Terminally Ill Adults (End of Life) Bill

Lord Evans of Rainow Excerpts

Committee stage
Friday 6th February 2026 Lords Chamber

This Bill poses a very real and present danger for people with lifelong congenital conditions. This amendment is crucial to mitigating that threat. I close with this appeal to the noble and learned Lord, Lord Falconer. Please will he accept this amendment? Will he confirm that he agrees with me that our consideration of this crucial amendment should neither be regarded nor represented as filibustering?

[Lord Evans of Rainow (Con)]

My Lords, the noble Lord, Lord Shamash, mentioned a very moving story from his family regarding Duchenne muscular dystrophy, and I have a similar story but from a slightly different angle. My cousin Stephen was diagnosed with Duchenne muscular dystrophy in the 1960s, when this was a terminal illness without any real idea of a prognosis other than that those with it would die as very young people.

My family were determined to try to make Stephen’s life as comfortable and as long as possible. They campaigned with their local MP, who just so happened to be Alf Morris, Baron Morris of Manchester—an outstanding Member of Parliament, and of service to this House. They worked with him to come up with the Chronically Sick and Disabled Persons Act 1970. They went on to develop therapies for Duchenne muscular dystrophy, including making wheelchair provision compulsory on the NHS. My cousin lived five years longer than the average for Duchenne muscular dystrophy patients. The point I am making to the Committee is that if the assisted dying Bill had been used to that extent, and if we had given up when he was a very young man, that never would have happened.

Stephen had a full life, in so far as he could; he lived till he was 21 years of age, when the average was 14 or 15. It goes to show that, if you give up at a very early stage, you will not know how far you can push this disease. In the 21st century, through medication, Duchenne muscular dystrophy sufferers have an extended lifespan. In offering assisted dying to people with chronic diseases, we do not know the miracles of science and medication that can extend these people’s lives.

[Lord Blencathra (Con)]

My Lords, I am another Peer who sat here for many hours last Friday, desperately keen to speak to this group of amendments. Towards the end, at nearly 5.30 pm, I heard the magnificent speech of the noble Lord, Lord Rook, who is not currently in his place. It really was an incredible speech. I suppose the only benefit of being a sort of carry-over, tail-end Charlie was that I was able to read his speech in Hansard once again. I commend it as superb. I concluded that there was nothing I could usefully add to what the noble Lord had said, so I have decided not to try to add anything more to it, and I conclude my remarks.