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Palliative Care

My Lords, I am grateful to the noble Baroness, Lady Finlay, for raising this very important topic for discussion today, and to other noble Lords for their contributions. The noble Baroness has made a major contribution to the field of palliative care through her work as a consultant in palliative care at Velindre NHS trust and at the Holme Towers Marie Curie Centre, which she established. She is an acknowledged world authority on the care of terminally ill cancer patients and is well qualified to lead today’s debate, as she demonstrated. On behalf of the Government, I congratulate her on her public conversion to targets today. I also pay tribute to the work of Dame Cicely Saunders, who has done so much in this area. She started her iconic hospice very near where I live today. I am sure we send her our best wishes. I also congratulate the noble and learned Lord, Lord Lyell, on his well informed and humane speech and on the real commitment he showed in reaching this debate today. As a health Minister, I commend him for the commitment to exercise that he has shown. I recognise that the diagnosis and treatment of a chronic and serious disease can have a major impact on the quality of patients’ lives and those of their families and carers, as noble Lords have described. Palliative care seeks to address those needs, and we want it to be available to as many as need it, irrespective of clinical condition or their cultural backgrounds. I had some direct experience of watching someone die very slowly from motor neurone disease, and I realise how much they need that support and care in those final days. In seeking to advance palliative care, we are seeking to advance a holistic care by multi-professional teams, for people, their families, and carers, where the illness may no longer be curable. It should enable patients to achieve the best possible quality of life during the final stages of their illness. It should address all the needs of those patients such as symptom control, pain relief and, importantly, emotional, psycho-social and spiritual needs. That support and care should be provided to patients and to their families, friends and carers both during the patient’s illness and into bereavement. That is our aspiration. As a Government, we fully recognise the importance of providing effective and efficient palliative and specialist palliative care service and that the advances provided to many people in recent years must be extended more widely to more people. Those services need to be available in the community, in hospitals, in care homes and in hospices. The principles of palliative care should apply equally across all conditions and in all settings. Those points were well made by noble Lords in the debate, and we agree fully with them. Ensuring that patients have access to the palliative care services that they need presents a number of challenges, as noble Lords have recognised and we recognise as well as a Government. I shall briefly set out the Government’s strategy for addressing those challenges and building on the progress that we have made over recent years. I am grateful to the noble Baroness, Lady Finlay, and other noble Lords for the recognition that progress has been made. I shall try to be as specific as I can in responding to the issues raised in the debate. First, much of the specialised care that people have described today needs to be provided by health and other professionals who specialise in palliative care, such as those working in hospital specialist palliative care teams or in hospices. However, in most instances and for most patients, it is almost inevitable that palliative care will be delivered by people who are not specialist palliative care staff. That includes a range of professionals and carers such as GPs, district nurses and ward staff. We have to improve the palliative care skills and awareness of a wider group of health professionals so that all are able to provide palliative care as and when required. That is important and it is the way in which we want to progress. It will not only widen the number of staff able to provide such care but also allow people to exercise choice in where they are cared for and where they die. We know that most people say that they would prefer to be cared for and die at home if they had a terminal illness rather than go into a hospice or hospital. However, the reality is that only 20 per cent of all deaths occur in a person’s own home, with a further 20 per cent dying in care homes, which of course for many older people is their own home. Providing higher quality end-of-life care to all who need it, where they need it, will be a real marker of success for the NHS. We are trying to bring choice to the forefront of healthcare in this country, and choice in palliative care and end-of-life care are key areas that we are working on and, as has been acknowledged today, making some progress on. For example, between 2001 and 2004 we invested £6   million to improve the training of district nurses in the principles and practices of palliative care. That funding has enabled participation by over 10,000 nurses, which is one in four district nurses, together with many other healthcare professionals, in continuing their professional development programme. The programme’s aim was to give primary healthcare teams the confidence to support patients with advanced cancer and their carers, to help patients to stay at home for as long as possible during their illness, and to die there if they wish and if circumstances permit. Secondly, the White Paper, Building on the Best:   Choice, Responsiveness and Equity in the NHS, highlighted the importance of choices at the end of life and emphasised the need to enable patients to make choices about where they would prefer to live and die. Following on from that, we have instigated our end-of-life care programme. Working in partnership—a word rightly used much today—with organisations like Marie Curie Cancer Care and Macmillan Cancer Relief, the programme will invest £12 million over three years to provide training for staff working in general practice, care homes and hospital wards. This means that all adult patients nearing the end of life, regardless of their diagnosis, will have access to high-quality palliative care and will be able to choose, if they wish, to die at home. The initiative will specifically support the wider rolling out of tried and tested tools, including the gold standards framework to which a number of noble Lords referred, and the Liverpool Care Pathway. These tools were recommended in the NICE supportive and palliative care guidance and endorsed by the Health Select Committee. I will give a few examples of how the NHS is rolling out new end-of-life care programmes. In Manchester, they are addressing the requirements of people with mental health needs who are approaching the end of life. In West London, the focus includes working with people with learning difficulties and those in prison; while in Dorset and Somerset, they are strengthening out-of-hours emergency care services. One particular priority, addressed by all areas, is rolling out the capacity of care homes to improve here, in order to reduce the number of inappropriate admissions to hospital in the last week of life. We have also made progress on other aspects of palliative and specialist palliative care. We believe that a successful, mature and sustainable partnership is essential between government, the NHS and the voluntary sector at both national and local level; one that values the contributions of all, while being critical and integral to good quality, responsive, person-centred health and social services. Noble Lords have rightly mentioned the contribution that social care has to make in this area. I acknowledge that the voluntary sector has led the way in developing palliative care services in the United Kingdom. Indeed, it continues to provide over half of palliative care provision. Organisations such as local hospices—a number of which have been mentioned today—Marie Curie Cancer Care, Macmillan Cancer Relief and Sue Ryder Care have made an invaluable contribution in providing care. They have guided and implemented government policies and instigated innovative and exciting developments. I pay tribute to them all, and to the voluntary sector’s particular overall contribution in this area. I know, as former chairman of the National Council for Voluntary Organisations, that the independence of the sector is much valued, and that it will defend that independence jealously. We will work away at strengthening further the partnership between the Government, the NHS and the voluntary sector. It means addressing that sector’s particular concerns, including those of funding. I turn now to the issue of funding in more detail. In 2000, it was estimated that the voluntary sector in England was contributing £170 million per year to specialist palliative care services—hospices, home care and hospital services—while the NHS was contributing £130 million. The Government therefore pledged, in the NHS Cancer Plan, to invest an additional £50 million per annum in specialist palliative care services for adults. This was to help to tackle the inequalities in access to services, and to enable the NHS to make a realistic contribution to the costs that hospices incur in providing agreed levels of service. To support this commitment, Ministers set up the   national partnership group for palliative care. This has a key membership from the NHS, local, voluntary and NHS hospices, major national charities and the Department of Health. Its role is to develop a new approach to palliative care funding and planning. For the most part, this has provided an excellent model of partnership working at both national and local level—although I notice that the noble Lord, Lord Cavendish, has been less than enthused about the relationship between his local hospice and the PCT. No doubt, the PCT and the strategic health authority will study his remarks carefully. I will certainly ensure that their attention is drawn to the terms of this debate. The pledge in the NHS cancer plan has been delivered. The extra money has been allocated and it is for the most part being used effectively to improve services for patients throughout England. I hope that noble Lords will recognise that we are investing considerable extra resources in the NHS. Those resources have doubled since 1997 and are now increasing to more than £92 billion in 2007–08. We are working with a very large organisation to which we have to devolve priorities. We have to move away from any attempt at command and control from Richmond House. It is inevitable, therefore, that primary care trusts are responsible for commissioning and funding local services. They have to be able to use these resources to deliver on both national and local priorities, including palliative care. In today’s NHS, it is very much down to people at local level to use the extra money available for local priorities and to ensure that services such as palliative care are commissioned and provided. We rely on local communities to make their voices heard in these areas. In future, Payment by Results and the national tariff for the various healthcare resource groups will radically change the arrangements for funding providers of care. This will ultimately benefit patients as providers are rewarded for their efficiency and quality, and patients can make decisions that do not revolve around price. Work is under way to develop a new version of the healthcare resource groups and national tariffs for a variety of services, including specialist palliative care.   This work is being supported by an expert working group, the membership of which includes representatives of both the NHS and the voluntary sector. The national tariff, when introduced for specialist palliative care, could provide the basis for the full cost recovery which was recommended by the Treasury’s Cross Cutting Review of the Voluntary and Community Sector in Service Delivery. That review stated that,"““funders should recognise that it is legitimate for voluntary and community sector providers to include the relevant element of overheads in their cost estimates for providing a given service under service agreement or contract””." The national tariff will ensure that, in future, all providers of services to NHS patients, across all sectors, are paid on a transparent and fair basis for the services that meet patients’ needs. The emphasis will therefore be on effective negotiation between contracting partners to deliver the best in patient care. The noble Earl, Lord Howe, made an eloquent point on commissioning. The Government are committed to strengthening commissioning in this area. Only this morning, I spoke to a conference about strengthening and developing practice-based commissioning, and improving strategic commissioning in this country. It is concomitant with moving forward on Payment by Results that we strengthen commissioning in this country, not only for palliative care, but for a range of other services. The noble Baroness, Lady Finlay, raised the subject of delayed discharges legislation. I assure her that it has always been our intention to extend the delayed discharges legislation to other patient settings following consideration of the benefits for each patient group. Another area in which we have made progress is addressing inequalities in accessing palliative care service provision, although I freely admit, as noble Lords have said today, that we still have a considerable way to travel here. The historic development of hospice and palliative care services has often led to a concentration of hospices in more affluent areas and a shortage of services in areas of social deprivation in particular, as the noble Earl, Lord Howe, made very clear. There is no disagreement between us on that. The greatest inequity, however, relates to the comparative lack of palliative care services for patients with advanced incurable illnesses other than cancer, as other noble Lords have said. The sustained increase in funding which we are providing for the NHS, including the higher levels of funding for the 88 spearhead PCTs in deprived areas, will enable the NHS to continue to deliver improved services and to tackle inequalities. I expect palliative care in these areas to benefit from the extra resources that are being focused on it. Let me reassure your Lordships, particularly the noble Lord, Lord Patel, that there are a number of examples of good practice where specialist palliative care service providers are working closely with minority ethnic communities to make their services more culturally sensitive. All service providers in today’s culturally diverse Britain will need to show their services reflecting the ethnicity, faith and other features of the local populations they serve. Building on the Best specifically commits the Department of Health to tackle inequalities in palliative care provision. This is the objective of our end-of-life care programme and was one of the key objectives in the £50 million programme we have already discussed. Your Lordships will also be aware that we have published a number of national service frameworks. All of these, particularly those for children, for renal services, for long-term conditions and for older people, stress the importance of palliative care and end of life care and the importance of cultural diversity. Many of the initiatives we have taken in the field of cancer, including the training of district nurses that I have mentioned and the supportive and palliative care guidance published by NICE, will be of benefit to patients with other conditions as well as to those with cancer. A number of noble Lords mentioned palliative care for children. I do not want to dwell on that too long, other than to say that we recognise the need to make progress in this area. The National Service Framework for Children has set standards for local authorities and others to ensure that children’s palliative care services provide high-quality and sensitive support. We are not complacent about this progress and we know that more needs to be done. A number of noble Lords have reminded us of our general election manifesto commitment and we are working closely with all who impact on its delivery. A great deal of work will be taken forward in the coming weeks. I pray in aid that since the election we have been in office for only two months. We are entitled to a little time to work in partnership with others in developing the arrangements for implementation. I know we are a government in a hurry and a government that make progress on their commitments, but we need to work with people such as Mike Richards, with the voluntary sector and with Marie Curie Cancer Care to develop the way forward on that commitment. We will honour the commitment and take matters forward. As many noble Lords will know, the Government have announced that they will be holding a major public engagement exercise on consulting the public about services outside hospital. This will enable us to address some of the end of life concerns that people have. I thank noble Lords for their contributions to the debate. I end by quoting the excellent article in the Guardian today by Tom Hughes-Hallet, the chief executive of Marie Curie Cancer Care. He said:"““Surely it is society’s responsibility to ensure that everyone can die with dignity. That means they should receive the proper care and support they deserve””." That is our mission in this area.