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Lord Rea: My Lords, the noble Baroness, Lady Finlay, should be congratulated on choosing a subject that will become increasingly important over the years. Not only are more of us surviving into old age because the diseases that used to polish us off before we reached three score years and ten are now better prevented and treated, but there will be a bulge of ageing people when the post-war baby boomers reach 80 or so around 2020 to 2030.
Terminal care, as many noble Lords have said, is appropriate not only for patients with cancer, but for many medium to long-term illnesses that lead inevitably to death, such as organ failure and some forms of dementia. Motor neurone disease is a distressing condition, as my noble friend Lord MacKenzie pointed out, which often needs palliative care towards the end.
Some 60 per cent of patients say that they would prefer to die at home, and another 20 per cent would prefer a hospice. Sadly, only 18 per cent of deaths happen at home and 4 per cent in hospices. A higher proportion of cancer patients die in hospices—20 per cent, as the noble Baroness, Lady Greengross, has just said.
As a doctor working in the community in north London, I was privileged to have the help of outreach teams from two hospitals—University College and the Royal Free—caring for dying patients at home. They were staffed round the clock by Macmillan-trained nurses, backed by a consultant in palliative care, with links to a famous hospice, Eden Hall.
It was a Rolls-Royce service that was greatly appreciated by patients, families and GPs alike. But for some time to come, it is not a model that can be replicated all over the country. There are not enough specialists or palliative care nurses.
However, several projects are running, which make use of existing National Health Service staff by training and helping to provide effective and satisfying palliative care, about which I shall speak more later if time permits.
In a completely different setting, last year in rural west Kenya on the shores of Lake Victoria I was able to see a community-based terminal care scheme in operation. It was operated by the NGO, ICROSS, which is run by a dynamic Anglo-Irishman called Mike Meegan. Care workers were recruited from literate, intelligent, but otherwise untrained, members of the local population. They were given several weeks' training for the specific task of caring for AIDS victims dying in their own homes. They had links with the local district hospital, which admitted patients to initiate treatment for opportunistic infections, but, once they were stabilised, continuing care took place in the community.
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The benefits of the scheme were remarkable. First and foremost, the patients were hugely relieved to have a carer. A load of anxiety was shed and they became spiritually calmer. If further opportunistic infection occurred, they had ready access to the local hospital. One result of the scheme was that only 50 per cent of the hospital's beds were occupied by AIDS patients, instead of 90 per cent before the community-based care scheme started.
In the much more sophisticated context of the UK, the same principles can be, and in many cases are being, applied to end-of-life care in the community. It is very good news that the Department of Health has recognised that demographic and healthcare trends, quite apart from patients' wishes, require expanded palliative care services.
I am afraid that time does not allow me to give a list of all the projects and guidelines on good end-of-life care that have been initiated and supported by the Department of Health, which often contributes to or collaborates with the voluntary sector. Some of these schemes have been mentioned by noble Lords in their speeches. I could recite a list of them, but there is no time, so I shall refrain.
However, I am particularly impressed by the Gold Standard Framework, which was mentioned by the noble Baroness. It is based in east Birmingham and is led by a general practitioner, Dr Keri Thomas, who has drawn up, and enthusiastically promotes, a detailed scheme that could be applied to most GP practices to improve the quality of their end-of-life care. An initial evaluation of the scheme is very positive.
I think that I echo the noble Baroness, Lady Finlay, when I say that home-based care is not appropriate for everyone in the end stages of their illness, however much they would like it. Sometimes symptoms are so severe that they need institution-based care, for example, severe respiratory difficulties, double incontinence, or intractable nausea and vomiting. Such problems may arise in patients having home-based care and for them there should still be a speedy pre-arranged route into nearby institutional care.
That need not be an acute hospital. Hospices can cope with most severe symptoms, but there are simply not enough of them and they are unequally distributed, as the noble Baroness showed. A temporary solution is for certain wards or parts of a hospital complex to be dedicated to providing palliative care—as the noble Baroness described happening in Cardiff—if hospital staff can be persuaded to switch from a radical curative treatment-based outlook to a more gentle, caring outlook. It is sometimes hard for clinicians to stop treatment and to accept that the aim is to assist dying, rather than to prolong life.
I hope very much that my noble friend will be able to say that there will always be funds available to make Sir Nigel Crisp's aspiration a success. Two years ago, he said:
"Better care for the dying should become a touchstone for success in modernising the National Health Service".
It is a very good investment as, as other noble Lords have said, it will relive pressure on acute hospitals, and everyone agrees that palliative care ensures a dignified and peaceful end to people's lives.
3.39 pm
Lord Cavendish of Furness: My Lords, we are indeed indebted to the noble Baroness, Lady Finlay, for securing this debate and for introducing it so very ably.
In taking part I declare this interest: in the late 1980s I was responsible for much of the research and planning that led to the establishment of St Mary's Hospice, Ulverston in south Cumbria. I have had continuous involvement with it ever since and I am its current chairman. Nothing I have ever done has made more demands on my time and energy; at intervals nothing has given me greater anxiety and precisely nothing has given me such a sense of fulfilment.
I believe that the development of the independent hospice movement in Britain represents perhaps the greatest change for social good which has occurred in my lifetime. I base this rather extravagant sounding claim not entirely on what hospices have achieved but on what they might yet achieve if they are allowed the necessary freedom and space in which to develop.
Central to what I have to say this afternoon—it is a slightly different emphasis from other speakers—is that if we lose our independence, then to all intents and purposes the hospice movement that people have come to know and value will be destroyed. I know with what intensity it is valued by people, as I have seen at first hand the lengths people go to both in financial and voluntary terms to support their local hospice.
I am not alone in noticing that attractive, popular and successful activity in the independent voluntary sector can give rise to public sector resentment. This resentment is especially evident if money is perceived to be flowing to areas which it does not control. At its Worst, frustrated public bodies use or misuse their considerable power to hinder and obstruct.
Our hospice of St Mary's serves a population of 120,000 people. At today's prices the operation costs—not the fundraising costs—£1.7 million a year, which equates to £14 for every man, woman and child in the catchment area. That we have raised such sums is a huge tribute to our appeals team. In one of Britain's less rich areas it represents a generosity of spirit that compares extremely well with any other part of the United Kingdom. However, I am not confident that that is sustainable. We are felt by some to be asking too much and impacting too heavily on the work of other important local charities.
Against a government target of 50 per cent grant aid, and figures I have heard of 30 per cent, we get 10 per cent grant aid. Historically that has been all we have ever had. I do not know of any other hospice that gets less. I think it was nearly four years ago that the famous £50 million hospice package was first announced on the steps of our very own hospice, St Mary's, by Mr John Hutton MP with much press fanfare. Out of that extremely useful pot we have so far
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received not a single penny for core funding. Our local primary care trust has turned down all requests for support from that source and is only now offering modest financial packages for non-core services that we neither need nor want, and then with a raft of strings attached.
The Minister will say, with some reason, that funding is a matter between the PCT and ourselves. I merely say that I hope it is a matter of concern to him that a policy so publicly announced by his department should have so signally failed in terms of outcome. The truth is, of course, that the local PCT is broke and is also determined to control us by any means open to it.
The financial plight of primary care trusts certainly does not prevent them servicing a huge plethora of committees and working groups. We have to attend in person not one or five or 10 but 12 such committees and groups to retrieve the miserable 10 per cent funding to which I referred.
In regulatory terms the Healthcare Commission is hugely intrusive. The inspecting team spends two days in our filing cabinets and only 20 minutes on the ward and in day care. Our staff simply cannot understand what the purpose of such inspections is.
We measure PCT forms to be filled in by weight; one of the latest of those forms had us defending our performance in the last quarter on why we had not cured any of our patients. We estimate the staff costs of processing the paperwork alone generated by the PCT amounts to £18,000 a year. This absurd second-guessing does not happen with other hospices that I know of. I understand that the Government's admirable Compact Plus scheme, requiring public sector bodies to be more accommodating to the independent sector, has been adopted in other areas ahead of the official starting date. Perhaps the Minister will have something reassuring to say in that respect.
The universal and holistic way in which we in the independent sector understand and practise palliative care is something the NHS cannot hope to match, either in quality or in terms of cost. It is not designed to do so.
We have such qualities in our hospice movement, as the noble Lord, Lord MacKenzie, said. He spoke of the importance for patients of the feeling of safety. The other day I was talking to the young and talented chef at our hospice, and she was saying very movingly what a challenge it was, when any patient came in, to find out in the last days of their life, not only what they could eat, but to help them try and get some pleasure from eating it. Little details like that make such a difference.
I come now to a suggested way forward for funding. Since virtually all our patients are referred to us by the NHS, and since we care for them without charge, is there not a simple and fair formula for getting public sector finance into our hospices? Reflecting on various options that have been talked about lately, either we could be paid a sum for each patient that is referred to us—and remember how much money we are saving the taxpayer—or the public sector referrer might choose to buy a proportion of our beds and services annually.
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A healthy and constructive partnership would result from such a course, and it would lead to a much lighter touch in terms of regulation. After all, the referrers will always have the choice of using or not using our services. The other judges and arbiters of our standards of care are the public. I see nothing wrong with that; indeed, I would see only good coming of their being rather more carefully listened to.
Finally, it seems likely that cancer will have ceased in 10 years' time to be the major life-threatening disease it is today. In our catchment area, because of the asbestos-related cancers from the former shipbuilding industry, we will sadly have those patients for rather longer. As has been said so eloquently and so importantly in this debate, there are other cruel diseases and tragic human conditions where our model of care will be ideally suited to people's needs. We would like to reposition ourselves over the next few years to meet such a challenge. It is a model that works and, beyond all doubt, that people want.
When the Minister comes to reply, I would welcome his reaction to my suggested funding methodology. In the important area of our longer-term development, perhaps he will be kind enough to reflect on what I have said, and write to me in due course. As I have illustrated, we have had rather a poor deal at the hands of his department. Rather than dwell on that, however, I would like to see a future partnership that respects our independence in the cause of maintaining and developing excellence in palliative care. At the moment a threat hangs over the hospice movement, and I should like to see it removed.
3.48 pm
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