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For me, the question is not only about how we evaluate palliative care services, but how we do so with informed patients and carers. I do not believe that that is possible without decent, good, rather expensive, I suspect, information services. The King’s Fund put considerable investment into this programme in my time and has since done so under Niall Dickson’s leadership. Will the Government now pick this up and run with it? I hope that the Minister might give me some reassurance about this. I also very much hope that the Government will think hard about how they might ensure the extension of such an information service beyond what was being piloted in south-east London, so that people will be able to make informed choices and the public will be able to judge the effectiveness of all the palliative care options available. I believe that, at best, we have a superb service in this country, but at worst we have inequalities of provision that are shameful and great unfairness to people with conditions other than cancer.
8.16 pm
Lord McColl of Dulwich: My Lords, I, too, thank the noble Baroness, Lady Jay, for introducing this important subject. I was privileged to propose a toast to the health of a gentleman celebrating his 100th birthday last week. A newspaper reporter asked him, “Have you spent your whole life here in this village”? He replied, “Not yet”. We must never underestimate the resourcefulness, determination and humour of the elderly. Of course, palliative care also involves children and people of all ages. It used to be said that it was the elderly who are responsible for most of the expenditure in the NHS. In fact, it is those who are dying who cost the most, and the majority of people who are dying are elderly.
I would like to draw attention to a number of points. First, it has been said already that the Government fund 30 per cent of the cost of adult hospices, but only 6 per cent of the cost of children’s hospices. The Conservatives intend to correct that inequality. Will the Government follow suit or will they continue with the under-funding? Secondly, the overwhelming support for hospices by the people of this country is amply demonstrated by their donating two-thirds of the costs; that is, more than £400 million every year. This is a very significant endorsement of the hospice movement, which was started by that splendid lady, Dame Cicely Saunders, who was a contemporary of mine. I should add that she was 15 years older, and was already a qualified sister and an almoner—a great person.
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I should like to draw attention to research into hospice work, which was done mostly by people working in hospices. They discovered important new treatments, such as maintaining a constant level of pain-relieving drugs in the body, which thereby prevented pain and kept the patient much more wide awake and happier. They pioneered techniques such as drugs applied to the skin—for instance, patches containing Fentanyl—to reduce nausea and vomiting, injecting morphine just underneath the skin or sucking pain-relieving lollipops, which allow patients to be managed at home. Mary Baines worked out a way of managing obstruction of the intestines without the usual unpleasant tube that is put up the patient’s nose. People working in hospices also discovered ways of relieving respiratory distress.
It is worth pointing out again that very little money is given for research into palliative care. Compared with the funds made available for cancer research by Cancer Research UK, the MRC and the Department of Health, hospice care receives only 0.18 per cent of UK cancer research spend, a figure mentioned by the noble Baroness, Lady Finlay. Do the Government intend to remedy this deficiency? On page 216 of an exhaustive NICE report published four years ago, Professor Irene Higginson and the noble Baroness, Lady Finlay, produced a most informative diagram showing conclusively that when all symptoms, patient satisfaction, carer satisfaction and morbidity are considered as a whole, specialist care does have a significant benefit. Moreover, it saves costs and meets people’s preferences. No study has ever shown that it causes harm, which is more than can be said for many of the treatments given to the comparatively well. Considering a single indicator on its own, such as quality of life, may mislead because it measures physical function, which is bound to deteriorate as the patient is actually dying.
I was sorry to hear from the noble Baroness, Lady Jay, about the young lady who was dying. Her account reminded me of a young lady of 26 that I looked after when I was a house surgeon. She was in pain and suffering respiratory distress. I decided that as a doctor my job was to relieve all her symptoms at any cost, so I put a needle into her vein and started very slowly to inject heroin. I asked her to tell me when her symptoms had gone. I administered a considerable quantity of heroin until she told me that all her symptoms had eased. I had given her a huge dose, but to my astonishment not only did the drug not kill her, it gave her a new lease of life.
There is a problem here because many doctors are wary of giving analgesics, especially when there is respiratory distress. I have known some surgeons not to give enough pain relief post-operatively. But the good news is that when these surgeons have an operation themselves, especially an abdominal procedure, they then find out what inadequate pain relief is really like. When they return to work, they roam around like caged lions ensuring that all their patients are relieved of pain and teaching all and sundry how important it is to ensure pain relief. There is no excuse for unrelieved pain, whatever the cause.
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8.22 pm
The Minister of State, Department of Health (Lord Hunt of Kings Heath): My Lords, I thank all noble Lords who have spoken in this excellent debate, and particularly my noble friend Lady Jay. She is of course a distinguished predecessor of mine at the Department of Health and was deeply involved in laying the foundations of the improvements that we have seen come through in the National Health Service. It is a delight for me to respond to her tonight. I start by declaring an interest as a financial supporter of St Mary’s Hospice, Birmingham.
This has been an interesting debate and there has not always been agreement on some of the fundamental issues we are considering here. However, all noble Lords agree that more money should be put into palliative care and I shall certainly respond to that in a moment. But I agree strongly with the noble Baroness, Lady Greengross, about the critical importance of this part of a person’s life and our need to ensure that it is given adequate priority. That is a sentiment with which all noble Lords will agree.
I turn to the question of the definition of palliative care. My noble friend Lady Jay made some interesting observations about the scope and remit of palliative care and discussed what she described as a contemporary definition, and indeed the philosophy and practice of some palliative care practitioners. These are searching questions and I have no glib response to make, but it is important to ensure that there is continuing debate about these matters. The right reverend Prelate offered his own definition of palliative care, as did the noble Baroness, Lady Emerton, and we were treated by the noble Lord, Lord Joffe, to a quote from the NICE definition. I am sure that when we come to debate the Bill of the noble Baroness, Lady Finlay, in two and a half weeks’ time we will again enjoy a discussion of this area, particularly the question of the extent to which palliative care embraces social and spiritual elements. Again, sharply contrasting points of view have been expressed on this in the debate. The noble Baroness, Lady Finlay, spoke of the inevitable links between physical pain and its social and mental impact.
I shall turn to the end of life care strategy in a moment. It will attempt to draw up a definition of palliative care and I will ensure that tonight’s debate is drawn to the attention of the group of people working to address the definition. I think noble Lords will agree that one would not envy those charged with this task, but alongside dealing with the definition they are also helping to develop a strategy that will measure quality of care, including outcomes. I shall also come back to the issue of research later in my response.
My noble friend Lady Jay pleaded the case of the need for evidence-based research, and a number of other noble Lords echoed that request. The noble Baroness, Lady Murphy, talked about some of the challenges faced in doing that and the contrast in outcomes of specialist care and non-specialist care, on which there does seem to be general agreement. She also spoke of the need for openness and honesty about the clinical experience and the wishes of
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As the noble Baroness, Lady Finlay, outlined, I understand the concerns expressed about the availability of funding for research in this area historically, but the intention of the National Cancer Research Institute is an investment of £5 million in palliative care research over a five-year period. Tonight’s debate will be helpful in ensuring that the parameters of that research take into account some of the interesting, difficult and in effect conflicting views expressed about what kinds of research should be undertaken.
So far as effectiveness is concerned, primary care trusts have local responsibility for commissioning and funding services for their resident population, including palliative care. One of those responsibilities is for PCTs to decide upon and take forward a strategy and commission the appropriate services. In doing so, they must ensure that evidence is available about the potential effectiveness of those services. I suspect that noble Lords will say to me that primary care trusts need a lot of help in determining how to judge effectiveness. One of the conclusions I reach on that is that we must ensure that such research looks at the very practical issues facing individual primary care trusts up and down the land.
I turn now to the end-of-life care strategy. As noble Lords have said, work in this area is being led by Professor Mike Richards, the National Cancer Director, with support from Professor Ian Philp, the National Director for Older People’s Services and Neurological Conditions, and other national clinical directors. I can assure noble Lords that the work will go much wider than cancer; this is an end-of-life care strategy for all people and all categories of care.
The strategy is concerned with delivering increased choice to all patients, regardless of their condition, within available resources. I noted with great care what my noble friend Lady Jay said about choice and the need to work with representatives of patients’ interests. I shall certainly ensure that that happens. I take account of the comments of the noble Baroness, Lady Neuberger, about the lack of consistency in relation to choice—she is right to raise the issue—and about how patients and relatives can be helped to exercise choice. Again, I agree with her and I will ensure that that is a factor of the work that is to be undertaken.
As to her point about Compass, in the time available I have not been able to obtain further information. I shall look at the matter, write to her and let her know what the current position is.
The strategy will build on the programme of action set out in the White Paper Our Health, Our Care, Our Say. Some of its key points concern the need to improve the co-ordination of end-of-life care through
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We also want to ensure that we provide rapid and responsive services to meet patients’ needs and preferences and, in response to the noble Baroness, Lady Emerton, to train healthcare professionals in all settings. I agree with the point that she raised.
So far, an extensive written consultation has been conducted and 170 responses have been received; a major consultation conference was held last October and feedback has been helpful in suggesting the direction of travel; and an advisory board, appointed by Ministers and supported by several expert working groups, will be taking forward various developments in the strategy. I will ensure that the advisory board and Professor Richards and his colleagues are given a full account of today’s debate. The advisory board is expected to report to Ministers with recommendations in the autumn of this year.
One of the working groups is examining the potential of end-of-life care in a variety of settings, a point well made by the noble Baroness, Lady Greengross, and other noble Lords. At present, around 55 per cent of deaths occur in hospital, around 20 per cent at home, around 20 per cent in care homes—and we must not forget care homes, although they have not been mentioned today—and around 4 per cent in hospices. Clearly the challenge is to ensure that good quality palliative care is available in all those settings. This strategy is our best shot at setting a framework and objectives to ensure that that happens.
I accept the point made by the noble Lord, Lord Colwyn, about the need to expand palliative care and what he said about pain-relief services. I expect the strategy to address those issues.
The noble Baroness, Lady Emerton, asked some searching questions about the current availability of palliative services in the NHS. There is a considerable variation in the availability of those services and the aim of the strategy is to get a more consistent approach.
I turn now to the issue of resources. I remember four or five years ago taking part in a debate on the question of resources which was opened by the noble Lord, Lord Walker of Worcester. I echo the remarks of my noble friend Lord MacKenzie about the hugely impressive contribution that hospices have made and
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The responsibility for making decisions has to lie with the primary care trusts. Equally, we have a responsibility for setting a framework and a strategy within which primary care trusts can make those decisions. I accept that the deficits with which the NHS has found itself this year have caused PCTs to make some very difficult decisions. I do not run away from that. We had to deal with the deficits—they could not be allowed to go on—and that is why this short-term action has had to be taken. I am absolutely convinced that we need to do everything we can to give long-term certainty to hospices and I hope that the strategy will help us to do that.
I know that funding from the NHS is not as much as noble Lords want but the Help the Hospices survey showed that, compared with 2000, in 2004 there had been an increase in NHS funding for adult hospices of about 50 per cent, with NHS funding for adult hospices averaging about 38 per cent of expenditure. There are other things I could say about funding, and other initiatives, but time is against me. The issue of funding will of course be addressed in the end-of-life strategy, but difficult decisions will always have to be made.
Children’s palliative care is embraced within the work we set out in the White Paper, Our Health, Our Care, Our Say. That requires primary care trusts to ensure that the right model of care is provided, and we will work to support them in that.
I pay tribute to the noble Viscount, Lord Bridgeman, and the St John’s hospice at home project. My noble friend Lord McKenzie echoed the noble Viscount’s remarks. Many hospices have done valuable work in developing hospice care with staff in the patient’s home. We endorse that, and wish to see it developed further.
This has been an interesting debate. We have heard very different views on the nature and scope of palliative care. I suspect we will have further opportunities to discuss that in your Lordships’ House in the next few months. While I doubt whether the end-of-life strategy will be able to provide a definitive answer to some of those questions, it will set out a much stronger framework in which to deliver a much more consistent approach to palliative care services. Tonight’s debate has been very helpful in informing the people developing the strategy of some of the important matters they need to take account of.
- House adjourned at 8.40 pm.
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