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Lord MacKenzie of Culkein: My Lords, we are most grateful to the noble Baroness, Lady Finlay of Llandaff, for introducing this timely debate on the availability of palliative care. I declare an interest in that I am associated with the All-Party Parliamentary Group on Motor Neurone Disease, and I am grateful to the Motor Neurone Disease Association and to all
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other interests for their briefings on this debate. I shall concentrate on palliative care as it affects motor neurone disease, but I am sure that much of what I say will have a more general application.
As a registered general nurse, I knew a little bit about motor neurone disease, but like, I suspect, all too many health professionals, I did not know very much. The full impact of this truly dreadful disease hit me in no uncertain terms when a very close friend and former colleague was diagnosed with it about four years ago, some two years after his symptoms first appeared. Sadly, he passed away some three weeks ago. If it is possible to get a half decent roll of the dice, given the awfulness of motor neurone disease, then my friend was perhaps fortunate on two counts. First, the bulbar symptoms, so often found, were almost entirely absentthe speech, swallowing and respiration were unaffectedalthough he was otherwise completely paralysed for a very long time.
Secondly, from the time of diagnosis my friend had tremendous support from all of the agencies, whether National Health Service, social services or the voluntary and charitable sector, as well as of course from his family. So I want to take this opportunity to pay tribute to all those agencies, including the Sutton and Merton multidisciplinary motor neurone disease team. I want to make special mention of St Raphael's Hospice, a small hospice in Cheam in Surrey, for its support for the day care centre for the regular and sometimes emergency admissions for respite, and for its care and devotion in my friend's final few weeks. It was significant that he always felt safe at St Raphael's Hospice. As a nurse, I know good care when I see it and all the staff at this hospice deserve the highest praise.
Much depends, if I may continue the metaphor, on the roll of the dice. In many parts of the country palliative care, such as I have just described, is not available. Many palliative care units do not provide day care or respite care for people with motor neurone disease. I understand that more hospices admit people with this disease in the terminal stages, but the number doing so is still less than 50 per cent. No doubt that is in part due to the higher proportion of staff time required to care for motor neurone disease patients and partly due to the fact that most NHS and voluntary sector palliative care units are geared to malignancies.
Given the origins of the hospice movement and the much higher incidence of malignancies, I can understand why that situation has developed. Can the Minister say anything this afternoon on whether there is any realistic prospect of work being done to ensure that access to palliative care, whether for respite or terminal care, is on the basis of clinical need and not of disease type?
It follows that, if hospices are to develop services on the basis of clinical need, there is a cost. Funding is a huge issue, not least for the charitable sector. As noble Lords will be aware, the National Health Service contribution to charity-run hospices fell by some 6 per cent between 1996 and 2002 to a figure of 29 per centsomething I have never been able to understand or rationalise.
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That funding has now increased to an average of 34 per cent as a result of the extra moneys made available through the NHS cancer plan. That is welcome, albeit it is still less than the 1996 average. Of course, it is not enough. Again, the emphasis appears to be on cancers rather than on overall clinical need.
I, too, was delighted at my party's manifesto pledge at the recent general election about the intention to double expenditure for palliative care. It would be helpful if the Minister could tell the House how much is presently spent on palliative care and whether the Government intend to double that figure in the lifetime of the present Parliament, or is it intended to gear additional expenditure in the timeframes in the National Health Service framework on long-term conditions?
While I welcome the new National Health Service framework and the fact that most of the 10 quality requirements there is reference to special needs for people's rapidly progressing conditions, my fear isand I hope the Minister can tell me that it is misplacedthat so much of the NHS appears to be aspirational and that local bodies set their own pace for change. Even the review process appears to be permissive. The document at page 8 says:
I accept that change for the better takes time, takes new funding and takes the necessary commitment, but the 10-year timeframe for implementation of the National Health Service framework is a timeframe much too far for persons with motor neurone disease. I again hope that the Minister can say emphasis might be given to an urgent plugging of the gaps in service provision for people with such rapidly progressing conditions.
I dread to contemplate the problems faced by people with these rapidly progressing neurological conditions, as well as for their families and informal carers where there is no access to a specialist team, where palliative care units do not provide for them for respite or terminal care and where healthcare professionals and local services are not geared to deal with motor neurone disease. I have said before in your Lordships' House and I will say it againit is hardly an acceptable situation in a developed country.
I understand that motor neurone disease kills more people in the UK than HIV/AIDS, but it does not register on the national consciousness in the same way, or indeed in any way at all. Moneys for research, education and care are minuscule by comparison. So much relies on the Motor Neurone Disease Association, which does a remarkable job.
I conclude by referring again to the work of St Raphael's Hospice. As with all charitable hospices, it relieves a substantial part of the burden on the National Health Service. St Raphael's provides education and training for GPs and district nurses to ensure seamless
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provision of care and generally provide a partnership in palliative care with their NHS colleagues. That includes work on motor neurone disease. Dr Marie Joseph, the medical director and consultant in palliative medicine at St Raphael's and the staff there take great pride in striving for clinical excellence. However, like other hospices, they need more money from government and NHS sources if they are to maintain that good work safely, never mind extend the provision.
The voluntary role is vitally important, but so too is the role of the state in providing an increase and equality of funding, as well as equality of access to all those who require palliative care irrespective of disease type. I look forward to hearing the contributions of other noble Lords in the debate, especially the maiden speech of the noble and learned Lord, Lord Lyell of Markyate. I again express my thanks to the noble Baroness, Lady Finlay of Llandaff, for securing this important debate.
Lord Cope of Berkeley: My Lords, I apologise for interrupting the debate but, as your Lordships know, my noble and learned friend Lord Lyell of Markyate was due to make his maiden speech at this point. He is on his way here on foot from some distance. We cannot find out exactly how far away he is because the mobile phone is not working either because of the problems. I hope that he will arrive before long and, perhaps with the indulgence of your Lordships, might speak a little later in the debate than had been intended. I am afraid that we will have to work that out when we get there.
Lord Joffe: My Lords, I, too, congratulate the noble Baroness, Lady Finlay, on securing the debate on this important subject. In Swindon, where I live, I first chaired a private hospital, then the Swindon Health Authority, and then the Swindon Acute Care Trust. Never once in all the countless meetings that I attended over 13 years did I ever hear palliative care mentioned, let alone discussed. It was generally known that there was hospice provision in Swindon, but it was assumed that that was the responsibility of the voluntary sector. Admittedly that was some years ago, but it demonstrates how neglected by the NHS this critical area of service provision was, at least in our area, and I suspect in other areas as well. Even today, palliative care often tends to be a relatively neglected area in the NHS.
Curiously, I owe my present knowledge of the outstanding work of the palliative care profession, in which I include the hospice movement, to my involvement with the Assisted Dying for the Terminally Ill Bill. In that regard, I should add that I am firmly in the camp of Professor Sir Graeme Catto, the chair of the General Medical Council. When he gave evidence to the Select Committee on that Bill, he saw no conflict between palliative care and physician-assisted dying.
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It also became clear from the evidence given to the Select Committee that palliative care is the solution for the overwhelming majority of terminally ill patients, although there are a relatively small but significant number of terminally ill patients who have strong personalities and a history of being in control of their lives, for whom palliative care is not the answer.
As has been stated many times, the United Kingdom rightly has the reputation of being a world leader in palliative care. There can be no doubt that in the centres of excellence, the skills and experience of our palliative care practitioners are outstanding. However, as has already been mentioned, to jump to the conclusion that because of that all is well in palliative care would be inaccurate. Provision of palliative care throughout England is uneven, and research has shown that of the 535,000 people who died in England in 2003 the majority had no access to specialist palliative care and little choice over their place of death.
Ninety-five per cent of admissions to hospice and specialist care in-patient units are for patients suffering from cancer, yet each year about 300,000 patients with life-threatening conditions other than cancer would benefit from palliative care but unfortunately are excluded from it, principally by reason of their diagnosis. As a result, many die a painful and undignified death, and some a terrible death.
The key issue leading to the current unsatisfactory situation is surely one of resource, both for provision of palliative care services and training and development. Bearing in mind that the NHS annual budget is in the order of £69 billion, it is surely unacceptable that, according to an estimate by Marie Curie Cancer Care, to which I am indebted for its briefing, of the £450 million spent annually on hospice and specialist care services in England, only 35 per cent is contributed by the NHS.
and Labour's recent election manifesto included a commitment to double its investment into palliative care services. It is clear, therefore, that the Government recognise the importance of palliative care, but the question arises as to what they are doing about it. They have announced the introduction of a £12 million investment over three years, and a further £50 million for three years ring-fenced for developing palliative care services. However, in the context of the total expenditure by the NHS and the need for universal high quality palliative care for the 550,000 people who die each year, these additional amounts, adding up to £162 million over three years, are derisory.
In the Select Committee on the Assisted Dying for the Terminally Ill Bill, Professor Richards, the highly regarded national cancer director at the Department of Health, was asked by the noble Baroness, Lady Finlay,
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how long it was going to take to have equity and access to specialist palliative care for all terminally ill patients. His response was:
"Although I think it is extremely welcome that the speciality is going to be growing over the next 10 years, and probably doubling in size, even then . . . I do not think that is possible. So I cannot give you a figure for when that will be the case".
Professor Richards was saying that he was unable to predict when quality palliative care services would be universally available throughout England. He appeared to be suggesting that 10 years may not be sufficient time, and that it might even be a lot longer. I suggest that this is unacceptable.
It follows that unless the Government take urgent and determined action, fully resourced, we will have to resign ourselves to a situation where, for the next 10 years at least, and probably for a great deal longer, many terminally ill patients will continue to have unacceptable deaths because appropriate palliative care is not available.
From the inquiries I have made, the NHS does not even seem to have completed an assessment of need for universal quality palliative care services, so it is unable to quantify what the need is and what resources are required. This is clearly the essential first step that needs to be taken with a sense of urgency, which is not evident at the moment. The statistics that are available seem to relate largely to hospice care, and it is important to recognise that such care is only a part of palliative care. A needs assessment should include all the services required by the 535,000 who die each year.
Bearing in mind the current vast deficit in palliative care services, there needs to be a large and urgent injection of additional resources into the palliative care sector to increase its availability to alland, in some cases, its quality. Large sums are also necessary for training and development of doctors, nurses and other palliative care professionals. Consideration should be given to making such training mandatory for all practitioners, and should possibly be taken into account when developing the accreditation requirements of doctors and nurses.
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