Dealing with death is never easy, but watching a child cling to life knowing he or she will lose the fight is devastating. The children's hospice movement, begun 20 years ago, recognises the need to make the most of a short life and to support families facing terminal illness and loss. They are extraordinary places that provide a unique service. So why is the Government ignoring their pleas for help? Victoria Neumark reports
Keech Cottage glows in the sun. Its brightly furnished rooms are full of light, burnishing the heaps of coloured cushions, the teddy bears, the toy boxes and the mobiles. A pool table, table football, television, video and computers fill the side rooms, while the central courtyard has colourful climbing frames and a sandpit. The grounds, in the gently rolling Bedfordshire countryside, are immaculate, with green lawns and flower beds.
So what is Keech Cottage? A nursery?A play centre? Another of the side rooms gives a clue. It is a sensory room, with padded cushions, special lights and audio equipment to help those whose stimulus is restricted by disability. Then there are the hospital beds, the hoists in the toilets, the hydrotherapy pool currently being built, the wheelchairs folded and ready for use. Keech Cottage, in Streatley, near Luton, is a children's hospice, one of 23 in the UK (another 15 are at various stages of planning) offering day and respite care to families with a "life-limited" child living in and around Bedfordshire and Hertfordshire.
Only 2 per cent of childhood deaths from chronic illness are caused by relatively quick diseases such as cancer; most are from degenerative conditions such as muscular dystrophy, and children may live for 10 or 15 years beyond diagnosis. Such illnesses are rare, which can leave sufferers and their families feeling overwhelmed, frightened and alone. Perhaps we all understand this, which is why the pound;3 million needed to build and equip Keech Cottage was raised so quickly. The appeal was launched in April 1998 and the hospice opened last year.
It also helped that the fund-raising drive was led by the formidable Eric Fountain, a retired director of Vauxhall and General Motors, south Bedfordshire's biggest local employer. The appeal opened with a pound;1 million donation from his friend Dennis Keech, a local businessman whose name the hospice carries; a dinner raised pound;1.5 million. It is, Mr Fountain says, "relatively easy when children are involved; you've got so much sympathy and support". The Keech project is next door to an adult hospice, the Pasque, with which Mr Fountain has been heavily involved for more than a decade.
But while raising money to build and equip the hospice was straightforward, meeting running costs - it costs pound;1 million a year for the 20 staff to help 140 families cope with the process of losing a child - is a constant struggle. Most donors are happy to fund a piece of equipment or furniture but are less keen to fund salaries, pension payments or national insurance contributions. As salaries for the nurses, doctors and therapists make up 80 per cent of annual expenditure, there is a lot of money to find.
Children's hospices are trying to persuade the Government to fund core costs such as salaries, but the Department of Health is refusing to increase its contribution (currently about 5 per cent). A letter from the trustees of Keech Cottage to the Health Secretary, Alan Milburn, remains unanswered.
At any one time, Keech can house five families in respite or terminal care, and five children in day care. "We are here for the living," says Katherine Chinner, play specialist at Keech. "We try to make sure they enjoy their life as much as possible while they're here. We are also here to support the families as much as possible."
The families, with concerned and exhausted parents and lively siblings, can be very noisy, but the sick children love to be at the heart of the noise and bustle. Mike Keel, director of Keech, says: "They want to be right in the middle of the play area, in the middle of life right up to the end."
While the children's hospice movement is founded on honesty and acceptance, children react to the knowledge of terminal illness differently from adults. "Adults often turn their faces to the wall," says Mr Keel. "Children do not die slowly. They hang on, hang on, hang on - and then die really quickly. They are really alive right until the end."
Although the reality that brings families to Keech is bleak, the experience of families there is not. As the relative of one child puts it: "The whole family was made to feel welcome and cared for." Another mother, whose two sons have a rare metabolic disease, remembers: "As we went into the room, laughter and fun hit us. Some of the children were making cakes and my two boys just couldn't take in all the excitement around us." Eric Fountain says: "When you see the families with these children, there is so much happiness. They have accepted the situation and there is no frustration or blame, just getting the most out of life."
Apart from warmth and care, hospices offer advice, links to other agencies, helplines and outreach visits. The stress of being a lone parent (70 per cent of terminally ill children live in single-parent families), caring for a disabled child who will not recover, can take its toll. In such cases, says Mr Keel, "we do not just go in and take over, we show them how to cope".
Keech Cottage places heavy emphasis on pre-bereavement care for families, drawing out fears and anxieties and offering a safe space for people to share their plans, whether for a memorial book, a funeral, or a death. "It's important for many children that they do not think their mother will make their bedroom into a shrine," says Mr Keel. "They may choose to die here, to choose their own ending."
Interestingly, while parents may resist the idea of death, the children themselves want to know, want to write wills, plan funerals. "If we tell the parents that, it can finish them off," says Mr Keel. "But it is important." Often the families protect the children by keeping silent. "We ask the children, 'what are you most worried about?' and they say, 'my family being lonely when I'm gone'."
The job of the children's hospice is to help move families towards acceptance of their child's life being limited. As Dame Cicely Saunders, founder of the adult hospice movement in the 1950s, discovered, accepting the inevitable helps everyone to feel more at peace. In all this pain and sorrow, when play leaders have to think of answers to "What will happen when they bury my body?" and "What happens to my head?", the vivacity of the children can seem incongruous.
Many either attend school or continue with schoolwork while staying at Keech Cottage. They want, says Mr Keel, to learn and keep on learning. They spend a lot of time out of school, keeping hospital appointments or because they are too ill to attend, so they are keen to take every opportunity to be with their peer group.
"Children want to go to school," says Mr Keel, so Keech outreach nurses go with them, helping with the transfer from home to school. They can administer medicines when school staff may be reluctant to do so. Staff liaise with teachers to take homework back with them, and to hand it in; if intellectual abilities are flagging, the play team supports the syllabuses provided by special schools. "Our children," says Mr Keel, "are still growing, developing, needing stimulation. They still want to learn and are curious. They investigate their surroundings, they make new relationships."
For some, says Katherine Chinner, it will be a question of maximising developmental abilities: keeping language skills going, hanging on to large motor movement even if fine control is lost, deriving pleasure and obtaining information from touch when sight and hearing have gone. For others, specialised equipment at the hospice means that they, too, can participate in activities which able-bodied children enjoy: visits to the park, the cinema or the bowling alley. For teenagers, desperate to find independence, stays at Keech can offer the chance to be out and about and away from being a worry to mum and dad.
For siblings of terminally ill children, the hospice can be a haven, too. It is easy for a parent to concentrate so hard on the ill child that they forget the needs of their other children - and, for that matter, each other. These children may misbehave at school, bunk off, drop behind. Hospices support children who are wrestling with impending loss as well as the process of growing up. As one mother says: "It is a comfort blanket knowing 24-hour help and support is there every day of the year." But it is also sometimes important just to get together and go off to the pub for a drink.
Teachers who work with well children may wonder why someone should choose to witness so much suffering. "It is so rewarding," says Mr Keel. "To have helped families to come out the other side, to have had what we call a 'good death', to know you have done all you possibly could do: that is why we stay with it."
Association of Children's Hospices, 151 Whiteladies Road, Bristol BS8 2RA. Telfax: 0117 9737299; www.childhospice.org.uk Keech Cottage: Great Bramingham Lane, Streatley, nr Luton, Bedfordshire LU3 3NT. Tel: 01582 492339, fax: 01582 564906. Email: email@example.com and website: www.pasque.org
'IT IS NOT SO MUCH DEATH ITSELF AS THE PROCESS OF DYING THAT MOST PEOPLE FEAR'
Around 20,000 children in the UK suffer from "life-limiting" conditions. Children's hospices welcome whole families for respite care; they also provide emergency medical care, palliative care to counter the worst symptoms, terminal care to assist the dying, and bereavement care for families.
The first children's hospice in the world was founded by Sister Frances Dominica in Oxford in 1981. She was a nurse who realised that the needs of terminally ill children were not the same as those of dying adults. There are now 23 working hospices and 15 in various stages of planning. Scotland and Wales have just one each, and Northern Ireland and London none.
Children's hospices are independent voluntary organisations. They receive less than 5 per cent of their funding from government sources - none of it statutory. The Association of Children's Hospices is calling for at least partial statutory funding.
It costs pound;3-4 million to set up a children's hospice and about pound;1 million a year to keep it running. Most hospices provide room for several families to stay at a time, with one emergency bed and community nursing teams to support families at home.
The first adult hospices were founded by religious orders in the 19th century, but the modern hospice movement really began in Britain with the work of Cicely Saunders in the 1950s. A nurse-turned-doctor with a degree in philosophy, Dame Cicely, as she later became, devoted her life to improving the care given to the dying. In 1967, she opened the first modern hospice, St Christopher's in Sydenham, which combined for the first time quality clinical care with teaching and research.
Believing that "it is not so much death itself as the actual process of dying that most people fear", Dame Cicely applied her education and professional background as student of philosophy, nurse, social worker, and physician to the creation of the hospice concept. When planning St Christopher's, she said: "The name hospice, 'a resting place for travellers or pilgrims', was chosen because this will be something between a hospital and a home, with the skills of one and the hospitality, warmth and time of the other."
Each year, about 60,000 adults are admitted to more than 200 hospices in the UK. Nearly half return home again. The average length of stay is 13 days. On average, independent hospices for adults provide 75 per cent of terminal care (the rest is provided by NHS palliative care units, Marie Curie centres and Sue Ryder Homes) but only receive around a third of their funding from the Government.
Hospice Information Service, St Christopher's Hospice, 51-59 Lawrie Park Road, London SE26 6DZ. Tel: 020 8778 9252