Access to Palliative Care Bill [HL]

Lord Crisp Excerpts

Friday 23rd October 2015 Lords Chamber

[Lord Crisp (CB)]

My Lords, I, too, congratulate the noble Baroness on introducing this Bill and on her very eloquent speech, in which she drew out all the essential points.

The provisions of the Bill are important in themselves but the Bill is also important in raising issues of dying with dignity and good care at the end of life, not all of which, of course, can be legislated for. However, it is significant in another way in that it is about some of the wider changes in priorities in health that are beginning to take place. We are beginning to see both globally and nationally much more focus on disability and on mental health, which I am pleased to see is keeping the Minister busy in this House. There is much more focus on social care, on care more generally and on what are called non-communicable diseases or long-term conditions, where the task is not to produce curative effects but to help people to live with disability and limitations. As the noble Baroness, Lady Finlay, said, it is also about quality, care and costs.

There are things that all those emerging or renewed priorities for health have in common, and I want to mention three of them. The first is the very strong individual, and indeed family, focus. The point has already been made that palliative and end-of-life care needs to be about what individuals want. It is not just about offering a menu of choice; as the noble Lord, Lord Davies, said, it is about control. I am reminded of my father, who, in the last year of his life in his 90s, discharged himself from hospital against the advice of the medical staff. I was quite sure, as I believe were the medical staff, that that act of rebellion—or, if you like, bloody-mindedness—was very good for his morale and probably affected the length of time that he subsequently survived. Therefore, this is about control as well as about a menu of choices, but it is also about families.

Although I agree with the provisions of the Bill, it is a question not just of having a professionalised death but of people being a bit more willing to talk about death, having those sorts of conversations and thinking about death in a much wider way. I am aware of the important point made by the noble Baroness, Lady Hollins: that the person who is dying dies but there is often a serious aftermath, which I guess all of us know something about.

The second important point is variation, and it keeps coming up. We have some absolutely excellent practice—I am sure we all wish to congratulate the UK on coming top of the palliative care table in a recent Economist Intelligence Unit survey—but we also have some awful care. Therefore, it is important to manage variation. The other point that needs to be brought out here is that we need to understand who misses out. We often talk about averages and so on in healthcare but we need to know who is likely to miss out by disaggregating the data and gaining an understanding of whether it is men or women, poorer people or less educated people. Interestingly, in palliative care there is some evidence that one of the groups that seems to miss out is the very elderly—the over-85s. Again, this is a global issue. In the recently agreed sustainable development goals, the great phrase was “Leave nobody behind”, and that must be true of where the noble Baroness, Lady Finlay, is taking us with palliative care.

My final point, which joins up all these emerging priorities, concerns technology—not just assistive technology, pharmaceuticals and so on, which are all extremely valuable, but IT and communications technology. My noble friend Lady Lane-Fox, who is not able to be in her place today, is happy for me to say that her new organisation, Doteveryone, believes that digital health and new technologies can radically transform services. Importantly, Doteveryone will be working on a project focused on older people at the end of life, reaching those traditionally seen as the most excluded—the over-85s. It will be very interesting to see where that project takes us.

I want to make a couple of specific points. First, I know that we have all been lobbied about children’s palliative care. We have not really mentioned it so far in the debate, although I do not know whether others will raise it. It seems important that there is some reference to the particular and specific needs of children when we talk about palliative care.

Secondly, I agree very strongly that this is about all health and social care workers; it is not just about the specialist few. It is about everyone understanding this holistic approach to care.

Finally, in her opening remarks the noble Baroness, Lady Finlay, said that it is time to act and that the Bill is about saying, “These are some mechanisms to make something happen”. That is very important in the context that she and others have articulated—that improving quality is very often about eliminating waste and wasteful procedures. Getting it right and therefore improving quality in many cases also has a beneficial effect on costs. For all those reasons, I very much support the introduction of the Bill to this House.