Terminally Ill Adults (End of Life) Bill (Twenty-fifth sitting)

Tom Gordon Excerpts

Committee stage
Tuesday 18th March 2025 Public Bill Committees

Division 51

Ayes: 3

Noes: 18

[Tom Gordon (Harrogate and Knaresborough) (LD)]

I beg to move amendment 350, in clause 18, page 12, line 34, at end insert—

“(d) subject to subsection (6A), provide additional assistance to administer the substance in the presence of an independent witness.

(6A) The coordinating doctor may provide the additional assistance under subsection (6)(d) when—

(a) the coordinating doctor is satisfied that the person is permanently and irreversibly unable to self-administer the substance due to—

(i) significant risk of choking as a result of dysphagia, or

(ii) the loss of use of the limbs; and

(b) the person has authorised that the additional assistance be provided.”

This amendment would define the eligibility criteria for those who are permanently and irreversibly unable to self-administer the substance and are therefore eligible for additional assistance to administer the substance.

[The Chair]

With this it will be convenient to discuss the following:

Amendment 351, in clause 18, page 12, line 35, after “substance” insert

“or to authorise additional assistance to be provided”.

This amendment would ensure the decision to administer the approved substance remains with the person but would allow those who are unable to self-administer the substance to receive further assistance.

Amendment 352, in clause 18, page 12, line 40, at end insert

“, unless the criteria in subsection (6A) are met.”

This amendment would authorise the coordinating doctor to provide additional support with administration for those who are unable to self-administer the substance.

[Tom Gordon]

It is an honour to serve under your chairmanship, Sir Roger. I speak in support of this group of amendments, which address the issue of fairness and accessibility in the Bill. The amendments seek to ensure that those who are physically unable to self-administer the approved substance due to their condition are not excluded from the choice of an assisted death.

The principle at stake here is equity: making sure that this opportunity would be available to not only those with the physical ability to self-administer but all eligible individuals, regardless of their condition. The Motor Neurone Disease Association made it clear in its written evidence that conditions like motor neurone disease can be cruel, devastating and progressive, locking people inside their own failing bodies. More than 80% of people with MND lose the ability to speak. Many lose all limb function, leaving them unable to lift even a glass of water, let alone self-administer medication.

There is a common theme here that relates to a point I made in an earlier sitting, when we debated the period of time for eligibility. For these individuals, the Bill in its current form creates a barrier. It states that the final act of ingesting or administering an approved substance must be taken by the person themselves. For someone with advanced MND, that may simply not physically be possible. The MND Association’s evidence highlights that in other jurisdictions, such as Queensland in Australia, allowances have been made for people unable to swallow or self-administer. If we fail to include such provision here, we risk excluding some of the most vulnerable people or, even worse, creating a perverse incentive for them to seek an assisted death earlier, possibly abroad, when they may still have physical function.

These amendments are not about lowering safeguards in any way, shape or form. As we know, the Bill has robust safeguards, which these amendments would maintain. It would only be applicable in instances where doctors deem it necessary, and it would not be open to more than those with conditions restricting their ability to self-administer. If the Bill is about compassion, then we must ensure that that compassion extends to everyone; if it is about choice, then we should not deny that choice to those with severe physical limitations; and if it is about justice, then we should not allow injustice to be written into the law.

[Naz Shah (Bradford West) (Lab)]

I rise to oppose amendments 350 to 352, tabled by my hon. Friend the Member for Gedling (Michael Payne). They would allow the co-ordinating doctor to provide additional assistance to administer the substance in the presence of an independent witness, in some circumstances. Those circumstances would be when, as amendment 350 says, the doctor determines that the person is

“permanently and irreversibly unable to self-administer”

the lethal substance because of an inability to swallow or the loss of use of the limbs. The amendments do not spell out what the additional assistance would be, but I think it is reasonable to believe that it refers to the doctor injecting the lethal substance into a person’s circulatory system.

My hon. Friend’s amendments comes from genuine concern about the situation that some people may well find themselves in. Some people who might otherwise qualify for assisted dying under the Bill might be unable to swallow or inject the lethal drugs. We should all respect the feeling that lies behind the amendments, but we should reject them. If we pass them, we will have accepted that doctors can help people who have qualified for assisted dying to prepare to inject themselves with lethal drugs or swallow them. The Bill does not say that doctors can do that. I do not know whether the House would have voted for the Bill on Second Reading if it had, but that is beside the point—it was not part of the Bill. If we were ever to consider taking such a radical step, we should only do so after hearing as much evidence as possible on why and how this might be necessary. I urge the Committee to oppose the amendment.

--- Later in debate ---

[Tom Gordon]

The hon. Member mentioned that down the line the Bill could be changed through guidance. I do not think there would be any scope or ability to do that. Does he agree that that point might be a little bit beyond what we all think might be possible under the terms of guidance?

[Danny Kruger]

I hope the hon. Gentleman is right. Nevertheless, one of my concerns about the Bill is that we are leaving enormous areas of clinical practice, and regulated conduct for the professionals involved in assisted suicide, to be performed under guidance that is still to be set out and that it is the job of future Ministers to determine.

I pay tribute to the hon. Gentleman, because he has correctly identified a group of patients for whom the drafted Bill may present obstacles to the fulfilment of their wish for an assisted death. My belief is that the ability to assist will probably cover almost anybody who wants it and has found a doctor who wants to help them, but the hon. Gentleman is right that there are some groups for whom that might be more of a challenge than others. I think the answer we are going to get—it is one made by hon. Members in the debate already—is that technology will fix it, and I fear it will, because I think we are going to find ourselves in a world in which it is perfectly possible for the administration of death to be enabled through some kind of technological device, which somebody with the most limited physical mobility will nevertheless be able to activate.

I fear the insistence that we have on self-administration. Although we can all acknowledge, as referenced in the previous debate, the conceptual difference between administration and self-administration, we do have this idea that we are individuals cut off from each other and that there is an essential gap between us and other people. At the very end of life, though—in the moments that we are considering and legislating for—that distinction is void, because we are intimately connected with other people, as per the clauses that we are debating. I fear that we are going to find ourselves in a world in which a laptop will be set up and even a movement as small as the blink of an eyelid by the patient will be enough to trigger what will be called “self-administration” of the fatal dose.

I oppose this group of amendments, moved by the hon. Member for Harrogate and Knaresborough, because I do not believe in assisted suicide. I do not understand why other supporters of the Bill are not following the hon. Gentleman’s lead, and acknowledging that if we believe in autonomy and assisted suicide, of course we should enable patients to have the final act performed upon them, rather than insisting on this arbitrary distinction that it is possible to insist on self-administration in all cases.

--- Later in debate ---

[Kim Leadbeater]

I completely understand where these amendments are coming from. In many jurisdictions where assisted dying laws are in place, this would be an accepted part of the process. However, as I have said repeatedly, our Bill stands in its own right, and its safeguards are stronger than those anywhere else in the world. One of those safeguards is that the line cannot be crossed between a person shortening their own death by administering the drugs themselves and by having another person—in this case the doctor—do it for them.

While I am hugely sympathetic to the argument, that is a line that I do not believe the Bill should cross. I concur with the comments of my hon. Friend the Member for Bradford West about Second Reading and what the House voted for, and with those of the hon. Member for Reigate about medical profession levels, which we discussed this morning. I also agree with the Minister’s comments about the concept of an independent witness, and with the comments from the hon. Member for Solihull West and Shirley about the concept of additional assistance. On that basis, I will not be supporting the amendments.

[Tom Gordon]

I will keep it short and sweet. I had not intended to push the amendments to a vote and will not be doing so. A lot of important points have been raised. Irrespective of whether the amendments were going to be pushed to a vote or would have been successful, it is important that we listen to and take into account the voices of people with different diseases who might wish to access an assisted death. We must also take into account the evidence that organisations have submitted, because it is important that those voices are heard too. I beg to ask leave to withdraw the amendment.

Amendment, by leave, withdrawn.

[Danny Kruger]

I beg to move amendment 435, in clause 18, page 13, line 6, at end insert—

“(9A) Where the procedure has failed, the coordinating doctor must escalate the care of the person by making the appropriate referral to emergency medical services.”

This amendment would require the doctor to escalate the care of the person in cases in which the procedure fails.

Type 1 Diabetes and Disordered Eating Services

Tom Gordon Excerpts

Wednesday 5th March 2025 Commons Chamber

[The Parliamentary Under-Secretary of State for Health and Social Care (Ashley Dalton)]

I thank my hon. Friend the Member for Cannock Chase (Josh Newbury) for securing the debate and all hon. Members who have contributed. The hon. Member for Strangford (Jim Shannon), who appears to be quickly making an exit but remains in his place, spoke about mental health. The hon. Member for South Northamptonshire (Sarah Bool) spoke about destigmatisation for disordered eating and for type 1 diabetes. By sharing her diagnosis in this place, she is making a huge contribution towards destigmatisation, and I thank her for that. My hon. Friend the Member for Gloucester (Alex McIntyre) shared his family’s story, which is heartbreaking and shows the impact that these issues have on people. My hon. Friend the Member for Worcester (Tom Collins) talked about technological advancement and support.

As my hon. Friend the Member for Cannock Chase outlined in his remarks, type 1 diabetes and disordered eating—T1DE—is not a widely known condition, yet it potentially affects up to a third of people with type 1 diabetes. People with T1DE find themselves trapped in a battle between needing to control their diabetes with insulin and trying to control their weight in an unhealthy way. It is a vicious cycle. People with T1DE experience increased ill health and, sadly, an increased chance of early death. Studies have shown that people with T1DE who restrict insulin have a mortality rate more than three times higher than those who do not.

We should pay tribute to the diabetes charities that are doing so much for people living with diabetes across the UK and tackling this problem head on, such as Beat, which has dedicated helplines for people struggling with this condition; Breakthrough T1D, which funds international research to cure, treat and prevent type 1 diabetes and its complications; and Diabetes UK, which does a fantastic job of articulating the community’s needs to Government.

[Tom Gordon (Harrogate and Knaresborough) (LD)]

I congratulate my friend, the hon. Member for Cannock Chase (Josh Newbury), on securing this debate. As was mentioned, I used to work for the type 1 diabetes charity JDRF, as it was then—it is now Breakthrough T1D. We used to regularly have meetings with Ministers in the Department of Health and Social Care. One of the key things that I and, I am sure, Members across the House would like to see is the new Government taking up the recommendations of the report by Theresa May and Sir George Howarth. Will the Minister agree to meet the APPG for diabetes to talk about how those recommendations can be implemented?

[Ashley Dalton]

I am more than happy to meet the APPG to discuss those matters.

I was really moved to read Lynsey’s story on the Diabetes UK website. One thing that really stood out to me was her experience of turning 18 and moving to an adult clinic. She said:

“I became a number in a system, rather than a patient. Every time I went, I saw a different team, and would have to explain my entire medical history. It felt like it wasn’t worth my time, and I certainly wasn’t going to have a conversation about what was going on with people I didn’t know.”

After just a few appointments, Lynsey stopped going. T1DE cuts across diabetes and mental healthcare, and Lynsey’s interactions with the NHS show that we must never treat patients like interchangeable statistics, bouncing around a cold system that does not seem to care for them. Instead, each patient should benefit from a unique, joined-up approach.

To its credit, NHS England has recognised that there is an unmet need for better treatment of T1DE. As my hon. Friend the Member for Cannock Chase has recognised, it has begun piloting type 1 diabetes and disordered eating services, two of which came online in 2019. The aim of those pilots was to develop the evidence base around how best to manage T1DE by testing an integrated pathway, which means that patients such as Lynsey would not be obliged to recount their medical history on every visit. In the past five years, NHS England has expanded on the original pilots, with funding extended for five T1DE pilot sites until March 2026 to ensure that there are sufficient patient numbers for us to get a full picture of what is happening on the ground. I thank my hon. Friend for his contribution to those pilots.

While those pilots are gathering evidence, NHS England is looking carefully at the findings, with a view to developing a future national strategy. Each of the five new pilot areas is submitting quarterly data to the evaluation, and it intends to publish its analysis of the data by September.

Terminally Ill Adults (End of Life) Bill (Thirteenth sitting)

Tom Gordon Excerpts

Committee stage
Tuesday 25th February 2025 Public Bill Committees

[Juliet Campbell]

I have almost finished, so I will carry on.

If we give doctors the essentially impossible task of proving that death will inevitability occur in six months, there is a risk of an individual being advised to stop treatment, to accelerate them artificially into a serious or terminal state or speed it up to ensure their eligibility. As medical intervention is so key in the prognosis of a seriously ill patient, it makes no sense to me to use language that is not consistent with real-life medical experiences or reasonably within the scope of medical diagnosis.

[Tom Gordon (Harrogate and Knaresborough) (LD)]

It is an honour to serve under your chairmanship, Mr Dowd. I speak in support of amendment 234, which is tabled in my name and seeks to ensure that people suffering from neurodegenerative conditions are not excluded from the dignity and autonomy that the Bill seeks to provide. The amendment would extend the eligibility period for those with neurodegenerative conditions from six months to 12 months—a simple yet crucial change that could alleviate needless suffering and ensure fairness in our approach to end of life care.

The intention of the amendment is to change the law to match that in five of the six Australian states. The wording mirrors that found in those jurisdictions. Conditions that would be affected by the change include motor neurone disease, Huntington’s disease, multiple system atrophy, progressive supranuclear palsy, Parkinson’s and many others. Although Alzheimer’s is a neuro-degenerative condition, those with Alzheimer’s would not be eligible for an assisted death should the amendment pass because they would not have the mental capacity.

[Daniel Francis]

Does the hon. Gentleman agree that those with early-stage dementia or Alzheimer’s could pass the mental capacity test in the Mental Capacity Act 2005?

[Tom Gordon]

They would need to come within the definition of a terminal illness. I will come that later in my speech.

We must recognise the reality of neurodegenerative diseases. There are other conditions where prognosis follows a clear trajectory. People with conditions such as MND and Parkinson’s experience a slow but relentless decline. Their suffering can be profound long before they meet the six-month prognosis requirement that is currently in the Bill.

Let us look at some real-life stories. Mary Kelly is a bright and sharp-witted woman from Middlesbrough. Diagnosed with Parkinson’s last year, Mary knows that she faces many years of deterioration. She said:

“It would make the world of difference to know that assisted dying was legal and available. I’d know if I’m not finding joy, I can end it peacefully. It would make the intervening years so much more peaceful, loving, and relaxed.”

Parkinson’s-related dementia affects a third of those with the condition. If Mary loses capacity before a doctor confirms her eligibility, she will be denied the very right that the Bill aims to uphold. If we do not amend the Bill, people like Mary will lose their autonomy precisely when they need it most.

We must also consider the experience of people like Phil Newby, who was diagnosed with MND a decade ago. Phil fought to challenge the UK’s ban on assisted dying, taking a case to the High Court in 2019. He is the last living person who took one of the court cases involving assisted dying. Phil knows that the uncertainty of prognosis leaves too many in limbo. He said:

“People with neurodegenerative diseases often suffer a cognitive decline in the later stages. Twelve months would give a much greater chance for a civilised death to those suffering from the most devastating illnesses.”

We must ensure that those voices are not ignored in this conversation.

Imagine a scenario in which someone with MND applies for an assisted death. They tell their friends, family and loved ones. They begin to make preparations, including signing the written declaration, but they cannot get approval until a doctor says they have six months left. They wait. Their condition gets worse. They suffer choking fits, have feeding tubes fitted, and experience a slow and cruel deterioration. Finally, they receive approval from the first doctor, but before they can get to a second doctor, they begin to lose capacity. They are still suffering. Their family know their clear and settled wish, but they have no chance of a second approval, and especially no chance of approval from a panel. They will be potentially consigned to a death of agony and pain, despite everyone knowing that it is not how they would like to die. Their family must watch on, helpless.

The loss of competency is one of the greatest fears for those with neurodegenerative conditions. The Bill currently states that a person must have full mental capacity at the time of their assisted death, which is an important safeguard. However, people who develop MND can have their decision making impaired, and around 50% experience some form of cognitive decline. In New Zealand, where there is a six-month limit, many people lose their decision-making capacity before they can proceed. By contrast, in Victoria in Australia, where there is a 12-month limit for neurodegenerative conditions, only 7% lose competency. If we do not amend the Bill, we risk condemning those people to a fate they fought to avoid.

We must also recognise the difficulty in predicting life expectancy for those with neurodegenerative conditions. Prognosis is not an exact science. I am fairly sure that everyone agrees on that—people have made those points repeatedly. The Court of Appeal has acknowledged that a six-month prognosis cannot be made with certainty for many terminal illnesses. That is one of the most difficult things that I have had to grasp as part of the Committee. To impose what could seem like an arbitrary threshold on those with unpredictable conditions is unfair and unnecessary.

Moreover, let us look at international examples. Many UK residents who have to travel to Switzerland for an assisted death do not have six months or less to live. If we end up with a six-month limit, we will still see people having to travel to Switzerland or other jurisdictions to ensure that they have access to an assisted death. I worry how people in this country would feel about that —particularly those families who might wish to accompany their loved ones on that journey, with the legal consequences that could follow.

Recent polling shows that two thirds of Brits support an amendment that would allow people with neuro-degenerative diseases access to an assisted death. We know that 85% of people living with multiple system atrophy who gave their views in an MSA Trust survey support such a change in the law. This is not a minor or niche concern. Every year, motor neurone disease alone kills 2,200 people in the UK, which is six people per day. Some 45% of people living with MND say they would consider an assisted death if the law changed. It is not a hypothetical scenario: these are real people, making real choices about how they wish to live and die.

My amendment would not overload the system. Experience from overseas tells us that jurisdictions such as Victoria and other Australian states already have a 12-month system for neurodegenerative conditions, and it works. New Zealand, which maintains a six-month limit, has seen people unable to qualify, and is looking at what it can do to ensure greater access. We must also listen to the written and oral evidence from expert witnesses. Professor Meredith Blake and Chloe Furst testified to the importance of a 12-month eligibility period, not just for fairness but for the practicality of allowing patients to navigate the process in time.

Everyone wants to see a Bill that is about dignity. If it is truly about that, we must ensure that it works for those who need it most. It is not about opening the floodgates or trying to expand the criteria. It is about ensuring equal access. From speaking to colleagues across the Committee, I know that a lot of thought and consideration has gone into this issue. With that in mind, I will not push the amendment to a vote, but it is important that the voices of people with neurodegenerative diseases are considered as part of the process.

[Rachel Hopkins (Luton South and South Bedfordshire) (Lab)]

It is a pleasure to speak under your chairship, Mr Dowd.

I rise in support of amendment 234. I acknowledge the point made by the hon. Member for Harrogate and Knaresborough about not pushing it to a Division, but it is important to hear why it would benefit the Bill if it was agreed to. It would allow a terminally ill person with a neurodegenerative illness, disease or condition who has fewer than 12 months left to live—rather than six—the right to choose an assisted death. I speak as a humanist, because I am very alive to many members of the public, and some MPs, wanting a wider scope of eligibility to cover intolerable suffering. In fact, some want no timescales, and an amendment has been tabled for that. I believe that my hon. Friend the Member for Spen Valley, who introduced the Bill, has had people speak to her and say the Bill needs to go further.

Like all of us, I want to make this a good Act that will have strong safeguards while allowing people choice at the end of life, and I want it to command the support of the House. I reflected on whether we need to have such a wide definition to cover intolerable suffering, and I thought that a change to 12 months for those with neurodegenerative diseases would be a good way to reflect the breadth of voices we have heard in debates on the Bill. It is an appropriate compromise. One of the things we have seen over the course of our Committee debates is the real pulling apart and consideration of what this legislation will mean in practice.

As the hon. Member for Harrogate and Knaresborough set out so well, a 12-month timescale for those with neurodegenerative diseases would mean that people could make decisions while they still have mental capacity. As he rightly said, their condition would so often see a cognitive decline before six months. The Motor Neurone Disease Association—another organisation that supports people living with terminal neurodegenerative diseases—highlighted problems with the six-month criteria and the inequity that arises.

Again, I reference the testimony of medical practitioners from Australia, where some states have eligibility criteria for assisted dying that includes an illness, disease or condition that is expected to cause death within 12 months. It is out there in practice, so it is not a new concept. Professor Meredith Blake said in oral evidence:

“Queensland legislation is different: it sets a 12-month period of expected death, and the reason for that approach was in response to feedback from people living with neurodegenerative disease that they felt that they were being put in a different position to people suffering from, or experiencing, other terminal illnesses.”––[Official Report, Terminally Ill Adults (End of Life) Public Bill Committee, 30 January 2025; c. 211, Q270.]

I will draw my remarks to a close, but there is a personal reason why it is important to me that we reflect on 12-month eligibility: the case of Diane Pretty. Diane Pretty was from Luton, albeit she lived in the neighbouring constituency, and some 25 years ago she was diagnosed with motor neurone disease. She tried to change the law then so that she could access assisted dying, such was the pain and suffering that she endured because of her terminal illness. What she said is fundamental and at the heart of what we are trying to do here, 25 years later:

“I want to have a quick death, without suffering, at home and surrounded by my family.”

In the end, Diane Pretty was not successful, and she died aged 43 on 11 May 2002. She did not have a choice. She could not choose the death she wanted. Much has been said about rushing the Bill, but that was over 20 years ago, so the debate has been going on for many years. That is why I speak in support of amendment 234, so that those with neurodegenerative terminal illnesses, whose death is reasonably expected within 12 months, can access assisted death.

[Rebecca Paul (Reigate) (Con)]

I will speak to amendments 9 and 10, which were tabled by my hon. Friend the Member for South Northamptonshire (Sarah Bool). Members will spot the trend: I have been speaking in favour of a lot of her amendments.

Amendments 9 and 10 would make sure the Bill does what it aims to do: ensure that assisted death is available only to those who are genuinely at the end of life. Under clause 2, a person is terminally ill if they have a prognosis of less than six months and if they have

“an inevitably progressive illness, disease or medical condition which cannot be reversed by treatment”.

That wording gives rise to a risk of unintended cases meeting eligibility criteria.

In Oregon, conditions such as anorexia, diabetes, arthritis, HIV/AIDS and hernias have all qualified for assisted death. That is partly because the Oregon law uses the language of “irreversible”, just as the Bill says

“cannot be reversed by treatment”.

Conditions like diabetes arguably cannot ever be “reversed”, which suggests something more akin to “cured”; they can only be managed. The definition of terminal illness is now broader than it was ever intended to be.

[Tom Gordon]

Prior to being elected to Parliament, I worked for a type 1 diabetes charity—I feel like I have been saying that a lot recently. When we talk about diabetes, we often do not consider the fact that there are different types, including type 1, type 2 and gestational. They are not all akin, or the same. Furthermore, the NHS in its own language has referred to it as “a lifelong condition”, rather than a disease or anything that is terminal. How would the hon. Lady reflect on that?

--- Later in debate ---

[Naz Shah]

I agree that we did hear that, but we did not hear from experts in the Bill, and at that point it was not discussed. While I acknowledge my hon. Friend’s point that we did speak to Sir Nicholas Mostyn, we did not have further evidence, and this measure was not in the Bill when we took evidence from those witnesses.

[Tom Gordon]

I find this a little bit baffling, because we had a comprehensive list of witnesses that we were able to circulate in advance. The format in which those oral evidence sessions were held was really helpful and informative. We were able to ask questions, and as the hon. Member for Ipswich mentioned, we were interacting with people and families. We heard from Pat, who gave oral evidence about his sister who had to go to Dignitas. Again, it was not just a small figure; a number of people brought this issue up. Could the hon. Member reflect on that?

[Naz Shah]

The crux for me is that at Second Reading, when the Bill was voted on, many Members cited that one of the central planks to that debate at the time was the six-month prognosis. The amendment would increase that to 12 months. As I have said, my concerns are that we are only three months on from that conversation and we are already trying to expand the Bill, which is why I would not support the amendment. I have said quite a bit on amendment 234, so I will leave it.

I will now speak to amendment 48, which I tabled. Under the current wording of the Bill, a person is terminally ill if their death

“can reasonably be expected within 6 months.”

My amendment would change that so that for a person to be considered terminally ill their death would have to be

“expected with reasonable certainty within 6 months, even if the person were to undergo all recommended treatment”.

One of the risks that confronts the Bill is that of misdiagnosis. That is not some remote possibility. Let me go into detail. As hon. Members know from the evidence brought before the Committee, prognosis is not a precise science. Even with physical illnesses, determining life expectancy is highly unreliable. Government data from the Department for Work and Pensions reveals that one in five people given six months to live are still alive after three years. A study spanning 16 years found that doctors wrongly predict how long terminally ill patients will survive in half of cases. Out of 6,495 patients who were predicted to die within six to 12 months, more than half—3,516, to be precise—lived longer than expected. If the Government themselves cannot accurately determine terminal illness for benefits, how can we rely on such predictions to justify ending lives?

Studies cited in written evidence submitted to the Committee have found that clinicians are routinely inconsistent and inaccurate in their prognostic assessments, often underestimating survival. Professor Katherine Sleeman, a palliative care specialist, underlined that point in her evidence to the Committee. Doctors face considerable difficulty in prognosing whether somebody is in the last six months of their life. Professor Sleeman cites studies based on large samples of patients for whom doctors prognosed life expectancy. The studies found that 47% of the patients whom they predicted to have six months to live in fact lived for longer than that—in some cases considerably longer.

I would argue that there is a danger in using the standard of prognosis currently in the Bill. The current research into doctors’ prognoses indicates that almost half of their estimates that a patient has six months to live are incorrect. We do not want people to choose assisted dying on the basis that they have only six months to live when a very high proportion of them will in fact live longer if they are not given assistance to die by taking a lethal drug or drugs.

My amendment would hold doctors to a higher standard of certainty. Under that measure, they would be explicitly held to prognosing that death would occur with “reasonable certainty” within six months, and that that would be true even if the patient underwent all recommended treatment.

Terminally Ill Adults (End of Life) Bill (Fourth sitting)

Tom Gordon Excerpts

Committee stage
Wednesday 29th January 2025 Public Bill Committees

[Sarah Olney (Richmond Park) (LD)]

Q Dr Griffiths, do you think it is possible that disabled people are likely to be or potentially more at risk of being coerced or otherwise persuaded to seek assisted dying as a result of the Bill?

Dr Griffiths: I think so—I think the coercion principles outlined in the Bill are incredibly weak in terms of the scrutinising and the process of how you judge whether coercion has taken place. We know that coercion is a complex issue, but put that against the context of disabled people’s lives; we are talking about disabled people who are struggling day to day to access sufficient support and to live in participatory, accessible societies. The feeling, then, of societal coercion—the feeling that this is a tolerable idea—highlights my concerns about coercion.

It also plays into the issue of support and assistance to understand what your rights are, not just in terms of what we are talking about here but broader disabled people’s rights. There is a lack of advocacy services available to disabled people, and there is a lack of support for disabled people to have accessible information about their rights. If you feel that assisted dying is your only choice—as opposed to accessing support or calling out discriminatory practices in, say, access to social care and healthcare—that highlights, again, situations where coercion will manifest. The infrastructure to support people either to respond to coercion, or to understand that they do not have to be in that position in the first place, is non-existent.

[Tom Gordon (Harrogate and Knaresborough) (LD)]

Q One of the things that we have heard from other countries that have assisted dying is that this is one of the strongest and most robust laws. I wonder whether Professor Shakespeare has any more views on how we could make the Bill even tighter, and provide support and further peace of mind to people who might be worried about it?

Professor Shakespeare: When I read the Bill, I thought that it did have many safeguards. It has, for example, five opportunities for a conversation with doctors or other supporters. That is a good safeguard. I think it makes a criminal offence of dishonesty, coercion or pressure, so that would scare off people. Miro is quite right—there are people who might put influence on somebody, but I hope that they would be covered under clause 26 as having committed an offence. That would scare people who may have a particular view against assisted dying.

How can we make it stronger? We could have more of an advocate for the person who is requesting assisted dying—somebody who will support them, within the law, to make that decision or to think about their decision. We are trying to make sure that everybody who is thinking that this is for them has the opportunity to talk about it and to think about it. The time and the conversations are all about that, but maybe an advocate also would be the person who is requesting this step, who is not a beneficiary in any way of that death, and they could be a neutral party to give advice. I am not sure. However, there is a lot here. There are five conversations. I am not surprised that people thought it was strong. I think it is a strong Bill.

There is scope for doctors and other medical practitioners to act on their conscience and to withdraw from this. Miro made a useful point, which is that we do not want any disabled person frightened of their doctor or worried that their doctor, who has been supporting somebody else to die, might do that with them. In conversation, Marie, we have talked about an assisted dying service as being a part of the NHS, but I wonder whether it might be specifically around this. I think that it is worth considering whether the average doctor is the person to whom a person should take a concern or a wish to die.

So this is about advocacy and maybe having a specific service for people who want to go down that route. However, I think it is a strong Bill as it stands.

[Tom Gordon]

Q One of the things that we have heard from other people and other jurisdictions is about moving away from a High Court judge, and having a multidisciplinary team and panel. Do you think that would further strengthen the Bill, and would you support that?

Professor Shakespeare: I think the law is only one of the influences that might be involved. There is also physical health, mental health and social wellbeing. I think a multidisciplinary panel might be a better way of finding out. But I bow to my friend Mr Amin, who has a lot more experience of legal panels than I have.

[The Chair]

Mr Amin, do you want to comment?

Yogi Amin: The way the Bill is drafted, the judges reviewing the case are not making an order; they are declaring a plan that someone else has produced and has put in front of them. It is a strong, independent, legal and judicial safeguard, as part of the Bill. My written submission, you will note, says that the courts are well used to doing that. The courts have been doing it for many years. They have been dealing with disputes over facts, disputes over capacity and disputes over medical treatment. They are able to identify safeguarding issues. The courts and the judges are certainly able to do it. I am not speaking to the question of capacity. If the question is about whether to introduce something different from a High Court judge, I will wait to see it and scrutinise it, but as it is drafted at the moment, I would say that a High Court judge is a strong legal safeguard as part of the mix of safeguards in the Bill.

Oral Answers to Questions

Tom Gordon Excerpts

Tuesday 7th January 2025 Commons Chamber

[Karin Smyth]

The hon. Gentleman makes an excellent point, particularly with regard to staff, who need support to continue their important work. A new start with new leadership is what they need, as well as implementation of the recommendations.

[Tom Gordon (Harrogate and Knaresborough) (LD)]

8. What steps his Department is taking to improve access to mental health services.

[Gideon Amos (Taunton and Wellington) (LD)]

20. What steps his Department is taking to improve access to mental health services.

[The Minister for Care (Stephen Kinnock)]

As Lord Darzi’s independent investigation found, around 1 million people are waiting to access mental health services in England. This Government will fix our broken mental health services by recruiting 8,500 more mental health workers, providing access to specialist mental health professionals in every school and rolling out young futures hubs in every community.

[Tom Gordon]

In my constituency of Harrogate and Knaresborough we have heard harrowing stories from people who have tried to reach out and get access to mental health services before they reach crisis point. Often, people end up facing months-long if not years-long waiting lists. When all too often they reach a crisis point, they end up having to access services as far away as Newcastle or Manchester. What are the Government doing to make sure that we can root local community mental health facilities in communities such as Harrogate and Knaresborough?

[Stephen Kinnock]

In addition to the measures that I just set out, in the Budget the Chancellor made funding available to expand talking therapies to 380,000 extra patients. We have a £26 million capital investment scheme for mental health crisis centres and, as always with this Government, investment goes with reform. We are finally reforming the Mental Health Act—that was first talked about when Theresa May was in 10 Downing Street. This Government are rolling up their sleeves and getting on with the job.

Oral Answers to Questions

Tom Gordon Excerpts

Tuesday 19th November 2024 Commons Chamber

[Stephen Kinnock]

Obviously the golden hello scheme for rural areas is very important. We are pushing forward on that, and I am pleased to say that hundreds have expressed interest in it and appointments are starting on that basis. The hon. Gentleman is right about training places. As I have already mentioned, we are very open to establishments and institutions coming forward with proposals for that. We are living in a country where the biggest cause of hospital admission for five to nine-year-olds is having their rotten teeth removed. That is a truly Dickensian state of affairs, and it needs to be fixed as a priority.

[Tom Gordon (Harrogate and Knaresborough) (LD)]

Earlier this year, I was at an orthodontist’s practice that carries out work on behalf of the NHS. It said the issue is that when people are referred to it by their general dentist, it cannot go on to do the orthodontic work because their teeth are in too bad a state, so they are referred back to the dentist, but they cannot get in because of waiting lists and issues. When we look at reforming dental contracts, will we look at orthodontic ones too?

[Stephen Kinnock]

Absolutely. As my right hon. Friend the Secretary of State has said, we have already met with the British Dental Association, and no issues are off the table. We absolutely need to look at orthodontists in the round as part of the contract negotiations, and we will certainly report back on that in due course.

Income Tax (Charge)

Tom Gordon Excerpts

Tuesday 5th November 2024 Commons Chamber

[Tom Gordon (Harrogate and Knaresborough) (LD)]

There are two key points that stick out in the Budget. The first has been referenced by colleagues from across the House, and it is the elephant in the room to which Liberal Democrats keep referring: social care. Members have eloquently made the point that if we do not fix social care, we will not fix the NHS. A personal experience of mine is a great example. A couple of years ago, my grandfather sadly passed away. He spent the last six months of his life bed blocking in hospital, repeatedly getting covid and pneumonia because he could not leave hospital and go home. I do not blame the NHS for his passing, but if he had been better cared for with an adult social care package at home, there might have been a different outcome.

The problem with the Budget is that while there is a token gesture for local government, what is provided is nowhere near enough to fix the gap in adult social care. The House is full of Members who have worked in local government and served as councillors, and who understand that often more than half a budget goes on adult social care. The problem will not be fixed by our tinkering around the edges; we need a lot more to support social care and the NHS.

I am worried about unintended consequences. A couple of weeks ago, I met a constituent who is working in the NHS. She is a single parent, and her daughter has SEND issues. Because local authority schools in the area could not meet her needs, she paid for her daughter to go to an independent, fee-paying school where she could get the support that she needed, but because of the introduction of VAT on school fees, my constituent will have to consider leaving the NHS and working in the private sector, so that she can afford to keep her daughter in that school and meet her needs. I am worried about the wider ramifications of some of the Government’s decisions. In this case, healthcare staff would be taken out of the NHS because of Budget measures. I hope the Government will reflect on that, and consider what more can be done to ensure that we support NHS staff in their current roles, whether that is giving them more pay rises or more support in the workplace, or by ensuring that someone does not have to leave their NHS role in order to afford to keep the provision of their daughter’s SEND needs and capabilities.

Earlier the Secretary of State made a point about prevention. Local authorities often provide that first line of public health prevention, but the money that underpins that is just not enough. We know that every pound spent saves countless more for the NHS, so I urge the Secretary of State to take a strong approach to prevention and invest in community pharmacies.

Access to Primary Healthcare

Tom Gordon Excerpts

Wednesday 16th October 2024 Commons Chamber

[Tom Gordon (Harrogate and Knaresborough) (LD)]

Let me begin by congratulating my Liberal Democrat colleagues on some fantastic maiden speeches, which have given me a lot to live up to. While I am on the subject of thanking people, let me confess that I committed a cardinal sin at my election count: I reeled off my Oscars award-style speech recognising everyone who had played a part in the previous 30 years of my life, but importantly forgot to acknowledge my agent—the worst thing that any political candidate or Member of Parliament could do. I have not yet lived that down.

Still on the topic of thank-yous and acknowledgements, I want to thank my Tory predecessor, Andrew Jones, for his hard work as a valued constituency MP, which many people mentioned throughout the election campaign, and for his work in securing bathing water status for the River Nidd.

This may seem a little too obvious, but the two principal towns in my constituency are Harrogate and Knaresborough. Knaresborough does not like coming second, for a good reason: it is the older town, an ancient market town featuring a fantastic castle and the Nidd gorge, with a view over the River Nidd. It has a strong sense of community, and I encourage anyone who has not heard of the Knaresborough bed race to google it after my speech—it is a truly unique event.

Harrogate is a famous old spa town. It has been renowned for its healing waters, which have drawn people from all corners of the globe, including the Russian aristocracy and—previously—its royal family. Agatha Christie turned up there after a nationwide manhunt. It is a place of intrigue, but in more recent years it has become a place of culture, a cultural gem in the north. We have the fantastic Harrogate international festivals, whose annual calendar ranges from literature to art and everything in between. We also have RHS Garden Harlow Carr—we are a flower town, and have won many awards at both regional and international bloom festivals.

We also have Harrogate Convention Centre. A little while ago, before I was born, Eurovision was hosted there. One of the most frequent suggestions that comes up is that I should launch a campaign to get Eurovision back. That relies on our getting millions of pounds of investment into the convention centre, something for which I have already been campaigning. This is probably a little-known fact for those on the Government Benches, but we will have something almost rivalling Eurovision next March, namely the Liberal Democrat spring conference—and the Glee Club will be in town!

As well as the towns of Harrogate and Knaresborough, my constituency contains a wide range of villages, but what interests me is the people—it is the people who make our area so fantastic. It is that Yorkshire grit, determination and resilience that really make our area shine. Let me give the House a few bits and pieces of potted history, featuring some famous and some more infamous folk from my part of the world. There is Mother Shipton, Knaresborough’s answer to Nostradamus, who was made something of a pariah and cast into a cave, and called a witch to boot. To this day, the cave is one of the biggest tourist attractions in the area. On the more infamous side, we play host to the childhood home of no friend of this place, Guy Fawkes; the less said about him, probably, the better. We also have more modern and contemporary people, such as the Lionesses’ Rachel Daly, and Olly Alexander as well. One person who sticks out in the history books is Blind Jack, who is said to have been the founder of modern road building. He built kilometres on kilometres, or miles and miles, of turnpikes centuries ago, and rumour has it that North Yorkshire council might get around to repairing them some time soon. As I have said, it is the people who make my constituency great.

Let me now reflect on the topic of today’s debate. I think the reason health is so important to us is that in those moments of desperation, worry and anxiety when we reach out and go to that frontline of primary healthcare—when we see our GPs—we are truly human. Looking back at some of the more formative moments of my life and experience, my life has been changed when I have gone to a GP.

It is apposite that I am giving my maiden speech today, during Breast Cancer Awareness Month. People have been wearing lot of fantastic bright pink outfits to highlight that cause. The reason I got involved in politics is that the day before I started my master’s degree in public health, my mum was diagnosed with breast cancer. Fortunately, she has recovered and is fine now, and I have even made her a Lib Dem councillor in Wakefield— she has not yet forgiven me for that. When we were going through that experience, I dropped down to doing my degree over two years so that I could look after her and my little sister, who was just five at the time.

We know that being able to access healthcare is the most important factor in getting a good outcome. Fortunately in our case, my mum was fine, but the complications of having gone through lots of surgery and chemotherapy still live with her today. As someone who lives with a chronic condition—earlier this year I was diagnosed with ulcerative colitis—I know that getting through the door to see a GP can be the biggest barrier to getting a diagnosis, treatment and support.

I would not be here without my constituents. It is an honour and a privilege to have been elected to represent the people of Harrogate and Knaresborough, and I shall do my best, whether it be on health, culture and tourism, or whatever wonderful fortunes and opportunities await me.

Unpaid Carers

Tom Gordon Excerpts

Tuesday 3rd September 2024 Commons Chamber

[Wendy Chamberlain]

I am grateful to the hon. Member for that intervention. He is absolutely right, and as he and I know, having served in the last Parliament, during covid the lack of respite care was a critical factor for many carers. It is clear that we all need to do more in that area.

We were talking about how vital carers are to our economy and society. The economic value of unpaid care is £162 billion a year in England and Wales, £13.1 billion in Scotland and £5.8 billion in Northern Ireland. We know the country’s finances have been left in a ruinous state by the last Government, and that the social care system is already stretched to breaking point. We must also know that we cannot take the contribution of unpaid carers for granted, so I hope that the Minister will take tonight as an opportunity to show that the Government do care about unpaid carers.

In a debate shortly before the general election was called, the then shadow Minister for care, who is now a Minister, the hon. Member for Gorton and Denton (Andrew Gwynne), committed Labour to developing a new carers strategy if it formed the next Government:

“There will be a carers strategy under the next Labour Government, because we value the vital work our carers do. It will be a cross-Government strategy with the Department for Work and Pensions, Department for Education and the future of work review all feeding into it along with the Department of Health and Social Care. There is a brighter future for those living with dementia and their families and carers. Labour will deliver it.”

Given that promise, I hope that the Minister can understand why I and many whom I have spoken to in the care third sector were disappointed that unpaid carers were not mentioned at all in the Labour manifesto. At the same point in the speech I just referred to, the then shadow Minister said that unpaid carers

“will be at the heart of Labour’s plans in Government.” —[Official Report, 16 May 2024; Vol. 750, c. 228WH.]

I hope the Minister will take tonight’s debate as an opportunity to make that case.

[Tom Gordon (Harrogate and Knaresborough) (LD)]

I thank my hon. Friend for bringing forward this Adjournment debate, and of course for the work she did before this parliamentary Session on what is now the Carer’s Leave Act 2023. One of the reasons why I became involved in politics is that the day before I started my master’s degree, my mum was diagnosed with breast cancer. I studied my degree part-time over two years to look after her and my little sister, who was just five. Looking back, it is clear that I was filling the role of a carer, but I did not identify as one. That is a key point to note if we are to have a carers strategy. A recent Carers Trust survey found that 73% of those who provide or have provided unpaid care do not identify as unpaid carers. Does my hon. Friend agree that a national carers strategy should prioritise the identification of carers across all sectors?

[Madam Deputy Speaker (Ms Ghani)]

Order. This is an Adjournment debate and interventions must be super-short.