Terminally Ill Adults (End of Life) Bill

Debate between Baroness Scotland of Asthal and Lord Winston

Committee stage
Friday 14th November 2025 Lords Chamber

[Baroness Scotland of Asthal (Lab)]

If we look at what Professor Foster and others have said, they say that the Mental Health Act 1983 is the sort of assessment that a psychiatrist should make as to whether they are in a position to make that decision. It is not just the MCA on its own—

[Lord Winston (Lab)]

My Lords—

[Baroness Scotland of Asthal (Lab)]

If I could just be allowed to finish, I would be most grateful, because I have taken only three minutes and 48 seconds, and I do not intend to trouble the Committee for very much longer.

This issue has to be looked at. We have to be serious about looking at the Mental Health Act 1983, looking at the Act on capacity and coming up with something that suits. This is too serious for us not to do it. All of us care deeply about those who suffer, care deeply about those who face a diagnosis about the end of their lives, and we have to get this right. So, I ask the Committee to be kind to each other, to listen, to understand that the pain that is suffered on all sides is real and that we are entrusted to do something quite extraordinary once in a generation and we cannot fail. And I know that the people in this Committee will not fail, because we will take our job seriously.

[Lord Winston (Lab)]

Before my noble and learned friend sits down, will she just recall some evidence that we took in the committee that we sat on together only a week or two ago? My noble and learned friend was very keen to have evidence from New Zealand, where they had a three-year follow-up which showed that three-quarters of the patients who had asked for assisted dying had already been on palliative care. The two things are not exclusive by any means, and it is certainly relevant to consider that. Palliative care, of course, was okay, but some patients finally decided that they did not want it any more—most of them, in fact. It was 2,880 patients.

[Baroness Scotland of Asthal (Lab)]

We were very grateful to receive evidence from New Zealand, and we heard from a practitioner about the challenges and the opportunities that there are. But we also heard that New Zealand had moved from being the third most successful in delivering palliative care to the 12th, and there was a direct correlation, we were told, between the reduction in the investment in palliative care and the existence of the new service. These are the realities, and there are many who have said that if there is to be a real choice—if I can just finish this sentence, I would be grateful—then the choice has to include a fully funded palliative care service to enable people to choose whether that is the course they want to go down, or another. Without that, the choice is not a real one.

Human Fertilisation and Embryology (Mitochondrial Donation) Regulations 2015

Debate between Baroness Scotland of Asthal and Lord Winston

Tuesday 24th February 2015 Lords Chamber

[Lord Winston]

My Lords, I declare an interest in that it was my scientific group which started pre-implantation diagnosis—the first attempts to diagnose genetic diseases in embryos in families who have these fatal, sad genetic flaws in them. I congratulate the Minister on his absolutely balanced and fair speech. From time to time, we have not agreed, but I think that his care, compassion and courtesy are deeply appreciated by the whole House. I also congratulate the noble Lord, Lord Deben, on his very clever speech. I do not agree with what he said and I hope that, at other times, we can see why we disagree. I accept that he is talking with deep conviction, but I think that we have already sorted out most of his objections, both the legal and the difficulties of side-effects.

[Baroness Scotland of Asthal (Lab)]

My Lords, before my noble friend goes any further, I say to him that there are real differences in legal opinion. I do not think that we have quite sorted them out yet.

[Lord Winston]

I am very grateful to my noble and learned friend for that.

I want to do something which I have done previously in debates of this kind, which is to talk from personal experience. I may be one of the few people in the House who have sat with an endless number of parents who have a genetic disease in the family, have listened to their problems and have seen the kind of dilemma that they face. I am reminded of the child Jeremy “Martinez”—forgive me if I change the surname, but I do not have approval to give the surname of that patient from some time ago. We were doing in vitro fertilisation and pre-implantation genetic diagnosis in the 1980s, and the first babies, who are now 25, were born in 1990. At that time, we were looking at the very common genetic disorders. It is interesting to consider that there is a vast number—too many, some of us think—of Members of this House. At least 40 of you, on mathematical probability, will carry the fatal genetic mutation for cystic fibrosis. That is very common indeed and much more common than the problem with mitochondrial disease, even though we are beginning to see that it is becoming rather more common as we get better molecular techniques.

What is very clear, and it is very important because it has not been stated, is that the number of families who will be of child-bearing age when a mitochondrial disease is diagnosed will be very few. That is important because we are not talking about a large number of people; we are talking about a small number, but they have a definite problem for which they need some desperate solution. They are prepared to do whatever they think is best for their families, with informed consent.

In the case of Jeremy, he was a bit slow to grow, but by nine months he could not lift his head. He started to vomit; he had diarrhoea; he then progressively developed muscular weakness and started to get epileptic fits. These fits would often go on all night; this child screamed with pain and was uncontrollable; eventually, having gone both blind and deaf, with severe mental problems with his brain, he died at the age of two. There was no treatment. His mother came to see me to ask if there was any possibility that she might have some screening of her embryos in the future. This was in 1989. Certainly, Alan Handyside and I had discussed the possibility of looking at mitochondrial disease, but we did not have the molecular techniques at that time to have any chance of being able to screen an embryo. It is true that that screening has now happened and can be done; indeed, there is a very interesting report from Newcastle University showing how that can be done in some cases. However, it is not always satisfactory, for the reasons that the noble Lord, Lord Patel, stated.