← LEADERSHIP TERMINAL

UK PARLIAMENT · SITTING

Daniel Francis

MP for Bexleyheath and Crayford · Labour · United Kingdom

IN THEIR OWN WORDS

As the Minister said, we were friends for many years in London local government prior to being elected to this place. I want to make two points. First, there is the issue of the Changing Places that have been provided in recent years and the amount of information out there about them.

CHANGING PLACES TOILETS: CAPITAL FUNDING · 2026-07-16 · READ IN HANSARD

As the Minister knows, I will hold her to account on this issue and continue to pursue it. I thank her very much for the commitments that she has given today that we can continue to pursue. I thank the hon. Members for Chester South and Eddisbury (Aphra Brandreth), for Bath (Wera Hobhouse) and for Strangford (Jim Shannon), my hon.

CHANGING PLACES TOILETS: CAPITAL FUNDING · 2026-07-16 · READ IN HANSARD

An expansion of capital funding for Changing Places toilets would lead to people with profound disabilities accessing more opportunities and more families and individuals contributing to our hospitality businesses, theme parks, leisure facilities and sports grounds—the list goes on. There was, of course, a previous fund.

CHANGING PLACES TOILETS: CAPITAL FUNDING · 2026-07-16 · READ IN HANSARD

I turn now to the importance of maintaining Changing Places toilets. I mentioned last year that, in Bexleyheath town centre, we had to close a Changing Places toilet because of the vandalism it was receiving, with people living in it and dealing drugs in it.

CHANGING PLACES TOILETS: CAPITAL FUNDING · 2026-07-16 · READ IN HANSARD

Although I acknowledge that changes to building regulations ensure that facilities continue to be installed in new buildings, I retain concerns that older buildings would greatly benefit from having a Changing Places toilet installed.

CHANGING PLACES TOILETS: CAPITAL FUNDING · 2026-07-16 · READ IN HANSARD

One said: “Without access to an appropriate facility, I am left with impossible choices: ending outings early, avoiding certain venues altogether, or changing my daughter on the floor of an accessible toilet, which is neither hygienic, safe nor dignified.” I have read through the responses to the survey, and there was a lot of appreciatio…

CHANGING PLACES TOILETS: CAPITAL FUNDING · 2026-07-16 · READ IN HANSARD

The complete record

Every one of 600 lines we hold for Daniel Francis, in date order, each linked to its source. Free to read, in full, without an account. Page 11 of 12.

  1. In the evidence from Mencap and in large swathes of the written evidence, we have heard grave concerns from communities representing people with learning disabilities about how this legislation was enacted during covid, particularly with “do not resuscitate” notices. Evidence shows that people with learning disabilities were far more likely to have those placed on them. The written evidence we have suggests that that is due to a misinterpretation of the Mental Capacity Act or bias within the medical community. Can my hon. Friend comment on that?

    TERMINALLY ILL ADULTS (END OF LIFE) BILL (FOURTEENTH SITTING) · 2025-02-26 · READ IN HANSARD

  2. The Mental Capacity Act code of practice outlines that following a court judgment, there is a separate capacity test for making a will or a gift, entering into a contract, litigating and entering into a marriage. It outlines, in paragraph 4.50, specific legal tests on top of the mental capacity assessment. Will the Minister outline why we allow separate mental capacity tests in those cases, but not in this case?

    TERMINALLY ILL ADULTS (END OF LIFE) BILL (FIFTEENTH SITTING) · 2025-02-26 · READ IN HANSARD

  3. I will read paragraph 4.50 of the mental capacity code of practice: “For certain kinds of complex decisions (for example, making a will)”— and the others I have just mentioned— “there are specific legal tests…in addition to the two-stage test for capacity.” It already exists within our law; for other tests, there is an additional test.

    TERMINALLY ILL ADULTS (END OF LIFE) BILL (FIFTEENTH SITTING) · 2025-02-26 · READ IN HANSARD

  4. I look forward to discussing, in due course, the amendments tabled by my hon. Friend the Member for Hackney South and Shoreditch (Dame Meg Hillier), because they bring us into a scenario that does exist in the medical field, in respect of discussions with the doctor. As things stand, I will support the amendments. Unfortunately, I will oppose clause stand part simply because I continue to believe, as I did on Second Reading, that the Mental Capacity Act 2005 was not written for this scenario. Question put, That the amendment be made.

    TERMINALLY ILL ADULTS (END OF LIFE) BILL (FIFTEENTH SITTING) · 2025-02-26 · READ IN HANSARD

  5. My great concern—I am sure we will continue this debate when we come to clause 4—has been around people with learning disabilities, and that is where I have ended up in this place. I have said this before and I am sure I will say it again in my contributions: people may think that I have a vested interest, but actually my daughter will never have the capacity to make these kinds of decisions. I am here in this Committee because hundreds of thousands of people in this country are involved in family decisions where a child or a loved one does have enough capacity. The Mental Capacity Act was rightly written to allow them to live independently, buy a coffee and do their banking, but I do not believe it was written for this scenario, so I will support the amendments. I presume that the amendments may well be rejected.

    TERMINALLY ILL ADULTS (END OF LIFE) BILL (FIFTEENTH SITTING) · 2025-02-26 · READ IN HANSARD

  6. I will not speak for long. I spoke in great depth about my amendment and other amendments this morning. Over the past few weeks, hon. Members will have heard, long and hard, about where I come from on the clause stand part issue. This has been one of my greatest difficulties. It drove me to oppose the Bill on Second Reading, and I continue to have grave concerns that the Mental Capacity Act 2005 was not written for this scenario. I draw Members’ attention to my exchange with my hon. Friend the Member for Stroud this morning when, on decision making in the Mental Capacity Act, it was accepted that it has to be presumed that somebody has capacity, and in those scenarios a doctor must assist in the decision-making part of the process.

    TERMINALLY ILL ADULTS (END OF LIFE) BILL (FIFTEENTH SITTING) · 2025-02-26 · READ IN HANSARD

  7. My intention is to press the three amendments in my name, amendments 319, 320 and 339. I have concerns, as many people do, about the discrepancy between the wording in clause 4 and in later clauses, in relation to the age requirement of 18. I look forward to the debate on amendment 339, which relates to learning disabilities; other amendments on the topic may well come forward in due course. We have heard very clearly the concerns from the Down’s syndrome community and from Mencap about learning disability and the role of advocates, family members and carers. It is incumbent on us to listen to that advice and ensure the strongest possible safeguards for the people who are most vulnerable in this conversation. We must ensure that those safeguards are in the Bill.

    TERMINALLY ILL ADULTS (END OF LIFE) BILL (FIFTEENTH SITTING) · 2025-02-26 · READ IN HANSARD

  8. Rushing the legislative process has led to insufficient public engagement, overlooking diverse societal values and ethical viewpoints.” The evidence goes on to lay out concerns about vulnerability to coercion, challenges in assessing capacity, ethical implications, misinterpretation of wishes and an over-emphasis on disability. The all-party parliamentary group on Down syndrome has provided us with a lengthy submission. Again, I will not go into great detail on it, but it mentions expert consultation, the legal requirements and the challenges in front of us, those medical capacity considerations, the vulnerability of individuals with learning disabilities, additional complicating factors and ethical challenges, and, again, the learning disability mortality rate.

    TERMINALLY ILL ADULTS (END OF LIFE) BILL (FIFTEENTH SITTING) · 2025-02-26 · READ IN HANSARD

  9. It is not known how much the actions of health professionals played into this, but there are some disturbing concerns.” The Portsmouth Down Syndrome Association has listed a whole range of concerns. It says that standard practice has not been followed with this Bill. I know that the hon. Member for East Wiltshire has mentioned some of this, but the association’s evidence says: “Typically, the government recommends a 12–16-week period for public consultations to ensure comprehensive input and discussion. This Bill has not adhered to this standard, compromising the depth and quality of the consultation process.

    TERMINALLY ILL ADULTS (END OF LIFE) BILL (FIFTEENTH SITTING) · 2025-02-26 · READ IN HANSARD

  10. The written evidence supplied by Lucienne Davies from Get On Down’s states: “There is an obvious worry about informed consent for people with learning disabilities. As a group we are fully aware that people with Down syndrome are extremely vulnerable to the intentions and suggestions of caregivers, health professionals and authority figures, informed consent is therefore a major concern in end-of-life decisions.” The Down’s Syndrome Research Foundation UK also emphasised the issues that arose during the covid-19 pandemic, when “we saw a deluge of temporary changes sweep away many safeguards and rights. During the pandemic, individuals with learning disabilities, including those with Down syndrome, had a death rate of six times higher than average.

    TERMINALLY ILL ADULTS (END OF LIFE) BILL (FIFTEENTH SITTING) · 2025-02-26 · READ IN HANSARD

  11. He said Mencap’s position was: “We absolutely do not want people to be in that position. We want strong safeguards and support in place if the Bill becomes law.” –– [ Official Report, Terminally Ill Adults (End of Life) Public Bill Committee, 30 January 2025; c. 280, Q366.] It is no secret that my greatest concerns relate to capacity and supporting those with learning disabilities. As well as my earlier two amendments, I will press my amendment 339; I hear that there may not be a vote on it. I also want to touch on amendment 368, in the name of the right hon. Member for East Hampshire (Damian Hinds), as it also feeds into the conversation about the initial discussions. There are swathes of written evidence from the Down’s syndrome community.

    TERMINALLY ILL ADULTS (END OF LIFE) BILL (FIFTEENTH SITTING) · 2025-02-26 · READ IN HANSARD

  12. Having a doctor come to you and say, ‘What do you think about assisted dying—is that something you might want to consider?’ could move them towards or into potentially accepting a course of action that they had never considered before.” That is why he then went on to talk about advocacy supporting that discussion, saying: “Individuals should be able to choose who supports them with those discussions, whether it is friends or family members or an independent advocate”. –– [ Official Report, Terminally Ill Adults (End of Life) Public Bill Committee, 30 January 2025; c. 273, Q355.] In concluding, he said he felt that some of that “would reduce the risk, which is absolutely there, that people could take the initiation of that discussion as a statement, ‘This is what you should do.’”.

    TERMINALLY ILL ADULTS (END OF LIFE) BILL (FIFTEENTH SITTING) · 2025-02-26 · READ IN HANSARD

  13. 269, Q350.] We then move into the domain of amendment 8—tabled by my hon. Friend the Member for Blackpool South (Chris Web)—on initial discussions. As Dan Scorer told us, Mencap’s concern is about how discussions around assisted dying are initiated: “For many people with a learning disability who are terminally ill and in an incredibly vulnerable position, doctors are very important and influential figures.

    TERMINALLY ILL ADULTS (END OF LIFE) BILL (FIFTEENTH SITTING) · 2025-02-26 · READ IN HANSARD

  14. It would be extremely concerning if people with a learning disability who were terminally ill were not fully prepared and supported for that discussion…For us, this links into the experiences that we had during the pandemic, which were touched on in yesterday’s evidence session by Dr Griffiths and others. We had people with a learning disability who were being consulted by medical professionals about ‘do not resuscitate’ or ‘do not treat’ decisions, and they were not being properly prepared for or supported in those discussions.” He went on to say that Mencap wants to see “a right to advocacy included within the Bill to support people considering their end of life options.” –– [ Official Report, Terminally Ill Adults (End of Life) Public Bill Committee, 30 January 2025; c.

    TERMINALLY ILL ADULTS (END OF LIFE) BILL (FIFTEENTH SITTING) · 2025-02-26 · READ IN HANSARD

  15. Friend the Member for Penistone and Stocksbridge wishes to comment on the matter, and I am aware that there may be concerns about some of the wording in the amendment, but it was tabled following the oral evidence we received from Mencap and was, in the initial instance, in the wording that Mencap requested. I remind hon. Members of the evidence from Mencap. Dan Scorer talked to us about two principal concerns, initially. One was about preliminary discussions, and how the initial conversation is initiated and structured is a key area that Mencap has concerns about. He said that for Mencap “that really leads into a conversation around rights to advocacy.

    TERMINALLY ILL ADULTS (END OF LIFE) BILL (FIFTEENTH SITTING) · 2025-02-26 · READ IN HANSARD

  16. I appreciate that there will be different views on the matter, in relation to autonomy, but I think that even some of the strongest supporters of the Bill will be uncomfortable with those conversations being undertaken with someone as soon as that person turns 16. My amendments seek to make sure that the Bill includes the strongest possible safeguards, by ensuring that the relevant aspects of the Bill relate to those who have attained the age of 18. Surely it would make sense that if a person has to be 18 to agree to the first declaration, they also have to be 18 to have the initial discussion. I now turn to amendment 339, which stands in my name. As hon. Members know, this issue has been a great preoccupation of mine on the Committee. I know that my hon.

    TERMINALLY ILL ADULTS (END OF LIFE) BILL (FIFTEENTH SITTING) · 2025-02-26 · READ IN HANSARD

  17. It is a pleasure to serve under your chairship, Mrs Harris. Of the three amendments in my name, I come first to amendments 319 and 320. Clause 1 outlines that the legislation relates to a terminally ill person who “is aged 18 or over at the time the person makes a first declaration”. It does not, however, refer to the age that an individual needs to be at the time of an initial discussion in line with clause 4. The definitions in the Mental Capacity Act, which have now been agreed as part of the Bill, relate to those aged 16 and over. Given that we have now accepted that, I presume that the discussions referred to in clause 4 could be held with 16 and 17-year-olds.

    TERMINALLY ILL ADULTS (END OF LIFE) BILL (FIFTEENTH SITTING) · 2025-02-26 · READ IN HANSARD

  18. Referring back to Dr Cox, she said: “We need to make sure that the 75% to 90% of people who are dying and need palliative care are getting it. We need to make sure that there is not inequity in palliative care, so that you do not have to be white and rich and have cancer to get good palliative care. We need to make sure that hospitals have seven-day services. Seven-day-a-week cover is unavailable at 40% of hospitals.” –– [ Official Report, Terminally Ill Adults (End of Life) Public Bill Committee, 28 January 2025; c. 78, Q101.] Does my hon. Friend agree that we need an inequality impact assessment to understand the current position and to get that right, in line with the Bill?

    TERMINALLY ILL ADULTS (END OF LIFE) BILL (TWELFTH SITTING) · 2025-02-25 · READ IN HANSARD

  19. Paragraph A9 of the Government’s guidance on the Equality Act reads: “The Act states that a person who has cancer, HIV infection or multiple sclerosis (MS) is a disabled person. This means that the person is protected by the Act effectively from the point of diagnosis.” I remain concerned about this point. I have previously raised my concerns about the language used on Second Reading and, if I had spoken then, I would have raised this point. We have heard throughout the Bill’s passage that being a disabled person does not make someone eligible for assisted dying, but I have just diagnosed three disabilities in the Equality Act that may or may not be eligible under this Bill.

    TERMINALLY ILL ADULTS (END OF LIFE) BILL (THIRTEENTH SITTING) · 2025-02-25 · READ IN HANSARD

  20. Parliament should note that the exclusion of disability as a standalone criterion for accessing assisted dying does not mean that the rights of, and protections for, disabled people do not need to be considered in relation to this bill.” I note that amendment 181, tabled by my hon. Friend the Member for Spen Valley, seeks to clarify these matters, but I remain concerned that, with its reference to “only because they are a person with a disability”, it would retain the ambiguity that she is seeking to remove. I understand the legal advice that she has received on this matter. My view is that although the amendment would remove the reference to the Equality Act, that Act still sets out that disability is one of the specified protected characteristics.

    TERMINALLY ILL ADULTS (END OF LIFE) BILL (THIRTEENTH SITTING) · 2025-02-25 · READ IN HANSARD

  21. The amendments before us have left me in a significant quandary, as some Members are aware. I am concerned that while their proposers are genuinely seeking to improve the Bill, legal loopholes may remain. Prior to Second Reading, the Equality and Human Rights Commission produced a briefing note on the Bill. It included a section relating specifically to discrimination and equality considerations, which stated: “It may also particularly impact disabled people. We recognise that this bill is focused on assisted dying for adults who are terminally ill, and does not propose access to assisted dying on the basis of disability or chronic conditions. However, there is not always a clear line between terminal illness and disability. Disabled people can also suffer from terminal illness, and illness may itself amount to a disability.

    TERMINALLY ILL ADULTS (END OF LIFE) BILL (THIRTEENTH SITTING) · 2025-02-25 · READ IN HANSARD

  22. They could live with that cancer and receive treatment for a considerable time, while continuing to have no other disability. When they receive a six-month prognosis, they would be eligible for assisted dying due to the same disability they have had for a very considerable time, and it would remain the only disability they have had in their entire life. I remain concerned that my hon. Friend’s amendment still talks about disability, potentially leaving that loophole.

    TERMINALLY ILL ADULTS (END OF LIFE) BILL (THIRTEENTH SITTING) · 2025-02-25 · READ IN HANSARD

  23. I will return to that. I understand what amendment 11 seeks to do, but I think we should have a hybrid, because I do not think either amendment would completely achieve what we want. I will seek the Minister’s advice in due course. I understand the legal advice to my hon. Friend the Member for Spen Valley on this matter, and I understand that all the amendments have been tabled in good faith, but I am concerned about the loopholes that could remain. We heard on Second Reading that assisted dying will not be available to disabled people, but let us imagine an individual who does not consider themselves to be disabled. If they were diagnosed with cancer tomorrow, our current legislation states that they would be disabled from the point of diagnosis.

    TERMINALLY ILL ADULTS (END OF LIFE) BILL (THIRTEENTH SITTING) · 2025-02-25 · READ IN HANSARD

  24. Other amendments in this group retain the reference to the Equality Act 2010, which could equally result in legal challenges down the line, for the reasons my hon. Friend the Member for Spen Valley outlined this morning. I am not deliberately being difficult, but I am not sure that any of the amendments would completely achieve what they seek to achieve. I await the Minister’s view on the matter but, as things stand, I am concerned that we will take the clause back to the House without completely satisfying Members’ aims. By allowing those with cancer to seek assisted dying, there could be a loosening of the rules for other disabilities. I fear there could be manuscript amendments on this matter, but I await the Government’s view on the robustness of these amendments if they were to be accepted.

    TERMINALLY ILL ADULTS (END OF LIFE) BILL (THIRTEENTH SITTING) · 2025-02-25 · READ IN HANSARD

  25. The Equality Act says that indirect discrimination happens when a rule, a policy or even a practice that applies to everyone disadvantages people with a particular disability, compared with people who do not have that disability, where that cannot be shown to be justified as being intended to meet a legitimate objective in a fair, balanced and reasonable way. If we accepted this amendment to allow the inclusion of cancer and some other disabilities set out in the Equality Act, I believe it would be argued in due course that other disabilities meet the criteria for assisted dying and, despite the promises made to this Committee and to the House in good faith, the loopholes would allow the criteria to be widened.

    TERMINALLY ILL ADULTS (END OF LIFE) BILL (THIRTEENTH SITTING) · 2025-02-25 · READ IN HANSARD

  26. I hear that point but, looking at my postbag, the people who berate me for not supporting the Bill often talk about their loved ones with motor neurone disease or Parkinson’s, which I understand from oral evidence will be exempt. We need to make it clear which disabilities and conditions will be eligible, and I am not sure that the amendments before the Committee nail it down. I am concerned that the wording would lead to potential loopholes and legal challenges. We should still be concerned about legal review of the Bill, based on indirect disability discrimination.

    TERMINALLY ILL ADULTS (END OF LIFE) BILL (THIRTEENTH SITTING) · 2025-02-25 · READ IN HANSARD

  27. 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?

    TERMINALLY ILL ADULTS (END OF LIFE) BILL (THIRTEENTH SITTING) · 2025-02-25 · READ IN HANSARD

  28. I want to bring us back to the points raised by the right hon. Member for North West Hampshire. I may have misread this, but I understand that, under the current law and under the law as it would stand if this legislation were introduced, it would remain an offence to encourage somebody to commit suicide with a 12-month diagnosis—perhaps someone with motor neurone disease or Parkinson’s disease, who may still be a loved one. I do not understand the counter-argument about not using the word “encouraged”: it would remain a criminal offence, unless I am mistaken, to encourage someone to take that decision if they had a diagnosis of longer than six months left to live.

    TERMINALLY ILL ADULTS (END OF LIFE) BILL (TENTH SITTING) · 2025-02-12 · READ IN HANSARD

  29. From what I understand from the promoter of the Bill, the argument is that we should put these measures in place to protect from coercion people who have less than six months to live, but we would not put those protections in place for people who have nine or 12 months to live. If we are putting the measures in place for someone with six months to live, why are we not doing so for someone with nine or 12 months to live?

    TERMINALLY ILL ADULTS (END OF LIFE) BILL (TENTH SITTING) · 2025-02-12 · READ IN HANSARD

  30. To pick up the points made by the right hon. Member for North West Hampshire and the hon. Member for Reigate, my understanding of the discussion we had this morning and where we now are is that it would be an offence under the Suicide Act to encourage a loved one to commit suicide when they have nine months left to live but that it would not be an offence under the Bill to encourage a loved one to take assisted death when they have six months left to live. My understanding is that the hon. Member for Reigate is saying that, whether we do it now or in later clauses, we should try to bring the two pieces of legislation in line with each other on the term “encouragement”.

    TERMINALLY ILL ADULTS (END OF LIFE) BILL (ELEVENTH SITTING) · 2025-02-12 · READ IN HANSARD

  31. That is the imbalance, whereby somebody could realise that this change in the law now gives them the power to release the burden of their loved one, not for any other reason—that they want their suffering to end—but because they want their loved one to have their life back. I do not know whether my hon. Friend has any comments on that.

    TERMINALLY ILL ADULTS (END OF LIFE) BILL (ELEVENTH SITTING) · 2025-02-12 · READ IN HANSARD

  32. The one thing that covid taught me was what my hon. Friend is alluding to. Hon. Members heard yesterday a bit about my family situation. I have a child who will never walk, will always be in nappies, will always need to be fed, and will always need to be dressed. During that period, no carer was allowed in the house, and as people know, my wife was also having chemotherapy —thankfully, she successfully recovered. As the carer, who everyone is reliant on, I saw that power imbalance. Everybody in my house was reliant on me during those three months—no one was allowed in the house, my wife was having chemo and my daughter needed round-the-clock care, so to speak. That is the position, which is why I understand this wording.

    TERMINALLY ILL ADULTS (END OF LIFE) BILL (ELEVENTH SITTING) · 2025-02-12 · READ IN HANSARD

  33. I find it difficult to believe that any member of the Committee has been able to read all the evidence submitted since last Tuesday. For instance, the written evidence submitted by the chief executive of my local hospice, which she blind-copied me into on 20 January, was available for members of this Committee to read on 7 February, 17 days after she submitted it. That suggests that, as well as Members struggling to keep up, the Clerks are struggling to keep up. Given the sheer volume of evidence, we will not be able to consider it fully before line-by-line scrutiny. I therefore seek your advice, Ms McVey, on how we can reasonably expected to begin line-by-line scrutiny when in the last week we have been presented with more than 400 documents, in addition to new amendments.

    TERMINALLY ILL ADULTS (END OF LIFE) BILL (EIGHTH SITTING) · 2025-02-11 · READ IN HANSARD

  34. On a point of order, Ms McVey. Yesterday, members of the Committee received notification that, in the last week, we have received a further 242 pieces of written evidence and 159 pieces of correspondence. Last week, I had read every word of the original 110 pieces of written evidence and 56 pieces of correspondence, as well as studying all the amendments and tabling amendments of my own. As I said, however, more than 400 pieces of evidence and correspondence have been uploaded during the past week, with no deadline by which further such evidence needs to be submitted. Given the large number of evidence submissions every day, Members may well struggle to keep abreast of it and be able to say that they have read every piece of correspondence before the tweaking of the Bill.

    TERMINALLY ILL ADULTS (END OF LIFE) BILL (EIGHTH SITTING) · 2025-02-11 · READ IN HANSARD

  35. The Mental Capacity Act is written to enable people to carry out day-to-day scenarios, such as buying a coffee or doing their banking, so that they are not challenged in every transaction in their life. It is therefore a very low bar to be deemed to have capacity. Does the hon. Member believe that it was written for this kind of scenario?

    TERMINALLY ILL ADULTS (END OF LIFE) BILL (EIGHTH SITTING) · 2025-02-11 · READ IN HANSARD

  36. We could therefore have a young adult relying on doctors who do not know them and on a judge—I have not seen an amendment on that issue, so I am still talking about a judge—to make a decision about capacity.

    TERMINALLY ILL ADULTS (END OF LIFE) BILL (EIGHTH SITTING) · 2025-02-11 · READ IN HANSARD

  37. They are living their day-to-day lives, living in supported accommodation and making the kinds of decision we have discussed in this debate, such as buying coffee and going to the bank. As a result of my 20 years as a councillor, and in the last 11 years since our children were born, I have become involved with a number of local disability charities, and I know the decisions that people make when their child is at that transition age. They are trying to understand the complexity of taking a power of attorney for a child, as well as other decision-making issues. I spend a lot of time with parents who do not put those measures in place, because they do not understand the complexity in terms of age.

    TERMINALLY ILL ADULTS (END OF LIFE) BILL (EIGHTH SITTING) · 2025-02-11 · READ IN HANSARD

  38. I have doctors calling my wife and me all the time, asking to have a conversation with my daughter, despite their having read the notes saying that she is an 11-year-old with 12 words and a severe sight impairment. I therefore query—I will refer to some of the oral evidence in a moment—how well some aspects of the Mental Capacity Act are currently being carried out. Equally, I deal with people who suggest that she has a greater level of capacity than she does. I accept—I have had this conversation with the hon. Member for Spen Valley on a number of occasions—that this legislation would not be applicable to my daughter. However, we heard in evidence from Mencap that the vast majority of people with learning disabilities in this country are not in the same position.

    TERMINALLY ILL ADULTS (END OF LIFE) BILL (EIGHTH SITTING) · 2025-02-11 · READ IN HANSARD

  39. Therefore, in my own way, although I am not a lawyer or a doctor, I have become a bit of an expert on some of the capacity issues that people encounter day by day. This morning, as I do most mornings, I read to her the three choices for her breakfast. I give her a bit of time to think about them and then I repeat them. We get yes or no to those three choices, and that is the choice she makes. Because of her severe sight impairment, when I put those three options in front of her, I have to lift them up in front of my face so that she can see them; if I put them much lower down, she would not be able to see them and make a choice. She would be able to make the choice through pointing if it was within a certain range.

    TERMINALLY ILL ADULTS (END OF LIFE) BILL (EIGHTH SITTING) · 2025-02-11 · READ IN HANSARD

  40. My hon. Friend the Member for Penistone and Stocksbridge knows I am an ally on many of these issues, but I will humbly disagree with her on some matters. I am not a lawyer or a doctor, but like many people here I speak from lived experience. I speak as the parent of a learning-disabled child, so I see the kinds of decisions that have to be made day to day, and the kinds of arguments and conversations that have to be had with people who presume that my child has more or less capacity than she has. Believe me, that is a constant, daily battle for me and my wife. My daughter has 12 words and a severe sight impairment, which makes it very difficult for her to make some of her decisions, as well as other complexities—predominantly her cerebral palsy, which caused a brain injury at birth.

    TERMINALLY ILL ADULTS (END OF LIFE) BILL (EIGHTH SITTING) · 2025-02-11 · READ IN HANSARD

  41. Therefore, given the way the Act and the code of practice are worded, there is no obligation in the scenarios I am discussing. There is another issue I was going to raise before I took that intervention. Mencap does considerable hard work. At my local branch, there are many people whose parents are in their 70s and 80s and have cared for their child all their life. I am not being rude, but their child, who is in their 40s or 50s, does feel like a burden to their parents. They know the obligation their parents have to care for them for their whole life. I ask Members to consider what the Mental Capacity Act says: those adults are at a level of capacity to make decisions, but they have been supported in those decisions all their lives and do not—

    TERMINALLY ILL ADULTS (END OF LIFE) BILL (EIGHTH SITTING) · 2025-02-11 · READ IN HANSARD

  42. I thank the Member in charge for her comments. That is the conversation we had when she invited me to join the Committee, and we will continue to have conversations as amendments come forward. My concern is about some aspects of the Mental Capacity Act, which was not written for these scenarios, and the hon. Member for Richmond Park talked in particular about the statutory principles in it. I am not an expert on these issues, and my hon. Friend the Member for Stroud behind me is more of an expert on some of them. However, there is no obligation in the code of practice under the Act to consult carers involved in a person’s life. The code says: “if it is practical and appropriate to do so, consult other people for their views about the person’s best interests”.

    TERMINALLY ILL ADULTS (END OF LIFE) BILL (EIGHTH SITTING) · 2025-02-11 · READ IN HANSARD

  43. The Law Society has a neutral position on the Bill, but it has said that, before the provisions become law, a comprehensive consultation should be undertaken to allow resident experts to share views on the appropriate definition of capacity for the purposes of the Bill. That is the position of the Law Society.

    TERMINALLY ILL ADULTS (END OF LIFE) BILL (EIGHTH SITTING) · 2025-02-11 · READ IN HANSARD

  44. I am hearing that that amendment will need some rewording, but it would address some of my concerns. I am working with Mencap, and further amendments will be tabled to later clauses of the Bill. I understand that one of our colleagues has also tabled amendments, which I welcome. However, I would still have concerns about the interpretation—and there are different interpretations—of the current code of practice when it comes to the involvement of carers and loved ones. Those concerns brought me to the place I came to on Second Reading. I did not seek to be the person standing here; indeed, a year ago, not only did I not believe that I would be a Member of Parliament, but I did not believe that I would be on this side of this argument. It is this particular point that has driven me to this position. I will talk a little about evidence.

    TERMINALLY ILL ADULTS (END OF LIFE) BILL (EIGHTH SITTING) · 2025-02-11 · READ IN HANSARD

  45. 228, Q290.] Dr Price said: “I…refer back to Professor Gareth Owen’s oral submission, thinking about the purpose that the Mental Capacity Act was drawn up for and the fact that decisions about the ending of life were not one of the originally designed functions of it. We would need to think carefully about how that would then translate into a decision that was specifically about the capacity to end one’s life.” –– [ Official Report, Terminally Ill Adults (End of Life) Public Bill Committee, 30 January 2025; c. 268, Q349.]

    TERMINALLY ILL ADULTS (END OF LIFE) BILL (EIGHTH SITTING) · 2025-02-11 · READ IN HANSARD

  46. I welcome that commitment and look forward to that discussion in due course. Dr Hussain went on to say: “Ultimately, I do not think the Mental Capacity Act and safeguarding training are fit for purpose.” –– [ Official Report, Terminally Ill Adults (End of Life) Public Bill Committee, 29 January 2025; c. 199, Q260.] Professor Owen said: “That conveys questionable confidence in the consent processes, of which mental capacity is part, in relation to the decision to end one’s life. It is significant evidence about the confidence that is out there among experienced practitioners.” –– [ Official Report, Terminally Ill Adults (End of Life) Public Bill Committee, 30 January 2025; c.

    TERMINALLY ILL ADULTS (END OF LIFE) BILL (EIGHTH SITTING) · 2025-02-11 · READ IN HANSARD

  47. I also have further amendments on this issue later on down the line. I completely understand what my hon. Friend the Member for Spen Valley said about training in relation to these decisions and scenarios. At the end of life, people should have autonomy and choice, but if that comes at the price of one person, in a borderline capacity decision that is made on their behalf, it will be one death too many.

    TERMINALLY ILL ADULTS (END OF LIFE) BILL (EIGHTH SITTING) · 2025-02-11 · READ IN HANSARD

  48. As I say, I am not an expert on this matter from a legal or medical background, but those are the concerns that have driven me to the place that I am in. Dan Scorer, from Mencap—as my hon. Friend the Member for Spen Valley knows, I was adamant that Mencap would give evidence to us—said: “building on the previous question about the adequacy of the Mental Capacity Act, there is a question about the adequacy of training, awareness and compliance with that Act now.” –– [ Official Report, Terminally Ill Adults (End of Life) Public Bill Committee , 30 January 2025; c. 269, Q350.] He clearly cited what many people know occurred during covid, with “do not resuscitate” orders and decisions being made on people’s behalf. That is what has driven me to this place, and that is why I will support the amendment.

    TERMINALLY ILL ADULTS (END OF LIFE) BILL (EIGHTH SITTING) · 2025-02-11 · READ IN HANSARD

  49. I would like the Minister to address them and the fact that that Act, which was written 20 years ago, was not written for this scenario.

    TERMINALLY ILL ADULTS (END OF LIFE) BILL (NINTH SITTING) · 2025-02-11 · READ IN HANSARD

  50. To go back to the point I made this morning—I am happy to stand corrected, but nobody has disputed it—two issues continue to concern me in relation to the Mental Capacity Act and the code of conduct. The first is that the doctor would have a choice, under chapter 5 of the guidance, as to whether it is practical and appropriate to consult other people—with regard to learning disability, for instance. Also, we have not discussed principle 2 in chapter 2, which says that the doctor has to do everything practicable to try to help the person to make the decision for themselves, before concluding that they do not have the capacity to do so. The principal concern for some Members remains those issues in relation to the Mental Capacity Act, which have not been considered for this scenario.

    TERMINALLY ILL ADULTS (END OF LIFE) BILL (NINTH SITTING) · 2025-02-11 · READ IN HANSARD