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

Sean Woodcock Excerpts

Committee stage
Wednesday 26th February 2025 Public Bill Committees

[Danny Kruger]

I am grateful to the hon. Lady and am sure that that will be welcomed. It does rather go back to the point that the organisations made at the outset, which is that they wish they had had more consultation earlier on, but I understand why that was not possible in all cases.

[Sean Woodcock (Banbury) (Lab)]

In oral evidence, Fazilet Hadi stated in answer to a direct question from me that she felt that disabled people had not been listened to properly. Will the hon. Member comment on that?

[Danny Kruger]

I am afraid that that seems to be the strong impression that many groups have.

I will quote quickly from a submission that we have received from someone at the National Down Syndrome Policy Group, Fionn Crombie Angus. I am not sure whether Fionn has Down’s syndrome, or is perhaps a parent, but the point is a striking one, which we have not heard enough:

“I do feel very sorry for the people who are suffering, but I think the people left behind, the relatives, will be scarred for life if they help people die. That is the main reason why I do not want the Assisted dying Bill to become law.”

That is not specifically relevant, because we are not discussing whether the whole thing should happen, but it strikes me that there, from a member of the Down’s community, we have a point that goes to the heart of our discussion on the Bill: it is not all about the individual who is seeking an assisted death. More people are involved in the decision.

I made a point in an earlier debate about relational autonomy, which is very significant. That particularly applies to this group of people, who will be making decisions in the context of their family and the people around them, including the doctor who is talking to them. That is why it is particularly important to have a wider set of expertise and advice around people with Down’s.

My concern is that Bill, as drafted, thanks to the inclusion of clause 3 and its reference to the Mental Capacity Act, will assume consent and support people with Down’s receiving this intervention. It would have been best if we had accepted the amendments tabled by my hon. Friend the Member for Reigate and the hon. Member for Bexleyheath and Crayford to reverse the burden of proof. Failing that, we need to ensure that the job is done properly. Amendment 368, tabled by my right hon. Friend the Member for East Hampshire, would address that point.

Given the real concern that we have all discussed about the application of the Mental Capacity Act, it is important to have real expertise, time and attention on behalf of Down’s people with the role of an independent advocate. In particular, that should be someone who has expertise in end-of-life decisions for people with Down’s syndrome, which will be a small group of experts, so we might have to end up widening that, I am sorry to say. We need people with proper expertise.

I think the point that my right hon. Friend the Member for North West Hampshire made about the interaction of the Bill with the Down Syndrome Act 2022 was absolutely right. My understanding is that he is right that it applies to authorities, but it strikes me that the purpose of the amendment 368 would be to insist that the provisions of the Act apply in the case of individuals as well.

My right hon. Friend may be right that there could be complications, so it would be good to hear whether the Minister agrees with him that we should take this topic away, with the hon. Member for Spen Valley, and see whether the provisions in the amendment can be introduced at a later stage of the Bill or in statutory guidance. However, I would want to hear explicitly from the Minister that he is confident that what my right hon. Friend the Member for East Hampshire was trying to do when he tabled the amendment will be reflected properly at a later stage of the Bill. On that basis, I am happy not to press the amendment to a vote unless others feel strongly that we should proceed.