§ Motion made, and Question proposed, That this House do now adjourn.—[Mr. Burns.]
10.21 pm§ Dr. Robert Spink (Castle Point)Britain is truly great. We lead the world in many areas, but in hospice care, we are—[Interruption.]
§ Mr. Deputy Speaker (Sir Geoffrey Lofthouse)Order. Will hon. Members who are leaving the Chamber please do so quietly?
§ Dr. SpinkIn hospice care, Britain is entirely unchallenged. Our hospice movement is held in unequivocally high esteem abroad as well as in the House. There is no—[Interruption.]
§ Mr. Deputy SpeakerOrder. I am having great difficulty in hearing the hon. Gentleman. Will hon. Members please have their conversations outside the Chamber?
§ Dr. SpinkThere is no political edge to this debate. All parties value and cherish the superb hospice movement. I welcome to this debate colleagues and friends from the three main parties and thank them for their thoughtful and kind support. The only Labour Member who represents an Essex constituency, the hon. Member for Thurrock (Mr. Mackinlay), has sent his apologies for his absence. He is genuinely supportive and genuinely otherwise engaged.
Our children are everything. Early on a cold December morning, a small child was born and was obviously very unwell. The doctors and nurses did all they could, but the negative prognosis seemed inescapable. I looked into the eyes of the father and began to understand the depth of human despair. I was looking in a mirror, and by the grace of God, my son survived. In part, that is why I am opposed to euthanasia and why I sincerely believe that it would be very dangerous were it ever legalised. However, I do not want to get into that debate—important though it is.
I am wearing the badge of the hospice movement's national sunflower campaign. On Saturday, I attended many local events, including the splendid Methodist Church garden party at the home of Richard and Jill Reeves in Benfleet. At those events, many sunflowers were worn. The sunflower campaign, like the Little Haven project in Essex, has caught the public's imagination and enthusiasm. The public know the strength and importance of our hospice movement and cherish it deeply. I have enormous admiration for those who contribute to the movement by volunteering, fund raising or working within the movement, and I especially thank all those involved in palliative care in the community, particularly the Macmillan nurses—they are wonderful people.
Last Sunday, I attended my constituency's annual show, which was generously sponsored by Mobil. I was deeply moved to see Robin Reed, on behalf of all the staff of Mobil, present a cheque for more than £30,000 to the Eastern area hospice. The Mobil staff raised that massive amount by exercising their skill and professionalism in further driving up safety standards for major plant 128 overhauls—a worthy achievement for Mobil and a wonderful boost for the hospice movement. I congratulate Mobil and I sincerely thank its staff.
The focus of the debate is the special nature and character of our wonderful children's hospices. They are uniquely different from adult hospices and I hope to show how they augment what is a very important part of our health and social care services. I must first acknowledge the detailed briefings that I have been given by Robin Fanshawe of Little Haven and Graham Collins of the Quidenham children's hospice in Norfolk. I draw heavily on those briefings tonight.
Perhaps it will help if I start with a local anecdote. Fair Havens hospice in Southend has done marvellous work as an adult hospice, but came under great pressure from time to time to take a child with terminal illness. On one occasion, this was agreed. There was certainly some benefit for the family and perhaps also for the child, but she was too ill for the carers to be sure. However, her crying caused distress to adult patients in the hospice. It was therefore decided that future child referrals would have to be refused as, apart from that aspect, there are many other differences between adult and children's hospice care.
Let me start at the beginning of children's hospices, which was an initiative of Sister Frances Dominique in 1982 in Oxford to set up the first children's hospice in the world. You see, Mr. Deputy Speaker, we are genuinely leading the world in this area. The hospice was named Helen house after a little girl who had a brain tumour. This beautiful and once lively little child was left totally helpless, unable to communicate and requiring constant care. Sister Frances was moved by the plight of Helen and her family. Being a trained nurse, she gave Helen's parents much needed respite.
It was clear to Sister Frances that many families would be in the same position, and that was the start of the children's hospice movement. From that genesis evolved the original model that the world was to accept and follow. Fourteen years on, there are 11 children's hospices fully operational in the UK and several more at various stages of development. These help families in the UK who have a child suffering from a life-threatening or life-limiting condition.
A life-threatening condition is defined as one in which medical intervention may prove succesful but which carries a substantial possibility of premature death, or one which makes a child especially vulnerable to opportunistic infections which may prove fatal; heart disease or cancer are examples. A life-limiting condition is defined as a progressive degenerative condition that is likely to lead to premature death; for instance, cystic fibrosis or muscular dystrophy. It is important to note that children's hospices differ from adult hospices in that fewer than 15 per cent. of our children suffer from cancer in any form. Most children in hospices are suffering from long-term progressive disorders.
The aim of the children's hospice movement is to enable families to care for their children at home most of the time. In that way, the children can continue to attend school, see their friends and generally continue a normal routine as far as possible. Clearly, that is very important to the child.
Hospices offer practical, emotional and spiritual support and friendship to the children and their families and recognise the child's home as the centre of the care 129 and the family as the experts in that care. The hospice team likes to be involved with the family before the child's illness reaches a terminal stage, if that is what is to be. Early relationships will be invaluable at the time of death. The needs of each member of the family are equally important and the hospice movement is committed to all family members.
Stays booked for respite typically last from one day to two weeks, but at times of emergency—social or medical—or for terminal care, they can be extended over a longer period. That is why it is so important that the ethos, mood and even the architecture and furnishings of the hospices all create a cheerful and homely, happy atmosphere. Hospices offer accompanied or unaccompanied respite care, as well as terminal care and long-term bereavement care.
Hospices try to be flexible in response to the individual needs of the children and families, working in full co-operation with all the other services, and, of course, all hon. Members will realise that no charge is made to the families for the care offered. Parents receive immense relief from an uninterrupted night's sleep, or just having time to talk together or walk together without the children. Hospices have kept families together and saved marriages.
A hospice is not a facility, or a collection of equipment, buildings and people with skills and knowledge—it is much more than that. It is a philosophy—a Christian philosophy. If hon. Members visit a children's hospice, as many do, they will be amazed at what they find. A hospice is not a sad place, even though many children have a poor prognosis. Whole families are usually staying at hospices—well children and pets are often running around and the sick children all enjoy being a part of that loving, happy, joyful and sometimes even noisy environment. In addition, members of the care team maintain contact and support for the families at home and, where necessary, provide practical help there.
In 1992, the Government provided £1 million per year for five years to pilot new services in England for children with life-threatening conditions and their families. The Department of Health called for applications and received hundreds from throughout the country. That clearly demonstrated the need. Thirty-two projects were selected, covering hospital-based services, community home nursing services, voluntary respite and sitting services, counselling and psychological support. None of the money went towards the running costs of existing children's hospices.
Also in 1992, Professor Alison While of King's college commenced research designed to examine the needs and provision of hospice care for children. Professor While's study might well be able to substantiate the figure of 20,000 children with life-threatening illnesses in this country.
It is estimated that there is a need for about 20 to 25 children's hospices in the foreseeable future and that that need will remain static. The hospices are mostly planned and should be—as they are—spread across the country, to fulfil the special hospice philosophy.
The Little Haven children's hospice is being built in my constituency on a 120-acre site at Daws Heath. It is a delightful, wooded site in the green belt and I congratulate the local council and particularly Mr. Ian Burchill, the director of planning. on their foresight in assisting that unique development.
130 Twenty acres of the site will be used for hospice grounds and the remaining 100 acres will become a nature reserve under the care of the excellent Essex wildlife trust. Little Haven is easily accessible from the Al27 from all over Essex and beyond, including outer London and north Kent. I am delighted that my hon. Friend the Member for Chelmsford (Mr. Burns) is sitting on the Treasury Bench and listening to the debate, as it will benefit many of his constituents. I know that it has his full support.
Lord Braybrooke, the Lord Lieutenant of Essex, has generously agreed to cut the ceremonial first turf in early September. I also understand that Sister Frances Dominique will join us for the ceremony, which will be a great honour for my constituency. Building and commissioning will take about a year. It is hoped that the first families will be in residence in the hospice in autumn 1997.
Little Haven is uniquely well situated for access as well as for its serenity and the peaceful nature of its setting in the green belt of my constituency. The groundswell of support from the people of Essex and beyond has been nothing short of phenomenal. So far, £1.35 million has been raised towards the £3 million needed for building and the first year's running costs. It will be the first hospice, and possibly the only one in the south-east, to care for terminally ill children below the age of 18.
I am tempted to mention the wonderful efforts of specific companies, schools, individuals and even local Conservative clubs who are fund raising for Little Haven, but it would be invidious to mention any one since so many have made magnificent efforts and are still doing so. With Lord and Lady Braybrooke and others, I am a patron of the Little Haven children's hospice appeal. I note that my hon. Friend the Member for Southend, East (Sir T. Taylor), who is also a patron, is here. With your permission, Mr. Deputy Speaker, perhaps he will be able to speak briefly.
My small efforts for the hospice pale into insignificance compared with the wonderful support that the project is receiving from many of my constituents. My hon. Friend the Member for Basildon (Mr. Amess), who is also here, is one of the best friends of the hospice movement in the House. He and I will be promoting a fund-raising dinner for the hospice movement in the Palace of Westminster this autumn. We hope that it will be supported by the spouses of many Essex Members. We are doing that because it is important that the momentum of fund raising is maintained to secure the hospice's long-term future.
God forbid that any of our families will ever need to call upon the hospices, but God knows, if we do, they will be there. Little Haven brings great credit to my constituency. I am honoured to host it. I had thought that I might mention one or two members of staff at Little Haven and at Fair Havens hospice, Westcliff, who are so closely involved. Many of them have a dual role in both hospices. However, that would be wrong, because the essence of the project is team work. All the staff have an essential part to play. They all work together for the ultimate benefit of the children and families whom they support.
I shall briefly deal with funding for hospices generally. Everyone in the movement understands the importance of the voluntary charitable basis of the initial establishment of hospices and of their long-term running costs. That predominantly voluntary source of funding is one of the 131 great and uniquely British strengths of our hospice movement and should not in any way be underestimated or undermined. That is not to say that there should be no input from public funds. Some hospices receive a significant proportion of their funding from various public sources; others receive little or nothing.
The Government must develop a policy for the funding of hospices, including children's hospices. I suspect that a balance of between a quarter and a half drawn from public funding would be appropriate in the medium term as an average across the hospice movement. That money would be well spent, because it would reduce the burden on the national health service in the long run. I hope that my hon. Friend the Minister will acknowledge that the funding debate is open and that the question should be addressed.
Sadly, Hope house, a new children's hospice in Oswestry, is struggling to utilise all its beds, because of a funding shortfall. I congratulate the Daily Post in Liverpool on its campaign to raise funds for Hope house. If all the county council social services departments that are served by Hope house gave £25,000 from their multi-million pound community care budgets, it would be able to give the care that is so much needed, which would relieve the burden on the state in the longer run.
Finally, the national lottery has been a tremendous success and has raised about £2 billion of additional funds for good causes in this country, which I welcome. There could be few more deserving or more popular good causes than the wonderful hospice movement, particularly children's hospices. I do not want to end on a controversial note, but some lottery giving to the arts, sports and some politically correct charities does not sit comfortably with the views of those who buy the lottery tickets. But that is another debate.
§ Mr. David Amess (Basildon)rose
§ Mr. Deputy SpeakerOrder. Is it the wish of the Minister that the two hon. Gentlemen participate in the 11 minutes left to him to answer?
§ The Parliamentary Under-Secretary of State for Health (Mr. John Horam)indicated assent.
§ Sir Teddy Taylor (Southend, East)I welcome what my hon. Friend the Member for Castle Point (Dr. Spink) has said about the children's hospice in his constituency. He will know that the action was initiated in the Fair Havens hospice, with which I have had the pleasure of being associated as its president for many years.
The crucial factor that I hope that hon. Members will bear in mind is that the hospice movement is a costly organisation to run. I was sometimes appalled at management meetings at the way in which others looked forward to the expansion of the hospice movement because the resources are based simply on faith and optimism. However, the other committee members have always been right and I have been wrong—the money has always been made available.
132 As my hon. Friend has rightly said, the hospice movement in Southend has been safeguarded and developed because of astonishing generosity on the part of the community. Only last week I had the pleasure of being on the Southend seafront when a gentleman whose relative had been in the hospice said that he wanted to show his gratitude by cycling all the way from Glasgow to Southend-on-Sea. I know that it will be quite a journey as it is one that I have undertaken in other ways on many occasions.
The only thing that worries me is that, while I have the optimism and faith because of my contact with Fair Havens hospice in Southend, it has been developing and expanding at a furious pace. We provide a wonderful home-care service and aftercare; we have developed the service in many ways and we find that the costs are substantially increasing. The hospice has been kept going owing to the generosity of the people of Southend.
There are many problems in any such movement. There is a huge strain on the staff who have a very special job to do. While I am not asking the Minister to do anything specific, I hope that he will ensure that the Government will keep in touch with the hospice movement and that Ministers will pay regular visits to the hospices to give them the encouragement that they richly deserve. Like my hon. Friend, I should like to congratulate the hospice movement on a fantastic job that has been done thoroughly, with great integrity and devotion. I hope that it will go from strength to strength, and I hope that the children's hospice in my hon. Friend's constituency will provide the same level of service, care and Christian service that Fair Havens has for so many people over the years.
§ Mr. David Amess (Basildon)I congratulate my hon. Friend the Member for Castle Point (Dr. Spink) on securing this debate tonight. It is particularly appropriate because I am advised that my hon. Friend's son George was today awarded a distinction in surgery and MBBS honours at King's, London—and that in addition to a host of other educational qualifications that he has. I only hope that some of my children do as well as my hon. Friend's son.
In Basildon we have St Luke's; Fair Havens is in the constituency of my right hon. Friend the Member for Southend, West (Mr. Channon). We all pray that eventually cancer is eradicated. For a long time there has been a gap in our area in terms of the care for children. All of us with children can well appreciate the terrible consequences when a child becomes ill. In Basildon, a member of the general public has founded a support group known as Cushions, which tries to give some support to the parents of children with cancer. The Little Haven project is also doing magnificent work.
My hon. Friend the Member for Castle Point touched on the fact that the partners of Essex Members will endeavour to raise funds over the course of the coming year.
I conclude with a quotation from the team at the Little Haven hospice:
As a team we are very conscious of our own inadequacies. We feel that we are one group of people offering simply to be alongside another group of people sharing something of their immense pain and brokenness and knowing that we receive as much, probably more, than we can give. We do not have clever answers. but we are willing to share ourselves and our vulnerability.It is very difficult to add to that.
§ The Parliamentary Under-Secretary of State for Health (Mr. John Horam)I too congratulate my hon. Friend the Member for Castle Point (Dr. Spink) on raising this very important matter. I congratulate him on a fluent and warm-hearted speech. Children's hospices have come a long way since the first purpose-built hospice in Britain—or anywhere in the world—was opened in Oxford in 1982.
Increasingly, we are recognising the important role that children's hospices play in the care of children suffering from life-threatening or life-limiting illnesses, for whom there is no hope of cure. Children have needs that are very different from adults', and different skills are required to care for them. Perhaps more meaningful for many is the important part that hospices can play in bringing support to the families of those children. More and more it is being seen that the hospices go beyond the care of a terminally ill child and provide support for the whole family.
Many, if not all, hospices now include family rooms and accommodation for brothers and sisters. That gives all the family, especially the parents, the chance of respite and a break from constant attendance to their child. They get a chance to relax in a homely, non-hospital environment with others of similar experiences. My hon. Friend talked of the joy and happiness that can be found in these circumstances, and I am sure that he was right.
In the case of some of the rarer conditions, many parents build up a unique knowledge of their child and of the management of that child's condition. The sharing of these experiences with other parents can be a source of great strength and comfort; especially when, as often happens with the rarer genetic disorders, parents have responsibility for more than one sick child.
This leads to the recommendation that if a child is to attend a hospice, it should be one that is child-oriented and properly dedicated to the care of children and their special requirements, not part of an adult facility. Adult hospices that want to include children should develop separate facilities especially equipped to cater for their special needs.
It is now generally accepted that most families want to care for their sick child at home for as long as they can, and that many parents want their child to die at home. Their wishes need to be respected, and children with life-threatening illnesses should receive care based on their home. However, in meeting these wishes parents will need help and support. There are many ways to support those families, depending on their precise needs and on what contribution children's hospices can make to meeting the needs of the child and family. As new services are introduced, their effectiveness must be looked at.
134 So in 1992 we launched a programme to run for five years, with the overall aim of forming a better appreciation of the services that are most beneficial to seriously ill children and their families. One million pounds a year has been provided to fund this programme. By the time it ends, in March 1997, support will have been given to about 40 projects, ranging in size from under £1,000 to some over £200,000. They are spread evenly across England, and include initiatives in both statutory and voluntary sectors. All break new ground, and range from pioneering community home nursing services to support for voluntary respite care within a hospice dedicated to children.
Various projects aim to explore the contribution that community paediatric teams, especially paediatric nurses, can make to help those families. Other developments have been supported by the programme, including the concept of the hospice at home—this can be either an outreach facility from an existing hospice or a domiciliary nursing service provided by a voluntary or statutory organisation that seeks to help with the management of the sick child's symptoms in the home.
Little Haven hospice at Southend-on-Sea, of which my hon. Friend is the patron, has been awarded a modest grant from programme funds in support of a local survey that it is mounting to validate the information that is available on the children in its immediate area who may require its services.
The importance of children's hospices is being increasingly recognised by the health service. Children's hospices now have access to health service funding on the same basis as adult hospices. Since 1994, funds have been included in health authority allocations for the purchase of palliative care services. Health authorities can now commission palliative care services for all their populations, including children. They are no longer restricted, as they were at one time, to supporting adult hospices—they can include children with life-threatening illnesses. They have been given the power to decide for themselves the appropriate amount of funding to meet the needs of their local populations in this regard.
While domiciliary services may be the first line of support for families, when the services of a children's hospice are seen to have an important role to play, contracts can be arranged and funds can be provided. I understand that some hospices now receive a significant part of their funds through service contracts.
I value highly the dedication and commitment of all those involved in the children's hospice movement. Many people put in many thousands of hours of their own time to raise money and to run events in support of the hospices, including my hon. Friend and his friends. Without their effort, the lives of many children and their families would be definitely a good deal poorer.
§ Question put and agreed to.
§ Adjourned accordingly at nine minutes to Eleven o 'clock.