HC Deb 04 February 1993 vol 218 cc579-86

Motion made, and Question proposed, That this House do now adjourn.—[Mr. Andrew Mitchell.]

10 pm

Mrs. Marion Roe (Broxbourne)

I should first like to place on record my gratitude to Madam Speaker for selecting this important subject for the Adjournment debate this evening—[interruption]

Madam Deputy Speaker (Dame Janet Fookes)

Order. I should be grateful if hon. Members would leave quietly and allow the hon. Lady to have her Adjournment debate.

Mrs. Roe

I am honoured, Madam Deputy Speaker, to be the Chairman of the all-party hospice group—[Interruption.]

Madam Deputy Speaker

Order. There is still far too much noise.

Mrs. Roe

I am honoured to be the Chairman of the all-party hospice group, and I much appreciate having this opportunity to speak of the highly valued and dedicated work of the hospice movement. Hospice is a philosophy, not a building. Hospice care covers in-patient care, day centres and home care. It is concerned with the relief of symptoms, such as pain, and with meeting the psychological, social and spiritual needs of people who are terminally ill.

The modern hospice movement started in 1967 with the founding of St. Christopher's in Sydenham by Dame Cicely Saunders. The British hospice movement has provided a model for countries overseas, and provides a gold standard for care of the dying in the United Kingdom.

Important though this work is, hospice care is about more than the care of the dying. Hospices offer a commitment to enhancing the quality of life that remains to terminally ill patients. It is about preparing and supporting in a very positive way not just the patients but also relatives and dependants. It is about excellence in nursing care, and I pay tribute to the outstanding work and devotion so often displayed by those nursing the terminally ill.

The experience given to the hospice movement means that much has been learned and understood about the control of symptoms, so that hospice care now offers a highly respected skill in pain management, often by a variety of different means. Moreover, the hospice movement provides desperately needed respite care facilities. The relief and comfort that this brings to the cared for and their carers cannot be overestimated.

Let me tell the House about one woman, a divorced teacher of 54 living with two of her five children and a grandson of five. She had an operation for cancer of the colon at the end of 1991 and was well for six months, but the cancer spread to her liver. She started chemotherapy, which made her feel very unwell. After four courses of this treatment, she had to arrange for her grandson to be fostered.

She attempted to commit suicide by taking an overdose of drugs on the day before she was due to have her next course of treatment. After treatment for the overdose, she was seen by psychiatrists, who felt that she was very depressed, but, because of her physical symptoms, they realised that a bed in a psychiatric hospital was not the place for her. She was assessed by the hospice doctor and was able to talk about her desperation and how she felt cheated at having been rescued. Given the opportunity, she would attempt suicide again.

She was transferred to the hospice, and good symptom control lessened the pain and nausea, and, with support from the hospice staff and with the anti-depressant tablets, she began to improve. She began to enjoy the various activities that the hospice offered, and, after a three-week stay, was well enough to visit her newly arrived twin granddaughters.

A week later, that lady was discharged and has been supported ever since by the day centre, where minor changes in her medicines have kept her symptoms under control, despite the fact that the disease is progressing. Because of her contact with the hospice, she is able to accept the situation and is making the most of her time with her grandson, who remains with foster parents. This is a true story of a woman helped by a hospice offering in-patient, day centre and home care. It shows how good symptom control can improve the quality of life of someone psychologically in despair.

Take also the case of the happily married woman of 58, whose family was grown up. Although she was confined to bed because of pain and was being visited by a nurse from the hospice, she felt unable to accept the idea of going into a hospice at all. As her pain increased and it became obvious that she was dying, she agreed to go into a hospice as an in-patient. It was found there that her hip was fractured. This partly explained her terrible pain. After an operation on her hip, she returned to the hospice. An epidural injection abolished the pain in her hip, and the pain in the abdomen was controlled with pain-killing medicines. For the first time in three months, she felt comfortable, free of pain and in peace. She died peacefully, with her family present, in the hospice a week later.

Hospice provision has grown rapidly in the last 25 years. Twenty-five years ago, there were only 15 voluntary hospices, compared to 199 now. There are now nearly 3,000 in-patient hospice beds—most of them in voluntary hospices, but about 500 in national health service units. In addition, there are 400 home-care teams, 150 attached to hospice in-patient units, and 200 day hospices. Some teams operate independently, and some are attached to hospitals.

This represents an enormous investment by local communities, who pioneered, raised funds and provided the essential voluntary help that enabled voluntary hospices to grow so rapidly. National bodies like Marie Curie Cancer Care, the Sue Ryder Foundation, the Cancer Relief Macmillan Fund and Help the Hospices all play a major role in fund-raising, direct provision and education.

I recognise and acknowledge the importance of the Government ring-fenced hospice grant in the development of voluntary hospices. The importance of securing funding was recognised by the Government in 1990, when the first hospice grant was made. This helped the movement to plan ahead. Now, in 1993, as my hon. Friend the Minister for Health announced to the House in the debate on 26 January, £43 million of extra money is being made available to help the hospice movement this year. A ring-fenced amount of £32.3 million is allocated to the regions for distribution via district health authorities; there is a welcome £5.6 million extension of the drug scheme to give voluntary hospices access to drugs supplied by health authorities; and there is a further £5 million to help hospices with the changes in income support and community care. I welcome this generous treatment of the voluntary hospice movement, but there remain some important questions that I should like to raise with the Minister.

First, Government policy is to match with statutory funds the value of voluntary contributions to the revenue costs of planned and agreed services. As ring-fenced money is to end in 1994, and as contracting with health authorities is to become the standard route for financial help to the voluntary hospice movement, I seek from the Minister information on the mechanism to be adopted to ensure that 50:50 funding is achieved.

Secondly, one in six hospice beds are in national health service units. I seek from the Minister reassurance that these services will be adequately funded in the future. Can the Minister give an assurance that purchasers in health authorities will be urged to maintain—indeed, increase—the funding of NHS hospice services?

Thirdly, for many hospices, income support payments provide a substantial part of revenue. The Department of Social Security is passing to the Department of Health £5 million to replace income support. How is that money to be distributed to ensure that the hospices, whose budgets depend on that money, will be fairly compensated so that their services are not adversely affected?

Fourthly, Government support of free drugs and dressings to hospice patients is welcome. However, because of the very advanced stages of cancer that hospices treat, many of the dressings desperately needed by patients nearing the end of their life are not available on the NHS. Will my hon. Friend the Minister add dressings, such as charcoal dressings and the larger sizes of available dressings such Jelonet and Actisorb, to the drug tariff, so that those vital dressings may become freely available to hospice patients and to people nursed at home?

Fifthly, to ensure that hospices and specialist palliative care services are given the priority that people who are terminally ill merit, will my hon. Friend ensure that regional health authorities are asked to consider those as priority services and that their commitment is regularly reviewed and monitored?

The hospice movement appreciates the Government's support, but the Government need to be reminded that the movement is left to raise over half its funds itself—amounting to £50 million annually. In a recession which is affecting individual and corporate charitable donations, as we are all aware, that is increasingly difficult—a difficulty made worse in some districts where there are fund-raising campaigns by NHS provider units and trusts.

The last question for which I seek an answer involves children's hospices. There are five children's hospices in the United Kingdom, with more planned. They currently rely virtually totally on voluntary fund-raising. Those children's hospices need a stable financial arrangement similar to that introduced by the Government for adult hospices. I seek guidance on the Government's plans to ensure that that happens and that all children with a life-threatening disease have access to a recognised children's hospice for both respite and terminal care.

The voluntary hospice movement is getting ready for the new culture in the NHS. It now speaks a coherent voice through the newly formed National Council for Hospice and Specialist Palliative Care Services, which has appreciated the warm support given it by Ministers. The council, supported financially by British Gas, is active in ensuring that those involved in the hospice movement as volunteers and staff are fully informed of new developments in the health and social services. Council publications include "Guidelines on Contracting" and a paper on introducing quality standards and audit to hospices. The council has just published Care in the Community for People who are Terminally Ill: Guidelines for Health Authorities and Social Services Department", which is being circulated to social services departments and health authorities.

I draw attention to those guidelines because I know that many in the hospice world are concerned that the small group of people in the community who are terminally ill could be overlooked when community care reforms are introduced in April.

I congratulate the Government on inviting the Standing Medical Advisory Committee and the Standing Nursing and Midwifery Advisory Committee to examine hospice and palliative care services. I welcome their report "The Principles and Provision of Palliative Care," and seek an assurance from the Minister that before the recommendations in that report are accepted by Government, the National Council for Hospice and Specialist Palliative Care Services, which is representative of all the professional groups involved in hospice and palliative care throughout England, Wales and Northern Ireland, will be consulted.

Lastly, I shall remind the House once more why the hospice movement is such a valuable and important asset to the United Kingdom. A young man developed a brain tumour at 36. He and his wife had two children. At 40, he became weaker, had difficulty in speaking and was unable to work. Chemotherapy stabilised his condition for the next three years, but then he began to deteriorate. Modifications to the house were made, until his wife, a tiny woman looking after a large husband at home, installed a hoist to get him into bed and into the wheelchair which was necessary to get him to a commode. He became unable to feed or dress himself.

The hospice first admitted him for a three-week period to give the wife some time to relax with her family. She visited him in the hospice every day. Over the next four years, she looked after her husband, but with increasing admissions for respite care. At first it was every three months, and then, towards the end of his life, for two weeks out of every six. By this time, her husband was unable to communicate or swallow. He spent his last few weeks in the hospice, where he died peacefully and in comfort.

The hospice movement cares for families, including bereavement care, as well as caring for dying patients. The year before her husband's death, this devoted wife and mother lost one of their two children in a road accident. The skilled support of the hospice enabled her to cope with this bereavement and a year after her husband's death she continues to visit the hospice for meetings for bereaved relatives as she begins to rebuild a new life with her son.

Without the voluntary hospice movement and the devoted staff and volunteers, whose work includes voluntary bereavement counselling, acting as trustees, flower arranging and all-important fund raising, this wonderful movement of which Britain should be so proud could not continue. Government support is greatly appreciated, and the Government's continued commitment by giving firm answers to the questions I have raised is essential.

10.16 pm
The Parliamentary Under-Secretary of State for Health (Mr. Tim Yeo)

I congratulate my hon. Friend the Member for Broxbourne (Mrs. Roe) on winning the opportunity of the debate and on using it to describe with such eloquence the enormous benefit that the hospice movement brings to sick and dying people.

My hon. Friend was too modest in underplaying her own considerable role, not least through her involvement with the parliamentary all-party group on hospices as secretary and now as chairman. Despite her important and demanding role as chairman of the Select Committee on Health, she has continued to work to raise the profile of hospices in the House, not least through her recent initiative to encourage hon. Members to visit hospices and to see the good work that they do; I hope that there is a good response.

I echo the tribute paid to the excellence of the voluntary hospices since St. Christopher's hospice first blazed the trail 25 years ago. The enormous progress which has been made in the development of palliative care since then is a tribute to the dedication, hard work and love of thousands of people who have raised funds and devoted their time to help others. Their efforts have brought to dying people and their families support, peace and, above all, improvement in the quality of their lives.

The Government's determination to drive forward health improvements is clearly set down in our White Paper, "The Health of the Nation". Our policy is to add years to life and, no less importantly, to add life to years. However, the emphasis on the improved quality of life is not new; it is the path down which the hospice movement has been leading us for years.

As modern medicine has progressed, some doctors and nurses have come to see death as a failure, but death itself is not a failure; the tragedy comes when death is premature, unnecessary, painful, hidden away and, perhaps worst of all, lonely. Nowadays, death seems something almost to be ashamed of as well as feared, but the work of the hospice movement is doing much to change that by relieving pain and helping people to approach death more calmly. The voluntary hospice movement has led the way. The principles of good palliative care developed by the hospice movement—patient-centred, responsive to need, holistic, supporting the family—are spreading into the rest of health care provision and I am delighted to see that happening.

Three years ago the then Chief Medical Officer said in his annual report:

a major challenge for the 1990s is to extend the principles of good palliative care to the treatment of all patients with a terminal illness, regardless of their underlying diagnosis, and to measure the effectiveness of care". In all this, the voluntary sector have led the way, with the national health service following closely behind. The care of terminally ill people offers perhaps the best example of the voluntary and statutory sectors co-operating. The hospice movement has become an important part of the overall package of health care provision. In this, the work of the National Council for Hospice and Specialist Palliative Care Services has played an important role. The Government are anxious to encourage ever closer working and to that end have given substantial funding to health authorities in recent years to enable them to support the running costs of voluntary hospices.

In 1987, the Department of Health asked health authorities to plan and provide comprehensive services for terminally ill people in co-operation with the voluntary sector, and to agree with voluntary organisations a contribution towards the costs of any direct services which they provided and which formed part of the authorities' overall plans. Authorities gave £11.4 million to voluntary hospices in 1988–89, and they have gone on to give more every year since then. Health authorities' funds are limited, so the Government have provided specific funding to help those authorities to give more support to voluntary hospice services—£8 million in 1990–91—which meant that the national health service was able to provide 30 per cent. of the cost of voluntary hospice services. We have increased Government funding every year, giving £17 million in 1991–92 and £31 million this year. Next year it will be even more—£32.36 million—for the health authorities to help out with voluntary hospices' running costs.

That is not the end of the story. In 1988–89 we provided extra money to help hospices to bear the cost of the pay award for nurses. In 1991–92 we introduced a pilot scheme to enable hospices to obtain drugs for their in-patients free of charge, extending the scheme in 1992–93 to cover dressings and appliances. We extended this for a further year and are providing £5.6 million next year. We shall review the future of the scheme durng the course of the year. Last year, too, we announced a £5 million programme of funding specifically for children's hospices. We are giving health authorities £5 million next year to enable them to replace the funding which some hospices would previously have received from the higher rates of income support. All this brings the Government's total funding to voluntary hospices in England since 1991 to more than £105 million.,

We cannot, however, be complacent. Too many people die in hospital instead of in a hospice or at home with proper care and support. The challenge for the national health service is to respond more flexibly to the needs and interests of dying people in the community and in a full-time care setting. We are therefore working with health authorities to ensure that they bring voluntary hospices firmly into overall health planning and contracting, and that they continue to develop national health service facilities.

From 1994–95 we shall build money for hospices and similar organisations into health authorities' overall funding on a recurrent basis. This means that authorities will be better placed to plan longer-term funding with the relevant voluntary organisations. At present, authorities do not know how much funding for hospices they will have for the new financial year until shortly before the year begins. This can prevent them from planning long-term service developments with hospices. Building funding into general allocations will make it easier for health authorities and hospices to agree three-year contracts, thus giving hospices greater financial security and a firm foundation on which to plan ahead. It will also help to develop a more structured approach to developing national health service and voluntary sector services side by side.

We believe that this is the best way of ensuring that health authorities move towards our target, that public funding for hospices should match voluntary giving, while at the same time providing greater flexibility to plan long-term services. The Department of Health will monitor health authorities closely to ensure that they agree contracts with hospices for future years and that they are making progress towards matched funding. In 1994–95 it will be an explicit priority for health authorities to agree firm service contracts with hospices and other organisations providing palliative care.

Our commitment to promoting palliative care is clear, but it is not just a matter of funding. We need to find out more about how to help dying people. We need to help people to understand death and disease more, to approach death with less fear, and to be more caring, compassionate and supportive towards terminally ill people. To that end, we have supported research at York university and stimulated the production of a distance learning programme at the Open University. We are also promoting and supporting conferences of professionals.

In addition, we asked the Standing Medical Advisory Committee and the Standing Nursing and Midwifery Advisory Committee to look at the organisation of palliative care services and the measurement of their performance. Their report, "The Principles and Provision of Palliative Care", will be published soon. Pre-publication copies were sent to health authorities and other interested bodies and there have already been strong reactions to the report—favourable and otherwise. I have seen, for instance, the initial response from the National Council for Hospice and Specialist Palliative Care Services. That is very welcome because one of our key aims is to stimulate a debate about the organisation and scope of palliative care. We look forward to seeing further reactions to the report and to discussions about its implications. We also asked health authorities to consider the report's recommendations in drawing up plans for services for terminally ill people.

My hon. Friend asked about the distribution of the £5 million transferred from the Department of Social Security. I am aware of hospices' concern that they might suffer financially after 1 April this year as a result of changed eligibility for income support resulting from changes to community care arrangements. I take this opportunity to reassure them that we are taking steps to prevent hospices losing out.

Community care changes are aimed at enabling authorities to place vulnerable people in the care environment best suited to their needs, including support in their own home. As part of those changes, people going into a hospice after 1 April will no longer be able to claim income support payments to meet a charge for their care.

Where hospices need funding in addition to that raised from voluntary giving in order to provide essential services, that should come from the NHS.

The £5 million transferred to enable health authorities to maintain levels of public funding available to hospices will mean that hospices will have a single source of public money instead of the present two sources—income support payments and health authority funding. Health authorities will use the £5 million to replace the funding that some hospices previously received from special higher rates of income support.

We shall very shortly be giving guidance to health authorities on the use of the £5 million, asking them to allocate it in a manner that is sensitive to the current reliance on income support of specialist voluntary in-patient palliative care facilities in their areas. Funding should be provided through contractual arrangements wherever possible. We believe that that will cushion the impact of the loss of income support and protect hospices from the financial problems which some feared. Further funding will be provided to health authorities in following years. We shall monitor closely the use of that funding and the relative support given to individual voluntary hospices. I welcome the national council's recent guidelines on community care for terminally ill people, and I am sure that they will prove valuable to hospices and authorities.

My hon. Friend asked about our plans for future funding of children's hospices. As with adult hospices, the objective now is to move towards health authorities determining the need for hospice care for children through contracts rather than persisting with central funding via top-slicing, as at present. We believe that hospices should form only one element of services for children with life-threatening illnesses, and that provision should be based primarily on domiciliary care in the child's home, wherever possible, with access to respite and palliative care as necessary.

I am sure that my hon. Friend agrees that hospices and palliative care have come a long way. From a small, enthusiastic but essentially separate movement, it has become an integral part of the overall health care spectrum. In that, as in many other areas, we must acknowledge our substantial debt to the innovative work of the voluntary sector—and I particularly applaud the efforts of my hon. Friend the Member for Broxbourne in drawing attention to all that it has done.

Question put and agreed to.

Adjourned accordingly at half-past Ten o'clock.