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

Debate between Lewis Atkinson and Marie Tidball

Committee stage
Thursday 30th January 2025 Public Bill Committees

[Dr Tidball]

Q Dan, I am really keen that we ensure that if the Bill passes, the voices of disabled people are continually involved in understanding its impact, particularly on the issue that you have just raised. Earlier, we heard evidence about implementation taskforces that are used in other jurisdictions. I am considering tabling an amendment on an advisory council. How might we ensure that the voices of people with learning disabilities can be included in such a body?

Dan Scorer: There are a couple of things that I would like to say in response. One is about clause 31, on guidance from chief medical officers. Immediately, I would say that people with a learning disability should be involved in the development of that guidance from chief medical officers. That guidance will be key to many of the issues that we have discussed.

Clause 35 is about the review of the Act. The lived experience of people is absolutely vital to that. The Bill says that it will be five years until we have that review. Our view is that that is far too long. If the Bill becomes law and if there are really serious issues and discrimination taking place against people, we will want to know that a lot earlier than in five years’ time, and we will want action to be taken. Our suggestion is that review should be earlier. We would want to see strong representation from patient groups across that, as well as from people who have been involved in the process, such as family members, advocates and clinicians, to make sure that if serious issues are being raised, they can be picked up early and addressed.

[Lewis Atkinson]

Q It is late, and I am far from being an expert on Welsh devolution, but I want to ask Professor Lewis a question, not least because we have not come to him for a little while.

Although it is not my area, I absolutely note the concerns and the discussion about respecting the democratic will of the Senedd in these matters. Would you suggest any potential avenues in the Bill to incorporate an element of positive affirmation by the Senedd, or its consent? What do you suggest we look at?

Professor Lewis: Formally, there is a need in any event for a legislative consent motion in relation to the specific bits I mentioned earlier, I have suggested one potential avenue, which is that the Senedd and Welsh Government take on responsibility for whether and when the Act commences in Wales. Another option might be to do a thorough “think once, think twice, think Wales” review to see to what extent other functions of the Secretary of State might be better exercised in Wales by the Welsh Ministers. That is a non-exhaustive list, but I hope it helps.