HC Deb 29 November 2001 vol 375 cc1214-22

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

7.15 pm
David Taylor (North-West Leicestershire)

I am especially pleased to have secured this debate on the future of the UK hospice movement in the light of recent closure announcements affecting four of the 20 homes run by Sue Ryder Care, including the hospice at Staunton Harold hall in my constituency.

I shall outline the history of the hospice movement in the United Kingdom, the problems that it has traditionally encountered and the inherent limitations of the over-reliance of the national health service on the voluntary sector to deliver what is now an essential element of public health care. My speech will draw on the research of the National Council for Hospice and Specialist Palliative Care Services and Help the Hospices. I am grateful for their assistance.

In 1967, the voluntary sector, tackling a gaping hole in state provision, founded St. Christopher's, Britain's first modern hospice at Sydenham. Prior to that, what we have come to know as palliative care might occasionally have been provided in the patient's own home, but availability was patchy and remained so for some decades.

The lives of most people will be touched by cancer, either their own or that of a relative or friend; my life was, two decades ago. A searing memory comes back unbidden of a family member who contracted myeloma and of how we were all traumatised by the terminal phase of that bone marrow disease. It was an awful period for our family, with a prolonged physical and emotional agony that might have been relieved had hospice care been available.

The growth of the hospice movement has offered the chance of equity of access to provision but, for reasons that I shall detail, it remains restricted in its ability to expand and to provide an increasing number of beds. Even with the limitations of the voluntary sector, that vital, magnificent and enduring movement can still provide 70 per cent. of all in-patient care, 87 per cent. of all day care, 44 per cent. of all home care and 81 per cent. of all out-of-hours care.

Voluntary contributions created and sustained the first hospices and remain the financial life blood of the majority of them. The voluntary sector continues to run two thirds of all hospices in the UK. Although the need for state provision of palliative care was eventually acknowledged, the growth of NHS contributions to voluntary sector hospices has been agonisingly slow, although it was at least ring-fenced until the early 1990s.

The removal of the separate status of hospices in health authority budgets has, I fear, led to the closure of charitable hospices.

Mr. David Drew (Stroud)

Does my hon. Friend agree that the greatest problem is that there is a disparity between what is given by health authorities and trusts and that that has a disproportionate effect on hospices?

David Taylor

I certainly agree with my hon. Friend, whose Adjournment debate on this topic was a seminal one in the last Parliament. He makes a valid point, as I hope to show later.

In the late 1980s, the right hon. Member for South-West Surrey (Virginia Bottomley), in her capacity as a Health Minister, stated: The Government's objective is to work towards a position in which the contribution from public funds available to voluntary hospices and similar organisations matches that of voluntary giving. This will provide a clear basis on which to plan ahead"— [Official Report, 15 December 1989; Vol. 163, c. 847W.] That seemed to be a huge leap forward, and it led voluntary hospices to base their plans on hopes of an eventual move towards 50 per cent. state funding, but, with some exceptions in Scotland, that objective was never achieved. One of the better English cases—Leicestershire' s Loros—receives 41 per cent. state funding. However, since 1996, the proportion of funding that the independent charitable hospices sector receives from the state has declined from 35 to 29 per cent. in 2000–01.

Mr. David Lepper (Brighton, Pavilion)

Does my hon. Friend agree that the situation faced by the Martlets hospice, which serves the Brighton and Hove area, is not uncommon in that it still relies on annual funding from the primary care group and therefore cannot plan ahead, as it could if it were given three-year funding?

David Taylor

I thank my hon. Friend for making that point. Indeed, I shall make a similar point later. The three-year planning horizon is illusory for many hospices.

Children's hospices receive state funding of only a meagre 5 per cent. on average. If we are to safeguard the widespread provision of palliative care, the need for a national strategy for the funding of voluntary hospices cannot be stated strongly enough. The restoration of their separate status would prevent the perpetuation of the present almost annual negotiations with health authorities, primary care groups and primary care trusts for emergency supplementary funding. Left unaddressed, the disparities in the statutory funding of hospices and the resulting unevenness of geographical provision will worsen.

The voluntary sector's role in providing hospice care has been invaluable to successive Governments in taking the burden of responsibility off the NHS. That has led to a culture of complacency towards palliative care in the NHS and its Treasury paymasters, in which health authorities seem to regard it as a late call on tight budgets, not as one of the first claims. Unsurprisingly, palliative care is still viewed as the preserve of the voluntary sector, providing significant volunteering opportunities to those with personal experience of nursing terminally ill relatives.

That tacit arrangement continues to characterise hospice and palliative care provision in the United Kingdom, and it is to the eternal credit of the volunteers and professionals working in the sector that, despite a future shot through with uncertainty, they continue to provide environs of dignity and respect and an incomparable quality of care to those coming to the end of their lives. I am not saying, however, that the NHS should always incorporate hospice or palliative care facilities in hospitals even if appropriate sites are available.

Sir Teddy Taylor (Rochford and Southend, East)

Does the hon. Gentleman agree that one of the problems, under Governments of either party, is that when there is a substantial increase in spending, such as a staff pay rise, every part of the NHS gets the money except the hospices?

David Taylor

I must have left my draft speech on a photocopier, because I shall come to that very point later. NHS inflation, especially in relation to nurses' pay, is a serious problem. Coherent guidelines for local health authorities and PCTs need to be formulated so that local health authorities are encouraged—or, in new Labour-speak, incentivised—to improve their perception and usage of hospice services.

I understand that the National Institute for Clinical Excellence is in the process of creating such guidelines for the budget holders, but that they are not due to be published until the middle of next year. Will the Minister please confirm the planned publication time scale?

Furthermore, the psychology of the service and environment provided by the voluntary sector often has important advantages for the patient over NHS provision, where beds are typically found for palliative care in a hospital or, at least, on an adjacent site. Even if practical, NHS provision does not offer psychological or psycho-social sanctuary to terminally ill people in the way that hospices have traditionally done. The voluntary sector can offer a curative distance, alleviating the emotional agony of terminal illness. The Government are to be applauded for acknowledging that intrinsic advantage as they promote and encourage partnership between the NHS, voluntary, independent and charitable sectors.

In my constituency, the life of the Sue Ryder Care hospice at Staunton Harold hall is drawing to an early and unnecessary end, speeded by the action of its landlords, the Ryder Cheshire Foundation. A 31-year lease on that historic building, which is in the most picturesque and tranquil setting, is being surrendered under pressure from the foundation, as part of its need to realise assets. Hard-nosed boardroom attitudes enter by the front door, and agency funding and caring staff have left by the rear.

However, the foundation is not the only guilty party in this sad saga. Poor co-ordination between the various NHS bodies leads to a successor range of small palliative facilities attached to hospitals that will struggle to approach the quality of care that is the bedrock of Staunton's reputation. The 20,000-plus signatures on the petition handed in at Sue Ryder Care's head office in London bore testimony to the high esteem and affection that local people have for the Staunton Harold hospice.

A magnificent care home closes. Despite an energetic fight by William Fantham, Helen Fawcett and their fellow KOSSH campaigners, a treasured hospice is to be lost—one on which local communities had become very reliant and to which they have become most attached. The national charitable sector is the smallest presence in the palliative care network with just 17 UK hospices and it is very vulnerable to the sort of circumstances that have sadly stolen the jewel from the Leicestershire hospice crown.

Although I welcome the £50 million pledged to palliative services in the NHS cancer plan and the opening up of the new opportunities fund to the voluntary sector, the allocation process highlights what has traditionally hampered the sector in the expansion of its progressive care practices: the disparate and improvised nature of its statutory funding. That leads to a perennially precarious situation. Hospices can go for months not knowing their long or even short-term prospects for survival, with the spectre of closure and the removal of patients from their beds always hanging over them.

Although late funding is often found from one source or another, the supposed three-year length of the contracts with the health authorities is rarely the case in reality. Such is the frugal nature of NHS contributions. It is a cruel irony that, in some years, hospices are often saved from closure by the deaths of former patients and/or their relatives.

In January 2001 in England, not including children's hospices, there were 449 hospice or palliative care beds available in the 36 NHS units compared with 2,074 beds in the 127 voluntary "units". Logically, this would be respected as an exemplar of best practice and value for money and the state would recognise the success of this palliative care model by embarking on a national strategy to guarantee its funding. But there is little logical about the disproportionate emphasis on handling a slow inflow of tax revenue that has masqueraded as modern government for the past 20 years.

Post-Staunton provision in North-West Leicestershire is obviously a priority for the local primary care group. I believe that four beds in Coalville community hospital are already earmarked for palliative usage. Good as that is, it illustrates the improvised nature of palliative provision. Staunton Harold's capacity was latterly 12 beds, supplemented only by a handful of other voluntary hospices

Unfortunately, that situation of insufficient beds and sites is replicated all over the country. Lord Hunt said recently that the NHS was mapping existing services to identify and tackle geographical inequalities. I welcome that, but it must not be an excuse for delay nor a disincentive to the voluntary sector if little extra funding is to be available in areas with high community involvement.

In summary, existing state funding is inadequate to provide even a very basic level of universal palliative care. Despite the welcome £50 million for specialist palliative care in the NHS cancer plan, local hospices trying to access this funding via the cancer networks cannot find the way in to the foggy maze that confronts them. This cloud of uncertainty over finance also embraces strategic planning as the NHS seems unwilling to spell out its core palliative care responsibilities. That is at the heart of the present crisis.

We need a national strategy and framework for palliative care. Hospices need to know what the state accepts as its responsibilities and that the Government will commit to fund them. With a more realistic taxpayer contribution to costs, charitable fundraising can focus on the piloting and expansion of progressive care and treatments.

Communications between Government, their agencies and the voluntary sector have been improved a little by the national compact, but the startling lack of awareness about it by the Department of Health has seriously impaired its dealings with the voluntary hospice movement. Properly joined-up government could and should change such cynical reactions into more constructive relations.

There is a tremendous fund of good will towards the voluntary and charitable hospice movement from the generous British public, but their ability to underwrite the costs of this crucial service has been stretched too far. Collecting tins, charity shops and cake stalls can only do so much. National taxation, whether hypothecated or not, needs to pull its weight. Warm words from Government are not enough. We need action—and now.

7.29 pm
Mr. Andy Reed (Loughborough)

I am grateful to my hon. Friend the Member for North-West Leicestershire (David Taylor) and my hon. Friend the Minister for giving me the opportunity to speak briefly in support of my hon. Friend the Member for North-West Leicestershire. We have worked closely together on the matters that we are discussing.

I want to speak specifically about children's hospices. The Rainbow hospice is a fantastic children's hospice in my constituency. It suffers from the sort of problems that my hon. Friend described. I know from my visits to it that it rightly calls itself a place of rest on a long and difficult journey. Rainbow provides respite and terminal care in the hospice and at home for children who suffer from conditions that mean that they will die before reaching adulthood. We need to remember that that is what hospices are about.

One problem is that Rainbow has to cover Derby, Leicestershire, Lincolnshire, Northamptonshire, Nottinghamshire and south Yorkshire. Although it helps families to cope with life-shortening conditions such as Batten disease or life-threatening conditions such as cancer, working across such a wide area is extremely difficult.

I want to concentrate briefly on Rainbow's wonderful work. As my hon. Friend said, fundraising has become increasingly important. The hospice has to raise more than £1 million simply to remain as it is. It is lucky in being able to raise 10 per cent. of its income from health authorities and others. That is above the national average, but it shows the enormous amount of work that such a hospice has to do. Although it produces wonderful glossies and can rely on the good will of people in my constituency and throughout the east midlands, so much effort is put into fundraising that one feels that more of it should be directed at the excellent care that is provided at Rainbow.

As I said, Rainbow has to deal with all the health authorities in the counties that I mentioned. I have always supported PCTs, but I fear that even more work will have to be done to ensure the continuation of funding to Rainbow. I appreciate that the Minister and the health team have been considering innovative ways of providing health care in the future, but they should consider the excellent work that is happening not only at Rainbow but in the constituencies of the majority of hon. Members who have stayed for the debate. It is a testament to the work of hospices that so many hon. Members are in the Chamber.

I repeat that there is no agreed national strategy about funding voluntary hospices. They negotiate with health authorities, PCGs and PCTs, which means that there is a wide variance. The Government rightly emphasise an end to the postcode lottery for many other aspects of the health service. I hope that the Minister can end the postcode lottery that appears to be happening in our hospice movement.

More PCTs will make matters harder. From parliamentary questions that I have tabled in the past, I know that health authorities receive an element of funding for hospices. However, not all of them necessarily use the allocation to fund their local hospices. The further away one travels from Leicestershire, the greater the difficulty of convincing health authorities in, for example, south Yorkshire that they should contribute to the work of Rainbow hospice in Loughborough.

I make a simple plea to examine the funding of children's hospices seriously, end the postcode lottery that appears to be happening in my area, consider developing a national strategy to bring the best and worst authorities closer together and assess the impact of the move to PCTs on the amount of work that hospices will have to do to secure their current level of funding.

7.33 pm
The Minister of State, Department of Health (Jacqui Smith)

I congratulate my hon. Friend the Member for North-West Leicestershire (David Taylor) on securing a debate on such an important subject as the future of the hospice movement. I am aware of the specific anxieties that he raises about the Sue Ryder home at Ashby.

The hospice currently receives 50 per cent. funding from the NHS for its services. That is above the national average of 30 per cent., which my hon. Friend rightly mentioned. The closure is due to the termination of the lease by the Ryder Cheshire Foundation rather than the lack of NHS support, but we do need to ensure the continuation of services. To that end, I understand that there has been a constructive discussion between the home and the NHS to work out some options that have been debated by interested parties and will be considered by the cancer network management board in November.

As my hon. Friends said, the hospice movement is a success story. As a result, we are world leaders in palliative care. It was the hospice movement that first demonstrated the importance of ensuring that those nearing the end of their lives, and their families and carers, receive compassionate and skilful care. That good practice, which began outside the NHS and is still, as my hon. Friends rightly highlighted, predominately provided by the voluntary sector, is now acknowledged as a service that should be available to all who require it. That of course extends beyond those who need it for cancer services.

There are large variations in the provision and funding of specialist palliative care. Hospices have tended to be established in areas where the general public have been generous. That has enabled centres of excellence based on clinical practice, teaching and research to be established. Unfortunately, it has also resulted in patchy provision and wide variations between regions.

We have issued guidance to the NHS for palliative care strategies to be in place to meet the needs of the local population, and we are committed to tackling those inequalities in access to specialist palliative care services for patients.

My hon. Friends rightly ask for action. Let me explain what we intend to do to ensure that palliative care is adequately funded and the inequalities addressed. The national council estimates that total expenditure on adult palliative care services is about £300 million, of which about £170 million is provided by the voluntary sector and £130 million by the NHS.

The NHS cancer plan sets out our intention to invest an additional £50 million in specialist palliative care by 2004, which will match, on a national basis, the investment by the voluntary sector. That will also enable the NHS to make a realistic contribution to the costs that hospices incur in providing agreed levels of service. We will monitor the information from the service delivery plans and financial frameworks, which will help to provide a transparency for the level of investment made in reaching that target. We intend to ensure that that happens.

In addition, a further £70 million has been committed by the new opportunities fund to palliative care projects in England. Of that, £22 million has been allocated to adult community palliative care, building on the living with cancer programme, but extending to conditions other than cancer. Merely increasing investment in specialist palliative care, however, will not necessarily address the inequality of provision. We need to know the current level of provision and what is required to meet the needs of the local population.

Sir Teddy Taylor

Will the Minister give way?

Jacqui Smith

No. The hon. Gentleman knows that time is limited.

That is why we have put in place a series of measures. We have commissioned the National Institute for Clinical Excellence to undertake an evidence-based review of palliative care services as part of the supportive and palliative care service guidance. The guidance will benefit the voluntary sector and help decision making about service delivery. I can confirm that initial findings will be available from summer 2002.

We have required all 34 cancer networks to develop costed strategic investment three-year plans for palliative care. My hon. Friends made an important point about the certainty of investment. The plans will be based on current provision and local population needs and will form part of the cancer network service delivery plans. Those plans will inform the wider NHS planning process through the health improvement programmes and the service and financial frameworks for 2002–03.

For the first time, comprehensive data on the current provision of palliative care at a network level will be available. Networks will be able to see where the inequalities in specialist palliative care service provision are and plan services to address that, and as a consequence enable more realistic support for voluntary hospices. That will also enable hospices to plan strategically with cancer networks and identify their own business strategies, putting an end to short-term planning.

I must stress, as did my hon. Friend the Member for North-West Leicestershire, that we recognise the importance of ensuring that the needs of voluntary sector providers are fully reflected in network investment plans. In some instances, hospices may find it difficult to know how best to influence the process, which is why we have made available central funding to support voluntary hospice and palliative care providers in working effectively with cancer networks in the development of plans. All networks are participating in the programme, funded by the Department and led by the National Council for Hospice and Specialist Palliative Care Services. I agree with my hon. Friend that we must recognise the vital contribution made by the voluntary sector and engage it realistically and properly in NHS planning. We must support the sector to enable it to make its contribution.

My hon. Friend the Member for Loughborough (Mr. Reed) rightly drew attention to the Rainbow children's hospice. I am grateful that he set out the important work that it undertakes. It is a tribute to the many voluntary organisations that identified the help most needed. Their staff, supporters and well-wishers often have a special appreciation of the care that is required, which is often gained through deep personal experience.

Children's hospices have made a remarkable contribution to the care and support of dying children and their families. Fortunately, most children will grow into adulthood without experiencing a serious illness, let alone a life-threatening one, but some children are not so fortunate and develop conditions that may lead to an early death. It is important that in the NHS of the future these children and their families have high-quality support services and that coverage is extended so that equal access to a range of options is made possible.

Provision has been made for funds for children's hospices to come from the NHS. It is a matter for local discussion and agreement and is based on the local health needs assessment with the health improvement programme, which is the general funding mechanism for services. Voluntary health care providers, such as hospices, must be viewed as important players in the planning and provision of services, and should be involved in the development of health improvement programmes. That involvement should help to lead to more structured funding streams.

I recognise the concern that has been expressed about the development of primary care trusts and the role that they play. The year 2002–03 will be one of transition, with PCTs at different stages of development. They are increasingly making planning and investment decisions on behalf of their local communities. As key players within cancer networks, PCTs will have agreed to and contributed to the development of the network service delivery plan. That will be crucial. We shall soon be issuing national guidance on the new arrangements for the 2002–03 planning process, and allocations will soon be announced to Parliament. As I have said, PCTs will be involved in the cancer network planning process that I have outlined.

Each region now has a children's "lead" and is surveying the provision of children's palliative care services against demand, engaging voluntary and statutory sectors. We expect this work to secure a far better strategic fit of services to local needs and to achieve a range of options, and to afford greater equity of access for all people.

As I mentioned earlier, a further £70 million has been committed by the new opportunities fund to palliative care projects in England, of which £48 million has been allocated for children's palliative care to support programmes providing at least one of the following: direct services in the community to children with life-threatening or life-limiting illness—24-hour care; respite care services, which are either home-based or hospice-based; and bereavement services that are home based, community based or hospice based.

My hon. Friends have rightly said that the founders of the hospice movement, through dogged persistence, careful research and tireless fundraising, helped others to see that care was possible and at the heart of good clinical practice. As a Government, we have set out a challenging agenda for the support of palliative services for adults and children. We are committed to delivering this agenda, and we must work in partnership with the hospice movement if we are to do so. I give my commitment that that is the Government's pledge.

Sir Teddy Taylor

As time is still available, will the Minister say how we will get the £50 million? Hospices throughout the country have been in touch, as she well knows, with the cancer organizations—

Madam Deputy Speaker (Sylvia Heal)

Order. The hon. Gentleman is familiar with the procedures of the House. The Minister had already resumed her place. It is too late for an intervention.

The motion having been made after Seven o'clock, and the debate having continued for half an hour, MADAM DEPUTY SPEAKER adjourned the House without Question put, pursuant to the Standing Order.

Adjourned at fifteen minutes to Eight o'clock.