Palliative Care Bill [HL]

My Lords, I, too, congratulate the noble Baroness, Lady Finlay of Llandaff, on the Bill. I support it, and I wish it well. I declare an interest as one of the founders and now a patron of the North London Hospice and as former chief executive of the King’s Fund. I have a long-standing interest in palliative care, and I have written extensively about caring for dying people. I also want to congratulate the noble Baroness, Lady Finlay, not only on introducing this Bill so beautifully and ably today, but on her birthday. What a day to introduce her Bill. I, too, pay tribute to the very moving speech made by the noble Baroness, Lady Gardner of Parkes, who made it all too clear to us why we should support the Bill; as did the noble Baroness, Lady Masham of Ilton, in her account of her husband’s death; and as did the noble Baroness, Lady O’Neill of Bengarve, in her very moving account of her brother’s death, particularly about the lack of access to the drugs that would have made a difference if palliative care services had been universally available 365 days a year, 24/7. This Government are to be commended for the work that they have put into cancer services. The cancer plan and the work of Professor Mike Richards as the cancer tsar have been remarkable. We are, as many other noble Lords have mentioned, still awaiting further news on the exact timing of the end-of-life strategy on which Professor Richards and others are engaged, as we were a few weeks ago when we last debated palliative care. I hope that the Minister can tell us how he proposes, once he gets the strategy, to use it to ingrain support for palliative care into the National Health Service. We seem to have reached a watershed in provision of palliative care services. While children’s hospice services have rightly grown, they are still woefully under-funded, as the noble Lord, Lord Alton of Liverpool, made clear in his speech. There is now a review of palliative care services for children and a campaign seeking guaranteed funding for palliative care services for those children. While palliative care services for patients with cancer now have a greater reach, although by no means far enough, palliative care services for people with other conditions are distinctly hit and miss, as other noble Lords have mentioned. The Government published their summary of the progress of the NHS end-of-life care programme last March. And there has been progress, but, as many people will tell you, by no means enough. In nursing home care, it is by no means common to receive proper palliative care at all alongside the general nursing care that is ordinarily provided, although the best nursing homes provide an excellent service. Yet, in all too many care homes, the palliative care that would afford the human dignity for dying people of which the noble Lord, Lord Brennan, has rightly reminded us, is not available. The noble Baroness, Lady Greengross, was absolutely right to emphasise, in the name of the noble Baroness, Lady Murphy, who is not in her place today, the poor support for people with dementia, especially when they are dying. The Department of Health introduced its Introductory guide to end of life care in care homes last April, co-authored with the National Council for Palliative Care, and it set out what patients can expect, but, as yet, it is not enough. PCTs vary in how much they pay, and to whom, to provide palliative care services. This cannot be right. There is rarely a day when I do not receive a letter or an appeal asking me to support the campaign of one hospice or another around the country or one palliative care service or another somewhere. That must be true of all noble Lords here today. I also hear about palliative care teams threatened either with closure or, as is more common at the moment, asked to do more generic and less specialist work. So the noble Baroness, Lady Finlay, is right to try to force the Government to do more to support palliative care and to mainstream it throughout the NHS. We know that hospices are dearly loved. I was a speaker last week at the second Cecily Saunders memorial seminar at St Christopher’s Hospice in south-east London, which Dame Cecily founded. It was well expressed that there is huge appreciation, huge support and considerable irritation that so much of the money has to be raised voluntarily and that the National Health Service puts so little into palliative care services, comparatively speaking. In addition, the National Council for Palliative Care makes it clear that in real terms the value of the Government’s existing contribution to specialist palliative care services is being eroded, despite their 2005 manifesto pledge to double the investment. When it comes to beds being funded in hospices or the funding of services provided by hospices, full recovery cost is rare, so that providing services for the NHS means that the voluntary sector is out of pocket. That is outrageous—indeed, you might say that it is even worse than outrageous. In most cases, funding from the NHS for a percentage of beds in a hospice is on a year-by-year basis, often decided after the financial year has begun. There is no good reason why those contracts could not be drawn up with at least three years to run, and no good reason why government should not issue the strongest of guidance to the service, however strapped for cash it is, that this approach to the hospices is bound to cause chaos and resentment, and fits singularly badly with a government approach that wants to increase hospice an palliative care services. The present figures show a gap of some £150 million to £200 million between what hospices spend on NHS services and what the NHS actually pays for—other noble Lords have drawn attention to that—and the gap is widening. It is disgraceful. The noble Lord, Lord Patten, was right to draw attention to the plight of the Pembridge Unit, and I am sure that many of us have received letters from that unit or have seen other people lobbying on its behalf. Its funding shortfall is a disgrace—and, of course, it was originally a National Health Service service. The noble Viscount, Lord Bridgeman, is right to point out the difficulty that St John’s Hospice, even with the support that it has from the rest of the charity, is experiencing. From all sides of this Chamber, we could go on and on raising individual hospices or individual services that are having some kind of difficulty. Meanwhile, 95 per cent of those who access palliative care services have cancer, although only 25 per cent of people die from cancer. There are gross inequalities in whether you can access palliative care services if you do not have cancer. It depends almost entirely on where you live. My parents lived in north Camden and both were fortunate enough to receive superb palliative care at the end of their lives, although neither suffered from cancer. I echo the words of the right reverend Prelate the Bishop of St Albans about spiritual care. My mother was a refugee from Nazi Germany. She was not a religious woman; having a rabbi as a daughter was a source of deep disquiet to her. However, at the very end of her life, she kept talking about going home. She did not mean going home to meet her maker; she meant going home to Germany. It was the combination of a specialist palliative care nurse and a district nurse, with their training in spiritual and psychosocial support, who were able to work out what she was saying, precisely because they had the skills and broad ability to reflect. Those are not widely available if you have not had that training and you are not sufficiently clued-up. Had my parents lived across the border in Islington, those services would not have been available for them. Had they lived across the border the other side, in Westminster, those services would have been partially available—very possibly at St John’s Hospice. This is not about rich or poor—some poorer areas have far better palliative care services than wealthy ones; nor is it about whose need is greatest. When we look at the spread of hospice and palliative care services, it is largely about history. It is about where services happen to grow up and where voluntary groups started them off. There simply is not enough provision—particularly not for people with conditions other than cancer. People’s own preferences for where they want to die are largely going unmet. The noble Lord, Lord MacKenzie of Culkein, was right to draw our attention to the very different treatment of two friends dying from motor neurone disease. These differences are deeply disturbing. We keep hearing of this. In one place it is good and in another it is bad; we must be able to do better than that. I want to take a more general look at the palliative care services that are provided by primary care services. Although 60 per cent of acute care trusts are now using the Liverpool care pathway, only 28 per cent of GP practices are doing so. Coverage for all patients rather than cancer patients alone ranges from 50 per cent for GP practices to 97 per cent for community hospitals. Far too often, patients do not get their preferred place of care, despite the preferred place of care advanced planning tool that patients hold for themselves and through which they can discuss their thoughts and choices with healthcare staff. There is a real variation here. If you talk to people who run services, they will tell you that they want different things. In a study conducted by the King’s Fund a couple of years ago, people prioritised different services that they wanted to make the service work better. GPs prioritised specialist services such as specialist nurses and in-patient beds. District nurses prioritised daytime district nursing. Marie Curie nurses wanted night cover—Marie Curie nurses are highly valued but not always available. District nurses also wanted specialist assessment and in-patient beds. Like GPs, they rated out-of-hours GP cover as a lower priority but, being district nurses, they highlighted night district nursing services as a high priority. I could go on. This is a complex system; it is not easy. Even if the Bill gets full support and goes forward, this still is not easy to do. Palliative care services cannot do it alone. This Bill is about palliative care, but I believe that we need even more than that. In a sense, the Government could issue guidance to NHS bodies if they really wish to make clear their determination to improve services for dying people, but they will need to do so with a whole-systems approach as well as an approach involving specialist palliative care. That means a variety of things. It means a commitment to education in this area for all medical, nursing and health students, and, as the noble Lord, Lord Colwyn, has already mentioned, the Bill has rightly been welcomed by the GMC because it is about to review the standards expected of medical students and can ensure that the themes within the Bill are included in that review. The noble Lord, Lord Cavendish of Furness, was right to highlight the vacancies that exist within palliative care services, and there is a huge need here for further training. The possibility of education provision is included under regulations in the noble Baroness’s Bill at Clause 5(2)(e), but I argue that everyone needs this training. Irrespective of whether students expect to look after people with terminal illness, this should be a basic part of healthcare training. Mortality covers 100 per cent of the population: we all die. In their training, all students deal with pregnancy, child health, some emergency procedures and infectious diseases, but they do not yet cover the entire population, while death does. It is not enough to require training for those who care for terminally ill people at any one time; it should be a given. And it should fit with other training, such as the medical ethics training which all students now get and which includes the principle of autonomy. My noble friend Lord Lester of Herne Hill raised that in his speech and it led to a slight altercation between him and the noble Lord, Lord Alton, but that is a debate for another time. Secondly, there should be a huge dependence on primary care, and here I believe that the Government could make a big difference in their guidance to PCTs. Most people will have only limited access to specialist palliative care and may not need more, but those who care for them will need access to specialists, and GPs and district nurses need to feel well supported and well equipped to handle the deaths of the people they care for, especially those who are dying at home. Lastly, as well as the Minister telling us how he is going to carry forward the principles contained in the Bill and how he is going to use all the techniques that he and his colleagues have at their disposal of urging, nagging and sending guidance to the service, I urge him to tell us how he will work with others on a cross-departmental strategy involving stakeholder organisations outside government, many of which support the Bill, to look at how we can better support people in coping with death, dying and loss. This matter goes broader than what is contained in the noble Baroness’s excellent Bill. As others have said, I believe that it means public education, bereavement support, support for dying at home, respite care, extra benefits for carers, education for non-healthcare staff, such as social services staff and benefits advisers, and links between palliative care services and the prisons and secure mental health hospitals, because people die there too. My noble friend Lord Carlile was right to emphasise that we expect to have a good birth and a good death. There is a duty to care, and we need concerted action—the noble Baroness, Lady Finlay, is right about that. I hope that the Minister will be able to offer us support for the Bill and the principles behind it. We now need concerted action.