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Palliative Care

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 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 absent—the speech, swallowing and respiration were unaffected—although 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 cent—something I have never been able to understand or rationalise. 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 is—and I hope the Minister can tell me that it is misplaced—that 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:"““The Healthcare Commission and the Commission for Social Care Inspection may undertake schematic reviews of progress””." That is such an important area that I am sure the whole House would want to know that the commissions will plan joint reviews in this area in the not too distant future. 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 again—it 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 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.