All 3 Debates between Baroness Grey-Thompson and Lord Harper

Terminally Ill Adults (End of Life) Bill

Debate between Baroness Grey-Thompson and Lord Harper
Lord Harper Portrait Lord Harper (Con)
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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 Portrait Baroness Grey-Thompson (CB)
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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.

Terminally Ill Adults (End of Life) Bill

Debate between Baroness Grey-Thompson and Lord Harper
Lord Harper Portrait Lord Harper (Con)
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I am grateful for that. The final point I want to make is that we had experience during the pandemic of too many vulnerable people, people with learning disabilities, having “do not resuscitate” notices put on them by doctors. I do not want to see a system where, if we had a similar circumstance again, these sorts of decisions would be taken remotely at speed. We know from our deliberations in this House, and it is my experience in the other place, that there is no substitute for doing these things face to face where you can challenge people, ask questions, put people under that challenge and get good answers to make good decisions.

I commend this group of amendments to your Lordships, and I look forward to hearing the response of the noble and learned Lord, Lord Falconer.

Baroness Grey-Thompson Portrait Baroness Grey-Thompson (CB)
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I would like to provide a brief clarification on the back of what the noble Lord, Lord Harper, said about the points raised by Ms Leadbeater’s comments about feeling uncomfortable. It came from a report on ITVX on 6 March 2025. An assessment was taking place with Dr Jess Kaan. I believe family members were there, and then she asked the patient’s family to leave the room so that she could privately ask the patient whether it was a settled wish. The patient said yes, it was. I quote directly from the ITV website:

“For Kim Leadbeater, the virtual consultations did not make for comfortable viewing—she says it has made her think about adding an amendment to make clear that consultations with doctors cannot be done via video call and that they should be done in person”.

Terminally Ill Adults (End of Life) Bill

Debate between Baroness Grey-Thompson and Lord Harper
Lord Harper Portrait Lord Harper (Con)
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My Lords, I will touch on Amendments 30, 56 and 57, the latter two to which I have attached my name. Before I launch into my arguments, it is, if I may say so, a delight for me to see the noble Baroness, Lady Campbell of Surbiton, in her place after an unavoidable absence. She and I worked very closely when I was shadow Minister for Disabled People. I found her insight and lived experience, and her willingness to spend time with me on improving my knowledge of disability, extraordinarily helpful. I was grateful to her for the time that she was willing to spend. I am pleased to see her here in this important debate.

The latter contribution I thought was helpful. It goes to the heart of two issues: what the Bill is about and whether the promoters of the Bill are being entirely straightforward about what it is about. The Bill is called the Terminally Ill Adults (End of Life) Bill, and the primary requirement is that you have a terminal diagnosis. The arguments made for it are almost entirely around preventing people suffering or having physical pain. However, as has been pointed out, that is currently not anywhere a requirement in the legislation.

Sometimes supporters of the Bill do not make that argument. Instead, they focus on autonomy, as the noble Baroness, Lady Jay of Paddington, did this morning, or on choice, as the noble and learned Lord, Lord Falconer, did in response to my challenging him on someone’s financial circumstances. We should be very straightforward. If the promoters of this Bill are arguing that it is entirely about somebody’s choice, they should be very straightforward about it. They should not argue that people have to be suffering and that this is about relieving it—which, as my noble friend Lady Fox said, is what compassionate and kind people think is the motivation for this legislation. If they think it should be open to anybody regardless of motivation, they should say so. It is very helpful when some of them are prepared to say that, because it makes what this is about more straightforward.

This goes to the heart of why many of us have concerns. We know this will get challenged in the courts and be expanded, because that has happened everywhere else. As I said earlier, the Minister keeps telling us about the human rights provisions. They will absolutely be used, if not to change what is in the Bill, to widen and challenge the regulations made under it. That is why so many of us want more safeguards on the face of it and not left to statutory instruments, which we know judges are very happy to change and strike down.

It will get expanded, so the proposed new clauses we have put down about the motivations are important. If it is about choice, it has to be a real choice. For people to have genuine choices, they cannot be forced by circumstance into making them. I was exercised with the noble and learned Lord, Lord Falconer, earlier because somebody might have enormous pressures on them—financial, housing, feeling like a burden or, as others have said, wishing financial resources to go their families. Some think those are perfectly fine reasons for somebody to have an assisted suicide. I do not, and I think most members of the public do not think those are reasons for somebody to kill themselves or seek to have others help kill them. We should just be honest about it. If noble Lords think that is fine, they should say so and we will see whether that argument carries water.

People are not making that argument; it is about whether you are suffering. If noble Lords think that is the critical matter, they should put it in the Bill and make it so that you can get assistance with your suicide only if you are suffering and in pain, and that is the reason for your seeking this course of action. If it is one of the other things, we should rule it out. If you are not prepared to rule it out, it becomes clearer what this is really about.

That goes to the point made by my noble friend Lord Shinkwin and why so many of us have concerns. The remarks I made at Second Reading are absolutely highlighted by these amendments. Not a single organisation of or for disabled people supports this legislation, because they are concerned about two things. As my noble friend said, they are concerned that, because so many disabled people are made to feel that they are a burden or, because of the costs of their disability, have financial or housing pressures that others do not have, they will feel forced into seeking an assisted suicide when that is not really what they want. Secondly, they are concerned that, if society decides that it is okay for you to get help in ending your life because you feel you are a burden or do not want to cause problems for other people, that fundamentally changes how society treats and looks after disabled people. Instead of wanting them to live well and have great lives, and being prepared to find the resources for them to do so, we would rather they were not here. That is the message they are getting.

These groups of amendments make it very clear that this legislation is about alleviating suffering and pain; it is not about the other things. That is why I strongly support these amendments and I hope that, in his response, the noble and learned Lord, Lord Falconer, will recognise that those are the reasons why so many people take a different view from him, If he limited the provisions of the Bill to people who are in pain or suffering, it would reassure the many disabled people in this country who are terrified that the passage of this legislation will fundamentally alter their lives for the worse.

Baroness Grey-Thompson Portrait Baroness Grey-Thompson (CB)
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My Lords, it is a great pleasure to follow the noble Lord, Lord Harper; when he was a Minister, we had many interesting discussions, although they were possibly not as collaborative as those with my noble friend Lady Campbell. This group talks about motivation and I am sure we are going to be told that these people have terminal conditions and they are dying anyway. We have to understand, however, that there may be a number of other motivations that are part of this.

The noble Lord, Lord Harper, as a non-disabled person—I assume—highlighted many of the reasons why disabled people are very worried about this Bill. We look at what happens in other jurisdictions around the world, including Oregon, Washington, Belgium and Holland. Australia is one of the newer jurisdictions, having recently changed the law, and it has surprisingly high figures on the number of people who request assisted dying because they feel they are a burden. In western Australia in 2022-23, 35.3% of people who requested an assisted death did so because they felt they were a burden. In 2023-24, that figure was 32.2%.

We have to understand that, unfortunately, in the UK currently, the health and social care system is broken for many people. The fact that a person might not be able to get good social care, a job or access to work could add layer on layer to a reason why someone might request an assisted death.

I am told that it is not for disabled people, and I am not suggesting we draw up a list of every single condition of people who would qualify or not. I have spoken many times in the Chamber about how people assumed I would want to change the law because someone with my condition would probably rather be dead than alive. My condition is spina bifida. I assume that I would not be eligible for an assisted death because of that, but, if I got a pressure sore, I would very easily and quickly fit it into that six-month diagnosis.

I have lost many friends through pressure sores, one of whom I was in school with. She also had spina bifida and had a pressure sore on the base of her spine, and one problem with it developing so rapidly was that she did not feel it: she was paralysed and did not realise she had it. It was discovered by the smell. As soon as it was discovered, a number of people around suddenly started talking very differently about that young woman’s life: about how, basically, she would be better off dead, because it was never going to heal.

This is why disabled people are so fearful. If the law changes, it does not matter whether there is one doctor or two in the assessment process—which I do not believe is anywhere near strong enough currently. There will always be ableist doctors out there who would very quickly think and agree that we would be better off not being around.

Let us look at other jurisdictions and the number of people there who choose to end their lives. When I talk to people outside, they assume we are talking about cancer and leukaemia, not lots of other conditions. But in Belgium, for example, the official figures from last year show that 54% of people who requested an assisted death had cancer; 26.8%, however, had polypathology. Now, I am not a medic, so that sounds like an interesting combination of conditions. Actually, though, what is included in those figures is being tired of life.

This comes back to the debate we had in the previous group about the equality impact assessment. That is based on the first 10 years of Oregon, where the numbers were very low because there was no social media and people did not know about it. This provides more evidence of why the Government need to reconsider looking at the impact assessment to actually understand the numbers that might be involved. The noble Lord, Lord Harper, is absolutely right: we need to be honest about what we are doing here, not wrapping it up in euphemisms and easy soundbites. I have said consistently that, when you do an interview about the Bill, it is not easy to lay down every single reason in four minutes as to why a number of people have many concerns with the Bill.