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Baroness Neuberger: My Lords, I, too, thank the noble Baroness, Lady Finlay of Llandaff, and congratulate her on initiating this debate. I also congratulate the noble and learned Lord, Lord Lyell of Markyate, on his maiden speech. I have admired him from afar for many years. I hope that we shall hear him on many occasions, including on this subject, about which he is so knowledgeable.
Like everyone who has spoken, I declare a variety of interests. I am vice-president of the North London Hospice, I have written books on the subject of palliative care for those of different faiths, and I have a general involvement in the hospice movement. Formerly, I chaired an NHS trust that provided palliative care, and I was chief executive of the King's Fund. I shall not list any more.
It has been extraordinary to be present for this debate, hearing people speak with great passion and enormous knowledge on the subject of palliative care
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in this country. It was wonderful to hear the noble Baroness, Lady Finlay, telling some touching stories about the kind of things that people want and need at the very end of their lives and to hear the noble Baroness, Lady Greengross, talk, in particular, about the needs of older people.
Like the noble Lords, Lord Hayhoe and Lord Newton, and many others, I pay tribute to Dame Cicely Saunders, who was one of the people who introduced me to the hospice movement. When, a long time ago, a group of us talked to Dame Cicely about the possibility of setting up a multi-faith hospice, we discovered that she had sent away all other groups saying, "You don't need to do that to set up a home care service". In our case, she said, "It is needed". To a very large extent, hospices have an overwhelmingly Christian atmosphere and there is a need for a hospice that will specialise in a multi-faith approach and that will teach and disseminate different ways of thinking about palliative care. For her enthusiasm in that, many of us have reason to be very grateful.
We also have reason to be grateful to someone who has not been mentioned todayDame Albertine Winner, who was the first medical director of St Christopher's Hospice until Dame Cicely managed to requalify from her position as a nurse to become a doctor.
I take slight issue with the noble Lord, Lord Joffe, who thought that there were a small number of people who liked to be in control of their lives and for whom palliative care might not be suitable. I do not think that the noble Lord ever had the pleasure of meeting my parents. They were the kind of people who liked to have control over their lives. At the end of their livesneither of them suffered from cancerthey both received palliative care of the highest order. They were totally in control of the care they were given and the amount of medication that they received. That is very important. Some people do not want anything to do with palliative care but, in general within the palliative care movement, there is increasing recognition that the patients themselves take control of how things work.
Like many other noble Lords, I believe that there is one issue that we should lay before the Government today, and I hope that the Minister will be able to say something about it. That is the lack of availability of palliative care for most conditions other than cancer, although there is some availability for motor neurone disease and for AIDS. There is clearly a question about how that works at present in this country. Others have spoken about children's hospices and the possibility of dying at home. It seems to me that we should take seriously the evidence of the noble Lord, Lord Newton, that about 25 per cent of people prefer to die at home. We should ask the Government what measures they will take to ensure that that is increasingly possible, particularly for those who do not have cancer.
I became involved in this matter wearing my original rabbinic hat. My particular area is recognition of cultural and religious differences in palliative care and the need for sensitive handling of differences in palliative care, echoing very much what the noble
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Lord, Lord Patel, said. In some areas and in some hospices it is very much better than in others; for example, it is the main raison d'être of the North London Hospice. However, in my NHS experience, when I covered a patch that involved two London boroughs, it was infinitely better in one borough, Camden, than it was in the other, Islington. It is difficult to explain that, except for historical reasons.
Like the noble Lord, Lord Rea, I want to throw a bouquet to Eden Hall, the Marie Curie hospice in Hampstead and the Royal Free Hospital palliative care team who seem to me to have it about right, dealing with an incredibly difficult and diverse population. It is enormously sensitive in dealing with people who do not have cancer. But to some extent, they are the exception and they are one of the beacons in London where availability of palliative care for conditions other than cancer is not very great. It is by no means universal. We can all tell stories, both good and bad.
Some noble Lords will know that the Lisa Sainsbury Foundation was set up by the Sainsbury family trust, particularly to train nurses to deal with different divergent, ethnic, religious and spiritual issues. It no longer carries out that work. It made a valiant attempt but it was the kind of valiant attempt that, having started in the independent sector, now needs to be taken up by government. I ask the Minister how much work is to be done in that area. I believe a promise was made in the response to the health committee's report on palliative care that further work will be done. It would be good to know how far that has gone.
This does not concern only religious and ethnic backgrounds; it also concerns professional backgrounds. One only has to ask a palliative care team about their nightmare patients and they will tell you that it is healthcare professionals, as they ask far too many questions and they want to know far too much about their own final diagnosis. I should think most Members of your Lordships' House would be very similar. Also they do not take advice and they are extremely difficult. That is only natural, given that they are healthcare professionals.
That can also apply to people who are isolated from their home background. They receive the diagnosis that they are terminally ill in a specialist regional centre, miles away from home. They have bad news and there is very little availability of liaison teams, liaising with local palliative care services or liaison between specialist regional centres and local services. Even more pertinent perhaps is a case made brilliantly by Help the Aged in a report that it co-published with the policy press earlier this year, in which I was involved.
There are also issues of discrimination on the basis of age or not having a malignant disease, about which we have heard so much today, or on the basis of living alone. If one is old and lives alone and one does not have the strength to argue for the kinds of services that one wants, very often, as the noble Baroness, Lady Greengross, said, one does not receive the treatment one wants. That is even more apparent with
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people who have end-stage dementia. We know that dementia at the end is largely a terminal condition. We know that older people generally receive far less in the way of palliative care. Often they will end their days, if they have a terminal disease, in a care home where the staff have rarely received any training whatever in dealing with people with an end-stage disease.
A question that perhaps we should lay before the Minister today is what will be done to ensure the training of care assistants and relatively junior staff in care homes where many of our frailest older people will end their lives. It seems to me that we can do much at the top endtraining doctors and nursesbut we have been slow to consider the training needs of care workers and care assistants, who often provide much of the personal care to frail and vulnerable older people at the end of their days.
We all want a guarantee of palliative care to all who are dying of whatever condition. The Government have promised that, and we must congratulate them on what they have already done in the field of palliative care. I think that we all admire the Gold Standard Framework, which the noble Lord, Lord Rea, has already mentioned, and ask that government roll it out across the country.
However, what will the Government do in the light of the relative underfunding of care homes? The King's Fund's London inquiry into the care market made it very clear that there is still tremendous underfunding in care homes. That underfunding makes it hugely difficult for care homes to improve the quality of their end-of-life care. What will happen when we have a large number of enthusiasts for palliative care in this countrythe noble Baroness, Lady Finlay, has already mentioned those strong, feisty, tough peoplein healthcare teams wishing to provide a palliative care service and there is no available funding? Take, for instance, Doctor Mendes Da Costa's GP practice in Kidderminsterthe well known Kidderminster that is always a nightmare. What will we do to allow local populations to make decisions about what palliative care is available? To what extent will it really be down to local PCTs and to what extent will government give greater guidance?
I am running out of time, but I ask the Minister to answer two questions. First, we have heard that the Government will meet their manifesto pledge to double investment in palliative care services. We all want to know how much money that will be, what the basis of the calculation is, and when the money is coming. Secondly, as the noble and learned Lord, Lord Lyell, mentioned, my former colleague Professor David Taylor, at the School of Pharmacy, argues that every £1 spent on palliative care releases £2 for other use in the National Health Service. Do the Government accept that calculation? If so, will they therefore increase their funding of palliative care accordingly?
The palliative care movement and hospices are dearly loved in this country. We have already heard Nigel Crisp's description of palliative care services as the touchstone of a modernised health service. I hope
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that the Minister can reassure us that more will be done to help those wonderful services to grow, improve and increase their reach to the whole country.
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