Palliative Care Bill [HL]

My Lords, I warmly congratulate the noble Baroness, Lady Finlay of Llandaff, on introducing this very important Bill to the House. I declare an interest first as a nurse, and secondly as a member of the All-Party Parliamentary Group on Motor Neurone Disease. In the days when I practised as a nurse, my specialty was operating theatres and trauma intensive care. I was fortunate during my general nurse training to work with, and learn from, a very talented charge nurse and an equally excellent staff nurse, who taught young students a great deal that was outside the then syllabus of training and which included much about social and spiritual needs in care as well as the basic essentials of nursing care for the terminally ill. One never forgets a good teacher or what they teach. In recent times, what has become known as palliative care has been reinforced for me by the very different treatment of two people I have known who lived with and then died from motor neurone disease. One had excellent support and care. For the other, the experience was a lesson in how awful and damaging poor communications within and between services and poor support can be both to the patient and to the family. I made reference to these cases in the recent Question for Short Debate on 31 January at col. 312. For those reasons I am delighted to support the Bill. I hope that we are pushing at open doors when asking the Government to give it a favourable wind in its progress through this House and another place. It has been the policy of both Conservative and Labour Governments for something like 20 years that palliative care should become a mainstream service. Although it is only right to acknowledge that some progress has been made, we are still a very long way from that happy situation. We are a long way from systematic planning and funding with the result that access to palliative care is more miss than hit. I think that it is correct to say that the majority of people who would benefit from such care are not getting it. At present, almost 80 per cent of adult in-patient palliative care beds are provided by charitable hospices. I welcome the promise in my party’s most recent election manifesto to, "““double the investment going into palliative care””." Obviously, less than half way through a Parliament, we have not yet met that commitment, but what now concerns me is that the gap between what is spent by hospices on NHS services and the contribution from the NHS is clearly widening. In a recent survey, the National Council for Palliative Care reported that 35 per cent of respondents have lost resources in the past year. The gap in funding for NHS services through hospices is now coming from local fundraising—charity shops, donations and legacies. So I believe it is not only timely but right that, in a rich developed country, we focus much more on end-of-life care. It is not something that a comprehensive National Health Service can or should stand aside from. I take MND as an example. We know that it is a ghastly and usually rapidly progressing fatal illness which can affect any of us at any time. Most people with the disease become completely paralysed and cannot talk or feed themselves, although the intellect is almost always completely unaffected. Three people die from motor neurone disease every day, but on average only one of them will have been referred to specialist palliative care. Such a state of affairs, as well as geographical gaps in the availability of specialist provision and in the quality of that provision, cannot be acceptable in the 21st century. As the noble Baroness, Lady Finlay, said, an end-of-life strategy is to be published later this year. I do not know what the strategy will suggest but it will be surprising if it does not support choice for patients, regardless of diagnosis, about where they live and die, and provide the necessary care packages to make that possible. But to be blunt, I hope that the prospect of that strategy will not be used as a reason for not giving the Bill a fair wind. If enacted, the Bill will complement whatever comes out of the new strategy and ensure that the concept of palliative care goes beyond the definition set out by NICE in 2004. While that definition is appropriate to all care, palliative care relates specifically to patients with malignancies. Unless there is a duty to provide palliative care for all who need it, we will continue to have patchy provision or no provision at all. When there are stresses on funding, as in the present climate, the focus will not be on end-of-life care unless an absolute requirement or duty is placed on health care commissioners to provide palliative care. I welcome every one of the regulations set out in the Bill although I would like to see more emphasis in Clause 5(2)(f) on improving g co-operation within the NHS and social services as well as between those organisations and the voluntary sector. It was, among other things, the complete failure of communication within local health services and between them and social services that led to the most appalling catalogue of failure that I referred to earlier. There also needs to be a requirement to ensure the availability of specialist support which goes beyond providing care, treatment and psychological and spiritual support where there are complex care requirements such as in motor neurone disease. Unless specialist support is available, gaps in care will continue. It is important to ensure that palliative care professionals form part of any multidisciplinary team caring for people with conditions such as motor neurone disease. I again most warmly congratulate the noble Baroness, Lady Finlay, and am delighted to support this important Bill. I look forward to following its progress in this House and another place.