"Within three-and-a-half months of Sophie being born we realised therewas something wrong with her," recalls her mum, Sandra Price."Eventually we found out she has a rare neurological condition, AicardiSyndrome. Our health visitor and the community nurse suggested thatKeech Cottage children's hospice could help, so we talked to them andfor the past two-and-a-half years we've used them. I don't know how Iwould have coped without their support," she admits.
According to Sandra, Keech Cottage is a beautiful facility and the staffare very flexible. "Sophie gets a lot out of the multi-sensory room, themusic therapy sessions, and their hydrotherapy pool," she reveals. "Butthey're also there for me to talk to about anything at any time, and mytwo other girls get a lot out of the sibling groups they run.
"They've also given us a lot of respite care so that we can have a fewhours off," she continues. "The staff are fantastic with all my girls,who love it there - they call it Sophie's hotel."
Supporting the child and family
Keech Cottage, which is run by the Pasque charity, provides terminal,palliative and respite care to children with life-limiting conditions ona 24-hour, 365-day-a-year basis, free of charge. As Mike Keel, itsdirector of nursing, explains: "When many people think of a children'shospice their first thoughts may be of a building that is gloomy andfull of sick children waiting to die. This is not what makes achildren's hospice service. Here, we're not just about supporting achild at the end of their life, but helping the family, and child,prepare for what is inevitably going to happen."
And this doesn't all have to be done at the hospice building. "While thehospice building is bright and happy, most of our work is done in thefamily home or elsewhere through our community and family support team,"continues Keel.
"In fact, much of our work is with parents and siblings, with supportfor the sick child only happening where there is a deterioration orchange in their condition or they enter the end-of-life phase," he adds."But we enable families to maintain their home routine and quality oflife as much as possible."
John Quill, Keech Cottage's chief executive, agrees. "We work inpartnership with other agencies and professionals involved in thefamily's care," he says. "But as a charity we can't replace statutoryservices or replicate them, so we plug the gaps, wherever they are."
One of the biggest gaps is in the provision of ongoing respite care.
While Quill says hospices are proactively trying to help overcome thisproblem, he urges the statutory sector to consider increasing theirfunding so that hospices can offer more. Like other hospice services,most of Keech Cottage's income relies on voluntary contributions, asit's estimated that, in England and Wales, only around five to six percent of hospice funding comes from statutory bodies, such as primarycare trusts.
Bridget Turner, director of care at Chase Hospice Care for Children inGuildford, also points her finger at the problem of respite care: "Manystatutory schemes do not have the necessary 24-hour seven-days-a-weekcover, nor do they have the necessary medical support, unlike hospiceservices," she argues.
Fortunately for Scottish families, the situation is different, as AndreaCail, head of policy and practice for the Children's Hospice AssociationScotland, explains: "Here, the Scottish Executive has made a strong andeffective case for health and social care commissioners to provide 25per cent of the funding required by children's hospices, using servicelevel agreement," she reveals. "We're not quite there yet, but we willbe soon."
As a result, a key aim of this year's Children's Hospice Week, which isrunning this week (17 to 24 September), is to encourage the statutorysector in England and Wales to spend more on hospice services byincreasing recognition of what hospice and palliative care services canoffer children and their families.
A campaign for cost-recovery
The week is organised by the Association of Children's Hospices, and itschief executive, Barbara Gelb, is campaigning for hospices to be fundedon a full cost-recovery model, which would ensure that commissioners andpurchasers meet all the relevant overheads as well as capital andrevenue costs of services.
The association is also keen to raise money in order to carry out amapping exercise across the UK, to help identify levels of need and theresources currently available. The importance of this is underlined byTurner, who points out "there are an increasing number of children inhospitals and the community with life-limiting conditions, often withrare conditions".
Consequently, dedicated nurse-led community and hospice-based servicesare crucial, and are likely to become more needed in the future. "Forexample, we can liaise closely with specialist hospital consultants andmedical teams, while also being able to offer one-to-one support toparents," explains Turner.
Furthermore, Chase can provide broader advocacy and support services,bereavement counselling, and schools liaison due to the range ofprofessionals it employs, which include a social worker and anoccupational therapist.
For Turner: "This multi-professional approach not only makes us able tooffer the right support at the right time and to respond to the childand the family's needs, it also helps us to maintain effective linkswith others such as local authorities' children and family teams."
Barbara Evans, head of safeguarding and corporate parenting at Telford &Wrekin council, and children's hospice and palliative care services leadfor the Association of Directors of Social Services, recognises theimportance of linking statutory authorities with hospice services, viacommissioning arrangements.
"Commissioning units should become more aware of which children andfamilies could benefit from these services and look more closely at howbest to support those who provide them," she maintains.
However, she is optimistic that the time is now right for the statutoryand hospice sectors to develop closer links, including improvingcommissioning processes, because of the 48m boost given to morethan 70 schemes and services in 2003 by the New Opportunities Fund.Although the funding will continue until the end of 2006, Evans sayslessons have already been learnt, especially because those organisationsthat bid for funds had to be supported by a primary care trust,resulting in better working relationships between the two.
More cash for respite care
Catherine Pelley, director of partnership commissioning at DacorumPrimary Care Trust, certainly thinks this is the case. "The money hasenabled us to support more respite care," she reveals. "And some of itwent to Keech Cottage."
But Lizzie Chambers, chief executive of the Association for Childrenwith Life-Threatening or Terminal Conditions (Act), cautions againstover-optimism. "In general, this extra money was helpful. But we knowsome trusts were not able or willing to back bids, and the fact thatonly five per cent or so of hospice services funding currently comesfrom them shows there's a long way to go."
Nevertheless, she remains hopeful. "The development of integratedchildren's trusts and the fact that the national service framework hasflagged up the need for primary care trusts to ensure there are enoughpalliative care services could make a difference," she predicts.
Gelb is also fairly optimistic: "We're clear that the Government must domore to prioritise palliative care for children and recognise thatcurrent and future unmet need cannot be supplied through charitablefunding," she says. "But there is a feeling that these messages arebeginning to get through."
However, the benefits for children like nine-year-old Christopher, whohas spent time at Martins House hospice - in Wetherby, near Leeds - gofar beyond any monetary value you could place on services. "When you goto there there's an enormous garden with places to hide," heexplains.
"The staff are nice and the rooms are colourful. The bathrooms are bigenough for people who need help, but if you can walk and get yourselfout of the bath, there are two others. I like it because it feels justlike home," he concludes. "I love it there."
CHILDREN'S VOICES
When the Association of Children's Hospices asked a group of childrenwhat they find most helpful about hospice care, they said:
"I can play with staff, play good games, and I can talk to them"
"The staff, and the different things to do away from home. Also I likeescaping my parents!"
"Having one nurse look after just me, and lots of attention. Also havingpeople to chat to all the time"
"I'm treated as normal - welcomed but not fussed over. I also likehaving people to chat to all the time"
"Meeting similar people with similar problems who are the same age"
FACT FILE
- There are about 20,000 life-limited children in the UK, who coulddirectly benefit from hospice services
- Around 4,300 life-limited children and their families currentlyreceive support from hospices, plus 1,900 bereaved families
- Nearly 58 per cent of children receiving hospice support are under12
- There are currently 38 hospice services in the UK, and fundraising isunderway for a further five
- There is not an even spread of hospice services around the country.For example, there are seven hospices in the wider London area, but justtwo each in Scotland and in the South West, and one in Northern Ireland.
