Children's Hospice Association Scotland

– in the Scottish Parliament at 5:00 pm on 17th April 2002.

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Photo of George Reid George Reid Scottish National Party 5:00 pm, 17th April 2002

The final item of business today is a members' business debate on motion S1M-2852, in the name of Susan Deacon, on the 10 th anniversary of the Children's Hospice Association Scotland.

Motion debated,

That the Parliament congratulates the Children's Hospice Association Scotland (CHAS) on its 10th anniversary; pays tribute to the excellent work carried out by staff at the children's hospice, Rachel House, in providing care and support for terminally ill children and their families from across Scotland; notes that the development of a second children's hospice is currently under way; recognises the efforts of the many individuals and organisations who have contributed to the development of this project, and considers that the Scottish Executive should work in partnership with CHAS, NHS boards, local authorities and the Scottish Partnership for Palliative Care to ensure that these services are supported effectively.

Photo of Susan Deacon Susan Deacon Labour 5:06 pm, 17th April 2002

I am grateful for the opportunity to open the debate and to acknowledge the achievements of the Children's Hospice Association Scotland—CHAS—in its 10 th anniversary year.

I am grateful also to the large number of members from across the political spectrum who have signed the motion—more than half the membership of the Parliament has done so. Much as I would like to claim that that is a product of my lobbying skills, the truth is that members signed up without being prompted. That is testament to the regard in which CHAS is held.

I am particularly pleased that a number of staff and volunteers from CHAS, as well as families who use its services, are in the public gallery. I am sure that we would all like to extend to them a very warm welcome. [Applause.]

CHAS's story is one of determination, hard work and commitment. It is about people who saw a need and did something about it. Those qualities go unrecognised all too often. I would like to pay tribute to some of those unsung heroes.

It is, sadly, a fact that a small number of children are born with, or later develop, conditions that will cut their young lives short. In the 1980s, there was a growing recognition that children with life-limiting and life-threatening conditions require special care and support and that their families also had particular needs. Indeed, in the 1980s Britain pioneered the development of dedicated children's hospices. However, although during that period children's hospices were developed in other parts of the UK, Scotland missed out. Therefore, for many years families in Scotland who wanted access to specialist child hospice care had to make the long journey south to Yorkshire or to other parts of England.

In the early 1990s, a small group of people came together to change that. One of those people was Nancy Blaik, who is in the public gallery. At the age of two, Nancy's son Daniel was diagnosed as having Leigh's encephalopathy, which is a rare and life-threatening metabolic disease. He could not speak or move without help and suffered daily spasms.

Nancy Blaik began a regime of round-the-clock nursing, yet still found time to establish the Edinburgh branch of the Research Trust for Metabolic Diseases in Children, which was later to become Children Living with Inherited Metabolic Diseases—CLIMB. Nancy's work eventually won her a disabled Scot of the year award—she has been registered blind for more than 30 years.

Despite her husband's death and her own and her son's ill health, Nancy also became a founder member of a new charity. Along with a small group of other committed parents and professionals, she began campaigning for Scotland to have its own children's hospice and so ten years ago, in February 1992, CHAS was born.

In September 1993, the Daily Record launched a major £10 million fundraising appeal. The response from the public was dramatic. In just 17 months, £4 million was raised. That was followed by major contributions from the MacRobert Trusts and from Government.

The money having been raised, a site was identified and building began. In March 1996, the dream became a reality and Rachel House in Kinross, Scotland's first-ever children's hospice, opened its doors. Since then, Rachel House has provided care and support to more than 200 families from throughout Scotland.

Sadly, more than 100 children have died in the intervening time. Rachel House has offered continuing support to bereaved families. Over the past six years, Rachel House has also developed a range of other services including, increasingly, home care.

CHAS has not stopped there. Now in its 10th anniversary year, it is on the brink of building Scotland's second children's hospice, which is a tremendous achievement after only a decade. CHAS's success in its financial appeals and building projects masks the breadth and depth of its work. It has done so much more than simply work as a good fundraiser. It has been at the forefront of developing a model of palliative care and support that is truly responsive to the needs of children and families. It has recognised and addressed the needs of the whole family, including brothers and sisters and mums and dads, as well as the sick children themselves.

CHAS has done much to raise awareness and build understanding among the public and health professionals of the needs of children who have life limiting and life-threatening conditions. At all times, its approach has been sensitive and dignified. Now recognised as a centre of excellence, Rachel House has attracted international acclaim and has received inquiries and visits from China, Germany, the United States of America, Romania and India to name but a few countries.

I know that a number of MSPs have visited Rachel House. The First Minister was there only a few weeks ago. All of us who have visited Rachel House have been greatly affected by the experience. I can honestly say that my visit there was one of the most profound and moving experiences I have ever had. Rachel House is a first-class facility, run by skilled and caring staff and backed up by an army of committed volunteers. It is more than that, however; it is a very special place. As anyone who has witnessed its work at close quarters will testify, a visit to Rachel House somehow manages to bring a smile to the face as well as a tear to the eye.

Step into Rachel House and, most likely, it will ring with smiles and laugher. Children are to be found enjoying themselves in the playroom, the garden, the soft play area or the jacuzzi. Mums and dads relax over a cup of tea and a chat. Children go on outings and some receive therapies, from music and art therapies to physiotherapy. A visitor might drop in at the same time that Dr Pavlova and Superdoc, of the clown doctors, are visiting. The point is that Rachel House is a happy place—it is fun, especially for the youngsters, as it should be.

Aside from the smiles, there is a quiet room, containing a special book, "Children of Love", which records every child known to Rachel House who has died. In that room there is also a book in which bereaved families can record photos and memories of their children. The room resonates with the huge sense of loss that so many have experienced. The list of names and ages in that book is a sad and palpable reminder of why Rachel House exists.

Rachel House's capacity to combine those different facets of its work is its most special and striking feature. Much of the credit for that goes to its staff and volunteers, but its philosophy is also key to that. That philosophy allows families to shape the care and support that they receive, so that the care that is provided is what the families say they want, not what others think they should get.

Children's palliative care is a complex and sensitive area. Getting the right treatment, medication, equipment and clinical care for terminally ill children is vital but so, too, is ensuring that children and their families—their parents and siblings—get the wider support that they need. Rachel House has led the way in addressing those wider needs during the lives and, sadly, following the deaths of children. There is much to learn and share from its experience.

Families' needs are often surprisingly simple and include things that many of us take for granted. For example, for the parent or sibling of a very sick child, getting a good night's sleep can be a rare luxury, as can being able to finish uninterrupted a cup of tea, or relaxing, dozing or watching television for a wee while, knowing that there is someone else there to take care of your child, to amuse them, to administer their medication, to check their breathing equipment, to take them to the toilet or to change their clothes if necessary. Rachel House is special in the way in which it combines first-class medical and nursing care and clinical support with meeting the wider needs that I have described.

Most of us can barely imagine what it must be like to lose a child or to contemplate the prospect of their child's life being cut short. For some, sadly, that is the reality that they must face and it is vital that the right facilities exist so that children and their families can get the best possible care and support when they need it.

Scotland needs Rachel House. We need a second children's hospice too and, in time, possibly even a third. The financial appeal for a second children's hospice at Balloch is now well under way. The public has again responded well to appeals that were led by the Daily Record and, most recently, by the Sunday Post. Recently the Scottish Executive pledged £1 million to support the start-up costs of the hospice, and an impressive array of celebrities and organisations have lent their support to the campaign.

However, more needs to be done to provide the stability that is needed to develop and maintain the facilities in future. Government, local authorities and local NHS boards, as well as business, the public and the media, have a role to play. As with other hospice care, a substantial proportion of funding will continue to come from charitable donations or bequests, but it is important that public funding is put on as stable and secure a footing as possible. At present, each NHS board and local authority makes an annual contribution to CHAS, but that involves an annual round of negotiations between CHAS and no fewer than 47 public bodies. I know that for some time CHAS has been in discussion with the Executive in a bid to streamline and improve those arrangements. I hope that today the minister will be able to give a commitment that that will happen.

Let me be clear: this is not about appealing for more money—although I am sure that that would be welcome—but about ensuring that public funds are channelled to CHAS in as effective, efficient and reliable a way as possible.

A children's hospice is a national resource that we must nurture and treasure. We owe a great debt of gratitude to Nancy Blaik and those like her who had the vision and commitment to make a children's hospice in Scotland a reality. In marking CHAS's 10th anniversary, I hope that today, as Scotland's Parliament, we can contribute to its work. Happy 10th anniversary, CHAS. We thank you for all that you have done and offer our very best wishes for all that you will do in the next 10 years and beyond.

Photo of Margaret Smith Margaret Smith Liberal Democrat 5:16 pm, 17th April 2002

I begin by congratulating Susan Deacon on securing this debate. The fact that she received so much support from throughout the chamber is a sign of the support that we all give to CHAS.

We congratulate the whole CHAS family on its 10th anniversary. It is six years since CHAS opened its doors at Kinross—the doors to Scotland's first much needed and currently only children's hospice. Susan Deacon has already mentioned the journeys that parents and children had to endure prior to the campaign for a children's hospice in Scotland. It is essential that we build on that and support the continuing campaign to build a much-needed second hospice.

As members of the Parliament, we are privileged to have access to people and places that members of the general public might not have a chance to see. One of the most memorable visits that I have made in my time as convener of the Health and Community Care Committee and as an MSP was to the children's hospice at Rachel House. I must confess that—selfishly, small-mindedly and rather stupidly—I was worried, as the mother of two young children, about what I would see and experience at a children's hospice. That now seems like a ridiculous thought to have had. The reality at Rachel House was very different from what I had anticipated and worried about. I found it to be the most caring place imaginable where parents, staff, volunteers and children all support one another. However, to my great surprise I also found a great deal of laughter. As the CHAS leaflet says:

"Rachel House is not a sad place, it is a place for living."

It seemed to me that Rachel House was a place where people got the most out of what was left of their very young and often very tragic lives. The hospice looks and feels like a house, rather than an institution. It is a home from home—a place where people support one another. That support is given not only to children who have life-limiting conditions, but to their parents, to their brothers and sisters and to their wider families.

From the beginning—from the Daily Record's record-breaking appeal, which harnessed the support of the people of Scotland, to the Scottish Office funding, support from stars such as Ewan McGregor and on-going fundraising for the annual £1.36 million running costs of the hospital—CHAS has been a team effort. It seeks to get together the money that is needed and to work behind the great team of people who provide care within the house and the outreach services.

I was struck also by the special thought that is given to the needs of teenagers. As the mother of a teenager, I know that at the best of times teenagers require a great deal of support and special thought. However, the children at Rachel House struggle in what are nowhere near the best of times. There are difficult decisions to be taken about their futures and they have difficult counselling needs. I am delighted that the new centre will do even more to address that specific need.

Scotland has a worldwide reputation for its palliative care. If I ever doubted that, it was made clear to me when I chaired a cancer conference in New York last week. We have to thank CHAS not only for its input into the national care standards for hospice services but, fundamentally, for ten years of innovative care for children. We have to thank it for caring for the 20 per cent of children in its care who might die each year, for caring for the many others who receive emergency and respite care and regular short-term breaks and for caring for the families who rely on it for counselling and support, including bereavement counselling.

This country owes a great debt to those who have given so much care and support over the past ten years. We should give them an even better future. That is why I am delighted that the Executive has announced £1 million for the proposed second hospice, which will address the great demand for such services.

I hope that all members will do all that they can to get behind the fundraising efforts, not only to build the new centre, but to support the continuing efforts.

I whole-heartedly echo the comments that Susan Deacon made about streamlining the Executive and council funding streams so that we can maximise public sector funding for what is a truly remarkable and amazing story. I echo her comments in saying thank you to CHAS for the work that it has done and in sending a big "happy birthday and happy anniversary" to all its staff.

Photo of Bruce Crawford Bruce Crawford Scottish National Party 5:21 pm, 17th April 2002

I sincerely congratulate Susan Deacon on bringing this motion before the Parliament today. I was glad to sign the motion and I think that Susan did a great job in her speech of presenting the feeling about CHAS. That makes it very difficult for the rest of us to follow her, because she did such a magnificent job of explaining to people exactly what Rachel House is all about.

It is hard to believe that CHAS has been in existence for 10 years and it is even harder for me to believe that Rachel House in Kinross has been open since 1996.

Susan Deacon talked, quite rightly, about the hard work and commitment of the staff and the people who are involved with CHAS and Rachel House. The hard work and commitment that went into the establishment of Rachel House before it was built are a tribute to those who are involved now and those who were involved in the past.

I was lucky enough to be the local councillor at the time that CHAS decided to come to Kinross and Margaret, with whom I was involved at the very beginning of the project, was a magnificent human being who put a lot of work into making the site work.

The hunt for the site in Kinross was not easy. It was a bit of a struggle and it was a long hunt, which was supported superbly by the Daily Record. CHAS settled on an old orchard in the grounds of Kinross house, owned by Sir David Montgomery, who contributed significantly to ensuring that it could be a successful operation. There were a range of problems, such as those with the sewage works, which were unable to deal with the capacity that the place would produce because Kinross had sewerage problems. There were also problems with access, but all those problems were overcome because everyone understood the significance of what CHAS was trying to achieve in Kinross. Many unsung heroes have opened doors and worked tirelessly for years to ensure that the project works.

Susan Deacon said rightly that many MSPs have visited the site; I know that the Deputy Presiding Officer, George Reid, has been there on a number of occasions. Members are always struck by the fact that it is a special place. The building won an award for its design soon after it opened. Its location on the banks of Loch Leven is also special. People know that they are entering a special place even before they get through the front door, because of the location and the feel of what goes on there. Once they get inside the front door, they feel the aura of the place, which Margaret Smith described well.

I am not trying to draw direct comparisons, but the only place that had the same impact on me was the island of Iona. I know that the two places have different ethos, but I got the same feeling of happiness, togetherness, help and support on Iona that I got when I visited Rachel House.

I am delighted to support CHAS. The minister has heard members talk about funding problems, such as the 47 different funding streams. It is incumbent upon us to ensure that we get those problems sorted out before the second hospice is up and running. Somewhere along the line, some organisation will be unable to contribute the amount that it contributed in the past, which will cause a hiatus in funding. The quicker we get those problems sorted out and put CHAS on a firm footing, where it knows exactly where its funding will come from over a reasonable period of time, the quicker it will be able to plan successfully for the future to develop the new hospice on the banks of Loch Lomond. I am sure that the new hospice will be an equal success to that of the hospice on the banks of Loch Leven. I wish everyone involved all the best for the future.

Photo of Mary Scanlon Mary Scanlon Conservative 5:25 pm, 17th April 2002

I am delighted to support Susan Deacon. I congratulate her on securing this debate and on her moving and highly informative speech.

Before I visited Rachel House this week, I did not know what to expect. As I drove down the road, my expectations—if I had any—were that I was going to enter an intensive nursing hospital for very ill children, probably in a highly clinical and formal setting. However, as other members have said, that perception was far from the reality. As Bruce Crawford said, before one enters Rachel House, one notices that the gardens, the structures and the environment are in a wonderful, colourful and welcoming setting. Rachel House is happy, friendly and relaxing. As the leaflet says, Rachel House is

"a home from home, offering a place where families can relax, recharge their batteries and have fun with their children. Expert care is on hand to help them to make the most of each day and live life to the full.

Rachel House is not a sad place, it is a place for living ... of fun and laughter, enjoyment, love and support."

I found the definition of a hospice as a

"place of rest and refreshment for those on a journey" one that changed my views and my understanding.

I am delighted that Rachel House exists—there should be a place that families can choose to go to during the different stages of illnesses. Like other members, I would like all families in Scotland who have children with a life-limiting condition to have access to the rest and refreshment that is provided by CHAS at Rachel House.

However, Rachel House is struggling to meet the demand for its services. As one of the CHAS publications says:

"Demand at Rachel House is so high that family visits may soon have to be restricted. The only solution is to create additional services"— as there are only eight beds.

Rachel House supports 130 families and more than 100 bereaved families. As Susan Deacon said, the increased demand for services has led to the establishment of a pilot project for a home support co-ordinator to work alongside CHAS nurses in order to help people at home. I understand that there could be as many as 2,000 children in Scotland who suffer from life-limiting conditions. As a representative of the Highlands and Islands, I particularly welcome and support such home services.

It is interesting to note that Rachel House came about after several parents from Scotland took their children to Martin House in Wetherby. Martin House opened in 1987 and, five years later, Rachel House opened. We should take the lead from Bruce Crawford, who commented on the work that was done to find the site, the problems that were associated with it and the huge fundraising effort that was made—the five years that that initiative took was not too long. I was amazed by the number of volunteers at Rachel House—500 volunteers is an incredible number. One volunteer even comes from Orkney.

I finish on a point raised by Susan Deacon. Rachel House gets £125,000 from the 15 health boards, and the same amount comes from all the local authorities. Although the children's hospice serves all of Scotland, some councils and health boards do not contribute to it. Therefore, given that the money is all public money, it would make sense to have a one-door funding mechanism, rather than CHAS having to spend time and administrative effort on funding. That would ensure that future funding would be consistent, for both the house in Balloch and Rachel House.

Photo of Jackie Baillie Jackie Baillie Labour 5:30 pm, 17th April 2002

I join other members in congratulating Susan Deacon on securing the debate, which provides us with an opportunity to recognise the achievements of CHAS over the years.

Very few of us can imagine the emotional pain that is experienced by parents whose children suffer from a terminal illness. It is probably even harder to imagine the mix of feelings that such young people must cope with, and the impact on brothers, sisters, grandparents and the extended family.

We know that time with the family is precious and families invariably want the time that remains with their children to be filled with laughter and joy. Caring for a seriously ill child puts immense emotional and physical strain on the whole family and absorbs what little energy and time it has to enjoy life to the full. Ten years ago, a family would have struggled without support. Thankfully that is no longer the case, which is why the work of the Children's Hospice Association Scotland is so important. I am delighted that we have an opportunity not only to reflect on the achievements of the past, but to look forward to the future.

CHAS has changed the landscape of Scottish care. The organisation was founded 10 years ago, when there were no hospices for children in Scotland. As we have heard, CHAS opened its first hospice at Rachel House in Kinross in 1996, after four years of hard work. For the first time, Rachel House provided a place where children and their families can relax and feel secure in the company of staff and volunteers who work tirelessly to support them. I add my tribute to their commitment and dedication.

As Susan Deacon said, children are able to make friends, to play games and to enjoy life, and parents can take a well-earned break. However, that does not begin to capture the atmosphere of Rachel House. It is a place that is filled with love, laughter and sometimes sorrow; more often than not, it is about celebrating life. Anyone who has been to Rachel House—I am privileged to have done so—will say that it is inspirational and a truly special place.

Ever since the doors of Rachel House were opened, the service has gone from strength to strength. More than 200 families use Rachel House and CHAS has decided that it is time to build a second hospice to cope with demand. I am particularly pleased that the new hospice will be in Balloch—gateway to the new national park—and will be sited on the banks of Loch Lomond. I am immensely proud to welcome an organisation of such excellence, which will provide a much-needed service to the area that I represent.

I pay tribute to the efforts that those in the local community have made to help raise funds for the hospice. That demonstrates their real sense of pride in the fact that the hospice is coming to the local area. I also pay tribute to our local newspapers, which have led a remarkable fundraising campaign. The district has probably never seen quite so many cake sales and social events. Even a sponsored abseil has been organised, although I confess that I have not volunteered. Local people—from primary school children to policemen and from brownies to quilting clubs—are keen to extend a warm welcome to CHAS. Many of those people are in the visitors gallery.

Perhaps without knowing it, CHAS has given us a gift among all the fundraising by bringing the community closer together. I congratulate CHAS on 10 years of hard work and wish the organisation every success for the future.

Photo of Shona Robison Shona Robison Scottish National Party 5:34 pm, 17th April 2002

I join other members in commending Susan Deacon for securing an important debate. The attendance in the public gallery is one of the best that I can remember for a members' business debate. Our visitors are most welcome.

I can think of no more deserving cause than Rachel House, although I admit that I have not as yet visited it. Having heard what Susan Deacon said in tonight's debate, I fully intend to do that. However, I have met families who have used the services at Rachel House and, for them, Rachel House was a real lifeline. Had it not been for Rachel House, their lives would have been a lot more difficult.

It is fitting that we highlight the achievements of CHAS on its 10th anniversary and in the fifth year of Rachel House opening its doors. As we have heard, Rachel House provides a much-needed specialist facility that provides support to hundreds of families. As Susan Deacon outlined, CHAS provides services to families within their own homes as well. That is important. CHAS also helps families who are bereaved. At a difficult time, when the last thing that families need is to be cut off from the support network that they have had, CHAS provides an important service.

I pay tribute to the work of the staff and volunteers at Rachel House, many of whom come from the local community. It is worth noting the good relationship that Rachel House has with the people of Kinross and the support that it receives from that community.

Apart from that, all that I will say is that we need to support the work of Rachel House. We do that by supporting it financially, as is happening. Susan Deacon made the important point that we can also support Rachel House by removing any unnecessary existing barriers, such as the need to negotiate with 47 different public bodies. We must sort that out so that Rachel House can be allowed to get on with the important work of supporting terminally ill children and their families.

Photo of David Davidson David Davidson Conservative 5:37 pm, 17th April 2002

I congratulate Susan Deacon on a moving opening speech that encapsulated something that I came across some years ago.

We had not been long back in Scotland when my wife bumped into somebody in Stirling. Out of that cup of tea and a conversation, she ended up becoming the founding chairman of a funding group for west Perthshire, which included Stirling at that time. She found that she was pushing at an open door and that it was easy to get people to come and work with her. The fact that she had a background in medical research and that we had five children—as everybody knows, children have problems that come in different shapes and forms—meant that she was very much aware of what was going on. About half of the people who joined her in that early stage had had difficulty in getting care for their children. However, for the other half, the idea just caught their imagination.

I congratulate those who were inspirational enough to push out the idea and do something about it. The thing that we must realise is that, despite the fact that the demand existed, such things did not start within mainstream health care but were started by volunteers. I am not sure that the services that Rachel House currently provides should be provided as a mainstream service because Rachel House might then lose its individuality. The place has a unique atmosphere of comfort, care and compassion that extends to the families as well as to the sufferers themselves. That is the vital part.

It is scandalous that Rachel House, which is special in Scotland and which, albeit that it employs professional staff, is a model of excellence in what ordinary people have done, must be part of the annual begging-bowl round. Rachel House provides an inspiration of what can be achieved. I was delighted to hear that the Executive is providing money for the Balloch fund. However, in the answer to a parliamentary question in 1990, it came to light that the hospices in Scotland received about 50 per cent of their funding from the public purse. A parliamentary question last year revealed that that had dropped to around 40 per cent. The percentage of Rachel House's funding that comes from the public purse—which was about 25 per cent in the early days—has dropped from 18 to 16 per cent over the past two years.

The service that Rachel House provides has raised the expectations of many families. We cannot expect that sort of service to continue without sustainable funding to allow those who run this excellent association the freedom and choice to continue to deliver. We need to be able to guarantee that, over time, great efforts will go into providing and extending the service. At the moment, 17 out of the 124 users of the service are from the region that I represent. The service covers all of Scotland. We must provide the resources to give individuals the care, the attention and the dignity that they require, so that they can see out whatever time they have left in a manner that is enjoyable and that leaves pleasant memories for everyone, despite their long-term pain. We must ensure that the CHAS movement is given the support that Scotland should give it.

Photo of Dorothy-Grace Elder Dorothy-Grace Elder Independent 5:41 pm, 17th April 2002

I thank Susan Deacon for initiating this debate, a debate that reminds us of the frailty of children. There are not just a few hundred metabolic diseases, for instance, but a few thousand. We have still to solve them—we are not quite as smart as we might have thought—so the hospice service becomes more and more important in Scottish life.

I remember the beginnings of the Daily Record and Sunday Mail campaign—I was one of those who lobbied for it. I remember those who made the correct decisions—editors with heart. Endell Laird was then the editor-in-chief of the Daily Record and the Sunday Mail and Jim Cassidy was the editor of the Sunday Mail. The journalist who bore the greatest weight of the massive administration was Archie McKay. All those people deserve an honoured place in the history of an achievement that was, at the time, the single greatest newspaper fundraising campaign.

I also remember from that period, with the greatest affection and respect, Nancy Blaik. Nancy was not long widowed when we first met. She had been left with Daniel, who was utterly helpless from the age of two. Daniel had to be carried around bodily and it took perhaps two hours to feed him at every meal. Here was Nancy, alone in the world—and blind—and yet she went out on the pavements of Edinburgh collecting. Almost every day, she could be seen with her collecting can, collecting for her great dream—to help other parents and not just herself. Her son Daniel would not have survived but for Nancy's great love.

Ten years ago, Nancy's story became a BBC documentary, which I was involved in. The story has a happy ending for her. She phoned me up one day and said that the social work department had done the most terrible thing. "For the first time," she said, "they've sent someone to help me. But do you know who it is? There's a huge giant of a man on my doorstep. A giant of a man is the last person I need to help with a very frail child." Well, of course, the giant did marvellously, and Nancy and the giant were married a few years later. Jack Blaik has also been a marvellous supporter of the movement. They are a very happy family indeed.

As we move on in Scotland, much more help is needed—especially for teenagers. Members have rightly referred to the very special needs of teenagers, who realise what is happening to them. We must renew our efforts and our support for CHAS and this very great movement. There are parents around today who remember all too clearly what it was like in Scotland before CHAS existed. If members think back just 10 years, they will remember and find unbelievable the extra suffering that people were going through without the care, love and skill of the medical staff and the many others who are involved.

I say to CHAS, thank you very much for what you have done for Scotland, for Nancy and Jack and for all who are here today. And to Daniel, the inspiration, I say thank you for what you did for your country.

Photo of Mary Mulligan Mary Mulligan Labour 5:45 pm, 17th April 2002

I congratulate Susan Deacon on securing the debate. I was moved by her thoughtful speech, which set the tone for all the other speeches that we heard. I am pleased to have the opportunity to express the Executive's continuing commitment to the Children's Hospice Association Scotland and its work at Rachel House.

The Scottish Executive was delighted to demonstrate our support for CHAS's proposals to establish a second children's hospice in the west of Scotland through Malcolm Chisholm's announcement last month of an award of £1 million in grant for that exciting new development. We have undertaken to provide £500,000 towards the building costs of the new hospice when construction gets under way and we will also provide £250,000 in each of the first two years to help to establish the hospice in the early stages of operation. That is similar to the support that the Government provided for Rachel House when it was set up in 1996.

The Executive is maintaining its annual grant support for CHAS's organisational costs to ensure that the association continues to prosper. I noted the comments that Susan Deacon and others made about funding streams and I will clarify the current situation. NHS Tayside co-ordinates funding from the 15 national health boards and pays the money to CHAS. Stirling Council has a similar arrangement for co-ordinating funding from the local authorities. However, I accept that the system for the local authorities is not working as well. I am pleased to say that the Scottish Executive has undertaken to facilitate more constructive discussion about local statutory funding. We hope that those discussions will result in a more efficient funding allocation.

CHAS's success in harnessing public support and in raising funds is a model for other organisations. All those involved deserve great credit. Recently, like many MSPs who have spoken this evening, the First Minister visited Rachel House. He was deeply impressed by the skill and commitment of the staff and the courage of the children and their families who use the service. Rachel House is an inspiring and happy place, despite the tragedy that the families face. It is a place where children and their families come for support when they need it most; it provides an opportunity for families to enjoy new experiences together and for carers to take a well-earned break. The high standards of care and support show just what can be delivered.

As well as applauding the very special care that CHAS provides, we should pay tribute to the efforts of other services that provide respite and palliative care for children and adults with life-limiting and life-threatening conditions. In respite services and palliative care, as in all other aspects of health care, we must strive to provide the best possible service for the children—they deserve nothing less. Children are a priority for the Executive and our health and social services in Scotland. We are determined that our young people should have high-quality services across the board—in health, education, social work and other areas. The Executive is determined to drive up standards of care through better-integrated services for families who need support.

We have invested £63.5 million in our changing children's services fund to enable local authorities and NHS boards to work together in reshaping services and support for our most vulnerable children. One of the fund's key priorities is to develop support packages for children with disabilities or special physical, emotional, mental health or educational needs. That should include respite care. We are currently reviewing local proposals for expenditure.

We have also allocated more money to local authorities—rising to an extra £11 million a year—to increase respite provision across Scotland by an additional 22,000 weeks per annum by 2003-04. The new opportunities fund is also bringing £5.4 million of national lottery money to invest in palliative care in Scotland over the next three years.

The national health service in Scotland has learned a great deal from the hospice movement. We are encouraging local authorities and NHS boards to work closely with voluntary organisations to identify and plan how best to meet the needs of their local communities. We want close collaboration and consultation between statutory and voluntary organisations.

We acknowledge the pressures that voluntary organisations face. The Executive is committed to strengthening the sector through the Scottish compact. We are carrying out a strategic review of funding for voluntary organisations. We have reviewed our national funding arrangements and are now consulting the sector about the next stage, which will take a closer look at local arrangements. On palliative care, the Executive is working closely with NHS boards, the Scottish Partnership for Palliative Care and the Scottish hospices forum to ensure that respite and palliative care services are properly planned and funded locally.

In summary, the Executive will continue to work in partnership with organisations such as CHAS that provide such excellent services. In light of our continuing commitment to the independent hospice movement in Scotland, I add my congratulations to those of Susan Deacon and fellow MSPs to CHAS on its 10th anniversary. From the many comments that have been made in the debate and outwith the chamber, I know how highly people value the service that CHAS provides and how grateful families are to the individuals concerned. I wish the organisation continuing success in the years to come.

Meeting closed at 17:52.