Terminally Ill Adults (End of Life) Bill

Patricia Ferguson Excerpts

Report stage
Friday 13th June 2025 Commons Chamber

[Kim Leadbeater]

It is a privilege to open today’s debate and to present to the House the amendments tabled in my name, a number of which relate to issues that I promised to return to when they were raised in Committee. All amendments in my name have been drafted with technical advice and expertise from civil servants from the Department of Health and Social Care and the Ministry of Justice, along with the brilliant Government Legal Department and the Office of the Parliamentary Counsel, in order to make the Bill workable and to give coherence to the statute book, as confirmed by the Minister for Care, my hon. Friend the Member for Aberafan Maesteg (Stephen Kinnock), and the Minister for Courts and Legal Services, my hon. and learned Friend the Member for Finchley and Golders Green (Sarah Sackman), in their recent letter to MPs. Some are technical and drafting amendments, and all are there to strengthen the Bill, so I hope that colleagues will be able to support them, wherever they stand on the principle of assisted dying.

I know that many colleagues wish to speak today, so I will endeavour to speak with brevity. I will speak first to the new clauses that stand in my name, starting with new clause 13. This important new clause and the related amendments would create a regulatory framework and safeguards around the approved substances referred to in the Bill by imposing a duty to make regulations about those substances and a power to make regulations about devices for use in connection with their self-administration.

Amendment 72 provides that the regulations relating to approved substances would be subject to the affirmative procedure, meaning that they must be laid before Parliament and approved by resolution of both Houses, providing important parliamentary oversight. These measures ensure that the substances used in assisted dying are subject to a specific and appropriate regulatory regime.

[Patricia Ferguson (Glasgow West) (Lab)]

I am genuinely looking for clarification. As a former Cabinet Minister in the Scottish Government, I jealously guard the devolution settlement. I wonder how the extension of some of these clauses to include Scotland will be interpreted. What conversations have taken place between my hon. Friend, Scotland’s Lord Advocate and the Scottish Government?

[Kim Leadbeater]

I have taken legal advice from Government officials to ensure that devolution is respected at every stage in proceedings. Where legislation that affects other jurisdictions needs to be amended, those conversations have already started and will continue.

--- Later in debate ---

[Ellie Chowns]

The evidence shows that it is dying people themselves, facing the end of life, who wish to have the choice. Only small numbers of them will take up that choice, but it is crucial, humane and compassionate for us to offer them the choice. Assisted dying is complementary to palliative care, not contradictory, and this Bill has been through a huge amount of scrutiny—far more than any other Bill in this Session. Therefore, I deeply hope that the House will pass this compassionate, humane, clearly drafted and tightly structured Bill, to offer a dignified death to those who are facing death.

[Patricia Ferguson]

I rise to speak to my amendment 13, which concerns the appointment of the voluntary assisted dying commissioner. In Committee, it was decided that the Prime Minister would appoint the voluntary assisted dying commissioner, and that the appointee would serve for five years and be responsible for appointing the assisted dying review panels. The commissioner would also oversee the training of panel members, give them guidance on the procedures to be used and, crucially, decide when a case that a panel has refused should be referred to another panel for reconsideration. According to the Bill, the commissioner will not be acting as a judge, but they must be a current or former senior judge of the Supreme Court, Court of Appeal or High Court. However, they are not required to have any expertise in medicine or healthcare.

Importantly, following our considerations in Committee, the Bill no longer requires that the chief medical officer be responsible for monitoring whether or not the assisted dying regime complies with the law. That responsibility has now been transferred to the voluntary assisted dying commissioner, so the person in charge of overseeing the process and setting up the panels will also be the person deciding whether the Act is being administered correctly.

[Jonathan Davies]

Given the scandals we have seen in healthcare over many years, from infected blood and medicines that should not have been prescribed to what happened at Mid Staffs hospital, it is clear that having that independent, robust oversight from the chief medical officer is a good way forward if people are going to be able to trust this legislation, if it comes into law.

[Patricia Ferguson]

My hon. Friend makes a valid point. The point of my amendment, as I will come on to, is that we need to ensure as much scrutiny as possible in this regard.

From what I have outlined, this is clearly an exceptionally important post, which carries great responsibility and significant power; indeed, it seems the postholder will require the judgment of Solomon to be able to fulfil their role. It is therefore surprising that, as the Bill stands, there is no requirement for pre-appointment scrutiny by the relevant Select Committee, despite the profile of the post and the controversy it will inevitably attract.

Considering that such pre-appointment scrutiny is required for the chair of the Competition and Markets Authority, the chair of the BBC, the chair of the Charity Commission, the Information Commissioner, the chair of the Care Quality Commission, the health service commissioner for England, the chair of the Judicial Appointments Commission and the chair of the UK Statistics Authority, the omission of such scrutiny in this case is clearly a serious oversight, which my amendment seeks to remedy by ensuring that the correct Select Committee has the power of scrutiny.

In my view, we need to guard the rights and privileges of Parliament jealously. We must ensure that Parliament is involved in the scrutiny of this legislation going forward as much as we possibly can. The Bill itself requires this to be as rigorous and transparent as is possible. No matter what side of the debate we are on, it is important to ensure that the Bill is as strong and as good as it possibly can be; we owe it to the people who send us here—the people who have been writing to us in such great numbers. My amendment seeks to strengthen the Bill in respect of the voluntary assisted dying commissioner.

[Dr Caroline Johnson (Sleaford and North Hykeham) (Con)]

I refer right hon. and hon. Members to my entry on the Register of Members’ Financial Interests—I am an NHS consultant paediatrician.

The debate so far has focused primarily on ethical considerations, legal frameworks and who will be eligible—the who, the when and the why—but I want to focus my remarks on the how. As a doctor, I know that various drugs in different combinations can be fatal; in other words, there is more than one way to kill people. Which would be the best drug, if that is what we wished to do? Which would be the most comfortable, and how do we know?

Some forms of assisted dying use neuromuscular blockades, which, in common parlance, means that they paralyse the body. Imagine a situation where someone in a lot of pain is given such a drug; from the outside they would look relaxed and peaceful as their muscles relaxed, but inside they would be in a lot of pain, and unable to express that to anybody else. Do we want people to be comfortable and to know that they are comfortable, or only to appear comfortable to us? Clearly, we want them to be comfortable inside as well. We therefore need to have drugs that are properly understood and regulated for this purpose.

Assisted dying is often portrayed as safe, peaceful and controlled, but the reality in comparable countries where it has been legalised so far is more complicated. Technical difficulties frequently arise, leading to complications causing greater suffering, requiring intervention and potentially leading to a prolonged and painful death.

A report in The BMJ by Dr Suzy Lishman, former president of the Royal College of Pathologists—who, I should say, works at the same trust as me—showed that there is a lack of reliable data on the effectiveness and safety of the drugs used, largely due to inconsistent reporting in jurisdictions where such dying is legal. In Belgium it is estimated that only 52% of euthanasia cases are reported to the Federal Commission for the Control and Evaluation of Euthanasia.

During a Select Committee visit in the last Parliament to Oregon to discuss assisted dying, which I and two other hon. Members from the Labour Benches went on, we heard about the complications being unknown in 71% of cases. No healthcare professional was present when the drugs were given so we could not really know, and we did not even know if the drugs had been taken in some cases. Where we did, we found a history of seizures, vomiting and prolonged deaths. On having been given the drugs, patients in nine cases in Oregon in 2023 had reawakened later. How they felt in the intervening time is difficult for us to know.

In Washington, a 2018 report found that 31% of patients took more than 90 minutes to die. I also remind hon. Members that an absence of evidence that things are not going well is not evidence of an absence of things going wrong.

Dementia Care

Patricia Ferguson Excerpts

Tuesday 3rd June 2025 Commons Chamber

[Caroline Voaden]

So many thousands of people are doing this care for free, at home, living under this burden and worrying about what will happen if they are no longer there. They deserve recognition and help to put those plans in place, in case something happens to them—that is crucial.

For many families, accessing respite care is a huge challenge. Caring for someone with dementia is often a 24/7 job and is utterly exhausting, yet unpaid carers like Michael are saving the country billions of pounds and are often doing so without the support they need. Michael echoes the calls I have heard in my own family for the Government to do more to support carers by ensuring they have access to regular respite care. We must also urgently examine the funding and availability of care homes that can support high-needs dementia patients.

[Patricia Ferguson (Glasgow West) (Lab)]

I thank the hon. Member for taking so many interventions; it is very welcome. As she will be aware, health is devolved to the Scottish Government, and we Scots have a slightly different system. However, Alzheimer Scotland has called on the Scottish Government to commit to recognising that the needs of people with advanced dementia are healthcare needs and to ensure equality of access to appropriate health and nursing care that is free at the point of delivery, regardless of our geography. Does she agree that that is what we all want for our loved ones?

[Caroline Voaden]

There is a lack of equity, is there not? I looked at Hansard, and dementia has been mentioned 192 times since the general election last year, but cancer has been mentioned nearly 1,000 times—we have spoken about cancer five times more than we have about dementia. That shines a light on what a hidden problem it is, and yet it is not hidden, because we all have experience of it.

We must urgently examine the funding and availability of care homes and find a way to reduce the staggering costs, which can cripple family finances and local authority budgets. House of Commons Library research commissioned by the Liberal Democrats has shown that the cost of care in nursing homes increased by 61% from 2015 to 2022. That is why the Liberal Democrats are calling for the introduction of free personal care in England, based on the model introduced by the party in government in Scotland in 2002, so that provision is based on need, not ability to pay.

Parkinson’s Awareness Month

Patricia Ferguson Excerpts

Thursday 1st May 2025 Commons Chamber

[Patricia Ferguson (Glasgow West) (Lab)]

I congratulate my hon. Friend the Member for Dunfermline and Dollar (Graeme Downie) on securing this important debate at the end of Parkinson’s Awareness Month.

I would like to begin by paying tribute to my old friend and former colleague Margo MacDonald, SNP Member of this House briefly in the 1970s and Member of the Scottish Parliament for the SNP and as an independent from 1999 until her death in 2014. Anyone who knew Margo will remember that she was a force of nature and that anything she did was done with her typical determination, wit and good humour. I credit Margo with my limited understanding of Parkinson’s and its variability, because for all the time she was in the Scottish Parliament she had Parkinson’s, but it did not stop her being one of the most effective communicators and advocates for her constituency.

In my constituency, some 222 people are believed to be living with Parkinson’s as we speak. I want to thank those who care for them—professionals, family members and volunteers alike—for their hard work and commitment. As we have heard, there is no cure for Parkinson’s, and current treatment can manage only some of the symptoms. It can be a frightening disease, and one that can lead to depression and despair.

In Scotland alone there are approximately 30 new diagnoses every week. In 2024, Parkinson’s UK in Scotland produced an excellent report called “Scotland Can’t Wait”. In the report, Parkison’s UK in Scotland highlighted the many challenges that people with Parkinson’s currently face and the problems that will arise if the challenge of the increasing number of people being diagnosed is not addressed. The report drew on experience and robust data and makes some very important points.

It highlights that investing in professional staff who can offer the kind of specialist treatment that people with Parkinson’s need would be an important step forward. Existing staff are already stretched, and if action is not taken soon they will be pushed to breaking point. Ensuring that people get the appropriate medication when it is needed, whether they are in hospital or at home, is also vital. Crucially, the mental health impacts of Parkinson’s need to be addressed, including Parkinson’s dementia, which can be frightening for patients and their families.

A recent freedom of information request revealed that since the year 2020, less than half a million pounds was spent by the Scottish Government on research into Parkinson’s disease. By my calculations, that is something like £34 per person suffering from the disease in Scotland. That seems to me to be a woeful amount of money. I recognise that the effort to find a cure for Parkinson’s will inevitably have to be a global exercise, and one that this Government, I am sure, will want to play a large part in. But everyone has to get their act together and up their game, including the Scottish Government. At the end of the day, we want to find a preventive approach to Parkinson’s, but a cure along the way would be helpful too.

Parkinson’s UK in Scotland called its report “Scotland Can’t Wait”, and rightly so. The 30 people diagnosed every week cannot wait, and the 222 people in Glasgow West certainly cannot either. It is time for Governments on both sides of the border to act and work with Parkinson’s UK and Parkinson’s UK in Scotland to ensure that we do better for people with Parkinson’s for their families and the staff who support them. Parkinson’s UK has shown us the way; it is now time that we follow it.

[Madam Deputy Speaker (Ms Nusrat Ghani)]

We now come to the Front Benchers. I call the Liberal Democrat spokesperson.

Prevention of Drug Deaths

Patricia Ferguson Excerpts

Thursday 27th March 2025 Westminster Hall

[Patricia Ferguson (Glasgow West) (Lab)]

It is a pleasure to serve with you in the chair, Dr Murrison. I congratulate the hon. Member for Strangford (Jim Shannon) on securing a debate on this important subject. I associate myself with the comments of my hon. Friend the Member for West Dunbartonshire (Douglas McAllister) about Christina McKelvie. I served in the Scottish Parliament with Christina for some 10 years, and she was, perhaps ironically, a real lover of life and a force for good.

I will focus on the Scottish Affairs Committee’s ongoing inquiry into the operation of the safer drug consumption facility in Glasgow, which is the first of its kind in the UK. My contribution will be entirely factual, as I do not want to prejudice the inquiry in any way, or to pre-empt any decisions the Committee may make. It is an important issue and relevant to this debate.

To give some context to the rationale for the safer drug consumption room: Scotland has the highest number of drug deaths in Europe by some margin. The data tell us that some 1,172 people died in 2023 alone, which was up by 121 on the previous year. Much of the action that can be taken to address this problem comes under the powers of the Scottish Government, but that, of course, does not include issues arising from the Misuse of Drugs Act 1971.

The Scottish Government have introduced a variety of measures, but I am speaking specifically about the safer drug consumption space. There are now some 200 such facilities in 12 countries around the globe, and the Scottish Parliament’s information centre explains that:

“Several long-term evaluations indicate that attendees of SDCFs engage safer injecting practices and reduce public injecting, leading to significant declines in HIV and Hepatitis C transmission and fewer ambulance callouts for overdoses.”

The idea of such a facility in Glasgow was first raised more than 10 years ago, but a variety of issues, including the reluctance of the then Lord Advocate, meant that the pilot facility opened in Glasgow only in January 2025, following considerable public engagement and after the current Lord Advocate provided a statement of prosecution policy. Although the possession of drugs remains a criminal offence, the Lord Advocate has indicated that it would not be in the public interest to prosecute users of the facility for simple possession offences, subject to certain limitations. I stress that this applies only to the facility.

Last month the Scottish Affairs Committee visited the Thistle, as the Glasgow facility is known, and we saw for ourselves what was on offer. Users have access to a shower and can receive treatment for wounds and other health issues associated with their addiction. Discrete spaces where users can inject are also available, and staff can offer clean needles. Users bring their own drugs, but staff can give advice when they become aware that a particularly strong or pure drug might be in circulation, so that users are aware of potential dangers. Clients can choose to stay at the centre for a time after injecting. So far, two overdoses have occurred on the premises, but they were dealt with either on site or in other locations, and both individuals made a recovery. Staff can also signpost clients to other services.

Since the Thistle opened in January, there have been over 140 unique service users, more than 1,000 visits, more than 700 injecting episodes managed on site, and the prevention of some 700 to 800 items of drug-related litter in public spaces in the vicinity of the centre. Eighty per cent of the clients are male.

The Thistle is a pilot scheme and will be carefully reviewed and analysed over the next three years to ascertain whether it has helped to reduce bloodborne viruses and other drug-related harms and death. It has become clear to the Committee that the staff working at the Thistle are dedicated, committed, welcoming and non-judgmental. I encourage Members to look out for our report when it is published.

Oral Answers to Questions

Patricia Ferguson Excerpts

Tuesday 25th March 2025 Commons Chamber

[Wes Streeting]

The Chancellor took almost immediate action to deliver the uplift in pay for NHS staff that they deserve. We are working closely with the Royal College of Nursing, Unison and others ensure that we tackle the challenges of low pay in the nursing profession that the hon. Member describes.

[Patricia Ferguson (Glasgow West) (Lab)]

T5. Since being elected, I have been contacted by a number of constituents registered with a GP in Scotland who find themselves unable to get medication for which they have a prescription while visiting England. Will my hon. Friend take steps to encourage NHS England and NHS Scotland to work together to find a solution that works for patients?

[The Minister for Care (Stephen Kinnock)]

I am very sorry to hear about my hon. Friend’s constituents’ experience. Accessing vital medicines while travelling between nations should be seamless, and I will ask NHS England to work with NHS Scotland to better understand what needs to change to make things easier for patients across the UK.

Rare Cancers Bill

Patricia Ferguson Excerpts

2nd reading
Friday 14th March 2025 Commons Chamber

[Patricia Ferguson (Glasgow West) (Lab)]

I thank my hon. Friend the Member for Edinburgh South West (Dr Arthur) for bringing forward this Bill. If, as we always say, politics is the language of priorities, then my hon. Friend has got his absolutely correct. I thank all Members who have shared their experiences and their stories, some incredibly moving. They should be what inspires us to take forward all the action we are proposing today.

I was struck by the fact that the hon. Member for Wokingham (Clive Jones) and I have something in common, which we probably would not want to have in common, in that we were both diagnosed with breast cancer in 2008. I have to say, my breast cancer was a strange breast cancer, and it always feels slightly strange talking about it, because no one’s ever heard of it. It is not a rare cancer as such, because it is a breast cancer, although there are some who argue it is actually a soft tissue sarcoma—whatever, it was treated as a breast cancer. It is called a phyllodes tumour.

Unlike other breast tumours, phyllodes tumours do not go into the ducts, but into the connective tissue. It presents differently from other cancers of the breast, and the treatment is also different, in that the only treatment that works is excision. Excision can be anything from a lumpectomy to a mastectomy. The hope is that there are clear margins, which mean the patient will be okay, but—and it is a big “but”—when a malignant phyllodes tumour is present, it can spread, and it can be difficult or impossible to treat. That is when it becomes a very different outcome.

I mention it today not because it is a rare cancer, but because it can be difficult to diagnose. It does not show up in a mammogram, for example, and there is no definitive explanation why such tumours occur. Some research is going on just now, but it is not conclusive as yet. A lot more work needs to happen, and because incidence is so low, it is difficult to research. The things we know about it for certain seem random to me. They tend to occur more often in the left breast. Why? I have no idea. They usually occur when a patient is in their 40s. As I have said, they do not seem to respond to chemo or radiotherapy, and they are not thought to be genetic or hormonal.

The reason I mention my case is that it can be a lonely thing to have an unusual cancer. When trying to explain it to family and friends, you say, “No, it did not show up in a mammogram. No, I am not getting chemotherapy or radiotherapy. No, I do not know why it happened. No, I had not heard of it either.” You begin to doubt yourself a little, and you begin to question what is actually going on. For someone with a very rare cancer, it must be incredibly difficult when there is not a background of research, not anything that they can read, and no one can give them a pamphlet about it and tell them what is happening.

It seems to me that we should know more about cancer full stop. We have got to 2025, and we know some things about cancer. We know how to treat some cancers, but there are so many others that we do not have the answer for. We need people to be diagnosed more quickly, which means that we have to have the research. We need people to have the best possible treatment, which means we have to look at the drugs and find out what works and what does not work, and where a drug can be transferred from one thing to another successfully. Crucially, we have to know why it is that some people get cancer and others do not.

This Bill will make a huge difference to the lives of some of the people we have heard about today. For some, as we know, it will not be soon enough. It is the responsibility of every single one of us to make change happen, and we have an opportunity today to take that step forward. My hon. Friend the Member for Mitcham and Morden (Dame Siobhain McDonagh) spoke about her sister, Margaret, who I worked with for a time in the Labour party. While I was listening to the other speeches, I was reflecting on what my hon. Friend said. I think we all need to be angry. We need to say—to shout it from the rooftops—that change begins today.

[Madam Deputy Speaker (Ms Nusrat Ghani)]

That was very powerful. I call Leigh Ingham.