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Palliative Care

My Lords, when it comes to the noble Baroness, Lady Finlay, opening a debate on the subject of palliative care, all I can say is, in the words of the old song, ““Nobody does it better””. To listen to her today is to be reminded—although we do not need reminding—how fortunate we are to have her as a Member of this House. The first point that many noble Lords have emphasised is that when we talk about palliative care, we are talking about more than just the relief of physical pain and more than just activity in hospices. The noble Baroness brought out well that palliative care in its fullest sense embraces a wide arena of activity in a wide range of settings. The multi-disciplinary team that delivers specialist advice and pain relief to a terminally ill patient is an indispensable part of good palliative care. But, equally, the daily business of administering symptom relief, comfort and advice to the patient is as much that of the general practitioner, the physiotherapist and the care-home worker—the professional people who look after the person day to day—as it is of anyone else. In fact, the person who comes to sweep and tidy the house of someone who is terminally ill is administering a kind of palliative care if by doing so they are easing the patient’s worries and making life generally more bearable. That is why the public debate about palliative care must recognise not only how care of the dying fits into mainstream health and social care but also that it behoves all professional people involved in the care of patients to understand the part that they can play in delivering what Sir Nigel Crisp has memorably called—it has been mentioned often today—a touchstone for success in modernising the NHS. The great thing about the NHS over the last decade or so is the way in which it has become a more patient-centred service. If ever there was a time when patient choice was pre-eminently important, it is surely at the end of life. People who say, somewhat loftily, that patients do not really want choice should just think of that. My noble friend Lord Newton rightly mentioned, as did the noble Lord, Lord Joffe, and a number of others, that this country has led the way in developing the whole ethos of hospice care, and that we have much to be proud of. That is true. Nevertheless, we should be under no illusions. We still have an enormous amount to do. The trouble is, as we have heard from many speakers but especially my noble and learned friend Lord Lyell of Markyate in his wonderful maiden speech, that access to palliative care is decidedly patchy. The inequity of access exists not just between different areas of the country, it is also a function of how old you are and what sort of illness you have. That is perhaps the most significant imbalance of all. The south of England, being relatively affluent, has witnessed the flowering of charitably-funded hospice care on a much wider scale than many socially-deprived areas, where the need for palliative care is at least as great, if not greater. Most people believe that hospices should not be state run. The noble and learned Lord, Lord Slynn of Hadley, is absolutely right. We want them to retain their predominantly charitable ethos and character. The fact remains, however, that, having contented ourselves with a laissez-faire approach to hospice provision, at least thus far, we have landed ourselves with a problem. Equally, the perceived white, middle-class, Christian underpinning of the hospice movement—I emphasize the word ““percieved””—has, I am sure, served to deter, however unwittingly, many members of the ethnic minority communities from trying to access hospice care. Often, there may not be enough information to enable some of them to be made aware of it. Possibly the most troubling imbalance in provision, however, is the imbalance between terminal cancer care and the care of other conditions. This point has been made many times this afternoon. Of those looked after in hospices, 95 per cent have cancer. The NICE guidelines on palliative care are cancer-oriented. Yet three-quarters of those who die in this country die from other things. Help the Hospices say that at least 300,000 people a year who need palliative care are not getting it. The percentage of people who die in hospital is higher than in many other EU countries. Like the noble Baroness, Lady Greengross, some of us have seen how bleak and impersonal dying in hospital can often be. We hear from respected bodies such as the British Lung Foundation, the Motor Neurone Disease Association and the Alzheimer’s Society how difficult it is to secure specialist palliative care for non-cancer patients. Part of the trouble is that, for chronic lung disease and dementia, the illness has an uncertain trajectory and can progress quite slowly. With motor neurone disease, the trajectory is fairly swift and certain. The kind of care a patient needs at the end of his life, however, can be extremely labour-intensive and complex. Many hospices, with the best will in the world, are simply not resourced to deliver more than a certain amount of that sort of care. Professor Mike Richards has suggested one way around this: to give those providing general palliative care a better understanding of the key skills that have been developed in specialist palliative care. That idea is fine but, of course, it is nothing like a complete answer if we really want patients to have choice. One barrier is money. In the NHS Cancer Plan, the Government promised an extra £50 million a year to fund specialist palliative care and, in 2003, a one-off £12   million payment to support the implementation of, among other things, the Gold Standards Framework and the Liverpool Care Pathway. All that is very welcome. As my noble friend Lord Cavendish told us, however, it is perfectly clear that the money has not been reaching the places it was meant for. It is being swallowed up by other programmes. The Government promised the Health Select Committee in another place a full report on the use of the £50 million, but, as far as I know, that report has not yet been produced. It will be interesting to see what it says. Meanwhile the attitude of Ministers appears to be that it is up to PCTs to decide on their own local priorities, and if that means not spending their full allocation on commissioning palliative care, then so be it. I venture to say to the Minister that for most of us that is not good enough. What are strategic health authorities doing? How are they performance-managing trusts on the way that specialist services are being commissioned and NICE guidance is, or is not, being followed? If the delivery of palliative care really is the touchstone for success in modernising the NHS, why is it not being recognised more vigorously? The Select Committee report graphically brought out the current weakness in the commissioning process, not least the disjointedness between trusts and social services. Many palliative care networks have no social care partners in them at all. So we really need to ask the Minister what steps are being taken to encourage and strengthen commissioning of these services, particularly joint commissioning by PCTs. With the advent of payment by results in two years’ time, the full cost of palliative care services currently funded from charitable sources will have to be funded from PCT budgets. But without the tariff being set, we still have no real idea of how much money PCTs will need to find, nor how much extra funding they will be given to cover it. These are issues of considerable concern to those working in the hospice movement, and it would be most helpful if the Minister could shed some light on them when he replies. To give more patients the opportunity to access palliative care, we can call for all the obvious things: funding, professional training, more respite care for carers, the Gold Standards Framework and so on. But there is one simple-sounding thing that could do much good and which I believe we would do well to bear in mind, and that is better communication. Better communication between doctor and patient will open up more channels of opportunity. Better communication between families and hospital staff   will open up better levels of understanding about the available options and the patient’s wishes. Communication between those providing specialist care and those providing more general care will spread good practice. Communication between health and social services will improve and speed up commissioning. Without proper communication, we cannot do justice to the core principle of the hospice movement, so aptly mentioned by my noble friend Lord Hayhoe, which is respect for the individual. Indeed, it is the skill of looking after a patient as an individual that marks out the good doctor, nurse or carer. That thought, as much as any other, should, I venture to suggest, impel the Government and the NHS as they carry the palliative care movement forward.