you answer a question with a question and you keep on exploring so people will tell you what they really are wanting to know about and think about.
And you use their own words because people have different words for different things, and that's quite common. But the bill needs to make it absolutely clear what it is, because requiring an assessment would be quite different if it's being suggested by a doctor versus if it is, as we have debated earlier on today, instigated by the patient, the person themselves, the medical royal colleges and equivalent bodies are clear. They do not regard assisted dying as a medical treatment, and would prefer for it to be delivered outside medical settings.
My own professional group, the Association for Palliative Medicine, has expressed the view that assisted dying services should be implemented outside of usual medical practice. The BMA has does not believe that assisted dying should be integrated into existing care pathways, and Frazer Richardson from Care England pointed out in their survey some expressed very clearly that this goes against their ethos of a care service. Michael Mulholland, from the Royal College of GPS told our select committee the whole question of making decisions for assisted dying is against every thing I have been trained in and have practised for 30 years.
The outcome at the end of life has been that we will support and care for you and provide palliative care as best we can in the circumstances, as a college. He went on to say we would hope that this goes on the face of the bill and we would have a separate service. So we've had discussions about people's internal feelings about external possible pressures and coercion that may be felt by a person and the difficulties of assessing those and all the grey areas that my noble friend Baroness Cass has referred to in this spectrum that we deal with really every day in clinical practice.
But I do think there are some very fundamental issues that this debate has raised and that do need to be clarified as the way of going forwards.
15:59
Lord Sandhurst (Conservative)
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Lord Sandhurst (Conservative)
I can be very brief. >> We have heard the. >> Most powerful support for these amendments from the distinguished, amendments from the distinguished, most severely disabled members of this House, the people who really know what their conditions mean and who all support these amendments. We know also that all the major organisations representing disabled people have spoken against. Or cannot support this bill. How can we ignore that without in fact being patronising and paternalistic? What possible good reason is there for us to know better, or for the noble and learned Lord to know better? What possible good reason, therefore, can there be not to accept these amendments, and to say that, subject to any minor drafting details, they are accepted in principle now.
16:00
Baroness Coffey (Conservative)
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Baroness Coffey (Conservative)
As amendments 56 and 5757 was to do with this acting for the primary do with this acting for the primary purpose of avoiding physical pain. The second was about acting for their own sake rather than for the benefit of others, so the two are distinct, although somewhat linked, because to some extent the issue about physical pain or avoiding it is a very clear cut way of limiting the scope. And I accept. My noble friend Lord Markham doesn't think it shouldn't be limited in that way, and indeed many others will as may as well.
And I bear in mind what the noble Baroness, Lady Royle, has said about people are dying anyway. But this is about taking a new way of accelerating that death, rather than perhaps the situation where we have at the moment of, for example, do not resuscitate. Or as I say, I'm relieved that we no longer have the Liverpool Care Pathway. Now, one of the things that, without revisiting the palliative care debate is but and although I was struck by the words of the noble Lord Lord Stevens of Birmingham about that element of choice, this is whether it is a real choice, and there it can be objectively considered about the avoidance of primary, of the primary purpose of being paid in terms of palliative care were widely available.
I know that there are people who still feel that palliative care may still not be enough, and so that would still this amendment 57 would still allow for that to be the case where the second element comes. And I appreciate noble Lords may feel we're back again here about coercion, but this is about motivation. And I was somewhat struck by what the noble Baroness, Lady Whitaker, said. I don't want to be a burden. My children know this. Let's just get on with it.
Almost. But this issue, I'm afraid, does keep coming back. I'd like to thank the noble Lords who table sign my amendments, but one of them has left, I think, because we've gone past 3 p.m. That's the noble and right reverend Lord Harries of Pentregarth. And I was being motivated by the debate that the noble and learned Lord Falconer of Thoroton, had in this chamber on the 7th of November, 2014, with the same peer. Going back to this understanding of what is voluntary.
And back then the noble and learned Lord referred to the aspects of it not being wanting to be a burden. I'm just going to quote if that's OK. I appreciate the noble Lord may not have this Hansard to hand. There was also a question from a different peer about, well, how do you know? And the key thing was that, admittedly, that bill was about a judge led process, but it was about conducting in-depth discussions with the patient and other doctors. But the voluntary had to be voluntary, not being forced into it by coercion or by the sort of guilt that we referred to earlier in the debate.
And the earlier in the debate was that feeling of being a burden. So I guess my question to the noble and learned Lord is, has something changed? Has it just that society has moved on, that autonomy is now more important than our concerns that are still there about why people want to accelerate the end of their life, even though they know it may be coming quite soon. So for that regard, I am still concerned about this issue, about making it clearer.
Most of the stories that have led to the debates and the bills that we had have been about pain, have been about suffering, and that's why I've been preferring, to be candid, amendment 57, in order to avoid the issue highlighted in 56.
And I bear in mind what the noble Baroness, Lady Royle, has said about people are dying anyway. But this is about taking a new way of accelerating that death, rather than perhaps the situation where we have at the moment of, for example, do not resuscitate. Or as I say, I'm relieved that we no longer have the Liverpool Care Pathway. Now, one of the things that, without revisiting the palliative care debate is but and although I was struck by the words of the noble Lord Lord Stevens of Birmingham about that element of choice, this is whether it is a real choice, and there it can be objectively considered about the avoidance of primary, of the primary purpose of being paid in terms of palliative care were widely available.
I know that there are people who still feel that palliative care may still not be enough, and so that would still this amendment 57 would still allow for that to be the case where the second element comes. And I appreciate noble Lords may feel we're back again here about coercion, but this is about motivation. And I was somewhat struck by what the noble Baroness, Lady Whitaker, said. I don't want to be a burden. My children know this. Let's just get on with it.
Almost. But this issue, I'm afraid, does keep coming back. I'd like to thank the noble Lords who table sign my amendments, but one of them has left, I think, because we've gone past 3 p.m. That's the noble and right reverend Lord Harries of Pentregarth. And I was being motivated by the debate that the noble and learned Lord Falconer of Thoroton, had in this chamber on the 7th of November, 2014, with the same peer. Going back to this understanding of what is voluntary.
And back then the noble and learned Lord referred to the aspects of it not being wanting to be a burden. I'm just going to quote if that's OK. I appreciate the noble Lord may not have this Hansard to hand. There was also a question from a different peer about, well, how do you know? And the key thing was that, admittedly, that bill was about a judge led process, but it was about conducting in-depth discussions with the patient and other doctors. But the voluntary had to be voluntary, not being forced into it by coercion or by the sort of guilt that we referred to earlier in the debate.
And the earlier in the debate was that feeling of being a burden. So I guess my question to the noble and learned Lord is, has something changed? Has it just that society has moved on, that autonomy is now more important than our concerns that are still there about why people want to accelerate the end of their life, even though they know it may be coming quite soon. So for that regard, I am still concerned about this issue, about making it clearer.
Most of the stories that have led to the debates and the bills that we had have been about pain, have been about suffering, and that's why I've been preferring, to be candid, amendment 57, in order to avoid the issue highlighted in 56.
16:04
Lord Kamall (Conservative)
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Lord Kamall (Conservative)
My Lords, this has been another rather long debate, but an interesting debate and important interesting debate and important that noble Lords who wanted to speak did have their voice heard. And it's also really runs to touches on something we touched on very early in this debate. No one will remember that we, when we were debating another version of motivation, if you like, we were talking about coercion, and there are a number of noble Lords who put forward amendments to talk about encouragement.
We saw what a difficult debate that was to to distinguish between encouragement and coercion and encouragement, a form of coercion, and also how you legally define something like encouragement, as it were. And now we've got the very same issue with motivation. In some ways, motivation is sort of I think there's an old lady, Baroness Cash said. It's sort of the internal version of self encouragement or self coercion, wanting to feel a burden. We've had a debate about what it means to feel like like, like a burden.
And I think it's really important that we understand the motivation and professionally, as nowhere as lady said, doctors need to do that to understand what help or assistance that patient could be given. It could be with this. If this bill passes that they are allowed or helped to progress to assisted dying, but it could be that they are offered something else that they feel very comfortable with, and it gives them a bit longer to live and have that quality time that I know.
Lady Baroness Fox talked about having with her family. In fact, when I first spoke to our first met when I was at health Minister and spoke to the noble Baroness, Lady Findlay, about palliative care, one of the things that I learned very much from Baroness Finlay was the idea of that people who live longer, even though they may want it to end now, actually appreciated once they entered palliative care, appreciated that extra time with their family to to close those unclosed things, to make up with a friends and family that they may have fallen out with, but actually to bring closure to their life before they went.
And I think it's important that we recognise that. I don't want to go back into the whole debate about palliative care, but I think it's really important that palliative care is seen as an option to give that closure to people, even if they do want, even if they decide they don't want palliative care. And in fact, they decide, I've made my mind up, and I think that's probably a more informed choice. And the debate, I think, is going to be very careful about what trying to define exactly what the one word that sums up the debate is, because if it's about choice and only choice, then actually pretty soon after this bill reaches the statute book, people will be saying, well, I, I only have 12 months to live and why can't I have the same choice as people who have six months? So surely it's a combination of factors, not just choice or not just suffering, but a combination of factors.
And that makes it incredibly difficult for the lawyers, but also for the medical people to determine. And I think we just have to unpick some of that now. Nobles have spoken in this debate, have picked up on a number of issues, people feeling like a burden, mental health disorders, disabilities and remembering that not all disabilities are visible. But also on that point, to welcome back the noble Lady Baroness Campbell of Surbiton. I should know it because actually she lives down the road from me.
And so next time she sees me on the high street, she'll, she'll probably she'll probably prod me on that. Financial considerations, self motivation and avoiding physical pain. And the bill does not require a specific motive as part of the eligibility criteria. So I just wonder whether a noble Lord has obviously the whole bill is about eligibility for the first few words is about who's eligible to seek assisted assisted death services or terminally ill adult services. But I think it would be helpful if the noble and learned Lord Falconer of Thoroton could expand on the thought process behind the definition.
His definition is very tight definition of eligibility. And I have to say to noble Lords who've perhaps teased the noble Lord, Lord a little bit, that about things he may have said in the past, I think we're all entitled to change our mind. I think we are all entitled when we learn new facts or we hear a different view, we're entitled to change our mind. I don't see that as a a weakness in an argument if someone changes their mind when they've heard new facts.
So I don't think we should be too harsh. I find myself defending the noble Lord, but I don't think we should be too harsh and I should remind people that I am. I am personally very torn on this bill, and I haven't made up my mind clearly, and I am waiting to see the outcome of this debate before I make up my own mind about how I vote on this. And we also heard that word dignity. And I teach at a Catholic university.
And dignity is a very important concept in Catholic social teaching. But what is dignity? And dignity could be subjective. It could be one person who's told that they have to wear incontinence pads for the rest of their life. It could be someone else who says, I'm sorry, you can't walk for the rest of your life. But actually other people have quite a very full life, even if they're faced with those, those challenges or or have to, you know, find themselves disabled. So I think it's really difficult when we're talking about dignity, how we define dignity.
In many ways, dignity is subjective. What you know, I've read many of these sort of papal encyclicals about all this. And by the way, I'm a muslim teaching at Catholic University. I am the diversity, if you like, in in many ways. But I think it's really I think it's really important that we consider this what, what we really mean by dignity. We all think we know what it means, but we all have a different perspective of what dignity is. So I think also a point has come up many times in this bill is that we hear the words pain and suffering, but they're not actually in the bill.
And I think we have to also ask the sponsor the bill about the thought process, about why the Noble and learned all decided not to put pain and suffering in the bill so that we can all understand, because given that we've all got many, many locals who ask that question about pain and suffering, why it's not explicitly in the bill. And then we also have to ask the government, and I would ask the noble Lady, the Minister, very carefully. I think a number of times during the debate in a few days, we've had this debate in committee.
We have put questions to the government, and the government have constrained themselves as to what they answer. And I think it's really important that the government tells us what the implications would be if this bill were to pass into law, and what that means for resources in the department, what it means for decisions that the Department of Health may have to make, what it might mean for other departments of government. And I think that's really important. We just can't say I'm going to confine myself to these few clauses, because this will have implications.
Some will say it may have implications for wider society. You know, a society that allows people to take their lives early or encourages death. It changes the sort of society we live in now that many people will welcome, that others will say it's a society of choice. Others will say, no, we don't want to live in that society. But I think we have to remember the implications of this bill. So I would like to ask the noble Lady, the Minister, to set out the government's considered view.
I know the Minister will say some of these these amendments were as drafted, are not legally sound, and we understand all that. But these are probing amendments. This is Committee stage. They're not meant to be completely technically sound. But what we need to know is if they were to pass and if they were to be tidied up by the government lawyers or the the the officials, what does that mean for the workability of the wider health and care system, and not just in respect to these issues that we are debating, or the individual clauses in the bill? So we need to have a clear view of how this will change things, and also the challenges that any government will face when a new bill comes in.
So I think it would be helpful. I'll stop there. I've asked a few questions to the noble and Lord Falconer of Thoroton about the motivations for some of the decisions he made in drafting the bill, but also to the noble Lady, the Minister, on behalf of the government, to answer the very real implications, resources, etc. but also not only in the Department of Health and Social Care, but wider across government.
We saw what a difficult debate that was to to distinguish between encouragement and coercion and encouragement, a form of coercion, and also how you legally define something like encouragement, as it were. And now we've got the very same issue with motivation. In some ways, motivation is sort of I think there's an old lady, Baroness Cash said. It's sort of the internal version of self encouragement or self coercion, wanting to feel a burden. We've had a debate about what it means to feel like like, like a burden.
And I think it's really important that we understand the motivation and professionally, as nowhere as lady said, doctors need to do that to understand what help or assistance that patient could be given. It could be with this. If this bill passes that they are allowed or helped to progress to assisted dying, but it could be that they are offered something else that they feel very comfortable with, and it gives them a bit longer to live and have that quality time that I know.
Lady Baroness Fox talked about having with her family. In fact, when I first spoke to our first met when I was at health Minister and spoke to the noble Baroness, Lady Findlay, about palliative care, one of the things that I learned very much from Baroness Finlay was the idea of that people who live longer, even though they may want it to end now, actually appreciated once they entered palliative care, appreciated that extra time with their family to to close those unclosed things, to make up with a friends and family that they may have fallen out with, but actually to bring closure to their life before they went.
And I think it's important that we recognise that. I don't want to go back into the whole debate about palliative care, but I think it's really important that palliative care is seen as an option to give that closure to people, even if they do want, even if they decide they don't want palliative care. And in fact, they decide, I've made my mind up, and I think that's probably a more informed choice. And the debate, I think, is going to be very careful about what trying to define exactly what the one word that sums up the debate is, because if it's about choice and only choice, then actually pretty soon after this bill reaches the statute book, people will be saying, well, I, I only have 12 months to live and why can't I have the same choice as people who have six months? So surely it's a combination of factors, not just choice or not just suffering, but a combination of factors.
And that makes it incredibly difficult for the lawyers, but also for the medical people to determine. And I think we just have to unpick some of that now. Nobles have spoken in this debate, have picked up on a number of issues, people feeling like a burden, mental health disorders, disabilities and remembering that not all disabilities are visible. But also on that point, to welcome back the noble Lady Baroness Campbell of Surbiton. I should know it because actually she lives down the road from me.
And so next time she sees me on the high street, she'll, she'll probably she'll probably prod me on that. Financial considerations, self motivation and avoiding physical pain. And the bill does not require a specific motive as part of the eligibility criteria. So I just wonder whether a noble Lord has obviously the whole bill is about eligibility for the first few words is about who's eligible to seek assisted assisted death services or terminally ill adult services. But I think it would be helpful if the noble and learned Lord Falconer of Thoroton could expand on the thought process behind the definition.
His definition is very tight definition of eligibility. And I have to say to noble Lords who've perhaps teased the noble Lord, Lord a little bit, that about things he may have said in the past, I think we're all entitled to change our mind. I think we are all entitled when we learn new facts or we hear a different view, we're entitled to change our mind. I don't see that as a a weakness in an argument if someone changes their mind when they've heard new facts.
So I don't think we should be too harsh. I find myself defending the noble Lord, but I don't think we should be too harsh and I should remind people that I am. I am personally very torn on this bill, and I haven't made up my mind clearly, and I am waiting to see the outcome of this debate before I make up my own mind about how I vote on this. And we also heard that word dignity. And I teach at a Catholic university.
And dignity is a very important concept in Catholic social teaching. But what is dignity? And dignity could be subjective. It could be one person who's told that they have to wear incontinence pads for the rest of their life. It could be someone else who says, I'm sorry, you can't walk for the rest of your life. But actually other people have quite a very full life, even if they're faced with those, those challenges or or have to, you know, find themselves disabled. So I think it's really difficult when we're talking about dignity, how we define dignity.
In many ways, dignity is subjective. What you know, I've read many of these sort of papal encyclicals about all this. And by the way, I'm a muslim teaching at Catholic University. I am the diversity, if you like, in in many ways. But I think it's really I think it's really important that we consider this what, what we really mean by dignity. We all think we know what it means, but we all have a different perspective of what dignity is. So I think also a point has come up many times in this bill is that we hear the words pain and suffering, but they're not actually in the bill.
And I think we have to also ask the sponsor the bill about the thought process, about why the Noble and learned all decided not to put pain and suffering in the bill so that we can all understand, because given that we've all got many, many locals who ask that question about pain and suffering, why it's not explicitly in the bill. And then we also have to ask the government, and I would ask the noble Lady, the Minister, very carefully. I think a number of times during the debate in a few days, we've had this debate in committee.
We have put questions to the government, and the government have constrained themselves as to what they answer. And I think it's really important that the government tells us what the implications would be if this bill were to pass into law, and what that means for resources in the department, what it means for decisions that the Department of Health may have to make, what it might mean for other departments of government. And I think that's really important. We just can't say I'm going to confine myself to these few clauses, because this will have implications.
Some will say it may have implications for wider society. You know, a society that allows people to take their lives early or encourages death. It changes the sort of society we live in now that many people will welcome, that others will say it's a society of choice. Others will say, no, we don't want to live in that society. But I think we have to remember the implications of this bill. So I would like to ask the noble Lady, the Minister, to set out the government's considered view.
I know the Minister will say some of these these amendments were as drafted, are not legally sound, and we understand all that. But these are probing amendments. This is Committee stage. They're not meant to be completely technically sound. But what we need to know is if they were to pass and if they were to be tidied up by the government lawyers or the the the officials, what does that mean for the workability of the wider health and care system, and not just in respect to these issues that we are debating, or the individual clauses in the bill? So we need to have a clear view of how this will change things, and also the challenges that any government will face when a new bill comes in.
So I think it would be helpful. I'll stop there. I've asked a few questions to the noble and Lord Falconer of Thoroton about the motivations for some of the decisions he made in drafting the bill, but also to the noble Lady, the Minister, on behalf of the government, to answer the very real implications, resources, etc. but also not only in the Department of Health and Social Care, but wider across government.
16:12
Baroness Merron, The Parliamentary Under-Secretary for Health and Social Care (Labour)
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Baroness Merron, The Parliamentary Under-Secretary for Health and Social Care (Labour)
My Lords, may I also welcome back to the chamber and to this House, the noble Lady Baroness Campbell. It's a pleasure to see the noble Lady back with us, and to thank her and other noble Lords for their contributions in this group of amendments. I will once again make clear that I will keep any detailed comments limited to amendments on which the government has major legal, technical or operational workability concerns. I actually think it is important to remind your Lordships House on that should, and I say this to the noble Lord Lord Kamall, that this government is only doing what any government would do, which is to be scrupulously neutral, as your Lordships would expect us to be, and to handle it in that way.
If Parliament passes this bill into law, then of course we will ensure its safe and effective implementation. But until that point, I'm afraid the noble Lord and I'm sure he does understand. I will be. Scrupulously to what the role is of any any government would be. So let me turn to amendment 30, tabled by the noble Lady Baroness Foster, and spoken to by the noble Lord, Lord Weir, and also the amendment in the name of the noble Lady, Baroness Lawlor, three.
030ZA, which seeks to prevent a terminally ill person in England or Wales being eligible for an assisted death if they are motivated by certain specified factors. These amendments would introduce uncertainty around definitions and concepts, such as what constitutes further practical operational concerns that I would like to bring to note for the House's consideration the reference to not being motivated by disability while excluding the terminal illness and disability is potentially complex. To operationalise. It may also be that somebody has multiple motivations.
It is unclear how these could be separated or who would be able to make a final judgement. Amendment 56 315 and 344 tabled by the noble Lady Baroness Coffey seek to require that a person requesting an assisted death is acting for their own sake, not for the benefit of others. In order to be eligible. These amendments are regarded as ambiguous, as the meaning for their own sake isn't clear and would be difficult to assess. It may therefore lead to uncertainty amongst practitioners and individuals.
These amendments also create an internal inconsistency in the Bill as they amend the eligibility criteria in the first and second assessment, but this is not carried through to the panel, and I would reference clause 17, amendments 57 314 and 343, also tabled by the noble Lady. Baroness Coffey seek to limit assisted dying to those who are primarily seeking to avoid physical pain. Noble Lords may wish to note that following these amendments, it may be difficult to determine the nature and the level of pain required to become eligible for an assisted death.
It is also unclear who would be responsible for making that determination. In order to justify differential treatment as between different categories of terminally ill people, there would be a need to justify this difference in treatment between a person with extreme mental suffering as a consequence of their terminal illness, as opposed to physical pain. These amendments would require further consequential amendments to make them workable and consistent throughout the bill, not least because on their own they would create different assessment criteria for doctors and the panels to use.
Turning to amendment 32, tabled by the noble Lady Baroness Finlay, which makes it explicit that the person may be assessed for eligibility for an assisted death, noble Lords may wish to note that. Clause one open brackets, two close brackets and other parts of the bill already provide for the assessment of eligibility. Whilst this is of course a choice for noble Lords, this amendment may introduce inconsistencies and ambiguity as noble Lords will be aware, these amendments have not had technical drafting support from officials.
These issues raised are, rightly a matter for noble Lords to consider and decide, but I would note that the way they are currently drafted may require further consideration in order to be made fully workable, effective or enforceable.
If Parliament passes this bill into law, then of course we will ensure its safe and effective implementation. But until that point, I'm afraid the noble Lord and I'm sure he does understand. I will be. Scrupulously to what the role is of any any government would be. So let me turn to amendment 30, tabled by the noble Lady Baroness Foster, and spoken to by the noble Lord, Lord Weir, and also the amendment in the name of the noble Lady, Baroness Lawlor, three.
030ZA, which seeks to prevent a terminally ill person in England or Wales being eligible for an assisted death if they are motivated by certain specified factors. These amendments would introduce uncertainty around definitions and concepts, such as what constitutes further practical operational concerns that I would like to bring to note for the House's consideration the reference to not being motivated by disability while excluding the terminal illness and disability is potentially complex. To operationalise. It may also be that somebody has multiple motivations.
It is unclear how these could be separated or who would be able to make a final judgement. Amendment 56 315 and 344 tabled by the noble Lady Baroness Coffey seek to require that a person requesting an assisted death is acting for their own sake, not for the benefit of others. In order to be eligible. These amendments are regarded as ambiguous, as the meaning for their own sake isn't clear and would be difficult to assess. It may therefore lead to uncertainty amongst practitioners and individuals.
These amendments also create an internal inconsistency in the Bill as they amend the eligibility criteria in the first and second assessment, but this is not carried through to the panel, and I would reference clause 17, amendments 57 314 and 343, also tabled by the noble Lady. Baroness Coffey seek to limit assisted dying to those who are primarily seeking to avoid physical pain. Noble Lords may wish to note that following these amendments, it may be difficult to determine the nature and the level of pain required to become eligible for an assisted death.
It is also unclear who would be responsible for making that determination. In order to justify differential treatment as between different categories of terminally ill people, there would be a need to justify this difference in treatment between a person with extreme mental suffering as a consequence of their terminal illness, as opposed to physical pain. These amendments would require further consequential amendments to make them workable and consistent throughout the bill, not least because on their own they would create different assessment criteria for doctors and the panels to use.
Turning to amendment 32, tabled by the noble Lady Baroness Finlay, which makes it explicit that the person may be assessed for eligibility for an assisted death, noble Lords may wish to note that. Clause one open brackets, two close brackets and other parts of the bill already provide for the assessment of eligibility. Whilst this is of course a choice for noble Lords, this amendment may introduce inconsistencies and ambiguity as noble Lords will be aware, these amendments have not had technical drafting support from officials.
These issues raised are, rightly a matter for noble Lords to consider and decide, but I would note that the way they are currently drafted may require further consideration in order to be made fully workable, effective or enforceable.
16:19
Lord Falconer of Thoroton (Labour)
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Lord Falconer of Thoroton (Labour)
I'm grateful to noble Lords who contributed to this debate. May I just make four quick preliminary points? First of all, could I join everybody in welcoming Baroness Campbell of Surbiton back? Baroness Campbell of Surbiton back? Baroness Campbell of Surbiton and I have been debating this for at least 20 years, or maybe longer, and it's years, or maybe longer, and it's very good that she's still with us doing it in the same way. Secondly, I mean no disrespect to Baroness Monckton of Darlington, but I won't deal with the point she's made because and I quite understand why.
But they've got, in a sense, nothing to do with the particular amendments here, which she acknowledged. But I'm more than happy to talk to her about the process that's used. I would welcome a conversation with her. Thirdly, the noble Baroness Baroness Finlay of Landau asked the question. First of all, is it a medical procedure? And secondly, is it part of the range of treatments that have to be offered or discussed with the patient in relation to the to the first question, is it a medical procedure? Well, the noble Baroness will know that the Bill provides that the actual provision of assistance has to be given by a doctor.
I do not know what the consequences are either in relation to the medical legal world, but that's the medical connection in relation to the question. If it's a possible medical procedure, does it have to be raised? The answer is unequivocally not because the bill specifically provides. No registered medical practitioner is under any duty to raise the subject of the provision of assistance in accordance with this act with a person. That's clause five one. So the matter is put completely beyond doubt in the bill.
Could I turn to the substance of the amendments and the substance of the amendments fall into effectively three categories. First of all, the amendments moved by the noble Lord Lord Weir to the effect that certain motivations, if they exist, should ban or prohibit an assisted death. Secondly, an amendment that says that the only circumstances in which you can have an assisted death is when you're acting for your own sake, rather than for the benefit of others. And then the third category is where you are acting for the primary, primary purpose of avoiding physical pain.
So all of these amendments in this group are designed to try to limit it to certain pro permitted motivations only. Could I adopt completely the speech of the noble Lord, Lord Markham, who described what the Bill is seeking to do. It is seeking to give people who are diagnosed as having six months or less to live the choice about how their life ends in those six months, the choice they make may be motivated by a whole range of factors.
The pain may be too much. They may not be able to bear the thought of being reliant on their children, not because they see themselves as a burden, but because the whole change in the relationship is just unbearable. They may not want just to go through that period whilst they await death, and there is nothing else they may find the whole sense that they are incurring expenditure for somebody else, something that is so awful for them.
It makes them feel bad that they don't want to go through it. I go through all of these possibilities simply to indicate that the reason why you may want an assisted death may vary from person to person. From my own experience, it is very, very often what we would regard as pain and suffering that causes it. But what causes distress or unbearable to people is not always, and may not often be the pain or the suffering. It is the whole circumstances in which they find themselves during that last six months.
There's an incredibly good article by somebody whose mother, who had all the access to palliative care, said was awful about their circumstances, which was they were all the pain relief was there. They said goodbye. Everybody had come to say goodbye. And then weeks went by where there was nothing but staring at the wall. In a period of not quite being able to engage with other people and wanting it to end. Would they qualify if, for example, pain and suffering was the requirement? No pain would be identified.
The suffering would be the unbearable of it. This bill is constructed on the basis that the person who has got six months or less to live should have the choice. The idea that you bring in these particular things. Do they feel they're a burden to something? Somebody? Are there financial considerations that apply? Financial considerations might well apply because there is only a limited amount of money to go around. It might contribute. Is the panel or the doctor supposed to be parsing the precise part that every one of these motivations plays? In my view, that would be a very, very bad way of constructing the bill.
We have to, and I'm very happy to explain how I've got there. It is because I think it is choice. It is because pain and suffering will often be the choice. But I think if we are serious about putting the patient first, you've got to give them that choice and not be in a position where you're
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trying to look into a whole range of multiple motivations. I'm very grateful to the noble
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I'm very grateful to the noble and learned Lord for once again giving way. Can I just press him on giving way. Can I just press him on this choice point? Does he accept or I don't agree with the bill? If someone had a completely free choice, then there is an argument that can be made. But does he that can be made. But does he accept that there are many people in society that have many constraints on their ability to make choices? And what these amendments are trying to do is to make sure that they're making a free choice, not one that's being constrained by their other circumstances.
Does he accept that it's a problem if someone has all of these constraints on them, and they're not really making a free and unconstrained choice, which many people in this House would be able to make. Does he accept that that is a problem that potentially needs fixing may be difficult to fix, but does potentially need
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fixing? It's very. Difficult and would be inappropriate to try to examine inappropriate to try to examine exactly why people make particular choices. Look at the first one of choices. Look at the first one of the amendment 30 proposals. I don't want to be a burden on others or on public services. Why does the thought for some people that they are going to be a burden on their are going to be a burden on their children, become an unbearable thing for them to go through? They may make that choice because of what's gone on in their lives, but it's totally inappropriate and impossible in a bill such as this.
And it would be wrong to say you've got to. You've got to ask why they're in that position, the next one. A mental disorder, including sorry.
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Just to clarify. If the doctor
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Just to clarify. If the doctor was required to ask, required to ask what is your motivation? I thought he said, look, I just thought he said, look, I just really don't want to be a burden on my family, and it's just too intolerable. But they, you know, they've they've been told that they've they've been told that they're terminally ill relatively recently. Is it not possible that knowing that there could be knowing that there could be potentially an intervention that would say, well, maybe you won't be a burden, why don't you go and talk to them? Because one of the problems with the it's assumed the end point is there already.
Whereas if you ask the question, there's a possibility you can offer an alternative. And this is where people are saying, you know, somebody says, I can't face the pain. You can say there is pain relief available. I can't face. Now, that's not trying to undermine totally your bill, the bill, because it would be possible that if the doctor responds with some options, then you're on your way. Why don't you ask that motivation?
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Surely positive. OK. I think that's a very important question to which I will give an answer. There's a difference between excluding certain motivations, which is what motivations, which is what amendment 30 does, and asking the question why? Which Baroness Smith question why? Which Baroness Smith of Newnham raised. And I see force in the proposition that somewhere in the proposition that somewhere in the bill, somebody has got to ask why, for two reasons. First of all, as was said previously, if you ask why.
That may well throw some light on circumstances that might suggest classic coercion. And that was raised last time. And then secondly, and separately, it might it might deal with exactly what the Baroness Fox is referring to. So take an utterly absurd example. I want an assisted death because I cannot deal with the noise that's going on in my head. Well, actually, that's a building site which is going to stop tomorrow, something like that. And one should know. So I am attracted by the idea of something in the bill that says why that's got to be asked at somewhere down the line, and it also connects in, I think, with the discussions we've had previously about the multidisciplinary team that's engaged in looking after the person might well have a much better view about why.
But for the reasons I have given, I'm not in favour of trying to give specific, excluded motivations, nor am I in favour of saying it's got to be pain and suffering, or it's got to be for your own sake, because what is your own sake? How do you bear thinking about what your children feel at a particular? That could be an unbearable position?
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Just encourage. The noble and learned. Lord John what he's just said because he has pressed a point, because he has pressed a point, which for many of us and I was going to intervene earlier on, but decided I'd come to this moment. decided I'd come to this moment. And Baroness Whitaker actually drove me almost to get up, because the reality is, she can say that the reality is, she can say that she doesn't want to be a burden because she's not going to be a burden.
And I'm quite sure her burden. And I'm quite sure her family wouldn't let her be a burden. The truth of the matter is, we are concerned about making sure that people are given every opportunity to put themselves in the best position in those last six months of their lives. And if the noble Lord can find a way of being, having these questions asked without the disadvantage, which I understand he makes, it will give us a very great deal of support, and would I'd like him to do that.
Well.
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I hope I've been clear about not liking the amendments as they are. I hope I've been clear that what I hope I've been clear that what Baroness Smith of Newnham said, what Baroness Cox said as well, were useful. I'm keen to look at that and see how one can incorporate it somewhere in the bill, and it may well connect in bill, and it may well connect in with things that we've said already. I hope I've made my position clear. I would invite you, sir.
Sorry,
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sorry. My Lords, I feel a sense of disquiet listening to the noble Lords response, especially talking about privilege. I have a huge amount of privilege in my life. If I need a new wheelchair, I can buy it. I can put a lift in my house. I can buy a car. I can pay for the home controls. When I need a van with a tail lift, I can pay for that. So is the noble and learned Lord really saying that privilege, or even lack of privilege plays no part in somebody choosing to end
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their lives? I am saying everybody should
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I am saying everybody should have the choice. The way that one makes choices is inevitably determined by how one got to the determined by how one got to the point where one had to make the choice. But it's it's an impossible choice. But it's it's an impossible question. Why do we all make the choices? They're all affected. Some people make choices because they're richer or poorer than others, but richer or poorer than others, but I'm not in favour of drawing financial distinctions.
But as I hope, in the light of my remarks, the Baroness, I can't remember who started it. Sorry, my Lord Lord Weir will withdraw his amendment.
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Lord Porter order. I blame myself for this. Before
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I blame myself for this. Before the noble Lord sits down, noble and Lord sits down. He was about to say about the mental health issue. I then made a point and we've not gone back to it. I think that's a
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gone back to it. I think that's a very distinct question. Would you reflect. The way it's drafted? This is not this is not taking a
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This is not this is not taking a technical point. The way it's drafted is very confusing. If it's your mental illness that makes you come to this conclusion that that may well go to capacity. And I'm not clear what is being got at in relation to the mental health issue. But if the position is that you are, you may have a mental health condition, but you are perfectly capable of making a decision, then
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you should be allowed to make that decision. My Lords, the noble. Lord may be a bit premature at
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Lord may be a bit premature at the moment. Discussing amendment 33, in the name of Baroness Lawlor, and in the name of Baroness Lawlor, and it is for the noble Lady to to deal with her amendment.
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with her amendment. And I thank. All noble Lords. Who have contributed to this
But they've got, in a sense, nothing to do with the particular amendments here, which she acknowledged. But I'm more than happy to talk to her about the process that's used. I would welcome a conversation with her. Thirdly, the noble Baroness Baroness Finlay of Landau asked the question. First of all, is it a medical procedure? And secondly, is it part of the range of treatments that have to be offered or discussed with the patient in relation to the to the first question, is it a medical procedure? Well, the noble Baroness will know that the Bill provides that the actual provision of assistance has to be given by a doctor.
I do not know what the consequences are either in relation to the medical legal world, but that's the medical connection in relation to the question. If it's a possible medical procedure, does it have to be raised? The answer is unequivocally not because the bill specifically provides. No registered medical practitioner is under any duty to raise the subject of the provision of assistance in accordance with this act with a person. That's clause five one. So the matter is put completely beyond doubt in the bill.
Could I turn to the substance of the amendments and the substance of the amendments fall into effectively three categories. First of all, the amendments moved by the noble Lord Lord Weir to the effect that certain motivations, if they exist, should ban or prohibit an assisted death. Secondly, an amendment that says that the only circumstances in which you can have an assisted death is when you're acting for your own sake, rather than for the benefit of others. And then the third category is where you are acting for the primary, primary purpose of avoiding physical pain.
So all of these amendments in this group are designed to try to limit it to certain pro permitted motivations only. Could I adopt completely the speech of the noble Lord, Lord Markham, who described what the Bill is seeking to do. It is seeking to give people who are diagnosed as having six months or less to live the choice about how their life ends in those six months, the choice they make may be motivated by a whole range of factors.
The pain may be too much. They may not be able to bear the thought of being reliant on their children, not because they see themselves as a burden, but because the whole change in the relationship is just unbearable. They may not want just to go through that period whilst they await death, and there is nothing else they may find the whole sense that they are incurring expenditure for somebody else, something that is so awful for them.
It makes them feel bad that they don't want to go through it. I go through all of these possibilities simply to indicate that the reason why you may want an assisted death may vary from person to person. From my own experience, it is very, very often what we would regard as pain and suffering that causes it. But what causes distress or unbearable to people is not always, and may not often be the pain or the suffering. It is the whole circumstances in which they find themselves during that last six months.
There's an incredibly good article by somebody whose mother, who had all the access to palliative care, said was awful about their circumstances, which was they were all the pain relief was there. They said goodbye. Everybody had come to say goodbye. And then weeks went by where there was nothing but staring at the wall. In a period of not quite being able to engage with other people and wanting it to end. Would they qualify if, for example, pain and suffering was the requirement? No pain would be identified.
The suffering would be the unbearable of it. This bill is constructed on the basis that the person who has got six months or less to live should have the choice. The idea that you bring in these particular things. Do they feel they're a burden to something? Somebody? Are there financial considerations that apply? Financial considerations might well apply because there is only a limited amount of money to go around. It might contribute. Is the panel or the doctor supposed to be parsing the precise part that every one of these motivations plays? In my view, that would be a very, very bad way of constructing the bill.
We have to, and I'm very happy to explain how I've got there. It is because I think it is choice. It is because pain and suffering will often be the choice. But I think if we are serious about putting the patient first, you've got to give them that choice and not be in a position where you're
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trying to look into a whole range of multiple motivations. I'm very grateful to the noble
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I'm very grateful to the noble and learned Lord for once again giving way. Can I just press him on giving way. Can I just press him on this choice point? Does he accept or I don't agree with the bill? If someone had a completely free choice, then there is an argument that can be made. But does he that can be made. But does he accept that there are many people in society that have many constraints on their ability to make choices? And what these amendments are trying to do is to make sure that they're making a free choice, not one that's being constrained by their other circumstances.
Does he accept that it's a problem if someone has all of these constraints on them, and they're not really making a free and unconstrained choice, which many people in this House would be able to make. Does he accept that that is a problem that potentially needs fixing may be difficult to fix, but does potentially need
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fixing? It's very. Difficult and would be inappropriate to try to examine inappropriate to try to examine exactly why people make particular choices. Look at the first one of choices. Look at the first one of the amendment 30 proposals. I don't want to be a burden on others or on public services. Why does the thought for some people that they are going to be a burden on their are going to be a burden on their children, become an unbearable thing for them to go through? They may make that choice because of what's gone on in their lives, but it's totally inappropriate and impossible in a bill such as this.
And it would be wrong to say you've got to. You've got to ask why they're in that position, the next one. A mental disorder, including sorry.
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Just to clarify. If the doctor
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Just to clarify. If the doctor was required to ask, required to ask what is your motivation? I thought he said, look, I just thought he said, look, I just really don't want to be a burden on my family, and it's just too intolerable. But they, you know, they've they've been told that they've they've been told that they're terminally ill relatively recently. Is it not possible that knowing that there could be knowing that there could be potentially an intervention that would say, well, maybe you won't be a burden, why don't you go and talk to them? Because one of the problems with the it's assumed the end point is there already.
Whereas if you ask the question, there's a possibility you can offer an alternative. And this is where people are saying, you know, somebody says, I can't face the pain. You can say there is pain relief available. I can't face. Now, that's not trying to undermine totally your bill, the bill, because it would be possible that if the doctor responds with some options, then you're on your way. Why don't you ask that motivation?
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Surely positive. OK. I think that's a very important question to which I will give an answer. There's a difference between excluding certain motivations, which is what motivations, which is what amendment 30 does, and asking the question why? Which Baroness Smith question why? Which Baroness Smith of Newnham raised. And I see force in the proposition that somewhere in the proposition that somewhere in the bill, somebody has got to ask why, for two reasons. First of all, as was said previously, if you ask why.
That may well throw some light on circumstances that might suggest classic coercion. And that was raised last time. And then secondly, and separately, it might it might deal with exactly what the Baroness Fox is referring to. So take an utterly absurd example. I want an assisted death because I cannot deal with the noise that's going on in my head. Well, actually, that's a building site which is going to stop tomorrow, something like that. And one should know. So I am attracted by the idea of something in the bill that says why that's got to be asked at somewhere down the line, and it also connects in, I think, with the discussions we've had previously about the multidisciplinary team that's engaged in looking after the person might well have a much better view about why.
But for the reasons I have given, I'm not in favour of trying to give specific, excluded motivations, nor am I in favour of saying it's got to be pain and suffering, or it's got to be for your own sake, because what is your own sake? How do you bear thinking about what your children feel at a particular? That could be an unbearable position?
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Just encourage. The noble and learned. Lord John what he's just said because he has pressed a point, because he has pressed a point, which for many of us and I was going to intervene earlier on, but decided I'd come to this moment. decided I'd come to this moment. And Baroness Whitaker actually drove me almost to get up, because the reality is, she can say that the reality is, she can say that she doesn't want to be a burden because she's not going to be a burden.
And I'm quite sure her burden. And I'm quite sure her family wouldn't let her be a burden. The truth of the matter is, we are concerned about making sure that people are given every opportunity to put themselves in the best position in those last six months of their lives. And if the noble Lord can find a way of being, having these questions asked without the disadvantage, which I understand he makes, it will give us a very great deal of support, and would I'd like him to do that.
Well.
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I hope I've been clear about not liking the amendments as they are. I hope I've been clear that what I hope I've been clear that what Baroness Smith of Newnham said, what Baroness Cox said as well, were useful. I'm keen to look at that and see how one can incorporate it somewhere in the bill, and it may well connect in bill, and it may well connect in with things that we've said already. I hope I've made my position clear. I would invite you, sir.
Sorry,
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sorry. My Lords, I feel a sense of disquiet listening to the noble Lords response, especially talking about privilege. I have a huge amount of privilege in my life. If I need a new wheelchair, I can buy it. I can put a lift in my house. I can buy a car. I can pay for the home controls. When I need a van with a tail lift, I can pay for that. So is the noble and learned Lord really saying that privilege, or even lack of privilege plays no part in somebody choosing to end
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their lives? I am saying everybody should
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I am saying everybody should have the choice. The way that one makes choices is inevitably determined by how one got to the determined by how one got to the point where one had to make the choice. But it's it's an impossible choice. But it's it's an impossible question. Why do we all make the choices? They're all affected. Some people make choices because they're richer or poorer than others, but richer or poorer than others, but I'm not in favour of drawing financial distinctions.
But as I hope, in the light of my remarks, the Baroness, I can't remember who started it. Sorry, my Lord Lord Weir will withdraw his amendment.
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Lord Porter order. I blame myself for this. Before
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I blame myself for this. Before the noble Lord sits down, noble and Lord sits down. He was about to say about the mental health issue. I then made a point and we've not gone back to it. I think that's a
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gone back to it. I think that's a very distinct question. Would you reflect. The way it's drafted? This is not this is not taking a
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This is not this is not taking a technical point. The way it's drafted is very confusing. If it's your mental illness that makes you come to this conclusion that that may well go to capacity. And I'm not clear what is being got at in relation to the mental health issue. But if the position is that you are, you may have a mental health condition, but you are perfectly capable of making a decision, then
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you should be allowed to make that decision. My Lords, the noble. Lord may be a bit premature at
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Lord may be a bit premature at the moment. Discussing amendment 33, in the name of Baroness Lawlor, and in the name of Baroness Lawlor, and it is for the noble Lady to to deal with her amendment.
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with her amendment. And I thank. All noble Lords. Who have contributed to this
16:34
Baroness Lawlor (Conservative)
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Baroness Lawlor (Conservative)
>> Who have contributed to this group. Is that. Are you asking me to respond? >> Sorry.
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Thank you. I thank all noble Lords who have contributed to this group. I'm very grateful for the group. I'm very grateful for the attention which has been focussed on the problems people face in on the problems people face in their lives, and particularly those who have exceptional difficulties who have exceptional difficulties in exercising the freedoms, the freedoms we all take. As has been freedoms we all take. As has been pointed out for granted, this this suite of amendments sought to try and restrict the possibility of others in the case in pressurising, particularly people in this very difficult position, from taking a decision to seek assisted suicide under the Bill which they might not otherwise have taken, had they had the support, and had they not had the disabilities which have been mentioned in these amendments.
They also seek to restrict this bill to those who wanted to seek who who wanted to relieve pain. Only, I'm afraid I have been a bit disappointed, if I may say, with the noble Lord, the sponsors, because the sponsor. Because in stressing autonomy and choice by one person, he is, I fear, perhaps inadvertently neglecting the autonomy and choice of those who may want to live with their disability, with whatever ailment they have been born with or developed over their life, but are facing terminal illness.
And because we are not, we are concentrating on the autonomy of the person and we are not giving enough attention. I fear in the bill to those who feel pressure, who feel a burden, who wish to avoid causing distress to those they love. And in doing so, we are doing a great disservice to the men and women of this country who feel like who who do not want to be a burden to those they love and have. That burden is increased by virtue of the costs of living, the difficulties they have in making choices.
And we're putting the choice of those who wanted, who have firm, clear and intent over those who may or may not wish to do it, but feel pressured for the reasons of their life and their circumstances for doing so. And I shall withdraw my amendment for now. But I would hope to bring it back if the noble Baroness Foster wishes to bring her back and support the others in this group.
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Thank you. I thank all noble Lords who have contributed to this group. I'm very grateful for the group. I'm very grateful for the attention which has been focussed on the problems people face in on the problems people face in their lives, and particularly those who have exceptional difficulties who have exceptional difficulties in exercising the freedoms, the freedoms we all take. As has been freedoms we all take. As has been pointed out for granted, this this suite of amendments sought to try and restrict the possibility of others in the case in pressurising, particularly people in this very difficult position, from taking a decision to seek assisted suicide under the Bill which they might not otherwise have taken, had they had the support, and had they not had the disabilities which have been mentioned in these amendments.
They also seek to restrict this bill to those who wanted to seek who who wanted to relieve pain. Only, I'm afraid I have been a bit disappointed, if I may say, with the noble Lord, the sponsors, because the sponsor. Because in stressing autonomy and choice by one person, he is, I fear, perhaps inadvertently neglecting the autonomy and choice of those who may want to live with their disability, with whatever ailment they have been born with or developed over their life, but are facing terminal illness.
And because we are not, we are concentrating on the autonomy of the person and we are not giving enough attention. I fear in the bill to those who feel pressure, who feel a burden, who wish to avoid causing distress to those they love. And in doing so, we are doing a great disservice to the men and women of this country who feel like who who do not want to be a burden to those they love and have. That burden is increased by virtue of the costs of living, the difficulties they have in making choices.
And we're putting the choice of those who wanted, who have firm, clear and intent over those who may or may not wish to do it, but feel pressured for the reasons of their life and their circumstances for doing so. And I shall withdraw my amendment for now. But I would hope to bring it back if the noble Baroness Foster wishes to bring her back and support the others in this group.
16:37
Lord Weir of Ballyholme (Democratic Unionist Party)
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Lord Weir of Ballyholme (Democratic Unionist Party)
My Lords, is it your pleasure that the amendment be withdrawn? Amendment is by leave withdrawn. We now return to amendment 30. Lord Weir of Ballyholme. So I just seek Weir of Ballyholme. So I just seek your guidance. Are you looking for me to sum up? OK, so that was a me to sum up? OK, so that was a little bit confused. I'm sorry to withdraw. Then I beg you to withdraw them. Is it your Lordships pleasure? The amendment be withdrawn. Amendment is by leave withdrawn.
Amendment 30 a already debated, not moved. Amendment 30 B already debated, not moved. Amendment 30 C already debated, not moved. Amendment 31 already debated. Not moved. Amendment 3032 already debated. Not moved. Amendment 33 already debated. Not moved. Amendment 34 Lord Frost. My Lords, I rise to.
Amendment 30 a already debated, not moved. Amendment 30 B already debated, not moved. Amendment 30 C already debated, not moved. Amendment 31 already debated. Not moved. Amendment 3032 already debated. Not moved. Amendment 33 already debated. Not moved. Amendment 34 Lord Frost. My Lords, I rise to.
16:38
Lord Frost (Non-affiliated)
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Lord Frost (Non-affiliated)
Introduce the four amendments which actually constitute in their entirety this this group amendments 30 4121138 and 153. And I'm very grateful to the noble Baroness Fox of Buckley, the noble Baroness Lawlor, and the noble Lord Harper for putting their name to these amendments. My Lords, may I begin by making a purely process point were the underlying change. I propose to find favour as the explanatory note in the Marshalled List makes clear, a large number of textual amendments would in fact be needed to ensure internal coherence within the Bill and for the convenience of the House.
I have not tabled all those amendments now, and in this sense my amendments are exploratory and probing the four specific amendments I have chosen, which are in the Marshall's list, have been chosen because they represent the first occasion on which of a particular type of change would be required. And to summarise, amendment 34 represents the first occasion in the bill on which the phrase I quote assistance to end their own life occurs. Amendment one two, one, similarly, is the first occasion in which the phrase voluntary assisted dying commissioner occurs 138.
The first occasion in which the phrase assisted dying review panel occurs, and one five, three is the first occasion in which the simple word assistance occurs, a word which is not in fact defined in isolation, but is taken to be short for the phrase provision of assistance to a person to end their own life. My Lords, now let me turn to the substance of these amendments. I put them forward for two major underlying reasons. The first is that it's bad for us as legislators to attempt to legislate in such ambiguous language.
And second, that such language actually substantively carries real risks for at least some who may wish to avail themselves of the provisions of this bill, or have it put to them that they should so avail themselves. All these amendments have one thing in common they replace phrases including the word assisted or assistance, with something much clearer and explicit reference to what's actually provided for in the bill. That is, the provision of, and I quote, medical help to commit suicide by the provision of lethal drugs.
Now, my Lords, I was well aware when I tabled these amendments and indeed some other noble Lords have subsequently mentioned to me that the phrase commit suicide raises particular wider issues. And I understand that, and I'll come back to it. But let me first proceed with the text as tabled. First of all, my Lords, this is a well understood principle in drafting legislation. And the noble Lord Lord Deben made this point earlier today that it should be unambiguously clear now in the text of this bill, what we have is a phrase which covers a wide range of possible meanings the core phrase assistance to end their own life could be read in a wide variety of ways.
It could be read as meaning making somebody comfortable in their last hours. It could be read as withdrawing food and drink in a medical setting. It could even be read as an actual act of killing by another party at the request of the individual concerned. And it could be read as many other things too, including, of course, the thing that is actually provided for by this bill. Now, the poll is about this bill. The discussion around this bill shows there are many misunderstandings about what it does and what it allows.
And survey and experimental research shows that public responses to questions about legality and support are very sensitive to the wording chosen, and that's why it's important to be clear now, my amendment would do that by providing clear language, possibly language that would be regarded by some as forceful but nevertheless clear. That is, that
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the Bill. Is the noble law. This is quite important for the debate. Is the important for the debate. Is the noble Lord saying his amendments? And I take it that they're simply And I take it that they're simply exemplar ones change the meaning of the bill, or is it just for the purposes of, as it were, better
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public understanding? Thank you for that intervention.
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Thank you for that intervention. Yes. They intended to clarify what the bill actually provides for. I'll explain further. The provision of medical help to commit suicide by the provision of lethal drugs is what the bill does. That is what it does. And that's what it should say that it does. And I would say in passing is particularly important since the bill leaves so much to delegate powers that we should be unambiguous about the particular power that's provided for now.
Second, this House and this Parliament should always be clear to ourselves what we are doing when we're legislating. We should try and avoid euphemism and where we deal with difficult topics. I think it's good to avoid distancing ourselves from uncomfortable realities in legislation by using abstractions. And here I refer to the 2024 guidance to Parliamentary Draughtsman, which says and I quote right in Modern Standard English, using vocabulary which reflects ordinary general usage. It goes on to say you should use precise and concrete words rather than vague and abstract words.
End quote. Now it's noticeable. The most common term in this bill for the activity for which it provides is the single word assistance. The common meaning of that word, I think, is fair to say, does not include providing for the death of an individual. In this bill. That word has become a euphemistic term of art. Indeed, it's easy to imagine it becoming a jargon word in which a practitioner says to a patient, have you thought of asking for assistance as a comfortable way to suggest to vulnerable people that taking their own life might not be something to be too concerned about, or even, in the worst case, almost hide from them in the initial discussion, what's actually being discussed.
And we can see, I think, the distancing function of this word, the Latinate word assistance, if we replace it, as my amendment does with the Anglo-Saxon word help. If the bill used that word, the jarring nature of the contrast between that word and the action which is provided for by the bill would, I think, be too great to bear. Now, I won't go into detail for reasons of time, but of course, exactly the same concerns arise from the bill's use of the phrase quote approved substance when what is meant as a lethal drug.
Now, my Lords, activities involving uncomfortable and even frowned upon measures, especially when they involve killing, have, of course, often been subject to euphemism. And the inclusion of euphemism in this bill is, to me, a troubling and worrying sign about the degree to which the bill's proponents are genuinely ready to defend in public the specifics of what they are advocating in this bill, and I suggest that we should avoid those risks. We should avoid those concerns by being clear and unambiguous about what is involved.
Third, my Lords, there is a genuine risk of misunderstanding. We've discussed already the importance of informed consent, and especially for vulnerable groups. And I suggest that if the language we use in the legislation is not clear, then there is a real risk that, for example, non-native English speakers, ESL speakers, vulnerable groups of all kinds, people living with autism who struggle, perhaps with ambiguity or allusion, will also not understand precisely what's involved, especially given the natural human tendency to shy away from realities at moments of real crisis.
And again, I won't quote them for reasons of time, but several witnesses of various stages in this process have raised concerns on this point. And once again, my Lords, the logic points to providing for absolute clarity. Fourth, and finally, there is the question of the relationship with the existing statute book. And there are two angles to this. First of all, the use of the word suicide, which this bill carefully avoids except in the sole context of the necessary amendments to the Suicide Act 1961.
That is clause 32. Now, it's been said before, but it bears repeating that the fact that an amendment to this act is necessary is surely the clearest evidence that the bill provides for a means of committing suicide, and therefore that it is appropriate to use that term more generally in the bill. Now, of course, clause 32 attempts to sidestep this problem by distinguishing suicide from assistance in its proposed amendment to the suicide Act, and thus introduces the ambiguity that, as I've noted, we should be seeking to avoid.
In fact, all that is needed to do what the Draughters want. What the draughters want is to exclude from the suicide act any functions performed under this bill. If it were to become law, that would be clearest and that would be simplest. Now the second aspect come back to the point I touched on and foreshadowed earlier is the use of the specific phrase commit suicide. Now, of course, it is true that perceptions and societal assumptions have moved on since the 1961 act.
It may well be that it would be reasonable to use a slightly different form of words to the specifics in my amendment, in order to avoid any impression that we consider suicide as such to be a crime. And even though the suicide act is actually clear on this point, I quote the rule of law, whereby it is a crime for a person to commit suicide, is hereby abrogated. It says, I understand nevertheless, that other phrases, for example, die by suicide could be preferable, and I think that would be a perfectly reasonable discussion to have.
But the crucial thing is the meaning should be clear. The word should be used, and the proposed means of carrying out what is provided for in this bill should be unambiguous. Otherwise, we are retreating from reality now. So to conclude, my Lords, I hope I set out enough evidence to show that these amendments are more than terminological and they are more than debating points. They're not put forward to antagonise, they're not put forward to annoy. They are put forward to deal with genuine concerns about the clarity of this legislation, what it will do if it comes into force, and about the way in which euphemism can have a genuine substantive effect on the way the bill is perceived and eventually used.
So I hope that the bill's proponents and the sponsor might be open to some reflection on this point, and specifically to considering whether it would be better to use clearer language language that is used elsewhere on the statute book, language that could help deal with the points. I've touched on some of the other concerns that we've had about the way this bill will be implemented in practice. Give me for interrupting you. I don't want to take time, but the noble Lord is now giving us a lesson in Anglo-Saxon and in Celtic and Latin and indeed Old German as well as Middle English.
I do think we're missing the point. We need to move on. Surely he's been 12 over 12 minutes on this speech, and it's beyond what we would accept. I think at this stage of the day. I think I'm allowed 15 minutes, actually, and I don't think I mentioned Celtic either, just on a point of detail, but but but letting aside, I was reaching my in fact, I had already delivered my peroration. But I hope, as I said, the proponents might be open to some flexion on this point.
And
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meanwhile I beg to move. Amendment proposed clause one, page one. Line 13. Leave out the page one. Line 13. Leave out the words assistance to end their own life and insert the words medical life and insert the words medical help to commit suicide by provision of lethal drugs. Can I just point out to the committee that if out to the committee that if amendment 34 were to be accepted, it would pre-empt amendment 35, which leads the next group? And which leads the next group? And secondly, the noble Lord, Lord Lord Shinkwin, is taking part remotely.
And I now invite the noble Lord to address us.
I have not tabled all those amendments now, and in this sense my amendments are exploratory and probing the four specific amendments I have chosen, which are in the Marshall's list, have been chosen because they represent the first occasion on which of a particular type of change would be required. And to summarise, amendment 34 represents the first occasion in the bill on which the phrase I quote assistance to end their own life occurs. Amendment one two, one, similarly, is the first occasion in which the phrase voluntary assisted dying commissioner occurs 138.
The first occasion in which the phrase assisted dying review panel occurs, and one five, three is the first occasion in which the simple word assistance occurs, a word which is not in fact defined in isolation, but is taken to be short for the phrase provision of assistance to a person to end their own life. My Lords, now let me turn to the substance of these amendments. I put them forward for two major underlying reasons. The first is that it's bad for us as legislators to attempt to legislate in such ambiguous language.
And second, that such language actually substantively carries real risks for at least some who may wish to avail themselves of the provisions of this bill, or have it put to them that they should so avail themselves. All these amendments have one thing in common they replace phrases including the word assisted or assistance, with something much clearer and explicit reference to what's actually provided for in the bill. That is, the provision of, and I quote, medical help to commit suicide by the provision of lethal drugs.
Now, my Lords, I was well aware when I tabled these amendments and indeed some other noble Lords have subsequently mentioned to me that the phrase commit suicide raises particular wider issues. And I understand that, and I'll come back to it. But let me first proceed with the text as tabled. First of all, my Lords, this is a well understood principle in drafting legislation. And the noble Lord Lord Deben made this point earlier today that it should be unambiguously clear now in the text of this bill, what we have is a phrase which covers a wide range of possible meanings the core phrase assistance to end their own life could be read in a wide variety of ways.
It could be read as meaning making somebody comfortable in their last hours. It could be read as withdrawing food and drink in a medical setting. It could even be read as an actual act of killing by another party at the request of the individual concerned. And it could be read as many other things too, including, of course, the thing that is actually provided for by this bill. Now, the poll is about this bill. The discussion around this bill shows there are many misunderstandings about what it does and what it allows.
And survey and experimental research shows that public responses to questions about legality and support are very sensitive to the wording chosen, and that's why it's important to be clear now, my amendment would do that by providing clear language, possibly language that would be regarded by some as forceful but nevertheless clear. That is, that
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the Bill. Is the noble law. This is quite important for the debate. Is the important for the debate. Is the noble Lord saying his amendments? And I take it that they're simply And I take it that they're simply exemplar ones change the meaning of the bill, or is it just for the purposes of, as it were, better
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public understanding? Thank you for that intervention.
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Thank you for that intervention. Yes. They intended to clarify what the bill actually provides for. I'll explain further. The provision of medical help to commit suicide by the provision of lethal drugs is what the bill does. That is what it does. And that's what it should say that it does. And I would say in passing is particularly important since the bill leaves so much to delegate powers that we should be unambiguous about the particular power that's provided for now.
Second, this House and this Parliament should always be clear to ourselves what we are doing when we're legislating. We should try and avoid euphemism and where we deal with difficult topics. I think it's good to avoid distancing ourselves from uncomfortable realities in legislation by using abstractions. And here I refer to the 2024 guidance to Parliamentary Draughtsman, which says and I quote right in Modern Standard English, using vocabulary which reflects ordinary general usage. It goes on to say you should use precise and concrete words rather than vague and abstract words.
End quote. Now it's noticeable. The most common term in this bill for the activity for which it provides is the single word assistance. The common meaning of that word, I think, is fair to say, does not include providing for the death of an individual. In this bill. That word has become a euphemistic term of art. Indeed, it's easy to imagine it becoming a jargon word in which a practitioner says to a patient, have you thought of asking for assistance as a comfortable way to suggest to vulnerable people that taking their own life might not be something to be too concerned about, or even, in the worst case, almost hide from them in the initial discussion, what's actually being discussed.
And we can see, I think, the distancing function of this word, the Latinate word assistance, if we replace it, as my amendment does with the Anglo-Saxon word help. If the bill used that word, the jarring nature of the contrast between that word and the action which is provided for by the bill would, I think, be too great to bear. Now, I won't go into detail for reasons of time, but of course, exactly the same concerns arise from the bill's use of the phrase quote approved substance when what is meant as a lethal drug.
Now, my Lords, activities involving uncomfortable and even frowned upon measures, especially when they involve killing, have, of course, often been subject to euphemism. And the inclusion of euphemism in this bill is, to me, a troubling and worrying sign about the degree to which the bill's proponents are genuinely ready to defend in public the specifics of what they are advocating in this bill, and I suggest that we should avoid those risks. We should avoid those concerns by being clear and unambiguous about what is involved.
Third, my Lords, there is a genuine risk of misunderstanding. We've discussed already the importance of informed consent, and especially for vulnerable groups. And I suggest that if the language we use in the legislation is not clear, then there is a real risk that, for example, non-native English speakers, ESL speakers, vulnerable groups of all kinds, people living with autism who struggle, perhaps with ambiguity or allusion, will also not understand precisely what's involved, especially given the natural human tendency to shy away from realities at moments of real crisis.
And again, I won't quote them for reasons of time, but several witnesses of various stages in this process have raised concerns on this point. And once again, my Lords, the logic points to providing for absolute clarity. Fourth, and finally, there is the question of the relationship with the existing statute book. And there are two angles to this. First of all, the use of the word suicide, which this bill carefully avoids except in the sole context of the necessary amendments to the Suicide Act 1961.
That is clause 32. Now, it's been said before, but it bears repeating that the fact that an amendment to this act is necessary is surely the clearest evidence that the bill provides for a means of committing suicide, and therefore that it is appropriate to use that term more generally in the bill. Now, of course, clause 32 attempts to sidestep this problem by distinguishing suicide from assistance in its proposed amendment to the suicide Act, and thus introduces the ambiguity that, as I've noted, we should be seeking to avoid.
In fact, all that is needed to do what the Draughters want. What the draughters want is to exclude from the suicide act any functions performed under this bill. If it were to become law, that would be clearest and that would be simplest. Now the second aspect come back to the point I touched on and foreshadowed earlier is the use of the specific phrase commit suicide. Now, of course, it is true that perceptions and societal assumptions have moved on since the 1961 act.
It may well be that it would be reasonable to use a slightly different form of words to the specifics in my amendment, in order to avoid any impression that we consider suicide as such to be a crime. And even though the suicide act is actually clear on this point, I quote the rule of law, whereby it is a crime for a person to commit suicide, is hereby abrogated. It says, I understand nevertheless, that other phrases, for example, die by suicide could be preferable, and I think that would be a perfectly reasonable discussion to have.
But the crucial thing is the meaning should be clear. The word should be used, and the proposed means of carrying out what is provided for in this bill should be unambiguous. Otherwise, we are retreating from reality now. So to conclude, my Lords, I hope I set out enough evidence to show that these amendments are more than terminological and they are more than debating points. They're not put forward to antagonise, they're not put forward to annoy. They are put forward to deal with genuine concerns about the clarity of this legislation, what it will do if it comes into force, and about the way in which euphemism can have a genuine substantive effect on the way the bill is perceived and eventually used.
So I hope that the bill's proponents and the sponsor might be open to some reflection on this point, and specifically to considering whether it would be better to use clearer language language that is used elsewhere on the statute book, language that could help deal with the points. I've touched on some of the other concerns that we've had about the way this bill will be implemented in practice. Give me for interrupting you. I don't want to take time, but the noble Lord is now giving us a lesson in Anglo-Saxon and in Celtic and Latin and indeed Old German as well as Middle English.
I do think we're missing the point. We need to move on. Surely he's been 12 over 12 minutes on this speech, and it's beyond what we would accept. I think at this stage of the day. I think I'm allowed 15 minutes, actually, and I don't think I mentioned Celtic either, just on a point of detail, but but but letting aside, I was reaching my in fact, I had already delivered my peroration. But I hope, as I said, the proponents might be open to some flexion on this point.
And
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meanwhile I beg to move. Amendment proposed clause one, page one. Line 13. Leave out the page one. Line 13. Leave out the words assistance to end their own life and insert the words medical life and insert the words medical help to commit suicide by provision of lethal drugs. Can I just point out to the committee that if out to the committee that if amendment 34 were to be accepted, it would pre-empt amendment 35, which leads the next group? And which leads the next group? And secondly, the noble Lord, Lord Lord Shinkwin, is taking part remotely.
And I now invite the noble Lord to address us.
16:51
Lord Shinkwin (Conservative)
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Lord Shinkwin (Conservative)
Lord Stern Lord Patten by very quickly welcoming the noble Baroness Neate example of symptom back, and thank her for reminding us so eloquently why we have missed her contributions. I rise to speak to amendment 34, and I thank my little friend Lord Frost to Cabinet and for his excellent speech. My Lords, I also thanked the noble and learned Lord Boyd Lord Falconer of Thoroton for his past commitment to ensuring the law is to stated as clearly as possible by removing the Latin names of the prerogative writs through the civil procedure, modification of Supreme Court Act 1981 order 2004 two.
I asked if he could explain in his closing remarks why, 22 years later, he appears to have changed his mind on the guiding principle, which I assume informs his earlier decision that the law should be accessible and unambiguous. Or perhaps, and maybe he could clarify this in his closing remarks. Perhaps he now believes it should only be accessible to some, and for others, it's fine for it to be clouded or shrouded might be more appropriate, given the fatal consequences of an ill informed decision on assisted death shrouded in euphemism.
Nuance and even deceit. After all, those with a learning disability or down syndrome, for example. Well, barring disabled people, aren't they? What does it matter if their disability means they cannot quite grasp the enormity, the finality, the irreversibility of the decision to seek, as my Noble Friends Amendment states, help to commit suicide by provision of lethal drugs. My Lords, we know that language matters. But do we know how much it matters to those whose disabilities make them? Understand less, or make comprehension challenging? And in the case of Down's syndrome, those whose innate desire to please makes them more prone to agreeing with the question, especially when its implications are not fully grasped.
I hope the Noble and Leonard Lords will accept this amendment and thereby protect not only those whose disabilities make full comprehension difficult, but also the reputation of your Lordships House. My Lords, let it never be fought that we don't care if those whose disability related needs for the clarity provided in my little friends amendment are somehow misled to death because of nuance, I hope the noble and learned Lords will show. That will show by accepting this amendment that those whose disabilities make them particularly vulnerable to ambiguity must not be treated as ambiguity must not be treated as unfortunate.
Collateral damage.
I asked if he could explain in his closing remarks why, 22 years later, he appears to have changed his mind on the guiding principle, which I assume informs his earlier decision that the law should be accessible and unambiguous. Or perhaps, and maybe he could clarify this in his closing remarks. Perhaps he now believes it should only be accessible to some, and for others, it's fine for it to be clouded or shrouded might be more appropriate, given the fatal consequences of an ill informed decision on assisted death shrouded in euphemism.
Nuance and even deceit. After all, those with a learning disability or down syndrome, for example. Well, barring disabled people, aren't they? What does it matter if their disability means they cannot quite grasp the enormity, the finality, the irreversibility of the decision to seek, as my Noble Friends Amendment states, help to commit suicide by provision of lethal drugs. My Lords, we know that language matters. But do we know how much it matters to those whose disabilities make them? Understand less, or make comprehension challenging? And in the case of Down's syndrome, those whose innate desire to please makes them more prone to agreeing with the question, especially when its implications are not fully grasped.
I hope the Noble and Leonard Lords will accept this amendment and thereby protect not only those whose disabilities make full comprehension difficult, but also the reputation of your Lordships House. My Lords, let it never be fought that we don't care if those whose disability related needs for the clarity provided in my little friends amendment are somehow misled to death because of nuance, I hope the noble and learned Lords will show. That will show by accepting this amendment that those whose disabilities make them particularly vulnerable to ambiguity must not be treated as ambiguity must not be treated as unfortunate.
Collateral damage.
16:56
Baroness Fox of Buckley (Non-affiliated)
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Baroness Fox of Buckley (Non-affiliated)
And, my Lords, I signed the >> And, my Lords, I signed the noble Lord Frost amendments to probe the ways that we can make this bill more transparent to the this bill more transparent to the public. That's was my main driver. I believe, in plain speaking, and the public, I think, deserve. Yes, I know I thought about that line, but anyway. Right. Anyway, the public deserve to know what this bill involves. And as it happens, I think the noble Lord Lord Frost wording adds clarity.
The noble Lords proposal is to replace assistance to end their own life with medical help, to commit suicide by provision to lethal drugs. Now that wording is factually accurate, even if it makes you gulp. But the reason it makes one gulp is because it's factually accurate, and we don't often recognise what's being advocated here. And I think there is a danger that the bill's terminology creates ambiguity rather than clarity. And I think it's important that we're frank and that we're open.
Now, why use the word suicide? As I've as has already been explained, the bill does need to amend the suicide act precisely in order to carve out the legal space to allow this type of assisted suicide, as mentioned in the bill, to be within the law. That's accurate, but I am wary, of course, of having a culture war over the word suicide. And I have to say that I use the term assisted dying all the time. Right? So it's not as though we called out for hypocrisy here, because I am aware of the fact that suicide as an issue is far too serious and tragic to be glib about, or to have a kind of verbal ping pong.
But on the other hand, I'm worried that avoiding the word suicide in this debate and actually making it verboten might actually desensitise public debate. Because, let's be honest, language choice can influence opinion. Assisted dying sounds softer, more palatable, more sympathetic. And it is interesting that evidence shows that support for assisted dying changes. If you call it assisted suicide, it drops significantly when the terms are plainly defined. And of course, some may flinch at the words that used by the noble Lord Lord Frost medical help to commit suicide with lethal drugs.
And as I've said, it's hard to accept that you think what? There's going to be a complete change in the way medicine is operated, and your medics could hand you poison and lethal drugs? Yes, is the answer. And I think when people hear that phrase, it might hit them. What a fundamental shift that means for medical professions and so on. And that's exactly why a number of us are not prepared to just nod this bill through, because it's perfectly reasonable to completely disagree with what I've just said.
But I want everyone to know what the bill is about and why. It's a very big change in our society in all sorts of ethical discussions. And the public, the public deserve to know that, and therefore we should be as clear as possible. Now, I do recall from the first day of committee and subsequently, but particularly on the first day, there was a lot of tut tutting and reprimands. I was a lot of people being shouted at when peers used the term assisted suicide.
There was a lot of people standing up saying, you can't say that, but I you can't say that is, you know, you're just being emotional, manipulative and so on. And but I do think that clear language promotes, as I say, promotes public and patient understanding. And I'm advocating, in a way, a patient centric approach rather than a euphemistic approach, which could arguably be seen as an act of misinformation in some instances. But also, I would like to ask the noble Lords who is sponsoring the or supporting the bill, why they're so defensive.
Because Dignitas actually offers physician assisted suicide. And in fact, the World Federation of the right to the Right to Die societies talks about assisted suicide in terms of describing the distribution of the drugs that will cause the death of a person. The term assisted suicide is used in Switzerland, Austria and the Netherlands. So, you know, that's what it is. That's what I think we should call it. Now, the final thing is, is that people, we are told, who are dying, are not committing suicide and are she's in her seat.
The noble Lady, Baroness Hayter has consistently said suicide is different to assisted dying. It can't be assisted suicide because people who want assisted dying are already dying and therefore they can't commit suicide. That's more or less it. You're dying anyway, so you're not being driven by despair. But this is an active, positive choice. Or though so far in the bill, we wouldn't know that because we're not allowed to ask motives. But anyway, nonetheless, you know, you're driven by that. But there are two problems.
It seems obvious to me in relation to this. If a person is dying and go to the trouble of organising to obtain and ingest a lethal substances poison, that is suicide, that is an accurate use of language. It's not a moral, it's just a point. By removing the word suicide from the discussion, though, there's another danger because advocates of this bill, without saying the s word, nonetheless argue that assistance in ending one's life can be, in certain circumstances, dignified, a positive choice, a happy release.
And I'm afraid that normalises taking one's own life. And even if you don't use the S word, that is the sort of thing I associate with the propaganda on Pro-suicide pro self-harm sites rather than associated with a bill such as this. So I would suggest that the normalisation and even the the glamorisation of taking one's life as a happy end result is not something we should do, and therefore I'd at least like to call it suicide. So people might go and
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think again, my Lord. I. Thought, My Lords. Can I just just interject to
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Can I just just interject to help the house? It's just gone 5:00 now. We basically have two options. now. We basically have two options. Both involve us finishing a 530. We can either carry on this debate. It's absolutely fine. We've It's absolutely fine. We've recorded a number of Lords who are present, and we can then move to adjourn the House and convenient point around 530. Alternatively, if point around 530. Alternatively, if he's coming to an end, we can hear the frontbench speeches and then return at 530.
I don't mind what we do, but we are going to adjourn at 530 and it's in the hands of the House. Yeah, yeah. Sorry.
The noble Lords proposal is to replace assistance to end their own life with medical help, to commit suicide by provision to lethal drugs. Now that wording is factually accurate, even if it makes you gulp. But the reason it makes one gulp is because it's factually accurate, and we don't often recognise what's being advocated here. And I think there is a danger that the bill's terminology creates ambiguity rather than clarity. And I think it's important that we're frank and that we're open.
Now, why use the word suicide? As I've as has already been explained, the bill does need to amend the suicide act precisely in order to carve out the legal space to allow this type of assisted suicide, as mentioned in the bill, to be within the law. That's accurate, but I am wary, of course, of having a culture war over the word suicide. And I have to say that I use the term assisted dying all the time. Right? So it's not as though we called out for hypocrisy here, because I am aware of the fact that suicide as an issue is far too serious and tragic to be glib about, or to have a kind of verbal ping pong.
But on the other hand, I'm worried that avoiding the word suicide in this debate and actually making it verboten might actually desensitise public debate. Because, let's be honest, language choice can influence opinion. Assisted dying sounds softer, more palatable, more sympathetic. And it is interesting that evidence shows that support for assisted dying changes. If you call it assisted suicide, it drops significantly when the terms are plainly defined. And of course, some may flinch at the words that used by the noble Lord Lord Frost medical help to commit suicide with lethal drugs.
And as I've said, it's hard to accept that you think what? There's going to be a complete change in the way medicine is operated, and your medics could hand you poison and lethal drugs? Yes, is the answer. And I think when people hear that phrase, it might hit them. What a fundamental shift that means for medical professions and so on. And that's exactly why a number of us are not prepared to just nod this bill through, because it's perfectly reasonable to completely disagree with what I've just said.
But I want everyone to know what the bill is about and why. It's a very big change in our society in all sorts of ethical discussions. And the public, the public deserve to know that, and therefore we should be as clear as possible. Now, I do recall from the first day of committee and subsequently, but particularly on the first day, there was a lot of tut tutting and reprimands. I was a lot of people being shouted at when peers used the term assisted suicide.
There was a lot of people standing up saying, you can't say that, but I you can't say that is, you know, you're just being emotional, manipulative and so on. And but I do think that clear language promotes, as I say, promotes public and patient understanding. And I'm advocating, in a way, a patient centric approach rather than a euphemistic approach, which could arguably be seen as an act of misinformation in some instances. But also, I would like to ask the noble Lords who is sponsoring the or supporting the bill, why they're so defensive.
Because Dignitas actually offers physician assisted suicide. And in fact, the World Federation of the right to the Right to Die societies talks about assisted suicide in terms of describing the distribution of the drugs that will cause the death of a person. The term assisted suicide is used in Switzerland, Austria and the Netherlands. So, you know, that's what it is. That's what I think we should call it. Now, the final thing is, is that people, we are told, who are dying, are not committing suicide and are she's in her seat.
The noble Lady, Baroness Hayter has consistently said suicide is different to assisted dying. It can't be assisted suicide because people who want assisted dying are already dying and therefore they can't commit suicide. That's more or less it. You're dying anyway, so you're not being driven by despair. But this is an active, positive choice. Or though so far in the bill, we wouldn't know that because we're not allowed to ask motives. But anyway, nonetheless, you know, you're driven by that. But there are two problems.
It seems obvious to me in relation to this. If a person is dying and go to the trouble of organising to obtain and ingest a lethal substances poison, that is suicide, that is an accurate use of language. It's not a moral, it's just a point. By removing the word suicide from the discussion, though, there's another danger because advocates of this bill, without saying the s word, nonetheless argue that assistance in ending one's life can be, in certain circumstances, dignified, a positive choice, a happy release.
And I'm afraid that normalises taking one's own life. And even if you don't use the S word, that is the sort of thing I associate with the propaganda on Pro-suicide pro self-harm sites rather than associated with a bill such as this. So I would suggest that the normalisation and even the the glamorisation of taking one's life as a happy end result is not something we should do, and therefore I'd at least like to call it suicide. So people might go and
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think again, my Lord. I. Thought, My Lords. Can I just just interject to
**** Possible New Speaker ****
Can I just just interject to help the house? It's just gone 5:00 now. We basically have two options. now. We basically have two options. Both involve us finishing a 530. We can either carry on this debate. It's absolutely fine. We've It's absolutely fine. We've recorded a number of Lords who are present, and we can then move to adjourn the House and convenient point around 530. Alternatively, if point around 530. Alternatively, if he's coming to an end, we can hear the frontbench speeches and then return at 530.
I don't mind what we do, but we are going to adjourn at 530 and it's in the hands of the House. Yeah, yeah. Sorry.
17:03
Baroness Lawlor (Conservative)
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Baroness Lawlor (Conservative)
I. >> I. >> In support of Lord Frost motion, to which I have added my name and I agree with what has been said. I agree with what has been said. I agree with the need to avoid euphemism Lord Frost raise the euphemism Lord Frost raise the point. And Baroness Buckley came back to it that some will object to the phrase commit suicide. But I'd like to make a stronger case on that point. I do think that regard to many cases of suicide, these reservations would be just commit implies clear intention by the person concerned to take his own or her own life.
But as we've heard throughout this debate on the bill so far, suicide can be the result. Not so much of firm and clear intent, but of the perpetrator sliding inexorably into hopelessness about the circumstances of their own lives, often prompted by lack of help. If the inability to cope with such misfortune leads to depression and suicide, it is misleading. I agree to talk of committing suicide, but the cases envisioned in this bill are quite different.
As the bill makes clear, the person must have a clear, settled and informed wish to commit suicide here. Then commit suicide is indeed the appropriate phrase. Moreover, the language in which the bill is now phrased in terms of assistance to end one's own life carries, as has been said, a risk of confusion between what the bill proposes and the deliberate action to bring life to an end, and the normal practice of doctors. As Baroness Finlay has mentioned earlier, which is to ease their suffering and sometimes use palliative measures that might, although this is not their aim, shorten life.
The advocates of this term of the bill have also spoken in a way that blurs this distinction. It is important that the phrasing of the bill itself guards against such confusion.
But as we've heard throughout this debate on the bill so far, suicide can be the result. Not so much of firm and clear intent, but of the perpetrator sliding inexorably into hopelessness about the circumstances of their own lives, often prompted by lack of help. If the inability to cope with such misfortune leads to depression and suicide, it is misleading. I agree to talk of committing suicide, but the cases envisioned in this bill are quite different.
As the bill makes clear, the person must have a clear, settled and informed wish to commit suicide here. Then commit suicide is indeed the appropriate phrase. Moreover, the language in which the bill is now phrased in terms of assistance to end one's own life carries, as has been said, a risk of confusion between what the bill proposes and the deliberate action to bring life to an end, and the normal practice of doctors. As Baroness Finlay has mentioned earlier, which is to ease their suffering and sometimes use palliative measures that might, although this is not their aim, shorten life.
The advocates of this term of the bill have also spoken in a way that blurs this distinction. It is important that the phrasing of the bill itself guards against such confusion.
17:05
Baroness Royall of Blaisdon (Labour)
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Baroness Royall of Blaisdon (Labour)
I come to this, and I recognise that the Baroness Fox will have that the Baroness Fox will have heard this before, as many others. But the fact of the matter is that the Bill talks about assisted dying. the Bill talks about assisted dying. I think dying, you know, tells you what it's all about. So I don't think we need to have the word suicide. But also I come to what I'm going to say because I have spoken with the families and loved ones of people who wish to have an assisted death, those who wish that their loved ones had had an assisted death because they could see the suffering endured by the person who died, but also the people who were caring for them, and also those who, those who, those who are left behind.
So I've had many conversations and they all feel very strongly that the people who want to have an assisted death, they are not committed suicide, committing suicide, they want to regain some control. They want to live for the last few months of their life with some comfort, just because they ask for an assisted death doesn't mean to say that they're going to actually fulfil that, but it gives them comfort and it gives their families comfort. So please, please, can we not talk about suicide? We are talking about dying and that's absolutely fine.
But I do not wish the people who are suffering already to have more distress in their lives. Forgive me or the people who are caring for them.
So I've had many conversations and they all feel very strongly that the people who want to have an assisted death, they are not committed suicide, committing suicide, they want to regain some control. They want to live for the last few months of their life with some comfort, just because they ask for an assisted death doesn't mean to say that they're going to actually fulfil that, but it gives them comfort and it gives their families comfort. So please, please, can we not talk about suicide? We are talking about dying and that's absolutely fine.
But I do not wish the people who are suffering already to have more distress in their lives. Forgive me or the people who are caring for them.
17:07
Lord Moore of Etchingham (Non-affiliated)
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Lord Moore of Etchingham (Non-affiliated)
Yeah, yeah. >> Yeah, yeah. >> So I. >> Find it strange that the noble
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Find it strange that the noble Lady, Baroness Royal, should be making this argument that the word making this argument that the word dying tells us all that we need to know. If that were so, we wouldn't need this bill. We we this bill is about a very specific thing, which is which is choosing to end your own life and getting help with it. And I think the importance of clarity and frankness in language in the making of law is very great, and it must be distinguished from perfectly legitimate, what you might call political language.
So take, for example, the right to life, which is one side of the argument in in another matter and the right to choice. Those are both phrases which are perfectly good phrases, but about about the subject of abortion. But they were not suitable phrases for law. When you're talking about law, the word that should be used is abortion. That's what that is, what's actually happening. And I'm not I'm not saying there's any dishonesty here, but I think there is. It's inappropriate for the making of law.
And then I think there really is very strongly support what the noble Lord Lord Frost said about possible ambiguities and misunderstandings. And let me give an example, which is nothing whatever to do with assisted dying, but it just illustrates in the 1983 general election, as we ran up to it, Labour had a policy of unilateral disarmament, and the Tories were against unilateral nuclear disarmament and attacked it. And then somebody wrote a letter to the Daily Telegraph and said, I don't think people know what the word unilateral means.
And if you call it one sided disarmament, people will understand what this is about. And the Tories sees that and suddenly changed all their propaganda to talk about one sided disarmament. And the polls shifted very dramatically in favour of being against one sided disarmament. And so the importance of the actual normal English is very significant here. And I think we can see again and again confusion about what is actually proposed by this bill, public confusion which must be avoided.
And the final point I want to make is I think there's a contradiction in the arguments made by supporters of the bill about this, because it seems to me that and again, I think noble Lady Baroness Royall was in this situation. It seems to me that since the greatest thing that is being argued for by the support of the Bill is autonomy, it's very important to have a word or a phrase which embodies that autonomy and shows who's making this decision, shows whose agency it is, and the phrase committing suicide exactly establishes the agency exactly shows the autonomy.
So I think it's very contradictory to advocate autonomy and then take refuge in euphemism.
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Find it strange that the noble Lady, Baroness Royal, should be making this argument that the word making this argument that the word dying tells us all that we need to know. If that were so, we wouldn't need this bill. We we this bill is about a very specific thing, which is which is choosing to end your own life and getting help with it. And I think the importance of clarity and frankness in language in the making of law is very great, and it must be distinguished from perfectly legitimate, what you might call political language.
So take, for example, the right to life, which is one side of the argument in in another matter and the right to choice. Those are both phrases which are perfectly good phrases, but about about the subject of abortion. But they were not suitable phrases for law. When you're talking about law, the word that should be used is abortion. That's what that is, what's actually happening. And I'm not I'm not saying there's any dishonesty here, but I think there is. It's inappropriate for the making of law.
And then I think there really is very strongly support what the noble Lord Lord Frost said about possible ambiguities and misunderstandings. And let me give an example, which is nothing whatever to do with assisted dying, but it just illustrates in the 1983 general election, as we ran up to it, Labour had a policy of unilateral disarmament, and the Tories were against unilateral nuclear disarmament and attacked it. And then somebody wrote a letter to the Daily Telegraph and said, I don't think people know what the word unilateral means.
And if you call it one sided disarmament, people will understand what this is about. And the Tories sees that and suddenly changed all their propaganda to talk about one sided disarmament. And the polls shifted very dramatically in favour of being against one sided disarmament. And so the importance of the actual normal English is very significant here. And I think we can see again and again confusion about what is actually proposed by this bill, public confusion which must be avoided.
And the final point I want to make is I think there's a contradiction in the arguments made by supporters of the bill about this, because it seems to me that and again, I think noble Lady Baroness Royall was in this situation. It seems to me that since the greatest thing that is being argued for by the support of the Bill is autonomy, it's very important to have a word or a phrase which embodies that autonomy and shows who's making this decision, shows whose agency it is, and the phrase committing suicide exactly establishes the agency exactly shows the autonomy.
So I think it's very contradictory to advocate autonomy and then take refuge in euphemism.
17:10
Lord Winston (Labour)
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Lord Winston (Labour)
Many years ago, the noble Lord >> Many years ago, the noble Lord Lord Botham introduced a similar bill, and I very misguidedly introduced an amendment to the title of the bill when I suggested the word euthanasia should be in the word euthanasia should be in the bill, I did this without actually either believing that the bill should go past or actually should fail. I really was genuinely uncertain, but earlier that week I'd been talking in a school to a schoolgirl aged 16.
And in this, in this short conversation I had, she said, do you think we always feel we have to go for perfection? Do we have to strive for perfection? And I had a very difficult trying answer, and I've pondered on that. And I think one of the issues is exactly what the noble Lord Lord Frost has just done. He's tried to demonstrate that there are no meanings for words. Absolutely. In that case, I use Greek, but really, in fact, really is something that I think we now need to go beyond because in fact, these words will mean different things to different people, and we can actually waste a lot of time doing this sort of meddling with language when it really is unnecessary, when it is not an issue with the legal quality of the bill, which of course must be of paramount.
It's very clear, I think, that the language we have at the moment is undoubtedly intelligible and largely workable.
And in this, in this short conversation I had, she said, do you think we always feel we have to go for perfection? Do we have to strive for perfection? And I had a very difficult trying answer, and I've pondered on that. And I think one of the issues is exactly what the noble Lord Lord Frost has just done. He's tried to demonstrate that there are no meanings for words. Absolutely. In that case, I use Greek, but really, in fact, really is something that I think we now need to go beyond because in fact, these words will mean different things to different people, and we can actually waste a lot of time doing this sort of meddling with language when it really is unnecessary, when it is not an issue with the legal quality of the bill, which of course must be of paramount.
It's very clear, I think, that the language we have at the moment is undoubtedly intelligible and largely workable.
17:11
Lord Harper (Conservative)
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Lord Harper (Conservative)
Let me just pick up at the >> Let me just pick up at the beginning from the point that was left off there by the noble Lord. Lord Winston, I think we should just be very plain and simple. What's going on here? The bill, effectively central purpose, amends the suicide act and legalises the ability of somebody to assist someone else to kill themselves. And we should just be very frank about that. That's what we're doing. If people find that uncomfortable and distressing, to be clear and plain, speaking about what we're doing, then I think that should just make us pause to ask ourselves the question about whether what we're doing is the right thing.
We shouldn't change the language to make the thing we're doing more palatable. We should be plain and speaking about it, and then judge accordingly. And there are some real consequences here. One of them was set out by my noble friend Lord Shinkwin, when he referred to people with learning disabilities. Now the noble. And he'll correct me if I've got this wrong, but I think the noble and learned Lord Doyle Falconer, when he was giving evidence to the committee, was clear that he wanted someone with a learning disability to have the same ability to access assisted suicide as anybody else.
I think I've got that right. Assuming they meet the other eligibility criteria. And my noble friend Lord Shinkwin put it very well when he said people with learning disabilities need to have things explained in clear and straightforward language, and that's really important. And we can't rely, as in the earlier debate, my noble friend Lord Markham talked about relying on the experts because we know that they don't always make the right decisions. We know during the Covid pandemic, many people with learning disabilities were given do not resuscitate notices because some people had made the decision that their lives were not as worthwhile as others, and they made decisions about them that they would not have made about somebody who did not have a learning disability.
So I think it's really important that we make sure that the language we use about a decision that could not be more important is understandable, and the consequences of it understandable to everybody that's impacted by it. And I think my noble friend Lord Shinkwin made that point very well. My my noble friend Lord Frost has already made the point that I did reflect on before I signed his amendment about the use of the word commit in committing suicide. I personally don't like using that phrase, so I did pause before I signed his amendment that the commit piece, not the suicide piece, but I thought the debate and pressing on clarity was important.
And obviously we're at Committee stage. If my noble friend, were to bring forward these amendments at Report stage, I would want to work with him on the language. And I think removing the word commit, I think, would be better because, as he correctly said, the suicide act has removed that vocabulary and I think that would be better. But I think using the word suicide is accurate. Just because somebody has a terminal illness taking their own life, it doesn't mean they're not committing suicide.
And the reason why it's important is it gets through to people the consequence of what we're doing here and the fundamental reshaping we're doing to the way society looks at this. And that's why so many of us are concerned about it. Before confronting this. Everything we do is about prevention of suicide. The government has a suicide prevention strategy. All of the debate in this House on the Online Safety Act. And my noble friend, sorry, noble Lady Baroness Fox referred to some of the online sites that promote suicide and make it sound like an OK thing to do.
Your Lordships House was very exercised during the passage of the Online Safety Act, but that sort of online content, and there's been a general presumption in society that if someone wishes to commit a die by suicide, we should take every step possible to persuade them not to do so. And this legislation is a profound change to that, enabling people to assist someone to die by suicide. And I think that's why we should be clear and straightforward about the language, to confront people with the enormity of that change.
Now, if having confronted the public with the enormity of that change, they still think that's a good idea. I might not agree with that, but that would be fine. But what we shouldn't do is allow these significant changes to go by because we obfuscate what they're actually about by using language that isn't clear and straightforward. And that is the the thrust of my noble friends amendments. That's why I was happy to put my name to them, and that's why I think at least a form of them would be an improvement to the bill were they to be accepted.
We shouldn't change the language to make the thing we're doing more palatable. We should be plain and speaking about it, and then judge accordingly. And there are some real consequences here. One of them was set out by my noble friend Lord Shinkwin, when he referred to people with learning disabilities. Now the noble. And he'll correct me if I've got this wrong, but I think the noble and learned Lord Doyle Falconer, when he was giving evidence to the committee, was clear that he wanted someone with a learning disability to have the same ability to access assisted suicide as anybody else.
I think I've got that right. Assuming they meet the other eligibility criteria. And my noble friend Lord Shinkwin put it very well when he said people with learning disabilities need to have things explained in clear and straightforward language, and that's really important. And we can't rely, as in the earlier debate, my noble friend Lord Markham talked about relying on the experts because we know that they don't always make the right decisions. We know during the Covid pandemic, many people with learning disabilities were given do not resuscitate notices because some people had made the decision that their lives were not as worthwhile as others, and they made decisions about them that they would not have made about somebody who did not have a learning disability.
So I think it's really important that we make sure that the language we use about a decision that could not be more important is understandable, and the consequences of it understandable to everybody that's impacted by it. And I think my noble friend Lord Shinkwin made that point very well. My my noble friend Lord Frost has already made the point that I did reflect on before I signed his amendment about the use of the word commit in committing suicide. I personally don't like using that phrase, so I did pause before I signed his amendment that the commit piece, not the suicide piece, but I thought the debate and pressing on clarity was important.
And obviously we're at Committee stage. If my noble friend, were to bring forward these amendments at Report stage, I would want to work with him on the language. And I think removing the word commit, I think, would be better because, as he correctly said, the suicide act has removed that vocabulary and I think that would be better. But I think using the word suicide is accurate. Just because somebody has a terminal illness taking their own life, it doesn't mean they're not committing suicide.
And the reason why it's important is it gets through to people the consequence of what we're doing here and the fundamental reshaping we're doing to the way society looks at this. And that's why so many of us are concerned about it. Before confronting this. Everything we do is about prevention of suicide. The government has a suicide prevention strategy. All of the debate in this House on the Online Safety Act. And my noble friend, sorry, noble Lady Baroness Fox referred to some of the online sites that promote suicide and make it sound like an OK thing to do.
Your Lordships House was very exercised during the passage of the Online Safety Act, but that sort of online content, and there's been a general presumption in society that if someone wishes to commit a die by suicide, we should take every step possible to persuade them not to do so. And this legislation is a profound change to that, enabling people to assist someone to die by suicide. And I think that's why we should be clear and straightforward about the language, to confront people with the enormity of that change.
Now, if having confronted the public with the enormity of that change, they still think that's a good idea. I might not agree with that, but that would be fine. But what we shouldn't do is allow these significant changes to go by because we obfuscate what they're actually about by using language that isn't clear and straightforward. And that is the the thrust of my noble friends amendments. That's why I was happy to put my name to them, and that's why I think at least a form of them would be an improvement to the bill were they to be accepted.
17:17
17:17
Lord Goodman of Wycombe (Conservative)
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Lord Goodman of Wycombe (Conservative)
It may be helpful for the House >> It may be helpful for the House if I simply read very briefly to the assistance of considering this amendment, what the former Chief amendment, what the former Chief Coroner of England and Wales, Justice Teague, said about the background to the decriminalisation of suicide when giving evidence to the select committee, he said this I think the House would want to consider it. The reason the change was made was not a change in public policy towards suicide.
It was a change in the criminal law to decriminalise it, because the situation had developed where you could not effectively prosecute the person who successfully committed suicide. What the law was doing was prosecuting people who failed. It was manifestly improper and unjust that people should, in effect, be punished for failing to achieve suicide. But it was always made clear at the time of the debate in Parliament that it would remain an offence to assist a suicide. Let be the policy of the law that suicide was not something to be approved of, but in that context, the House may wish to consider whether or not, given that the act being considered here is the assistance of a suicide, that it should be plainly named as such, as Lord Frost proposes in his amendment.
It was a change in the criminal law to decriminalise it, because the situation had developed where you could not effectively prosecute the person who successfully committed suicide. What the law was doing was prosecuting people who failed. It was manifestly improper and unjust that people should, in effect, be punished for failing to achieve suicide. But it was always made clear at the time of the debate in Parliament that it would remain an offence to assist a suicide. Let be the policy of the law that suicide was not something to be approved of, but in that context, the House may wish to consider whether or not, given that the act being considered here is the assistance of a suicide, that it should be plainly named as such, as Lord Frost proposes in his amendment.
17:18
Lord Gove (Conservative)
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Lord Gove (Conservative)
My Lord. >> My Lord. >> My Lords.
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I'll take just a minute or two. Words matter in America. Words matter in America. Legislation similar to that that we are entertaining is known as medically assisted suicide. Similar terminology is used in Switzerland. Those are both jurisdictions that have informed this debate recently in the British Medical Journal, a physician who works in Scotland made this compelling point. The phrase assisted dying creates confusion and is poorly understood. Just 43% of respondents in opinion polling thought that assisted dying involved the provision of lethal drugs to end somebody's life.
Fewer than half of the public understood what was meant by this legislation. The majority believed the term meant withdrawing life prolonging treatment or providing hospice type care. If so, many of the public have the wrong view of this legislation, how can it possibly not be of assistance for us to use plain language on a matter of such moment?
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It was worth hearing. My Lords, my Lords, if there's one place. I'd be very clear, and I've been
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I'd be very clear, and I've been clear about this throughout this debate, any noble Lord who wants to speak in this debate should be allowed to do so.
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allowed to do so. Can I say, as I said earlier on, it's very, absolutely fine to break my group on these amendments.
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my group on these amendments. Thank you. If there is one place that language matters, it is in the that language matters, it is in the bill before us. And as a young disabled person, I used to interchangeably use person with a disability and a disabled person
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I'll take just a minute or two. Words matter in America. Words matter in America. Legislation similar to that that we are entertaining is known as medically assisted suicide. Similar terminology is used in Switzerland. Those are both jurisdictions that have informed this debate recently in the British Medical Journal, a physician who works in Scotland made this compelling point. The phrase assisted dying creates confusion and is poorly understood. Just 43% of respondents in opinion polling thought that assisted dying involved the provision of lethal drugs to end somebody's life.
Fewer than half of the public understood what was meant by this legislation. The majority believed the term meant withdrawing life prolonging treatment or providing hospice type care. If so, many of the public have the wrong view of this legislation, how can it possibly not be of assistance for us to use plain language on a matter of such moment?
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It was worth hearing. My Lords, my Lords, if there's one place. I'd be very clear, and I've been
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I'd be very clear, and I've been clear about this throughout this debate, any noble Lord who wants to speak in this debate should be allowed to do so.
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allowed to do so. Can I say, as I said earlier on, it's very, absolutely fine to break my group on these amendments.
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my group on these amendments. Thank you. If there is one place that language matters, it is in the that language matters, it is in the bill before us. And as a young disabled person, I used to interchangeably use person with a disability and a disabled person
17:20
Baroness Grey-Thompson (Crossbench)
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Baroness Grey-Thompson (Crossbench)
and didn't understand the importance of that. Now I'll debate importance of that. Now I'll debate that later. Amendments. Actually, disabled person is a much better disabled person is a much better phraseology to use, but I think we have to think language is the dress of thought, and we are all spending of thought, and we are all spending many, many hours working on this bill. But if the outside world bill. But if the outside world doesn't understand what is meant by assisted dying, then we could be in a situation where somebody with learning disability, someone who uses British Sign Language, who hasn't spent as much time as we have interrogating every single session, might not actually understand what they're signing up to.
And while it's a personal preference, I would prefer something around died by suicide. I think that's something else that can be finessed as as we go through the bill when we're in a situation. And this is from the BMJ, where they had an article which showed how poorly understood the phrase assisted dying was. I think this highlights the problem that we're facing. It creates confusion. It is poorly understood. Just 43% of respondents thought assisted dying involved the precision of provision of lethal drugs to end someone's life.
The majority believed the term meant withdrawing, life prolonging treatment or hospice type care. And I think that is something that we really have to consider. The noble Lord Lord Winston talked about that the bill should be largely workable, but I think it should be workable. I also think it should be safe. And part of that safety is about the public understanding what they might be signing up to. And in other groups. We've talked about doctors and medics. I have many in my family. There's nothing more than most medic like than talking about very long words and things that the public don't necessarily understand unless, you know, not everybody is an expert patient.
So I think we have to be really clear about what we mean by this bill. We should stop hiding behind phrases that, you know, people may choose to use. And I will be really clear from now, I, I have used assisted dying because I tried to be very thoughtful to the people who don't like assisted suicide, I've I've used assisted suicide today. I think from now on I will carry on. I will use assisted suicide because that's what this bill is going to do to the people who sign up to it.
And while it's a personal preference, I would prefer something around died by suicide. I think that's something else that can be finessed as as we go through the bill when we're in a situation. And this is from the BMJ, where they had an article which showed how poorly understood the phrase assisted dying was. I think this highlights the problem that we're facing. It creates confusion. It is poorly understood. Just 43% of respondents thought assisted dying involved the precision of provision of lethal drugs to end someone's life.
The majority believed the term meant withdrawing, life prolonging treatment or hospice type care. And I think that is something that we really have to consider. The noble Lord Lord Winston talked about that the bill should be largely workable, but I think it should be workable. I also think it should be safe. And part of that safety is about the public understanding what they might be signing up to. And in other groups. We've talked about doctors and medics. I have many in my family. There's nothing more than most medic like than talking about very long words and things that the public don't necessarily understand unless, you know, not everybody is an expert patient.
So I think we have to be really clear about what we mean by this bill. We should stop hiding behind phrases that, you know, people may choose to use. And I will be really clear from now, I, I have used assisted dying because I tried to be very thoughtful to the people who don't like assisted suicide, I've I've used assisted suicide today. I think from now on I will carry on. I will use assisted suicide because that's what this bill is going to do to the people who sign up to it.
17:23
Baroness Hayter of Kentish Town (Labour)
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Baroness Hayter of Kentish Town (Labour)
Are going to continue to help us. Five and as the noble Lady Baroness Five and as the noble Lady Baroness Fox has mentioned me, I think the problem of removing the word dying is it doesn't give to the public the absolutely key bit of information, which is that these
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people are dying anyway, it. Is they are. We're only talking about people
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We're only talking about people who are dying. We're talking about people who are dying. That's what the bill is about. It is about the bill is about. It is about people who've got less than six months to live. They are dying. Now, you might have a theological thing you might have a theological thing that we're all dying. And, you know, each day we get nearer to to that. But let's put that to one side. And But let's put that to one side.
And I think the removal of the word dying, it would be the most, the worst way to tell people what this bill is about, because it's not about assisted suicide. For someone who just decides they want to commit suicide or have a suicide death, or I don't like the word commit. It's not about people who just suddenly say, I want to commit suicide because of this, that or the other. We're only talking about a cohort of people who are dying. Remove that from the bill, and I
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think it's less likely to be understood. Does she not share my. Concerns
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Does she not share my. Concerns about misdiagnosis of six months? When you think of all the people
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who live for much longer afterwards. I think that is an absolute legitimate thing to discuss, and I legitimate thing to discuss, and I would always defer to doctors on that. That makes no difference to this particular part of the this particular part of the argument of whether we call it dying or not. So you may well want to raise the point of, can we ever be sure that someone's dying, though I have to say, I can't be the only one who's I can't be the only one who's been with someone where it's really clear that they're not going to live till the end of the week.
I cannot be the only one who's done that. And there are times when you absolutely know someone's going to die. So why? The noble Lord may well be right that there are other cases. That is not the issue of this word. This word
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people are dying anyway, it. Is they are. We're only talking about people
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We're only talking about people who are dying. We're talking about people who are dying. That's what the bill is about. It is about the bill is about. It is about people who've got less than six months to live. They are dying. Now, you might have a theological thing you might have a theological thing that we're all dying. And, you know, each day we get nearer to to that. But let's put that to one side. And But let's put that to one side.
And I think the removal of the word dying, it would be the most, the worst way to tell people what this bill is about, because it's not about assisted suicide. For someone who just decides they want to commit suicide or have a suicide death, or I don't like the word commit. It's not about people who just suddenly say, I want to commit suicide because of this, that or the other. We're only talking about a cohort of people who are dying. Remove that from the bill, and I
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think it's less likely to be understood. Does she not share my. Concerns
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Does she not share my. Concerns about misdiagnosis of six months? When you think of all the people
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who live for much longer afterwards. I think that is an absolute legitimate thing to discuss, and I legitimate thing to discuss, and I would always defer to doctors on that. That makes no difference to this particular part of the this particular part of the argument of whether we call it dying or not. So you may well want to raise the point of, can we ever be sure that someone's dying, though I have to say, I can't be the only one who's I can't be the only one who's been with someone where it's really clear that they're not going to live till the end of the week.
I cannot be the only one who's done that. And there are times when you absolutely know someone's going to die. So why? The noble Lord may well be right that there are other cases. That is not the issue of this word. This word
17:25
Lord Kamall (Conservative)
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Lord Kamall (Conservative)
in the bill is to give to the public the understanding that we're talking about. Is there a way of talking about. Is there a way of helping either the final timing or indeed the way of those final days? indeed the way of those final days? And we're not talking about someone who just decides to commit suicide for what other reason, but we're for what other reason, but we're talking about people who are dying from some sort of terminal illness.
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Yeah.
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I thought rules with assistance.
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OK. Let's break. OK. Right. Thank you. Sorry. I'm sorry for the confusion. My Lords, let me just remind all noble Lords I am one of these people who's still balancing the arguments on the overall bill. the arguments on the overall bill. And where I get put off from some arguments is when people heckle those who are trying to make a point. I don't think it helps your cause. But on the other, on the other side of the argument, I'm trying not to sound like I spend my life sitting on the fence.
But at the same time, those who speak much longer than they need to in making a point also makes it difficult to support some of the points that have been made. And I'd just like to see in the future days on Committee stage, a bit more mutual respect between the different sides of the debate, shorter points being made, but also less heckling of those who want to make a point. It's very important that if we are going to say that we're doing our job in scrutinising this bill, that everyone who wants to make a point, a valid point relevant to the amendments are allowed to make their point.
Can I thank my noble friend Lord Frost for table this amendment amendments in this group? I recall Second Reading. My noble friend Lord Moylan spoke about the importance of language. And language is important, especially clarity of language. So I do understand my noble friends intentions in bringing these amendments. And arguably, one could argue there is a distinction to be made between the terms assisted dying and assisted suicide. Assisted dying on its own, not with before you even consider bill does not necessarily mean consent on the part of the person whose life is being ended.
What the bill does is introduce that element of consent. But assisted dying on its own does not mean consent, whereas of course, it could be argued that the term assisted suicide does convey some form of intent, and that it is a person seeking to end their own life, they want to do so and are not being assisted to die, regardless of whether they want to die or not. That may seem a philosophical point, but it's important that there is a distinction between assisted dying and assisted suicide.
Now, as the official opposition, we have no collective view. But I would say it's a legitimate challenge by my noble friend to the language of the bill seeking clarity or the noble Lady? Lady Fox said. Transparency and noble Lords have argued that we in this country, or people in this country should be able to access the services that people can access from Dignitas in Switzerland. But if you look at Dignitas, it is described as offering physician assisted suicide. Looking at the Dignitas website, not because I've lost the will to live after trying to get through the day of debate, but to look at the language it uses the phrase legal assistance for suicide with Dignitas.
So we have to ask ourselves if we're trying to be consistent with Dignitas. Why is it OK for Dignitas to use a language suicide, and people want that same service in this country, but we can't use the language of
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suicide in this country. And exactly because they will
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And exactly because they will take people who are not dying. This is not what this bill does.
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is not what this bill does. That's a that's a fair point to be made. And I thought it was a question that was asked. And thank you. I thank the noble Lady for answering the question. So I thank my friend Lord Frost for provoking my friend Lord Frost for provoking debate, because there are other arguments for using the word noble assisted suicide, particularly in terms of clarity. But but I also want to look forward to the consideration of the arguments made by my noble friend Lord Frost, but a noble Lord Falconer, as well as a noble Lady, the Minister.
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Yeah.
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I thought rules with assistance.
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OK. Let's break. OK. Right. Thank you. Sorry. I'm sorry for the confusion. My Lords, let me just remind all noble Lords I am one of these people who's still balancing the arguments on the overall bill. the arguments on the overall bill. And where I get put off from some arguments is when people heckle those who are trying to make a point. I don't think it helps your cause. But on the other, on the other side of the argument, I'm trying not to sound like I spend my life sitting on the fence.
But at the same time, those who speak much longer than they need to in making a point also makes it difficult to support some of the points that have been made. And I'd just like to see in the future days on Committee stage, a bit more mutual respect between the different sides of the debate, shorter points being made, but also less heckling of those who want to make a point. It's very important that if we are going to say that we're doing our job in scrutinising this bill, that everyone who wants to make a point, a valid point relevant to the amendments are allowed to make their point.
Can I thank my noble friend Lord Frost for table this amendment amendments in this group? I recall Second Reading. My noble friend Lord Moylan spoke about the importance of language. And language is important, especially clarity of language. So I do understand my noble friends intentions in bringing these amendments. And arguably, one could argue there is a distinction to be made between the terms assisted dying and assisted suicide. Assisted dying on its own, not with before you even consider bill does not necessarily mean consent on the part of the person whose life is being ended.
What the bill does is introduce that element of consent. But assisted dying on its own does not mean consent, whereas of course, it could be argued that the term assisted suicide does convey some form of intent, and that it is a person seeking to end their own life, they want to do so and are not being assisted to die, regardless of whether they want to die or not. That may seem a philosophical point, but it's important that there is a distinction between assisted dying and assisted suicide.
Now, as the official opposition, we have no collective view. But I would say it's a legitimate challenge by my noble friend to the language of the bill seeking clarity or the noble Lady? Lady Fox said. Transparency and noble Lords have argued that we in this country, or people in this country should be able to access the services that people can access from Dignitas in Switzerland. But if you look at Dignitas, it is described as offering physician assisted suicide. Looking at the Dignitas website, not because I've lost the will to live after trying to get through the day of debate, but to look at the language it uses the phrase legal assistance for suicide with Dignitas.
So we have to ask ourselves if we're trying to be consistent with Dignitas. Why is it OK for Dignitas to use a language suicide, and people want that same service in this country, but we can't use the language of
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suicide in this country. And exactly because they will
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And exactly because they will take people who are not dying. This is not what this bill does.
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is not what this bill does. That's a that's a fair point to be made. And I thought it was a question that was asked. And thank you. I thank the noble Lady for answering the question. So I thank my friend Lord Frost for provoking my friend Lord Frost for provoking debate, because there are other arguments for using the word noble assisted suicide, particularly in terms of clarity. But but I also want to look forward to the consideration of the arguments made by my noble friend Lord Frost, but a noble Lord Falconer, as well as a noble Lady, the Minister.
17:29
Baroness Merron, The Parliamentary Under-Secretary for Health and Social Care (Labour)
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Baroness Merron, The Parliamentary Under-Secretary for Health and Social Care (Labour)
My Lords, I will be very brief. These amendments tabled by the noble Lord, Lord Frost, do not present significant workability concerns, as noble Lords will be aware, the amendments have not had technical drafting support from officials. Therefore, further revision and corresponding amendments would be needed to provide consistent and coherent terminology throughout the bill.
17:29
Lord Falconer of Thoroton (Labour)
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Lord Falconer of Thoroton (Labour)
The purpose for making these >> The purpose for making these amendments advanced by the noble Lord, Lord Frost, is clarity. We Lord, Lord Frost, is clarity. We have to look at this as not some pamphlet, but as a piece of legislation. The key thing is that it conveys what it means. This piece of legislation, the relevant words that are in the bill at the moment, is a terminally ill person in England and Wales may, on request, be provided in England or Wales with assistance to end their own life in accordance with sections 8 to 30.
In my view, that could not be clearer. It's saying the bill is about providing assistance to end their own life in accordance with sections 8 to 13. The noble Lord Lord Frost wishes to change the words assistance to end their own life, to medical help, to commit suicide provision by provision of legal drugs. May I say the language of Lord Frost is both more technical and much, much looser. Simply, simply, as a matter of legal drafting. The draft as it is at the moment, is much clearer and accurately describes what's happened.
It isn't my or the or the or the. Sponsors another place drafting. It's a draft. It's the drafting of a professional draughtsman. And I would I would strongly urge the House to stick with the now non emotional, accurate clear drafting that is there already.
In my view, that could not be clearer. It's saying the bill is about providing assistance to end their own life in accordance with sections 8 to 13. The noble Lord Lord Frost wishes to change the words assistance to end their own life, to medical help, to commit suicide provision by provision of legal drugs. May I say the language of Lord Frost is both more technical and much, much looser. Simply, simply, as a matter of legal drafting. The draft as it is at the moment, is much clearer and accurately describes what's happened.
It isn't my or the or the or the. Sponsors another place drafting. It's a draft. It's the drafting of a professional draughtsman. And I would I would strongly urge the House to stick with the now non emotional, accurate clear drafting that is there already.
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Lord Frost (Non-affiliated)
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Lord Frost (Non-affiliated)
Amen. Amen. >> Amen. Amen. >> My Lords, thank you for all those who've supported and engaged with the the substance of of my amendments. I think we've had a good debate and I, I also thank the the noble Lady, the Minister, for acknowledging that these amendments would not cause I think her words were something like significant or major workability issues on at least on a first viewing. And I think that is important. I'm grateful to the noble and learners.
Lord Falconer of Thoroton, sponsor of the Bill. I think we will have to disagree on what is clear and what is not in the the language. I continue to believe that the form of words my amendment is much clearer and sharper, whereas that the language in the bill covers a multitude of possible actions. And to to conclude, I guess I continue to believe that there is an important and dangerous ambiguity at the heart of this bill, and one that we can clear up by focusing on the language, and therefore we probably will have to return to it
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if we ever get that far. It's the noble Lord withdrawing
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It's the noble Lord withdrawing his amendment Lordships that the amendment be withdrawn. Amendment amendment be withdrawn. Amendment is by leave withdrawn. My Lords, I beg to move the House. Do now resume. My Lords, the question is resume. My Lords, the question is that the House do now resume, as many of that opinion will say. Content contrary, not content. The Content contrary, not content. The contents have it. Lord Dear beg to move the house. Do now adjourn the
Lord Falconer of Thoroton, sponsor of the Bill. I think we will have to disagree on what is clear and what is not in the the language. I continue to believe that the form of words my amendment is much clearer and sharper, whereas that the language in the bill covers a multitude of possible actions. And to to conclude, I guess I continue to believe that there is an important and dangerous ambiguity at the heart of this bill, and one that we can clear up by focusing on the language, and therefore we probably will have to return to it
**** Possible New Speaker ****
if we ever get that far. It's the noble Lord withdrawing
**** Possible New Speaker ****
It's the noble Lord withdrawing his amendment Lordships that the amendment be withdrawn. Amendment amendment be withdrawn. Amendment is by leave withdrawn. My Lords, I beg to move the House. Do now resume. My Lords, the question is resume. My Lords, the question is that the House do now resume, as many of that opinion will say. Content contrary, not content. The Content contrary, not content. The contents have it. Lord Dear beg to move the house. Do now adjourn the