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Why should there be any differential at all? In referring to the voluntary sector, the NCPC bulletin stated that very few service cuts were identified. In other words, the voluntary sector hospices are, I surmise, simply getting down to it and getting on with their dedicated mission. Before this debate, I promised the Minister that I would not repeat my accusation of cynicism on the part of the Government. But is it
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Those of us associated with the voluntary hospice movement have every sympathy with the financial problems faced by hospice units within the National Health Service—indeed, we work very closely with them. My noble friend Lord Patten may be interested to know that I spoke to our hospice director this morning and in her office was seated the director of the Pembridge clinic. That shows the degree of co-operation between hospices in localities.
I feel strongly that, with the huge dependence on the voluntary sector for palliative care, which, as I said, I predict will increase rather than decrease, the uplift contribution should be the same for both sectors. I hope that the Minister will be able to give some reassurance on this subject, which I hope to pursue in Committee.
1.03 pm
Baroness O'Neill of Bengarve: My Lords, like other noble Lords, I feel a great debt to my noble friend Lady Finlay of Llandaff for introducing this important Bill. As many points have already been made, I shall be very brief.
I believe that the crucial term in the Bill is “strategy”—this is about a strategy for palliative care. A strategy will have more fundamental and less fundamental parts. I entirely share the objective of palliative care that provides for the social, emotional and spiritual needs of each person as he or she is dying, but in all of this one of the great triumphs of the hospice movement has been to attend to pain relief. I believe that this has a certain strategic priority because it makes it easier to attend to all the other things that the dying person may need.
We have heard some hard experiences, and I am going to tell your Lordships one more. My brother was a very well organised man and, when he knew he was dying, he made contact with the local hospice and the local nursing home. He visited both and knew what was available. When he decided—and it was his decision—that we were no longer able to look after him at home, which was true, he asked me to ring the hospice. It said that there were six people ahead of him before there would be a bed available. That meant that six people would have to die. I knew that my brother had waited until the last moment and that he could not wait for that, so his GP got him into the nursing home. The staff there, together with the local vicar, were splendid at giving emotional, social and spiritual care but they did not have the authority to prescribe additional drugs, and it was Christmas weekend. As Christmas Day and Boxing Day—your Lordships will remember that it was the day of the tsunami—went by, I began to long for him to die soon because it was not possible to give him the pain care to which he was entitled, which he needed and of which those running the nursing home had full experience; but, in the wake of the Shipman inquiry, they did not have the authority, without the say-so of people they could not reach, to increase the amount of morphine.
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1.05 pm
Lord Cavendish of Furness: My Lords, it is with real pleasure that I support the Bill, introduced with such eloquence and authority by the noble Baroness, Lady Finlay of Llandaff. It would be hard to exaggerate the contribution that she has made in this field. She combines the hard-headed approach of a distinguished scientist with the humanity that comes of a penetrating understanding of human suffering. It is a combination that I welcome, especially as there appears to some of us to have existed in recent months a trend for the end-of-life debate to pit the scientific approach against the humanitarian one, when I think that most reasonable people believe that it should draw on both.
As on previous occasions, I need to declare my personal interest in the Bill. I was one of the founders of St Mary’s Hospice in Ulverston, south-west Cumbria, in the late 1980s; I have been continuously involved with the organisation ever since and am currently chairman.
I have regaled your Lordships on the problems we have faced at St Mary’s through our gross underfunding and through the failure on the part of the then PCT to understand what the hospice was about or to deal fairly with us. Although there remains very little improvement on the very low 10 per cent funding we have historically received from the Government, I have grounds for mild optimism, and that optimism grows stronger with the introduction of the Bill.
Echoing my noble friend Lord Bridgeman, I say that at 10 per cent funding in an area such as mine, it has been a very painful operation to keep going, and it is completely unsustainable. I cannot ask local people to contribute 90 per cent for this sort of operation.
This measure seeks to enshrine in law what has in effect been the policy of successive Governments for the past 20 years or more. Apart from providing a statutory framework to ensure that palliative care becomes a mainstream service, it provides for its effective delivery for all who need it. In addition, and very significantly from the point of view of those who run a hospice, it requires commissioners to identify need in their area, demonstrate transparency in publishing their plans of action and account for the progress they are making towards improving core palliative care services.
I do not know whether the noble Baroness had any choice over the timing of the Bill’s introduction. For me, the timing is perfect, coinciding as it does with the Government working up their end-of-life care strategy, on which they will report later in the year. On that activity, I have this to say: for a long time now, I have been struck by the public sector’s selectivity when it comes to consulting people. It is as though it avoids having to listen to anyone who might challenge current orthodoxy or whose superior experience and knowledge might be seen as a threat.
I share the view of the right reverend Prelate the Bishop of St Albans that it seems odd that the advisory board for the end-of-life strategy includes no
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On the end-of-life care strategy, might the Minister be able to help me when he comes to speak on behalf of the Government? According to information that I have, there are across the United Kingdom nearly 100 vacancies in palliative care medicine. On the understanding that the new strategy will extend, quite rightly, far beyond cancer, the workload will inevitably increase significantly. I have heard it suggested that it may even double. Will the Minister tell me, or perhaps inform me in writing, what steps he has in mind to address this problem?
Reading the debate introduced by the noble Baroness, Lady Jay, not long ago—I was very sorry to miss it—I experienced some unease at a number of noble Lords challenging the notion of palliative care going beyond the relief of physical symptoms. There are certainly some add-ons and therapies that we offer in St Mary’s which I would be very hard pressed to measure. I do not think that I can improve on the observation made by right reverend Prelate the Bishop of Winchester in that debate, who said:
“I am not arguing that the effectiveness of palliative care services should not be rigorously assessed and evaluated, but I suggest that in this field, as in many others, there is much that is real, true, describable and important, but not, in the end, measurable”.—[Official Report, 31/1/07; col. 311.]
Albert Einstein put it even more simply:
There is another major stakeholder whose voice is seldom heard—the general public. Of this I feel certain. The general public, certainly in Cumbria, most certainly want the unmeasurables that we provide. In support of that opinion, I ask why else they give such unstinting and loyal financial support. In our case, it is nearly 90 per cent of our total costs.
I shall highlight just one of these unmeasurables—the bereavement service. This is quite often dismissed as unimportant and low on the scale of priorities. Perhaps there was a time when even I was a sceptic. I now know through our experience that it is hugely important. Put at its most prosaic, it is quite often the only path along which a devastated individual family is able to function and resume normal life. Put another way, at the heart of what we in the hospice movement believe is that not only dying people, but also their families and loved ones, must know that they will not be abandoned to their suffering just when they are most in need. Not infrequently, it is the dying person who needs to know that the family will be looked after in this way.
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At a 30 per cent level of public support for hospices, I venture to suggest that a happy synergy kicks in. Ministers who are faced with an imperative to account for public money can sleep easily in the knowledge that they are getting a bargain deal on core costs of palliative care, and the public get the extras through their local contribution. However, if this is to work, as it can and should, it will entail close co-operation between the public and voluntary sectors. Such co-operation has so far been elusive. Differing cultures present real problems which cannot be wished away.
Here I come to my second area of optimism. We in Cumbria have a new PCT under new leadership. We are in discussion with this almost brand-new organisation, with a view to establishing what has become known as social enterprise, which would provide the best possible end-of-life care through proper partnership between the hospice movement, the NHS, social services, the voluntary sector and private nursing homes. The PCT has made it clear to us that it believes that our hospice can play a leading role in developing and spreading best practice around individualised patient care. I pay warm tribute to it for this brave and welcome initiative. I believe that it would be the first such enterprise of its kind in the UK and could herald a new era for hospices. It will be a triumph for all participating parties if we can make this work. We are in the very early days of building our partnership, but I have high hopes for it. There appears to be the will among all concerned and on all sides for it to work.
I would welcome the Minister’s comments on rurality—I have touched on it previously. There was a time when, as I remember, financial formulae were in place which were designed to even out the inequities of public service provision which arose out of rurality or remoteness. They have largely been removed with two results: first, providers in rural areas are put under terrible pressure to maintain services and balance their books. The second inevitable consequence is growing rural deprivation. I know that this is a complex subject, and I acknowledge also that common sense dictates that there are trade-offs as a consequence of living in a remote area. However, there should be areas in which there should be no trade-offs and no compromises, and palliative care is one of them. I hope that the Minister will look at this again. If he does not, I fear that he will add in significant degree to the growing problem of rural deprivation and the worsening provision of palliative care in areas such as Cumbria.
It has been pointed out to me that Eric Cassell, professor of public health at Cornell University, is regarded as one of the greats in contemporary medicine. He has said:
This short but important Bill seems to echo Cassell’s dictum. I support it and wish it safe passage.
1.16 pm
Lord Alton of Liverpool: My Lords, my noble friend Lady Finlay of Llandaff has rendered a great service to your Lordships' House by introducing her
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My noble friend’s Bill is urgently needed and the speeches that we have heard have explained why. The UK leads the world in palliative care, but its universal application is compromised because this crucial service remains underfunded. The Bill is not about assisted dying or euthanasia, which rightly remain entirely outside the scope of this measure. However, as the noble Lord, Lord Colwyn, argued earlier, it provides us with a radical alternative to arguments for the killing of the terminally ill or disabled.
As my noble friend told us, palliative care is about enhancing quality of life and enabling patients to live as actively as possible until they die naturally, peacefully and, wherever possible, with their families around them. The World Health Organisation describes palliative care as improving,
- “the quality of life of patients and families who face life-threatening illness, by providing pain and symptom relief, spiritual and psychosocial support from diagnosis to the end of life and bereavement”.
By 2031, 23 per cent of the population will be at pensionable age or above, of which 12 per cent will be over the age of 75, in comparison with about 8 per cent at present. As people live longer, the need for palliative care services will clearly increase hugely, and we need to confront the issue now to plan well for the future. That is why the Bill is so timely. It is unacceptable that two-thirds of hospice funding still comes from the voluntary sector. The National Council for Palliative Care has recently released a funding survey which states that around 60 per cent of hospices are experiencing a real-terms decrease in the value of the funding contributions from the National Health Service.
I know from my own involvement over many years as vice-president of JOSPICE—St Joseph’s Hospice Association—that its hospices at Thornton on Merseyside and at Ormskirk in Lancashire, as well as its hospices overseas, run at full capacity. At times, it has been a desperate battle to raise the funds to ensure that they can meet those needs. The quality of palliative care in hospices such as these and all over Britain, as we have heard from all parts of your Lordships' House today, has made huge strides during the past 10 to 20 years, but its quantity and distribution simply have not kept pace. As a result, there is a postcode lottery for the terminally ill, as was said in the preceding speech. Inadequate funding is allotted to palliative care within the NHS and there are not enough trained specialists in practice.
Three years ago the NHS Cancer Plan promised an extra £50 million a year specifically for specialist palliative care. This addition, made by the Government, is of
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Half of all patients diagnosed with motor neurone disease—an issue raised powerfully by the noble Lord, Lord MacKenzie of Culkein—die within 14 months of diagnosis. Yet in 2005, the Motor Neurone Disease Association identified that only 39 per cent of these patients were referred to specialist palliative care services. Because hospices have often been funded by cancer charities, some only admit one person with MND at a time and access can be difficult. Is it any wonder that people often become deeply depressed or suicidal when diagnosed with MND, particularly when their fears can be stoked by the pro-euthanasia lobby? Palliative care does not require expensive treatments or technology because its essence lies in specialist knowledge of how to use pain-relieving drugs and how to give holistic care to ease the dying process. A relatively small refocusing of NHS resources would bring disproportionate benefits compared with other branches of medicine. Only a minority of us will need cardiac or neuro surgery but one in two of us will be in need of good palliative care when we die.
In the recent debate in your Lordships’ House initiated by the noble Baroness, Lady Jay, which has been referred to, I was disappointed to read some of the scepticism that was expressed about the holistic nature of palliative care, especially the spiritual aspects—a point touched on at the outset of the debate by my noble friend and by the right reverend Prelate the Bishop of St Albans in his very moving speech. The World Health Organisation description of palliative care that I referred to earlier specifically refers to the spiritual support provided by palliative care and the desirability of providing that support. The importance of this spiritual support is reflected in guidance from NICE. I was interested to read some material from the Association of Hospice and Palliative Care Chaplains on this point, which states:
“Spiritual Care has always been central to the philosophy and practice of Palliative Care. Palliative Care seeks to be holistic in its approach to its care of persons with life-threatening illness and to integrate the physical, social, psychological and spiritual so that patients and carers may come to terms with their experience of dying as fully and creatively as they are able”.
At a time when fears are being expressed about the marginalisation of faith groups in the delivery of public services, I look forward to receiving the Minister’s assurance that the Government, like WHO and NICE, recognise the importance of the spiritual dimension of palliative care and will ensure that this support service is appropriately resourced.
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By extending palliative care to all terminally ill patients, as my noble friend’s Bill attempts to do, the Government would save the NHS money. Marie Curie Cancer Care in its Dying at Home report points out that every pound invested in home palliative care services will free up £2 in the NHS. This is an attractive proposition, yet despite increased funding commitments the number of cancer patients dying at home has remained the same—a point made by the noble Baroness, Lady Howe of Idlicote, and others—with 80 per cent of resources allocated to specialist palliative care being allocated to hospital-based care, and that should change.
A Help the Aged report found that older people are,
- “less likely than younger people to receive support at home, in hospital or in a hospice, or to receive attention from GPs or district nurses during the last year of their lives. Older people are often described as the ‘disadvantaged dying’”.
But children are at a disadvantage too. I am a patron of the Zoe’s Place Trust, a charity that runs two baby hospices, one in Liverpool, which I helped to establish, and the other in Middlesbrough. There are plans to open a third in the Midlands. When one considers that children’s hospices receive only approximately 5 per cent of their funding from official sources whereas adult hospices receive 30 per cent from the same sources, it comes as little surprise that many children’s hospices struggle to survive. It costs an average of £2.5 million to run a children’s hospice service each year.
In a joint submission by the Association of Children’s Hospices and the Association for Children’s Palliative Care, provided for me by St Francis Children’s Hospice, Manchester, which I have visited and where I am a patron, it is estimated that 25,000 families in the UK are coping with morbidity of a child, adolescent or young adult. They say that 3,400 children die annually with 80,000 to 100,000 family members affected and requiring palliative care and support. The submission is an excellent document in which they describe their,
a point so eloquently expounded upon earlier by the noble Lord, Lord Carlile of Berriew. I commend that submission to Members of your Lordships’ House for further study.
But if holding the line of existing provision is extremely difficult, what of expanding the provision of children’s hospices? Hospices such as Zoe’s Place are extremely grateful for the £27 million, spread over three years, which the Government have recently made available to them, in the form of so-called Section 64 grants by the Department of Health. But these funds are to help with running costs of existing hospices. What we badly need are more hospices. It is highly desirable that the Government should help with capital costs; for example, by providing matching funds to enable charities to expand the total provision of hospices, especially for the young. No fundraising is easy, but raising cash to sustain existing premises, which people can see and actually use, is probably easier on the whole than getting support for a project which is still on the drawing board. So what are most
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