Terminally Ill Adults (End of Life) Bill

Baroness Grey-Thompson Excerpts

Committee stage
Friday 6th February 2026 Lords Chamber

[Lord Harper (Con)]

My Lords, I will speak briefly to put on the record one useful piece of information, which is very relevant to the debates that we have had. Somebody previously referred to the welcome cancer plan that the Government published, and I thought it worth sharing with the Committee that there was an important and relevant piece of information in the plan that your Lordships might wish to be aware of.

I think the noble Lord, Lord Stevens of Birmingham, referred to the Government’s plan for palliative care. When we spoke about it, I think just last week, the expectation was that that plan would be published this autumn—I hope the Minister can confirm that I have got that right. The cancer plan makes it clear:

“Next year, we will publish a Modern Service Framework on Palliative and End of Life Care to address these challenges”.


Without being explicit about it, the palliative care plan has now slipped into 2027, with no indication of when in 2027. Given my experience of these things, it could easily be the end of 2027. We are being asked to consider the Bill when the Government are not even going to publish their palliative care plan until some time next year—and it has already slipped twice in a few months.

I draw two lessons from that. First, if we do not have high-quality, universally available palliative care then we are not giving people a genuine choice. As my noble friend Lord Shinkwin said, expectations in society will push people inevitably towards assisted suicide, whether they really want it or not. The second thing that says to me is that palliative care is not really a priority for the Government. If you cannot even produce the plan to improve palliative care, which was originally going to happen this year, until some time next year, with no specific date attached to it, heaven knows what your priority will be when actually delivering the services that people require. My sense is that, if the plan will not come out until next year, we will not see improved services even in this Parliament. In that case, there is no meaningful choice. On that basis, we should not proceed with this Bill.

[Baroness Grey-Thompson (CB)]

My Lords, I have added my name to Amendments 82 and 83A, in the name of the noble Lord, Lord Polak. I note that Amendment 83, which was tabled by my noble friend Lady Murphy and the noble Baroness, Lady Noakes, has been withdrawn. It would have extended the period of eligibility from six to 12 months for neurological conditions.

I added my name to these two amendments because it is important to have real clarity on what we mean by a six-month diagnosis, as well as to have specialist certification by an independent consultant. I added my name because Professor Paddy Stone, who is the former head of Marie Curie palliative care research department at UCL, said there is no reliable way to identify patients with a six to 12-month diagnosis and no method that would provide an adequate safeguard. We have to remember that no royal college supports this Bill or thinks that the safeguards in it are good enough.

Amendments 97 and 98 would tidy up the language in the Bill. This is quite a minor point, but “person with a disability” does not exist in law. It is used interchangeably in the Bill and society, but “with a disability” suggests that my impairment is something I can pick up or put down at will, which I cannot. To show some understanding of what disabled people experience, the Bill should use the language of both the DDA and the Equality Act, and should recognise that the social model of disability exists. I do not know whether the drafting was a refutation of the social model, or perhaps a drafting mistake, but it shows a lack of connection to disabled people and deaf and disabled people’s organisations. We are told that language changes all the time—it really does not. Different language may be used around the world, but this is British law, and we should use the words that are in Acts that already exist.

Last week, the noble Lord, Lord Harper, mentioned things we think we need to fix but never get round to, and I thought of an example at the time. The DDA—I sat on the National Disability Council with the noble Lord, Lord Shinkwin—said 31 years ago that taxis in this country should be wheelchair accessible. Thirty-one years later, we have still not sorted it. I have tabled an amendment to the English Devolution and Community Empowerment Bill, for next week, to fix that. Given that we have had to wait 31 years for taxis to be accessible for disabled people, can noble Lords not understand why disabled people fear this Bill?

Amendment 106 in the name of the noble Lord, Lord Hunt of Kings Heath, and my noble friend Lady O’Loan looks for clarity on that six-month diagnosis. We are constantly told there is nothing to worry about, but those are easy soundbites. The Bill is caught between two competing policies: trying to ensure safety versus personal choice. The state has a duty to ensure that those choices are sufficiently informed and based on accurate medical assessment. Building in an independent prognosis would recognise that, in a life-ending law, the margin for error must be minimal and oversight must be robust. It would send a clear signal that assisted dying is exceptional and that those who seek it must face rigorous, medically sound scrutiny that reinforces public trust and protection for vulnerable individuals.

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The next group of amendments tries to reduce or have a higher standard of proof for the six-month period. For example, the proposal from the noble Baroness, Lady Lawlor—

[Baroness Grey-Thompson (CB)]

My Lords—

[Lord Falconer of Thoroton (Lab)]

May I just finish this?

For example, the noble Baroness, Lady Lawlor, proposed 80% and two people expert in the area. The requirement of the Bill is that there should be a reasonable expectation that the person’s death will come within six months. That has to be approved by two separate doctors and a panel. Where there is any doubt about the prognosis, each or both of the doctors have to seek the advice of somebody specialist in the area. That seems an appropriate degree of safeguard.

I apologise to the noble Baroness.

[Baroness Grey-Thompson (CB)]

I just wanted to clarify what the noble and learned Lord said. He said, as I understand it, that he did not support these amendments because they would mean that a dying person would have to make difficult decisions. Is requesting assisted suicide not a difficult decision, which they would already be taking?

[Lord Falconer of Thoroton (Lab)]

Of course it is a difficult decision, but that is the decision the person has to be clear, firm and settled about. I do not see parity between the decision the individual has to make and making sure there are appropriately qualified people ensuring that the person has the disease. They seem to be two important but different requirements.

The next group of amendments, primarily advanced by the noble Lord, Lord Frost, is on the question of whether suffering should be an element in the eligibility—that terminal illness itself is not sufficient. We have had this debate a number of times, particularly at Second Reading, on some the circumstances where a terminal illness should be excluded. For all the reasons I have given in the past, I am not in favour of suffering being the requirement. What suffering is will vary from person to person. In some cases, it will be the indignity. In some cases, it will be the appalling thought of the change in relationship with those they love. For others, it will be the pain they are going through. It is not, in my respectful view, an appropriate or easily applied condition. So, for all the reasons I have given on a number of occasions before, I am against putting in the question of suffering.

The next group of amendments is that advanced this morning by the noble Baroness, Lady O’Loan. They say that if you are the victim of medical negligence, you should not be entitled to an assisted death. If, for example, your doctor failed to diagnose your condition early enough for you to get treatment and, as a result, you are likely to die earlier, even though you have the condition—for example, prostate cancer—is the position that, because of the negligence of your doctor, you are truly to be denied the right to an assisted death? Unfortunately, I cannot see the logic of that.

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[Baroness Royall of Blaisdon (Lab)]

My Lords, many points have been made around the Chamber about disability. The most recent large survey, carried out by Opinium in February 2024 of nearly 11,000 respondents in the UK, showed that 75% of the general population were supportive of the Bill and 14% opposed it. Of those who had a disability, 78% were supportive and 14% were opposed. It is very important to put those figures on the record.

[Baroness Grey-Thompson (CB)]

My Lords, Amendments 88 and 89 are in my name. I tabled them based on my experience in my former career as an athlete, where I knew a significant number of men and women who had varying degrees of eating disorder. I probably had disorderly eating behaviour rather than a diagnosed eating disorder. I very carefully managed and adjusted my eating to try to achieve my goals.

As an athlete, you have a number of measurements. You have your skinfolds measured several times a year; the amount of fat you have in your body is measured. Keeping your funding going is dependent on having low results, as well as on your performance measures. I competed in a sport where power to weight was really important. My race weight, as an adult female, was 45 kilograms—about the same weight as an 11 year-old girl. I had to keep to that weight because I had a very expensive chair built around it.

In the process of training, I vomited regularly. I cannot remember a dentist who has not asked me, very directly and with no particular care around me, “Are you bulimic?”, because my teeth show signs of bulimia. If I was, I do not think that would have been the way to address it. I have had a very close friend who became very ill with anorexia. You are in this impossible situation of trying to help, support and guide them through. It is a terrible thing for people to go through.

That is why I find it slightly extraordinary that we are still having to deal with these questions today in the Chamber, because the danger of this Bill to people with eating disorders was first raised on 30 October 2024. Eighteen experts, including leaders of the Royal College of Psychiatrists’ eating disorders faculty, signed a letter to the BMJ saying that the Bill

“fails the public safety test”.

Since then, the issue has been pointed out in oral evidence to the Public Bill Committee by Chelsea Roff, it was discussed in Committee in the other place, the Bill has been amended with support from the Commons sponsor on Report and the issue was raised by a coalition of eating disorder charities in two open letters and by the Complex Life and Death Decisions group at King’s College London. However, I think it still has not been resolved—as the noble and learned Lord, Lord Falconer, presumably agrees, because he has tabled an amendment in this group to fix the issues.

Last week, we discussed in-person assessments and several noble Lords noted that the honourable Member for Spen Valley, Ms Leadbeater, had identified Zoom consultations as a potential problem and said she was considering an amendment, but the issue had never been resolved. Something analogous has happened with eating disorders. Everyone knows that there is a problem, but nobody has found a way of fixing it. This is significant, first, because it shows why this whole process is taking longer than it might have needed to, and, secondly, because it is unclear how the sponsor wants us to interpret Amendment 87.

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These amendments are designed to fix a real hole in this legislation, and to give a working capacity definition. I need not say much more; I have explained the CLADD. Right through this process, up until the very last moment when the substance is issued and is about to be administered, those concerned, such as the doctor and the assisting professional, must be properly informed and satisfied on a proper and fundamental basis that, to put it simply, the person knows what they are doing and has the capacity to make that judgement.

[Baroness Grey-Thompson (CB)]

My Lords, I rise to speak to Amendment 119 in my name and that of my noble friend Baroness Hollins. This seeks to insert a new clause to provide a mental capacity assessment for people with learning difficulties, and to have a clearer view of who would be able to carry out that assessment. The noble and learned Lord said last week that he would respond on this when we got to Clause 22. As we are discussing Clause 22 stand part in this group of amendments, I assume may he reply to me. I also wrote to the noble and learned Lord this week with a number of concerns; I will not read the letter out now, because it raises a few different issues. One of them was on the advocate. I understand that many noble Lords will not have seen that letter, so I will publish it.

Some of the issues that I am concerned about in this clause are around how important advocates are, and the safeguarding that they can provide. In another place, Daniel Francis MP tried to ensure that advocates were there as part of the decision, but that was voted down as an amendment. What we have now is something that I believe is somewhat weaker, because now an advocate has to be there only if instructed. It does not make it compulsory; it is optional. This seems to be a particular paradox, because somebody might not understand what they are turning down. I am not sure if that was what was intended by the noble and learned Lord.

In 2014, NICE held a public consultation to assess plans for new medical treatments to be given only to those deemed a benefit to society. Disabled people were not included in that. I wonder whether it was because NICE did not expect the response around disability to be terribly positive. In the equality impact assessment for the Bill, table 27 seems to suggest that there could be a saving to the NHS of £2,323 for every person with a learning disability who accesses assisted suicide. Will the noble and learned Lord confirm whether he reads that table in the same way that I do? Giving doctors the ability and the option to raise this with patients presents a serious risk of medical coercion. Negative judgments are made by professionals around the quality of deaf and disabled people’s lives all too frequently, as we saw with the “do not attempt resuscitation” notices that were put on disabled people during the pandemic without their permission or knowledge.

Written evidence submitted for the Bill by the All-Party Group on Down Syndrome said that most doctors

“do not receive adequate training in learning disabilities and Down syndrome”

and could

“misjudge capacity due to biases or lack of experience”,

which could lead to

“undue exclusion or unjustified inclusion in … discussions”.

We know that prenatal screening for Down syndrome and the pressure to terminate that comes after any diagnosis demonstrate the pervasive societal attitude that undervalues the lives of disabled people.

Studies from 2025 show that people with learning disabilities generally exhibit a high level of satisfaction with their lives, but that does not sit with the non-disabled peoples’ perception of those lives. I spoke recently to a nurse who works with people with learning disabilities who told me about their highly suggestible nature, which is why we have to put a lot of trust in those who work with people with learning disabilities. The example I was given was just over what somebody has for an evening meal: it was the case of an individual who always repeats the last thing they were told. On something very simple, given option A or option B for an evening meal, they will always pick option B. Whether they like that meal or not, they will pick it because they are so suggestible. This leads me to conclude that we have a failure to understand the reality of the lives of people with learning disabilities.

PubMed published an article in 2025 that looked at the Netherlands and reviewed 39 cases of those who had accessed the assisted suicide service because of intellectual disabilities or autism spectrum disorders. In 24 cases, the disability was the major contributing factor in the decision to ask for and grant the service. In 21% of cases, the only causes of suffering described were factors directly associated with intellectual disability or autism. I am sure that many of us have been contacted by people who are really worried about the impact that this could have on their families. I am afraid that, from my experience of working with people with learning disabilities—although not to the extent of my noble friend Lady Hollins—I am also very concerned.

Professor Irene Tuffrey-Wijne, a specialist in palliative care and the impact on people with learning disabilities, looked at studies in the Netherlands and at what is happening in the UK. She said that people with severe learning disabilities would not meet the criteria, but there is a real danger and risk for those with mild disability. In the UK, there is nothing in the proposed legislation to prevent a doctor raising the question and how it is offered. People with learning disabilities have internalised the message that they are not as important as others and are likely to hear the raising of the question as a suggestion that this might be the right thing to do. It becomes normalised and it becomes “when”, not “if”. If someone living with others who have similar issues has it offered and accepts it, then those others might say, “Well, what about the rest of us?” Those with severe learning disabilities cannot consider and weigh up the alternative.

We know that health is not a level playing field for people with learning disabilities. Disabled people frequently have to fight to get the same treatment for health issues as non-disabled people, so there are real worries in this. Mencap is concerned that the suggestion to someone of assisted dying might be construed by them as the right course, which would constitute “undue influence”.

Then, of course, there is the issue of medical arrogance. Some doctors think they know best and could easily talk a person with a learning disability into doing what they wanted. I accept that many doctors want to get it right—they are well-meaning—but they can be wrong. They choose what they tell someone, and it is always difficult to convey bad news about a condition. The capacity to assess that is really important. Autism and learning disability are very common, so this poses a significant risk to this population. The elderly are also suggestible and might be similarly disadvantaged.

I leave the last words in my contribution this afternoon to Tommy Jessop. Tommy will be well-known to many of us and has visited Parliament many times. Tommy has Down syndrome. He said there need to be

“rules to keep us safe, but that has not happened … our lives are worth living … Please protect us”,

and,

“we are not collateral damage”.

This is now an opportunity for the noble and learned Lord to actually say that people with learning disabilities are not collateral damage.

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[Baroness Grey-Thompson (CB)]

May I ask the noble and learned Lord for his help? What should I say to people such as Tommy Bishop, and others, who have asked for extra protections in the Bill? Can I tell them that they will be safe?