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I am delighted to have secured the debate, because the hospice movement does a fantastic job of backing up the health service by providing vital palliative care and relieving the pressures on families and carers. Children's hospices are a crucial, albeit relatively new element of that care; as the Minister will know, the first children's hospice was opened only 22 years ago, in 1983, and there are now 38 throughout the country. Children's hospices play a vital role in providing respite care and palliative care for vulnerable and ill young children. None the less, there is a problem.
I pay tribute to the thousands of people throughout the country who devote their time and energies to raising money to run children's hospices. As the Minister and my hon. Friends will know, running a children's hospice is not a cheap business; the level, quality and cost of providing such care are immense, and people are fundraising day in, day out, through efforts small and large, to ensure that the good work that hospices do can continue.
In that respect, I pay tribute also to The Sun and its online campaign "Help sick kids". The Sun has linked up with Somerfield in helping to raise funding for children's hospices to the level of that for adult hospices. It is heartening to see that many people in public life have signed up to the campaign, including Sharon Osbourne, Dame Kelly Holmes, Gary Lineker and Barbara Windsor. That is a plus, because it will not only raise the profile of the children's hospice movement, but be a stimulus to raising money. At least 8,000 people have so far pledged their support for what is a relatively new campaign.
What, however, is the problem? Over the past 22 years, children's hospices have evolved significantly, and, as I said, we now have 38 of them. They provide a range of care and support services to meet families' needs. Equally importantly, they provide those services when families need them. In 2004, the Government published their 10-year national service framework for children, young people and maternity services to support the implementation of the every child matters programme. The key principles of that guidance are that care must follow the child; families need choice over where their children are cared for; and respite care is a crucial ingredient, which should be seen as part of general provision, rather than as a separate service, so that we have a holistic approach and an integrated service that meets the needs of carers and their families.
Children's hospices have a crucial role to play in advancing those aims, but the problem that faces them, even more than adult hospices, is funding. Whereas adult hospices receive just under 40 per cent. of their day-to-day funding from central Government, children's hospices, rather amazingly, receive just under 5 per cent. on average. As everyone will appreciate, that gap is significant. Equally importantly, it shows the mountain that voluntary fundraisers have to climb in raising the funding that children's hospices need to make ends meet and continue providing care.
I congratulate my hon. Friend Mr. Burns on having secured the debate.
I know from Cransley hospice in my constituency, which looks after adults, how difficult it is to raise enough money to provide all the care that is required, despite the fact that, as an adult hospice, it receives 40 per cent. of its funding. It must be nearly impossible for children's hospices, which get as little as 5 per cent., to meet the targets that they have set themselves.
I know that my hon. Friend has a close interest in the well-being of his local hospice, and does tremendous work in supporting it. He makes a valid point, and reflects the experiences of many hon. Members and their constituents. The situation is critical, and that is one of the reasons why I was so keen to seek this debate. I wanted to bring home to the Minister, if he is not already aware of them, the sheer pressures and problems facing children's hospices in particular—but it is not unique to them—in raising the money to make ends meet.
In my region, East Anglia—if we take that to include the northern part of Essex—there are three children's hospices: in Ipswich, Milton near Cambridge, and Quidenham in Norfolk. In south Essex, including my constituency, we are fortunate in having a fantastic children's hospice, Little Havens. It is close to the constituency of my hon. Friend Bob Spink, but it serves the area up to mid-Essex, including Chelmsford. Their problem is that they receive significantly less funding from state sources than the adult hospices, so they have tremendous difficulty in raising sufficient money to meet the inexorable increase in costs that they must meet if they are to survive.
I suspect that nobody in this Room would disagree that for those children who, sadly, have advanced progressive illnesses our objective must be to provide the highest possible quality health care services, tailored to individual needs. That is what the providers want to be able to offer, and what ill children and their families deserve to receive. However, hospices are, unfortunately, chronically underfunded by the state. The NHS has relied heavily on the good will and charitable funding of the hospice movement. That inequality needs to be addressed, and the taxpayers' contribution to hospice services increased—in the case of children's hospices, greatly increased.
While, thankfully, the number of children and young people diagnosed with life-limiting illnesses is relatively small, those who have terminal conditions are surviving for much longer than was the case in the past. However, the current provision of palliative care services in no way reflects that; it has not been able to adapt sufficiently to meet the challenge, as we all hoped that it would. Children's hospice provision is particularly underfunded compared with that for adults. That is why I plead with the Minister to listen carefully to the messages of this debate, and to seek to ensure that something is done to rectify what is seen by many as an incomprehensible situation.
In 2000, the Government made available through the big lottery fund some funds for children's palliative care. Why should lottery funds be used to fund children's hospices and palliative care? Surely, funding should come from central Government, at least to the same degree that it does for adult palliative care. Back in 1988, I proposed a ten-minute rule Bill that would have set up a national lottery, the proceeds of which would have gone to funding health care. That would have been additional money, not a means of allowing the Government to cut their contribution by the amount that the lottery raised. It is ironic that, root and branch, Labour Members and Labour shadow Ministers strongly opposed that concept at the time, saying that it was entirely wrong that a lottery should provide funding for the health service, because funding was the duty of the state through the tax system. They said that if that happened, Governments would be tempted to use the money that was raised from a lottery for the health service and to cut the amount that the Treasury would make available to it.
My hon. Friend makes a good point. It was very prescient of him to propose that legislation some years ago. Does he not agree that what has happened with funding of hospices breaches two of the major tenets of the lottery when it was set up in 1994? First, it breaches the tenet of additionality—that the lottery should not be a substitute for mainstream funding from the public purse, and secondly, it breaches the tenet that it should be at arm's length because, as my hon. Friend said, the Government closely influence the causes funded by the new lottery.
My hon. Friend makes a powerful point. He is absolutely right. He has identified a sad contradiction between the rhetoric and the actions of the Government. Frequently the rhetoric sounds fine but, sadly, when it comes to implementation of that rhetoric through action, it can be a very different thing. My hon. Friend gives a powerful example of one case in which what the Government say is not what they do, which is to be deplored.
The money from the big lottery fund runs out in April 2006, and there are currently no plans to make any more cash available through that sourcing. Perhaps, as with the three-year announcement of public spending, that does not mean that the Government will not continue to provide funding from that source after April 2006. However, to the best of my knowledge, no categorical assurance has been given. Given that the Minister has been sitting in the debate shaking his head in a negative way, I hope that he will be able to reassure us that the Government will continue to provide that source of funding to the hospice movement. I am sure that he will do so because it would be good news and it is systematic of this Government that they are more than happy to announce and sometimes re-announce good news.
If there is to be a good-news announcement during the debate, which I will warmly welcome, will the Minister temper that good news with an explanation of why he thinks it is justified for the Government to rely on funding from a lottery source for that sort of financial aid to a crucial area of health care, rather than using that lottery funding as additional to the amount that the Government have given? It seems to most people that the Government are using the lottery to reduce the contribution: that they are making up the shortfall through the lottery rather than maintaining high levels of Government funding and then topping that up from the lottery as a bonus.
I hope that my own local children's hospice, which is also the hospice that serves the constituents of my hon. Friend Mr. Amess, who is equally involved and active on their behalf, will benefit from such continued funding. Whatever money the Little Havens children's hospice may have received in the past does not take away from the fact that it currently receives only 2 per cent. of its £1.6 million costs per annum from Government funding sources. The Minister will see from that that 98 per cent. of that £1.6 million must be raised from other sources to ensure that the hospice can continue to do the fantastic work that it does.
In that respect, I make another plea to the Minister regarding a problem that applies both to children's and adult hospices. They have to negotiate with their primary care trusts for funding. In principle, we support the philosophy behind PCTs—that 75 per cent. of health funding is given to a local organisation, staffed and manned by local people, which can identify local health needs and distribute the money to provide health care in the area.
The trouble is that many hospices, especially children's hospices, because there are fewer of them, have to deal with several PCTs, usually individually, to secure funding through that stream. That is time-wasting, cumbersome, bureaucratic and difficult. Without compromising the independent nature of PCTs, I urge the Minister to ascertain whether there is anything that he can do, through the Department of Health, to get PCTs in respect of adult and children's services to unite and provide one forum for negotiations for hospice funding, rather than hospices having to go through the burdensome procedure every year of approaching each PCT to secure funding.
It would also be of great benefit to children's hospices if the Government could announce a three-year rather than a year-by-year, programme of funding, as they have done in other areas of public spending such as general health and education. A three-year programme gives greater security and the ability to plan for the future. Like practitioners in the health and education services, I welcome that excellent system because of its clarity and transparency and because it gives those services greater ability to plan over a longer period. Under the old system, the services found out only a few months before the beginning of a financial year how much money they would get, which caused uncertainty and disruption until the money was announced.
I would like more to be done about the provision of palliative care in children's hospices and for the National Institute for Health and Clinical Excellence further to develop standards in health and social care. I support the continued roll-out of the gold standards framework in palliative care, but the NHS desperately needs adequate and appropriate resources to deliver such standards. I estimate that the cost of delivering palliative care services is likely to be identified by NICE as requiring an additional £40 million funding a year for hospices and approximately £60 million for other palliative care services.
I want to see a more cohesive and community-based approach to palliative care and new initiatives to be engendered that provide care in a range of new and innovative settings. Partnerships should be encouraged between local NHS bodies, health and social care providers and the voluntary sector to harness the expertise of professionals to provide care-based quality standards. By allowing money to follow the patient, the patient should have the right to choose the place in which they, their families and their carers would most like to be placed.
Hospices have a vital role to play in palliative care—partly, but not exclusively, in relieving pressure on the NHS through the fantastic work that they do. Many patients at the end of their life require the specialised and continuous services that hospices can offer. Hospices must have the resources that they need to respond positively to the demands made on them and to provide the greatest care possible for some of the most vulnerable, sick and frail members of society, whether they are children or adults. That is why funding from the state to children's and adults' hospices must increase.
I know that the Minister is listening carefully to my hon. Friend and that he will do his best to help. Unfortunately, I am chairing a meeting at the same time as my hon. Friend's debate, so I am a bit stretched. He mentioned Little Havens, and I wonder whether he is aware that I was at a charity event on Saturday and that the lady who spoke to try to raise more funds said that if it were not for charitable giving continuing, by spring there would be no money left to continue the service. The situation is serious. Would my hon. Friend agree that the Minister should do everything that he can to underpin the funding so that there is some certainty in future arrangements?
I am grateful to my hon. Friend because he has hit the nail on the head with the hammer. There is a terrible strain on hospices year in and year out, particularly on children's hospices because of the disparity in state funding. The army of people who help to raise money for Little Havens cannot be praised enough for their fantastic work. However, the state has to help that army because 2 per cent. of funding from state sources for the hospice is, I think the Minister would agree, wrong and unfair.
As my hon. Friend knows, we fought a general election six months ago and the Conservative party was clear about what it believed should happen to the funding of children and adult hospices. We do not believe, and neither does the hospice movement, that the state should step in and pay more than a maximum of 49.9 per cent. of the funding. If the state were to pay more than that, it would start dictating terms because it would have the whip hand as the funding source. One of the strengths of the hospice movement is that it is charitable, relies on the voluntary sector and organises its own provision of care within strict guidelines for quality and standard.
The hospice movement does not want to be taken over by the state, and we do not want it to be taken over. However, we believe that that cannot be used as an excuse not to give a fair and reasonable amount of money to allow it to thrive. Every pound that the hospice movement raises to pay for the care of its client group is a pound less that the state has to pay. If only for that reason, the Government should be shamed into making more money available.
My hon. Friends and I fought the last election on the policy, as we did in 2001, that if we were returned to office we would increase funding for adult and children's hospices so that they got 40 per cent. of their funding for their day-to-day running costs from the state. That is a fair balance and would make a significant difference to the strains and pressures facing the hospice movement. That would give breathing space and extra money so that hospices would be able to run their services and provide care with less of a burden and worry about where the money was coming from. If that argument is valid, as I think it is, it is even more valid for children's hospices.
For a children's hospice to receive less than 5 per cent. of its funding from the state in this day and age is a travesty and a national disgrace. We are talking about young children and teenagers who, through no fault of their own, find themselves with life-limiting or serious illnesses and disabilities that place a tremendous strain on their families and carers. In some cases, without a hospice to step in and help, there would be no one else. Those families would be left on their own to fend for themselves with all the problems and pressures that causes. For the state to be content to provide less than 5 per cent., less than 5p in every pound spent on those vital and valuable services, is a national disgrace.
I urge the Minister to give serious consideration to the matter, because it has come up time and again in the House, and it will not go away by ignoring it or by flowery flannel, where Government spokesmen try to give the impression that the situation is infinitely better than it is. It is not good, and if the Minister does not believe that, and more importantly, if the Treasury does not believe that, let them go out into the country and visit children's hospices. Let them talk to that army of decent people who spend so much time working to raise money for hospices and find out from them exactly what is going on, the problems and difficulties that they are facing, and the possibilities of cuts in the services, of which we need more, not less.
First, I congratulate Mr. Burns on securing the debate. I listened to him carefully and agreed with most of what he said. However, in some ways, I part company with him, because he talked about the Government's record and I do not remember his Government delivering any better when they ran the country. I do not want him to lecture this Government on what they should be doing.
The hon. Gentleman made an allegation about the previous Government's record. It is slightly facile to compare something with the situation that prevailed over eight years ago, but given that he is obviously an authority on the subject, can he tell the House what was the percentage of funding for adult hospices when the Conservative Government left office, and what is it now? If he cannot say, I will.
The purpose of the debate is to secure support for hospices. I remember the record of the hon. Gentleman's Government: year in, year out, there were cuts in budgets.
I suspect that the hon. Gentleman is not familiar with the health service. If the Minister is honest, he will admit that there was never a 1p cut in total funding for the national health service from the day that Margaret Thatcher became Prime Minister in 1979 to the day that we left office in May 1997. In fact, there was a more than real-terms increase. As for hospice funding, when we left office, the state provided 33.5 per cent. of the day-to-day running of hospices to the hospice movement. At the moment, it is just under 32 per cent.
I am sure that the Minister will respond to the facts and figures, but my experience on Teesside is quite the opposite of what the hon. Gentleman is saying. This is an important debate, and I wish that he had not politicised it in the way that he has: it is tragic because the issue is important. If you want to battle on with figures, I am sure that the Minister will pull out the figures—
Order. I assure the hon. Gentleman that I do not want to battle on anything. Will he please address his remarks through the Chair to the hon. Member who is making the claims?
Thank you, Mr. Cook, for correcting me on the manner in which I should have addressed the hon. Gentleman.
I want to open up the debate in good faith, in trying to support much of what the hon. Member for West Chelmsford said. He mentioned the 38 children's hospices. One of them is in the north-east, and I am sure, Mr. Cook, that you are familiar with it, because it is on your patch, on the Stockton side, rather than the Tees valley on my side. I am sure that if you had not been chairing the debate you would have said something similar to what I am about to say.
I support much of what the hon. Gentleman said about concerns for hospices. I want the Minister to listen carefully to what I have to say; I am sure that he will. I speak as a friend and supporter of the Government in all that they have done in tackling problems of health and in all the support that they have given to the health service. I speak as a strong friend, not as a foe, as the hon. Gentleman has done. I shall focus on one issue, but first I want to praise the work of Butterwick house children's hospice in my area, because it provides and has provided a tremendous service for children in my area and in the north-east as a whole. I want to pick up on the issue of funding, which was addressed by the hon. Gentleman, because it is a concern for people in the north-east, including many of my constituents.
As I said, Butterwick house children's hospice provides a tremendous service, from which about 80 families in the north-east, many of whom are my constituents, benefit. It provides many useful services, such as complementary therapies, advice and pre- and post-death bereavement support and counselling. The hon. Gentleman referred to such services. The hospice provides a breathing space when things go wrong and support for families over 24 hours. It has had a tremendous impact on the quality of life of families and children in my area.
Butterwick house hospice and other hospices save the national health service a great deal of money. The resources and the bed space that a hospice provides facilitate tremendous support and ensure that people receive an excellent service, which should have been available in hospital. The mere fact that people are in a hospice saves the health service some money.
Butterwick house hospice enjoys tremendous support from my constituents and others throughout the Tees valley, but it feels that it is threatened by lack of funds. I have received a document from its chief executive, Mr. Graham Leggatt-Chidgey—no doubt he is familiar to you, Mr. Cook—about the funding concerns. He informs me that the hospice is in real difficulty because of funding problems. He tells me that the £145,000 annual grant that the hospice receives from the big lottery fund expires on
The £145,000 from the big lottery fund contributes 21 per cent. of the hospice's annual funding. Unless that funding is replaced, there is a real threat that Butterwick house's front-line services will have to be cut, which will have severe consequences for many families in my constituency and in the north-east as a whole. It will also have adverse effects on the NHS in the region, which will be forced to replace some of the specialist services provided by the hospice.
As the hon. Member for West Chelmsford said, many hospices have to deal with a large number of primary care trusts. Butterwick house has to negotiate with 15 PCTs for its funding, which presents huge complications and difficulties. I know that the Minister will tell me that the PCT reconfiguration will simplify some of these matters, but children's hospices face serious difficulty with rising PCT deficits and staff already in transitional mode, which has resulted in their not being willing to make any financial commitment for their successors. That is genuinely a serious worry, too.
I speak with great concern. I have never before raised the issue of hospices on the Floor of the House, but I raise it now because I am concerned. I know that the Minister really cares about these issues, so I am sure that he is taking serious account of what is being said. Local health authorities and social services have significant financial difficulties and restraints, and although they are willing to help children's hospices in most cases, they often find that their resources are scarce.
As the hon. Member for West Chelmsford said, children's hospices receive only 5 per cent. of funding from the Government. The consequence of that for Butterwick house was that in order to balance its books, it had to raise about £600,000 last year. All of us have been involved in various forms of fundraising, so we know that that is a lot of money for an organisation to raise, despite the fact that people in this country give generously. Given that adult hospices typically receive 35 per cent. of funding from the NHS, children with life-limiting and life-threatening illnesses seem to be getting a raw deal. I agreed with much of what the hon. Gentleman said, but I found the way in which he was saying it—against this Government—difficult to stomach. We must move away from the 5 per cent. figure: we must increase it. That cannot go on. It does not look very good. As someone who champions the Government and recognises the great contribution that they have made to tackling health problems, I speak as a strong friend to them. I urge the Minister to take note of this point: we must balance the level of funding to adult and children's hospices. I am not seeking more: parity would be enough. We are talking about a lot of money, but it can be seen as a challenge or target. We have to ensure that the funding that adult hospices receive will lead to further Government funding from here onwards. That is a goal that we should work towards.
We must ensure that hospices get support. People who work in them give their best because they believe in them and in the caring service. Butterwick house has made a tremendous contribution to our area. It will be a huge loss if the services there are cut, and there will be great concern in Teesside. I assure the Minister that as we approach the end of the financial year, Members from the Tees valley area will speak on this issue. No doubt you might speak on the issue, Mr. Cook, if there is a further need for debate. I want to make the Minister aware of this issue long before we get down that road, because it is of genuine concern.
The people at Butterwick hospice are not alarmist. I have never know them to express worry about dangers like this before. In all the years that I have been a Member—I have lived in Teesside for 21 years and know the area well—this is the first time that they have written to me in this spirit. Therefore, I ask the Minister to listen. We need some action to be taken. The hon. Member for West Chelmsford and I might have started on a wrong note, but his points were genuine. As someone who champions Butterwick hospice care, I passionately believe in the support that it gives our area in the north-east. I do not want the Minister suddenly to make an announcement; I know that he has to go away and think and put figures together, but I appeal to him. If he really wants to help, he should please consider the situation. If he is in a position to meet the people from Butterwick hospice, I am happy to bring them to the House with a delegation of right hon. and hon. Members from my area. I hope that you, Mr. Cook, can assist with this matter in future. We do not want the hospice to be threatened with service cuts toward the end of the financial year. I do not want the Minister to say, "Nobody made me aware of this," at that point. I seek his support on this and on the wider principle of increasing funding from 5 per cent. The Opposition suggested a figure of 49 per cent.
Well, I would be happy with 30 per cent. If we had equal parity with adult provision, I would be happy. I am not asking for the figure to be announced tomorrow. I want to see some movement from the Minister. Given the Government's excellent record it would be a credit to them and the Labour party if he shifted from the position that he holds today.
Perhaps I might act as a peacemaker between my hon. Friend Mr. Burns and Dr. Kumar. I will attempt to pour oil on troubled waters. Before I do so, I apologise again to the House that I am not able to be present throughout the debate. There are conflicting interests and someone is chairing the meeting that I am supposed to be chairing at the moment. I mean the Minister no discourtesy.
I congratulate my hon. Friend the Member for West Chelmsford on securing this extremely important debate. It is timely because Dame Cecily Saunders died this year. She was the remarkable lady who said that people go to hospices not to die, but to live. Certainly in the years that I have been a Member of Parliament, I have been moved by those women and men who work in a voluntary capacity in our hospices throughout the country. All hon. Members support their local hospices. All hon. Members have friends and relatives who, sadly, are served by them. This is not a party political matter. I am not interested in what the last Government or the Government before that did. I am only interested in what good news, as we move towards Christmas, the Minister can announce this morning.
No one has done more than my hon. Friend the Member for West Chelmsford to fight for resources for hospices in Essex. He is served locally by a splendid hospice but he will recall that when I represented Basildon, one of the two miracles that occurred in my area was that we built St Luke's hospice, which is a first-class hospice today, without any core funding. No millionaires lived locally, and if there had been any I would have been on their doorstep for obvious reasons.
As one of the original supporters of the national lottery, I felt that it should never be used, as it is today, for funding for education and health. I recognise that the Minister has no responsibility whatsoever for the way that lottery money is spent, but I believe it is a tragedy that more and more lottery money is spent on health and education. As we have the Olympics in 2012, there will be even less money from the lottery than at present. I hope that in his reply, the Minister will look specifically at the amount of money that the Government can give to the hospice movement.
My hon. Friend the Member for West Chelmsford and I served together on the Health Committee. The Minister, if he has a spare moment, can look back on the report on palliative care that we produced two or three years ago under the chairmanship of Mr. David Hinchliffe. We took evidence from a wide range of witnesses, who all shared with the Committee their increasing concern about the way that funding seemed to be slipping from core funding to charitable giving.
My hon. Friend the Member for West Chelmsford and I salute those who do voluntary work in Essex. We are both blessed to live in a county where people give so readily to charity. However, the fundraisers at Little Havens tell us very firmly that because of competing interests, there is less and less of an audience to which they can turn, and they are struggling to raise money from charitable giving. That is why I was delighted to be in Leigh-on-Sea's Salvation Army Christmas concert on Saturday, which raised a huge amount of money—as we know, the Salvation Army leads the way in such matters. The lady who addressed us said that it is becoming increasingly difficult, in terms of charitable money raising, to keep our hospices going. She was very concerned that unless the Government hike up the money—my hon. Friend the Member for West Chelmsford quoted the percentages earlier—there will be a crisis.
I am sure that, when he responds to the debate, the Minister will agree that we all want to be healthy. There is nothing as stressful as having a child who is ill. Ironically, it affects the child's loved ones rather more than it does the child, because children are very tough and resilient, but the parents and other relatives can go to pieces, for the very good reasons of stress and anxiety and the understanding that there are no miracle cures. Little Havens is a first-class hospice that looks after such children. It also provides respite care for their loved ones. Again, I say to my hon. Friend the Member for West Chelmsford—because some of the children from his area are looked after at Little Havens—that Little Havens wants to do more, but it cannot because of its tight budget.
In conclusion, I say to the Minister that all hon. Members recognise that the Treasury has its priorities. We all know that Health Ministers will do their best to fight for as big a share of the cake as they can get. However, we should never take for granted the work of our hospices, their army of volunteers and the number of charitable organisations that support their overall budget. The hospice movement wants to retain its strong sense of independence but, increasingly, it finds itself struggling. How can we say to parents, "This is going to be very difficult because we are running out of money and there is a limit to what we can do"? I do not suggest that we go in for blackmail, but there can be no greater priority than looking after children who are unwell at a time when emotions are running high. I congratulate my hon. Friend the Member for West Chelmsford on having enabled the House to consider these matters, and I very much look forward to hearing good news from the Minister about the future amounts of money that will be dedicated to hospices, not only in Essex but in the rest of the country as well.
I, too, congratulate Mr. Burns on having secured a debate on such an important and emotive topic, and recognise the passion and commitment with which he addressed his subject.
It has been said a few times that, nationally, there are 38 children's hospices. The nearest one to my constituency is Little Bridge House in north Devon. On a good day on the M5 and other roads, that is about two hours away, but frequently it takes rather longer to get there. There is certainly demand in greater Bristol for a new children's hospice. In the heart of my constituency, we have the Bristol Royal hospital for children. Bristol, West also has CLIC, the well-known charity for children with cancer and leukaemia, which was founded in Bristol. The Association of Children's Hospices is also based in Bristol. There are plans to build and equip a new children's hospice at Charlton Farm in Wraxall—just over the Avon gorge, which divides my constituency from Woodspring. However, it will cost £15 million to build and equip the new hospice and to endow the initial running costs. Some £5 million per annum will also need to be raised to run it jointly with the hospice that I mentioned in north Devon.
I was pleased recently to attend a fundraising ball; it will contribute in a small way towards the costs of running the hospice, but as has been mentioned, such charitable fundraising is competing with ever-growing demands from other parts of the health care system and from other charities that are trying to raise funds. The children's hospital in Bristol is having a Wallace and Gromit appeal to raise funds, while the hospice is having its Babe's Big appeal. We therefore have well-known children's characters competing to raise funds for essentially the same sort of care for children. I am also aware of the campaign being run by The Sun, although I was not aware, until the hon. Member for West Chelmsford mentioned it, of the campaign run by Somerfield. I am pleased to hear about it, however, because Somerfield is also a Bristol-based commercial company.
As has been mentioned, children's hospices receive about 5 per cent. of their funding on average from the state, but 15 of the 38 existing hospices get no state funding whatever. That compares with core funding of 28 to 30 per cent. for adult hospices. Surely, it is reasonable that hospices that give children essential palliative care, which might otherwise be provided by the NHS, should get a fair price for those services from the NHS or other health care commissioners. It is not immediately clear, however, how they can access some of those funds.
"It is for the national health service locally to make arrangements for financial support for both adults' and children's hospices, given the extent of local diversity both of the services provided and of alternative sources of local support."—[Hansard, 11 March 2002; Vol. 381, c. 818W.]
The restructuring of primary care trusts has been alluded to, and I wonder whether existing PCTs or even new ones have adequate funds to provide that support, particularly given the situation that I mentioned in the south-west, where children will typically come from a wide range of communities. A better way of directing funds towards hospices might therefore be to fund them on a regional level.
In the recent general election, the Labour party manifesto contained a commitment to increasing end-of-life palliative care, and I look forward to the Minister expanding on what that means, particularly for hospices. I share the concern expressed by other hon. Members that it would be unrealistic to expect the state to fund hospice care entirely, and we are certainly not arguing for that: it would undermine hospices' charity ethos, their volunteer base and their independence from the state. Surely, however, it is realistic to expect the state to pick up more than 0 per cent. of funding in 15 cases and more than 5 per cent. in 23 cases, and to at least match the average funding that is given to adult hospices. That would give children's hospices some degree of core funding and security so that they can provide an important and appreciated service in our communities. I look forward to hearing what the Minister has to say.
I too congratulate my hon. Friend Mr. Burns. It is a shame that more hon. Members have not been able to participate in the debate, but that does not reflect on the seriousness of its subject, which affects all hon. Members; in many cases, it will have done so directly and personally, because relatives and friends will have used the facilities that children's hospices provide. They do an essential job.
I declare an interest as a patron of the St. Barnabas hospice in Worthing, which is the parent organisation of a recently set up children's hospice, the Chestnut Tree house, which is a fantastic facility on the outskirts of Worthing. Staff at that hospice have already looked after many of my constituents. St. Barnabas has been running for 32 years, and in that time has provided direct care to 20,000 people. That is no mean achievement.
It is estimated that, generally, hospices must provide about 80 per cent. of all palliative care in the United Kingdom. Part of the problem is that the provision of hospices is subject to something of a postcode lottery. There is patchiness in the provision of children's hospices. As with many charitable causes, they are quite often less easy to find in less affluent areas. That results in a double whammy whereby many facilities are not available in areas where they are desperately needed.
Hon. Members have already mentioned the legacy of Dame Cicely Saunders who died this year, having set up the first hospice in 1967 and the first children's hospice in Oxford in 1982. The Chestnut Tree house hospice was opened for overnight care in April 2004, and has already cared for 135 children and young adults with life-limiting conditions. It has also provided services for almost 500 family members. I wish to pay tribute to Monica Ridley, who recently stood down as chairman of the trustees of the Chestnut Tree house hospice, and to Hugh Lowson, who, as chief executive of St. Barnabas, has made a great impact on that excellent resource over the past few years.
All hon. Members agree that we owe a great debt of gratitude to the volunteers who make the hospice movement possible. They are unsung heroes who do much to take the pressures and strains off the national health service, which would otherwise have to pick up the tab. All hon. Members have, in affectionate terms, mentioned hospices in, or close to, their constituencies. We heard about Little Havens in Essex, Butterwick in the constituency of Dr. Kumar, St. Luke's hospice in Southend, and Little Bridge House in Devon, which Stephen Williams mentioned. The latter hospice is two hours away from the hon. Gentleman's constituency, which reinforces my point about the patchiness of provision. There are other high-profile children's hospices that do a fantastic job, such as the Shooting Stars hospice in south-west London and the CHASE hospice in Surrey, which has been at the forefront of a campaign to secure a fairer deal on funding.
My hon. Friend the Member for West Chelmsford made some good points, especially on how important it is that hospices are able to keep their independence. There is a strength and wealth of talent and good will in the hospice movement. The last thing that hospices would want is to be nationalised in some way. As the hon. Member for Middlesbrough, South and East Cleveland put it, we must achieve something approaching parity of funding with adult hospices. He made some good points about the range of care that Butterwick hospice is able to offer. It is not just a matter of the last few days of someone's life; especially for children, it is a matter of their going there for short stays to take the pressure off parents and to take advantage of specialised facilities and complementary therapies. The hon. Gentleman freely admitted that that hospice is facing a funding crisis. I defy any hon. Member who has been in touch with a local hospice to come away with a different story.
Nationally, about 20,000 children are suffering from life-limiting diseases. An average of around 4,300 of those children and their families are assisted by hospices, but there are only a few hundred acute beds available in children's hospices. Those figures apply to the 38 fully operational children's hospices and another five that are planned or being built.
It is interesting to reflect on the nature of the diseases that children's hospices treat. Some 96 per cent. of cases that are treated in adult hospices tend to be of some form of cancer. Mercifully, only one in 600 children under the age of 15 develops a cancer, and children respond differently to treatment than adults do. Some diseases that children's hospices deal with are: Duchenne muscular dystrophy, which affects 100 boys born each year; Batten disease, or neuronal ceroid lipofuscinosis—that will really frustrate Hansard—which affects one in 30,000 births and leads to a progressive and incurable deterioration of the brain and nervous system; Rett syndrome, which affects more than one in 10,000 females and causes profound and multiple disabilities; and cystic fibrosis, with which hon. Members will be more familiar.
Children with those diseases now live well into their teens, so many fall into the gap that exists between adult and child provision. Therefore children with the aforementioned diseases form an increasing body. As a result of advances in medical technology, more children can live much longer with diseases from which they would have been expected to have only a short lifespan. Surely children's hospices' work load will increase as the pool of children with whom they will deal increases. Unfortunately, those diseases will still be around until we find a cure, but they are much more manageable, and children can, fortunately, often live on into adult life.
First and foremost, children's hospices deal with health problems. In a country that has a national health service that is charged to deal with such problems, surely hospices should be an integrated beneficiary of national health funding. Even at the most advanced stages of a disease, caring for the dying is a fundamental part of health care and should not be treated as some novelty good cause that may be lucky enough to pick up public funds through a lottery board's philanthropy.
I fear that the care of children with life-limiting conditions often does not fit into the Government's obsession with a health service that is driven by target tables, waiting-list numbers, hospital admission numbers and bed blocking. How does one measure the outcomes of looking after children who have life-limiting conditions? Obviously, one does not measure those outcomes on the basis of how long they stay in hospital, by minimising the cost of their drug treatment, or by curing their diseases and cutting down on their readmissions. One does not measure those outcomes based on comparative morbidity rates or on the number of complaints made about treatment. They can be measured only by the length of time for which quality of life can be extended, the impact of physical pain relief on the child and his or her emotional well-being, and, of course, the impact on the family and how they cope at a tremendously emotional and traumatic time before and after their child has passed away. That is what children's hospices are all about.
One cannot easily evaluate, quantify, tick boxes for or comply with target tables for children's hospices. They are measured by the comfort and relief that they bring. As someone put it: "Hospices are not places where people go to die; a hospice is somewhere where you can come to life." That is the modern vision of palliative care.
On the subject of funding, many hon. Members have already mentioned that children's hospices receive, on average, little more than 5 per cent. of their funds from public sources. The former Minister for Public Health, Melanie Johnson, raised the problem. She stated:
"Funding the services provided by hospices is a matter for negotiation between the hospice concerned and the NHS primary care trusts to which the hospice provides a service. There are no limits to the amount of funding which may be provided; this is for local decision."—[Hansard, House of Commons, 16 September 2004; Vol. 424, c. 1759W.]
The problem is that there are no limits to the minimum amount that primary care trusts can provide. In many cases, because it is not a statutory requirement and because of the great funding pressures on PCTs, they provide zero funding for children's hospices. Unless there is a statutory duty on PCTs to provide funding, I am afraid that, because of priorities and because PCTs are strapped for cash, children's hospices will not get a look-in, whatever we might say here. The Minister and his Government must take direct action to encourage PCTs to provide funding.
The new opportunities fund—now the big lottery fund—provided £48 million over three years for 130 palliative care projects. The funding runs out at the end of March 2006. At present, there are no plans to renew that funding. I shall be interested to hear what the Minister has to say about his intentions, now that March 2006 is just four months away. Children's hospices have received little, if any, of the extra money from the cancer plan funding that the Government established some years ago. The Government promised to double the level of investment in palliative care, but, often, that extra investment has got lost in PCTs and has not found its way to end use in hospices—most certainly not children's hospices.
In addition, in the past few years there have been many extra funding pressures on charitable institutions such as children's hospices from national insurance increases, extra pay pressure from Agenda for Change, price inflation of 7 to 9 per cent. for pharmaceutical products that are heavily used in hospices, extra requirements under the Care Standards Act 2000, and the estimated £400 million of VAT that is not reclaimable. I hope that the Minister will be able to give assurances of a more sympathetic financial treatment of children's hospices from the Treasury in future.
I remember speaking on this subject in the House three years ago. It is not a new subject or a new problem, but it is getting worse. I was told that new funds such as Futurebuilders would help to deal with the problem. Futurebuilders is a fund designed for voluntary bodies. I tabled a parliamentary question recently to ask how much money Futurebuilders had paid out, and how much of that had gone to children's hospices. Out of a promised fund of £120 million, so far about £4.5 million has been paid to voluntary bodies, of which not one penny piece has gone to any hospice, let alone any children's hospice.
Perhaps we should not be surprised about that, because to qualify for funding from Futurebuilders the applicant must be able to show that 50 per cent. of core funding is sustainable. However, children's hospices rely on very transient funding. We cannot say that a given number of people will die in the coming year and leave legacies to a hospice in their wills. Charitable fundraising is, as we know, unpredictable. It is virtually impossible for those hospices to get funding from Futurebuilders.
We owe an enormous debt of gratitude to the carers of the children who use children's hospices. There are about 6 million carers in this country, more than 2 million of whom are aged over 60, and 20 per cent. of whom are over 70. They do an enormous amount, for which they get little gratitude, and without them the state would have to pick up the tab and things would be much more difficult. We should be making their job easier, not harder.
I want to end my remarks by relating the problem to the Chestnut Tree house. My local children's hospice is one of those 15 that receive zero funds from the public purse. It has been losing staff because of wage pressures. Charitable fundraising has raised some £600,000 in the past year, but it takes almost double that to run the hospice. Therefore, the parent hospice, St. Barnabas, must subsidise its work. That is unsustainable. Donations have been difficult recently because of all the competing charitable pressures, not least the tsunami. We all know the enormous amount of fundraising that was done for that.
The Chestnut Tree house has four acute beds at present, plus one for emergencies, but it was planned that it would have eight, plus two for emergencies. It has received no money from Children in Need, despite repeated applications to that charity. We are told that West Sussex has had quite enough, so it is tough. It used its grant from the New Opportunities Fund to develop a very sophisticated and welcome bereavement counselling support service for parents of children who have gone into a hospice.
All in all, hospice funding is highly unsatisfactory and it is time that things changed. It is particularly unsatisfactory that many hospices must shrink their services at a time of growing demand. Effectively, many hospices are subsidising the NHS by providing services that it would otherwise have to provide. That contravenes Charity Commission rules. Is that really the way in which to fund health care? Would it be acceptable for the Government to seek to fulfil their target to recruit so many thousands of doctors or to reduce waiting times for hip operations to less than 18 months through random grants from one of the lottery funds? Of course it would not, so why should palliative care for children be treated as a bonus good cause that just happened to come up trumps this year under the Government's current definition of what worthy cause needs to benefit from the British public's gambling largesse? What happens when that funding stream runs out next year? Faced with those pressures, how can hospices plan long-term expansion strategies?
Health policy is not rocket science. It must treat palliative care and hospices as a mainstream health activity, and it must feature in the health strategy of all the NHS providers as a matter of course. We need fair funding through the NHS, not funding at the whim of the lottery, which sends out the message that the Government do not regard hospices as a priority. Surely we should be doing everything that we can to help to nurture, to encourage and to expand the tremendous legacy of Dame Cicely Saunders.
The Government really should be doing more to support the fantastic work done by children's hospices, and I hope that we will hear some wise and solid words from the Minister and the assurance that the Government will at last take children's hospices seriously as a mainstream provider of palliative care in the NHS.
I am pleased to serve under your chairmanship again, Mr. Chope.
I congratulate Mr. Burns on securing the debate, and my hon. Friend Jeff Ennis, who has done an extraordinary amount in the past few years to challenge the issue in the House. I also congratulate my hon. Friend Mr. Flello, who is not in the Chamber this morning but who very much wanted to be. He secured an Adjournment debate on the subject on
In the past three months, I have had the opportunity in the course of my ministerial duties to meet some of the most extraordinary people and public servants at work in this country. In Stoke, I met the people behind the Donna Louise trust and some of the families who had benefited so much from the services with which the hospice provides the local community.
As I went around the hospice and met some of the children who use its services, as well as some of the families of those children, one parent really helped me to understand the difference that some of these hospices make to families when she said that sometimes the pressure of looking after a child with a life-limiting illness was so great that all sorts of things crept into family life. She told me that it sometimes felt as if the whole fabric of goodness in the family was unravelling. That helped me to understand that, as well as supporting hospices, there is an enormous amount that we need to do to support carers.
The steps that we have taken to increase support for carers, which is up to £185 million this year, is a vital part of the debate, too. I saw some of the fantastic games rooms that the trust has been able to provide for teenagers. I met one of the children, Tilly, who uses the service there and told me about the fantastic Jacuzzi that makes her visits to the hospice very special.
The trust is only one of five or six different places in which I have seen the most extraordinary services for children in the past two or three months. In Liverpool, I heard from Lynda Brook, a paediatric palliative care consultant, who is behind the reorganisation and development of services for children at Alder Hey hospital. She is also instrumental in developing the Alder Hey at-home service, which is a new service that Alder Hey is pioneering.
At Christie hospital NHS trust, I met Sam Smith and Pauline Sutherland, the paediatric oncology liaison nurse, who shared with me the ways in which they are reshaping services for teenagers. They made the point that the manner of the care must take account of the nature of the individual, because we will be able to provide care sensitively, compassionately and appropriately only if we take account of the way in which people live their lives.
At Great Ormond street hospital I met the team that is working with children that have cystic fibrosis, and I learned about the extraordinary advances that the NHS has been made in treating such children. I also met Dr. Carlos de Sousa, a pioneering consultant who is developing an extraordinary new treatment for people with conditions such as uncontrollable epilepsy.
I walked around the ward with Dr. de Sousa, where we met one of the families whose children are benefiting from an extraordinary new technique. It is called invasive monitoring of the brain, and it allows surgeons to see which bits of the brain are involved in what sorts of activities, and to work out which bits of the brain need treating if uncontrollable epilepsy is to be dealt with effectively. I stood in the room with the family, we looked at one another, and we all agreed that the NHS is indeed at the cutting edge of medical science. It is the medical equivalent of rocket science.
We are fortunate to have world-leading medical researchers, consultants and surgeons. In our local communities, we have extraordinary public servants working in NHS community nursing teams; and we have the hospice movement, which has grown to a record strength over the past few years. I join the hon. Member for West Chelmsford in recording my admiration and thanks for the parents and families that are involved in that movement.
Our challenge is to weave those experts—all those who provide care and support—into a web of care around children and their families. The debate about caring for children with life-limiting illnesses is not only about children's hospices, it is also about providing an entire web of care.
As the hon. Member for West Chelmsford said, the children's hospice movement has grown up over the past 22 years. Since 1997, there have been seven key steps.
I said at the beginning that I started my travels of the past few months at the Donna Louise trust. That is the principal hospice that I have visited on site, but I have met multi-disciplinary teams working with hospices throughout the country.
The third step also occurred in 1998, when a team headed by the Treasury invited applications to establish Diana children's community nursing teams throughout the country. They were to build on the work undertaken in the first pilot programme and blaze a trail for the development of home care for children with life-threatening illnesses. Additional funding of about £1.5 million to support that project in England was provided by the Treasury.
The fourth step was the partnership that became possible in 1998 when the Association of Children's Hospices was registered as a charity to promote the interest of the children's hospice movement. Since then, the Department of Health has worked closely with the association to develop a better understanding of the issues on both sides. In particular, the Department has commissioned the association to provide quality assurance packages to enhance the quality of care provided by children's hospices.
Step five, as the hon. Gentleman mentioned, took place in 2000, when, after discussions with the New Opportunities Fund, about £45 million was made available to 135 projects, including 71 awards to home-based palliative care teams. Step six took place in 2003, when the National Institute for Health and Clinical Excellence commissioned the national collaborating centre for cancer to develop service guidance on child and adolescent cancer services, including palliative care and bereavement support. NICE service guidance supports the implementation of the national cancer plan and also forms an additional structure to provide support for children's palliative care needs. The seventh step involved work with ACH, where the Department funded the production of care pathway guidance launched last year to complement the national service framework on disabled children and young people.
That is the past, so I will now talk about the future. As hon. Members from all parties have argued for some time, the steps taken are not enough and we must and can go further. Several trends emerge from the work on hospices undertaken by ACH. Often hospices are set up after a family's tragic struggle, and they create an enormous amount of energy to see through an important dream backed through the strength of local communities. As a former native of Harlow I well know the generosity and support that is available in Essex. To help ensure that that energy is channelled in the right way, the Department of Health can do a great deal to support innovative services.
Part of the answer has to be how we support hospices in their plan. To support those ambitions the Department provided funding for ACH to develop a toolkit on how children's hospices work, which aims to provide references to the sources of information that are required to plan and establish services so that any new services that are being set up can make informed decisions about what services the families would find most helpful. As Tim Loughton pointed out, children with life-threatening illnesses often have different conditions and needs. The services that hospices need to provide are often varied. However, the toolkit provides a much better understanding of what is involved in starting and running a hospice and an overview of some of the challenges.
Although there is support for the hospice movement, the Government have to bear their share of the responsibility. We must take three steps. First—this is probably the crucial point—we must strengthen the support provided by the local NHS for hospices. We have tripled the amount of money that will go into the health service by 2007–08 to £92 billion. At the heart of this morning's debate is how we make that money work for local people who provide hospices for children. The way in which the local national health services will work together is important.
As my hon. Friend the Member for Barnsley, East and Mexborough has said on a number of occasions, many hospices provide services over wide areas. I know that the hospice near his community confronts that challenge. We need to ensure that local health service commissioners work together effectively to provide financing. I have launched dedicated guidance for that purpose that will build on and make real the intentions expressed in the NSF for children and young people, which is mandatory for the NHS. I have laid copies of the guide in the Library, and it will support health care organisations, local authorities and other partners. Of course, a range of partners are involved who are working together in children's trusts to understand and develop children's palliative care services and make the mandatory NSF a reality. The guide is important because it sets out the service model, describes the elements that need to be involved and gives practical examples of the services that need to be provided and how they should look.
Secondly, we must make specialist commissioning sharper. My noble Friend, Lord Warner, made a ministerial statement on
Finally, I want to consider the question of resources. I made an announcement to the House in the Adjournment debate on
We have only a few minutes left, and we have heard an awful lot about what the Government do and must do. Now we hear about a White Paper. However, on
I can help the hon. Gentleman with that. My understanding, from the advice that I have received, is that the New Opportunities Fund money expires in 2007, not 2006. I shall happily write to the hon. Gentleman to correct those details if I am mistaken. The detail about how we proceed with our commitment will be in the White Paper, which will be published at the turn of the year. We have held several meetings with the national cancer director and officials. We are also in discussion with people who run children's hospices. Much of the planning work is some way through, but the precise details must wait for the White Paper.
I hope that the Minister is not trying to talk himself out. He has spoken for 16 minutes and has three minutes left. The nub of the debate, for every hon. Member who spoke, was whether the Government would give a fairer share of money to children's hospices, compared with the amount for adult hospices. The Minister has not dealt with that and is leaving it to the tail end of his speech.
I regret the manner in which the hon. Gentleman thinks the debate should be conducted. I think that I have made it clear that we must do three things to strengthen funding for children's hospices. We must ensure that specialised commissioning is fit for the purpose and that PCTs provide adequate funding and know how to go about that; we shall also extend funding for children's hospices by extending the manifesto pledge that we put to the British people in May. The way in which we shall implement that will be set out in the White Paper that will be published at the turn of the year.
I thank my hon. Friend for his earlier kind remarks about my campaigning zeal. I shall try to give some comfort to Mr. Burns by asking whether the onus now is on PCTs to engage actively with local children's hospices in trying to set up work agreements and contracts. Previously the children's hospices have always had to engage the PCTs in the process. Are we shifting the onus for who must engage with whom?
The way in which PCTs should operate is set out clearly in the guide that I have placed in the Library. The job is considerably easier for the extra £16 billion that is going into PCTs. We are not quite clear whether that commitment is matched by the Conservative party, but I am clear about the fact that it is helping local health service commissioners.
To strengthen end-of-life care for children with a life-limiting illness we must do a number of things. This is not just a debate about children's hospices. It is also a debate about how we strengthen NHS community care for children and how we strengthen tertiary care and the range of other services that are provided by NHS consultants and surgeons. We strongly believe that treatment for children with a life-threatening illness will be best when the NHS works together with the hospice movement, and that is exactly what we plan to see happen.