(12 years, 10 months ago)
Lords ChamberMy Lords, I, too, put my name to the amendments in Committee that have helped to precipitate this very welcome government amendment and the support of the Minister. I do not want to repeat what has already been said but I want to make one point: we in the House of Lords have worked hard to promote the importance of research in the NHS, and we will take a strong interest in the mechanisms that I am sure the Minister will describe in a moment, and indeed later on Report, to see how this duty will be promoted and evaluated. There are also important mechanisms in this House through the Science and Technology Committee, and I hope that many of the noble Lords who are on that committee will bear that in mind when it comes to looking at how this welcome duty is put into practice.
My Lords, I would also like to formally record an enormous welcome to these changes to the Bill. What has been said in particular by the noble Lords, Lord Willis and Lord Warner, is very pertinent regarding the need to keep questioning. The one thing now that can happen is that those who are actively involved in research can actually question if they get blocked, in a way that they could not before. I think that they will be very bright and questioning people who will make it known if they are not able to do the research that they see needs to be done for the improvement of clinical services.
Indeed, if we can speed up the processes, perhaps we can create an environment in which all patients and relatives understand that a research-rich environment is one that drives up standards of care, and therefore that they are not being experimented on but are being invited to participate when there is equipoise in the highest standards of monitoring that they could possibly have. The governance around research processes in this country is potentially second to none. We may then regain some of those external trials that up until now have, sadly, been bleeding from our shores. The amendments are incredibly important and their universal welcome is very appropriate. The Minister is to be personally congratulated.
(12 years, 11 months ago)
Lords ChamberMy Lords, I shall make a brief intervention in support of the noble Baroness, Lady Meacher. It is important for the House to remember that whatever is said in the prognosis of someone who has an advancing life-threatening disease, it is completely unreliable; it is no better than a guess. These patients are living with uncertainty. They may die much sooner than their prognosis predicts or they may live longer, but they know that death is staring them in the face.
We are talking about adults of working age. They often have dependants. They often have children for whom they must make provision. If they do not use what energy they have to work on making provision for those children, the problems in the next generation among bereaved children will be much greater. There are questions about who will care for the children, what provision will be made, what the children are being told, how they are being prepared for bereavement and so on, quite apart from legal arrangements. Many people who are single parents say that making provision for those children is particularly difficult at times. Therefore, it does not make sense to take what little energy people who are ill have and put them through a system that stresses them further. It is much better for our society to use the energy that they have to do the thing that they know needs to be done, which is to make provision for those who will be left behind after their death.
I just emphasise that the uncertainty with which they live makes their lives even harder. It is impossible for an employer to know accurately about taking someone on. They may take them half way through an induction period before they become ill. Given the competition for jobs at the moment, any employer seeing this will, if they are in their right mind, say about the job that needs to be done, “Hang on, is this sensible for my place of work?”, however much they want to help someone. I caution the Government against preventing people using the energy that they have to make provision for the future of those who will be left behind after their death.
I just want to thank the Minister for bringing forward Amendment 43 and the other government amendments in this group, and for listening to the debates in Committee. I do not want to detain the House in any way—I know we are engaged in several critical debates this afternoon—but the noble Baroness, Lady Meacher, has explained very eloquently the challenges that the Government have in addressing the thorny, knotty and difficult problems of people facing terminal and life-shortening illness. I do not want to say more than that because her points have been made so clearly.