Hospice at Home Movement (Hansard, 6 February 1991)

§ Mr. Ieuan Wyn Jones (Ynys Môn)

This is a welcome opportunity for me to do two things. First, I pay tribute to the men and women throughout Wales who, through their voluntary efforts, provide comfort and solace for the terminally ill: I applaud them all. Secondly, I urge the Government to recognise that more than they do now.

Facing death is the greatest trauma that we all experience. It takes great courage and strength of character, and the human spirit has tremendous reserves of both. The trauma affects not only the patient, but members of the family, arid none of us responds in the same way; but the psychological effects of terminal illness are often as great as the illness itself. The level of support that is required, in both the medical and the general sense, is enormous.

The commitment shown by so many people to the terminally ill is ample testimony to the way in which society embraces those who need the service that I am describing. I am sure that every hon. Member will have seen the remarkable way in which families are enveloped by a genuine outpouring of love and affection from their friends and relatives. Without such support, many people simply would not survive the trauma.

I have witnessed at first hand the way families seek to cope with terminal illness—indeed, not only the illness itself, but impending death—and it has had a profound effect upon me. But only those who have had the experience themselves are fully qualified to speak of its effect. My own mother cared for my father for four years. He had suffered a debilitating stroke that left him paralysed on one side and caused the loss of speech. My mother saw him gradually deteriorate in health until his passing away was only a matter of time. Although he was my father, I know that the effect on my mother was considerably greater. A fairly close family friend died 12 months ago. I know the effect that the illness and death in that case had on his young wife and young family.

It is for all these reasons that, tonight, I applaud all those who work in a voluntary capacity in the hospice movement in Wales. I am associated in a very small way with the Hospice at Home movement in Gwynedd. It was set up in 1989, and to date about £140,000 has been collected. The movement hopes to be able to appoint its first nurse in the coming spring. The public response in the county has been quite magnificent, and I take this opportunity to congratulate the organisers of the appeal and those who have made contributions.

In preparation for this debate, I was in touch with a number of other hospice movements in Wales. They have all called for Government funding and support. They include the Terminal Care Fund for the Provision of Hospice Care, in South Clwyd; the George Thomas Centre for Hospice Care, in Cardiff; the St. David Foundation, in Newport; and the Ty Olwen Continuing Care Unit, in Swansea.

The need for such facilities is obvious. In 1987, 815 out of the 3,082 deaths recorded in Gwynedd were due to cancer. Regrettably, the health service is not in a position to provide full care for the terminally ill in the county. The aim of the Hospice at Home movement is to provide 388 adequate care and support for every progressive cancer patient in Gwynedd and, therefore, for every family that has to cope with this problem. The movement tries to ensure that patients may end their days in peace and comfort, free from pain so far as possible, and usually—and, in many cases, preferably—at home.

The service hopes, when operational, to control distressing symptoms, to attempt to meet the personal arid emotional needs of patients, and to provide support arid help to relatives, both during the illness and into bereavement. Skilled care will be provided, in full co-operation with the health service, through the work of trained nurses and other specialised staff and volunteers.

The only national health service hospice in Wales is the Ty Olwen house in Swansea, which was built as a result of a combination of community fund raising, help from the National Society for Cancer Relief, and assistance from the West Glamorgan health authority. I am pleased to say that that hospice is about to open an extension costing £750,000, every penny of which was raised through voluntary contribution. Again I say to the members of the public in West Glamorgan what a wonderful achievement that was.

When I examined the level of Government support for the hospice movement in the United Kingdom, I found that, in previous years, money had been made available in England, Scotland and Northern Ireland, but not in Wales. According to Department of Health press releases, sums of £8 million and £17 million were allocated in 1990–91 and 1991–92 respectively—a total of £25 million over two years. I have also had an opportunity to read the exchanges that took place in the House yesterday during Health questions, confirming that those were the figures.

It is useful to quote from the Department's press release to show the level of support that the Department feels is necessary for the hospice movement in England: the funds were to help health authorities move towards `pound for pound' or 50 per cent. funding of voluntary hospice services. The commitment to move towards 'pound for pound' funding in England copies what already prevails in Scotland and Northern Ireland. It is a commitment repeated by Mrs. Bottomley and by Government spokesmen in the House of Lords. The press release goes on: A major reason for the £8 million allocation was surely to make hospices less dependent on charity funds, and not to maintain that charity dependency. Fund raising is an increasingly tough and competitive activity which draws greater and greater energy from senior hospice staff. The future of hospices and of hospice care cannot be secured by charity.

The Minister of State has made the critical and central point that the commitment to greater NHS funding is to allow voluntary hospices to plan with confidence and on a more stable basis. Indeed, in her written reply to Mr. Baldry of 15 December 1989, Mrs. Bottomley said that the objective of pound for pound funding for hospices would 'provide a clear basis on which to plan ahead.' This can only occur if the additional funds are used to shift the balance of hospice funding from charity and towards the NHS. In Scotland the funding for the current year is given on the basis of 50 per cent. of the running costs of the hospice provision—in other words, pound-for-pound funding. That principle is likely to be followed in future years. So, as of tonight, we have pound-for-pound funding in Scotland and Northern Ireland and they are moving towards it in England. Thus, it was a matter of concern that we had to wait so long for an announcement in Wales. All other countries were ahead of us in funding. The 389 Under-Secretary will be aware that I and many other hon. Members have pressed the Government for action on a number of occasions.

Shortly after I became involved with the Hospice at Home movement in Gwynedd, I wrote to the then Secretary of State for Wales, the right hon. Member for Worcester (Mr. Walker), on 19 February 1990, asking him when an announcement would be made. He replied on 9 March that consideration was being given to making financial assistance available. Shortly afterwards, I asked a question in the House and was given a fairly similar reply. I wrote to the present Secretary of State for Wales on 20 September, and in reply he quoted the then Under-Secretary's letter to the Hospice at Home movement in Wales stating that an announcement would be made as soon as possible.

It was therefore some relief that an announcement was made by the Secretary of State on 24 January this year. Many hon. Members are entitled to claim just a little credit for that announcement. The £1 million that was made available is to be distributed among the health authority areas in Wales. Let me make it clear to the Under-Secretary that that allocation is welcome. However, I hope that he will understand when we say that we expect that sum to be increased.

When the Under-Secretary replies, I hope that he will address his attention to the fact that there is no mention in the press release of a commitment to pound-for-pound funding for Wales. I repeat that that already exists in Scotland and Northern Ireland, and it is on the cards in England. We are entitled to ask the Under-Secretary to tell us whether it is his intention to have a similar system in Wales. The present allocation will help, but much more is needed.

I ask the Under-Secretary to tell us that we can move towards pound-for-pound funding, which, more than anything, would encourage and recognise those who are providing such a valuable service in Wales and elsewhere.

§ The Parliamentary Under-Secretary of State for Wales (Mr. Nicholas Bennett)

I offer my congratulations to the hon. Member for Ynys Mon (Mr. Jones) on his success in securing an Adjournment debate on this important subject. I welcome the hon. Members for Clwyd, South-West (Mr. Jones) and for Newport, West (Mr. Flynn) and my hon. Friends the Members for Wyre Forest (Mr. Coombs), for Beckenham (Sir P. Goodhart) and for Solihull (Mr. Taylor), who have taken a keen interest in the subject.

The remarks of the hon. Member for Ynys Mon were given added strength and power by the fact that he was able to speak from personal family experience of the problems faced by carers in looking after the terminally ill. I share his concern and support for all that is done by people who must look after people in the last days of their lives.

I particularly appreciate the opportunity that the debate gives me to highlight the work of the hospice movement in Wales and elsewhere. I assure the hon. Member for Ynys Mon that my right hon. Friend the 390 Secretary of State and I, and indeed the whole Government, share his perception of how seriously it should be taken.

I deeply appreciate the high standards of care which are provided and which continue to be developed by the independent hospice movement. I welcome its growing partnership with the national health service in caring for people with terminal illnesses and in supporting their families. I expect health authorities to take the lead in planning and co-ordinating a full range of facilities for those with terminal illnesses, covering home, day and in-patient care.

It is generally accepted that most people with terminal illnesses prefer, if possible, to be cared for in their own homes and communities. Home is the best place to provide that care and support. I am delighted that the voluntary hospice movement in Wales is focusing on the development of domiciliary care and on providing the support and counselling that those with terminal illnesses and their families need.

I pay tribute to the role of NHS hospitals and in-patient hospices such as the Marie Curie centre at Holme Towers in Penarth.

Just as there needs to be a close partnership between the statutory and voluntary sectors in the provision of care, there must be the fullest co-operation between everybody involved in helping those in their last days of illness. That enables people to have the full range of diagnostic and treatment facilities that are available in our hospitals. It will be of comfort because patients will not be separated from their homes, families or friends for any longer than is absolutely necessary.

The hospice movement is unique. The emphasis is on the quality of care which puts those with terminal illnesses and their families at the centre of all that is done. The hospice movement is based on a team approach in which specialist and generalist staff from a range of disciplines, often supported by volunteers, seek to give a dying person and his family the best quality of life. That is done by making available the highest possible standard of pain relief and symptom control. It ensures that people have the emotional, social and spiritual support that they need. This flexibility, time to listen and to share people's deepest needs and emotions, cannot, of necessity, always be provided in a hectic hospital ward, where the emphasis is on active treatment and cure.

One of the greatest benefits that improvements in active treatment has brought is that many cancers that used to be fatal can now be cured. Even in cases where a complete cure is not possible, patients can remain active and have fulfilling lives largely free from pain and excessive symptoms.

Advances in the treatments available have in turn made possible new patterns of care. They are based squarely on avoiding in-patient admissions, except where they are absolutely necessary.

I should like to deal with the issues that affect us in Wales and to set out how we intend to secure continued improvement in these vital services. The hospice movement aims to offer care to meet a wide range of needs. The most important area—the one for which it is justly renowned—is the care of those dying from cancer. Moreover, the hospice movement has an increasing role, for instance, in the care of people with AIDS and motor neurone disease.

391 Cancer alone causes about a quarter of all deaths in Wales, and the hon. Member for Ynys Môn referred to the problems that are faced in Gwynedd in that regard. In 1988 there were more than 8,500 deaths from this dreadful disease. I regret to have to tell the House that of the 30 European countries only 10 have a higher death rate from cancer for men and only three for women. I was, therefore, delighted to welcome the recent protocol for future investment which we produced on cancer services as a result of the work of the Welsh Health Planning Forum. The protocol sets out ways in which we can use the considerable resources that we devote to the treatment and support of those with cancer. The protocol emphasises the importance of hospice and domiciliary care.

We are fortunate in Wales to be able to build on the success that we have already seen in the past few years. Much of that is due to the pioneering work of Dame Cicely Saunders and her colleagues at the St. Christopher's hospice in Sydenham in London. I am delighted that my hon. Friend the Member for Beckenham can be here today because the hospice is in his constituency. Indeed, I am personally acquainted with the work of St. Christopher's, because the wife of a friend of mine was nursed there during her final days some three years ago. Dame Cicely trained at St. Josephs in Hackney where I was the Conservative candidate in 1979. I visited that hospice and saw the work done by what is the oldest of the 20th century hospices open in Britain.

By showing what can be done, this pioneering work has paved the way for important developments in Wales in the 1970s and 1980s. The Marie Curie centre in Penarth provides in-patient and out-patient care and services in the wider community. The work of the St. David's Foundation in Gwent is., rightly, well renowned. In Haverfordwest, in my constituency, the Paul Satori Foundation works ceaselessly for those approaching the end of their life through illness. The Ty Olwen unit in. west Glamorgan and the Nightingale Trust in Wrexham are fine examples of NHS facilities strongly supported by voluntary effort.

More recently, the George Thomas centre has been established in Cardiff. Indeed, Mr. Speaker, there could be no better person than your predecessor, a Speaker of this House, after whom to name a hospice. George Thomas, or Lord Tonypandy as he is now known, through his valiant struggle against cancer and his overcoming of it through his Christian convictions and strength of personality, has given encouragement to others who face this dreadful illness. He has given them hope that they can fight it.

The hon. Member for Ynys Môn rightly drew attention to the splendid initiative of the Gwynedd Hospice at Home movement. The organisation was born some 18 months ago by a group of lay persons and professional hospital staff. They started collecting funds one year ago and I am delighted that they have so far collected £150,000. I wish them every success in their fund-raising efforts to reach their target of £500,000. They intend to set up a service caring for patients in their own homes. Nurses will run the organisation. They are to be recruited, trained and paid for by the Hospice at Home movement. The organisation will shortly recruit nurses who will be trained in November 1991 and commence caring for patients on 1 January 1992. I am sure that the Gwynedd health authority, under the excellent chairmanship of Noreen Edwards, will want to 392 work closely with the movement to see how best to use the £65,000 which we have allocated to Gwynedd for voluntary hospice work in this coming year.

All those successful examples show the strong partnership between the voluntary agencies and statutory authorities. Among the professional staff who play such an important role in the hospice movement are the general practitioners, the social services and community health teams. That partnership has led our health authorities to provide some £250,000 annually for the voluntary hospice movement, over and above the services that they provide directly themselves.

Other important recent developments to which I should like to draw attention include the Government's decision in 1989 to end for those with terminal illnesses the six-month qualifying period before attendance allowance could be paid. That has been of significant help. In April 1990, palliative medicine had developed to such an extent that it was formally recognised as a distinctive medical specialty by Government health departments. Already in Wales, several senior house officer and registrar posts operate on a rotational basis between the Marie Curie centre at Holme Towers and the Velindre and Rookwood hospitals.

There is to be a second consultant post based at Holme Towers and funded by the Marie Curie Foundation. The second consultant will join Dr. Ilora Finlay, the consultant in palliative medicine and medical director of the Marie Curie centre. I pay special tribute to Dr. Finlay and her colleagues at the University of Wales college of medicine for their important work. They have established a postgraduate diploma course designed to share with senior and experienced GPs the best ways in which to help people with terminal illnesses. Once again the voluntary sector has played a leading role in making that possible with funding provided by the Cancer Relief MacMillan fund.

Finally, I should like to draw attention to the advice centre that the charity Tenovus has established in Cardiff to provide carers with information about available services. I should stress that the examples I have given are just a few of the considerable achievements in Wales, but I accept that much still needs to be done.

I do not dissent from the hon. Gentleman's suggestion that, perhaps in north Wales, the level and depth of service provision is not all that we would wish it to be. The Government therefore have a wide-ranging programme to secure improvements in care. The Welsh Office and the Department of Health have asked the Standing Medical Advisory Committee and the Standing Nursing and Midwifery Advisory Committee to produce jointly comprehensive advice on the development of palliative care, including hospice care, in England and Wales. There will, of course, be a professional input to this from Wales. We have asked the committees to produce their advice by the end of the year.

The hon. Gentleman will be aware that we are not waiting for the joint committee to report to ensure the continued development of services in Wales. That is why only last week my right hon. Friend the Secretary of State announced that we would make available, for the first time, specific money for voluntary sector activity in the Principality. I am delighted to say that the £1 million allocated has been warmly welcomed. Although I appreciate that the hon. Gentleman does not think that that is enough, it is a good start and I am sure that he, too, is delighted at that allocation. We can always spend more, 393 but that allocation will mean a 40 per cent. increase in the amount of money available for voluntary hospices in Wales in the coming financial year. Health authorities will allocate those funds in the light of local circumstances to support existing organisations and to help foster the development of services where they are most needed.

The Welsh Office and the health authorities will review the development of those services so that, together, we can ensure the best possible care of people with a terminal illness.

The hon. Gentleman spoke about 50–50 funding and it is important that an effective working partnership is forged between district health authorities and the voluntary sector. The precise balance of funding may differ from project to project or even area to area. I do not believe that 50–50 funding of every project in the hospice movement would necessarily make the best use of available resources. Some projects may justify more support than 50 per cent. while others may need less because of their access to other sources of funding.

My right hon. Friend the Secretary of State also decided recently to allocate £460,000 as a contribution to the continuing care unit in Pontypridd, which is also receiving funding from the Cancer Relief MacMillan fund.

394 Our firm intention is to provide money that can be used well throughout the health service. I am sure that the extra funding of £1 million to voluntary sector activity will be spent wisely. Therefore, in the light of progress in the coming year, future needs will be taken into account. I am delighted to offer the hon. Gentleman the assurance that that £1 million is not the only million pounds that we hope to give in future years.

We are building on success and, above all, on a practical tradition of the delivery of high-quality services. We are determined to see a humane, top-quality hospice movement that provides care and support based on a secure and dynamic partnership between health authorities and the voluntary sector.

The additional resources that we have announced represent the biggest boost ever given to the hospice movement in Wales. It will provide the basis to ensure that, at last, we can ensure that people who suffer from dreadful illnesses over a long period get the care and support they need as they approach the end of their lives. Once again, I thank the hon. Gentleman for giving the House the opportunity to talk about this important subject. I appreciate his concern and we shall ensure that his remarks are taken to heart.

Question put and agreed to.

Adjourned accordingly at seventeen minutes to Eleven o'clock.