Home from home
Even those who have never set foot in one know that hospices are places where the terminally ill are cared for in their last days. So the words "children's hospice" tend to conjure up dismaying images of death in childhood. Demelza House, in Sittingbourne, Kent, works to counteract that image, says spokesman James Hanaway. "Life is our focus here. We're adding life to days when days can't be added to life."
Demelza House, a collection of modern, farmhouse-inspired buildings off a country lane, certainly feels as if it is more about life than death.
Inside, the building is bright and cosy with fresh flowers, squashy couches and smells of cooking. Touches such as a rocking horse and piano - and comfortable bedrooms leading on to the garden - all make the place feel more like a family home than a hospital.
All 450 children who use Demelza's services have life-limiting conditions; few are expected to live beyond early adulthood and some will not even get that far, despite medical advances. The hospice provides medical and emotional support to children, and gives respite, advice and 24-hour-telephone help to families - as well as offering care at the end of life, and support for families in bereavement.
Children's hospices are a relatively recent phenomenon in this country; the first one, Helen House, opened in Oxford in 1982. Now there are 40 around the UK, set up to support the estimated 20,000 children who have life-limiting illnesses. Last May, Tony Blair announced a pound;27 million grant over three years to the children's hospice movement. Though welcome, the sum is a "drop in the ocean", says James Hanaway, who is Demelza's fundraiser. Demelza alone costs pound;3.5 million a year to run; on average, hospices receive less than 3 per cent of their funding from their local primary health care trusts and more than a third get no statutory funding at all.
Yet the service they provide is invaluable. In a large meeting room at Demelza, the Panter family are sitting with other parents and children.
Matthew Panter, aged three and a half, was diagnosed two years ago with a serious lung condition. He looks lively and alert, sitting on the floor playing a game with his younger brother. But he wears a small backpack to pump drugs into his heart 24 hours a day and is not much bigger than 18-month-old Tom.
His parents Sharon and Christian learned of their son's condition - a rare disease called severe primary pulmonary hypertension - two years ago, after he collapsed at a family barbecue and was taken to Great Ormond Street children's hospital. They were plunged into a frightening new world in which they had to come to terms with their son's condition and learn to manage it. For Matthew too, life changed. Music lessons and Tumbletots ceased. Swimming was out of the question and Matthew's private nursery was no longer willing for him to be left there unaccompanied.
"Normal life does not carry on," says Mrs Panter. Living just 10 minutes'
drive from Demelza House, they were aware of its existence but did not get past the entrance until a few months ago. "Knowing the associations of a hospice, we never wanted to come down here," says Mrs Panter.
Nonetheless, in April she started to attend the "meet, chat and chill"
sessions Demelza runs for children and families, supported by a social worker. Later, the Panters came for a respite visit for the whole family, and stayed for three days. "The children were totally looked after. I was told not to move off a chair," says Mrs Panter. "By the second day, I was beginning to release control. I went in the garden and sunbathed. It felt weird."
Caring for children with life-threatening illnesses imposes huge strain on families. Around 80 per cent of what Demelza does is respite care, looking after children while parents go away or taking care of both adults and children. Children can come for emergency or planned respite care; some come to convalesce after hospital operations. They love it, say their parents. Matthew cried when it was time to go home.
At the other end of the room, two more parents are chatting. Their sons are both at Abbey Court special school, in Rainham, Kent; both, typically for children who use Demelza, have multiple, complex needs.
"School is there to teach your child. Demelza is there to care for your child," says Hayley Musk, whose son Nathan, 10, has what she terms "a string of conditions".
Mrs Musk is talking to fellow parent Glenda Faulkner about how to prepare a child for operations, how to get holiday insurance for a child with severe special needs, and where to hire specialist equipment. She comes to these coffee mornings whenever she can. "I spend a lot of time on my own at home," she says. "I can go a whole week without seeing anyone on a social level."
Both families sometimes drop their sons off for a short stay at Demelza, giving them time to recharge and focus on their other children. "You love them to pieces, but you just need that space," says Mrs Musk. "Children get one to one here, or two to one if they need it. It's like a little comfort zone; the limitations on them are lifted."
"The word hospice doesn't come into it," says Mrs Faulkner. "It's a home that enables you to get a night's sleep. Whatever more life throws at you with your child, you know Demelza will be there."
When nine-year-old Samuel Faulkner stays at Demelza, his mum gets the chance to focus on her three other children. "I hate the word 'normal' but you can do normal family things - go for picnics, go swimming, read the paper."
In the lobby of Demelza House is a framed photograph of a long-haired child, engrossed in a daisy chain. It is Demelza Phillips, who died, in 1990 aged 24, of a brain tumour. She had worked in a children's hospice in Birmingham and her parents were inspired to start a hospice in the South East. They fundraised, campaigned and subsequently bought the six-acre plot where Demelza now stands. Derek Phillips, an architect, designed it from scratch and Demelza House opened to children in 1998.
Since then, it has gone from strength to strength; a suite for teenagers (see Nicole Dryburgh, right) is a recent addition, as is a new training and education centre, housed in a building modelled on a traditional Kentish oast. The centre will be used for training nurses and others in palliative care, making income for the hospice.
Elaine Lawrence is head of care at Demelza, leading a team of about 70 people. "It's very different from being in an adult hospice," she says. "On many a day, the place is fairly riotous. We're very much about memory-building."
For children who live too far away to get to Demelza regularly, there is an expanding home service. Dominique Grosse's son Alexander, aged four, had retino blastoma, a rare cancer of the eye which resulted in him having one eye removed last summer. The diagnosis and subsequent medical procedures were traumatic for the whole family; Alexander developed sleeping and behavioural difficulties and his parents were overwhelmed. "I found it hard not to have anyone supporting us. We needed to be treated as mummy and daddy," she says.
She contacted Demelza House's outreach service and, once the family had been assessed, was assigned a community paediatric nurse, who makes fortnightly home visits and is available for emergency advice at any time.
The community nurse also briefed Alexander's teachers before he started in a mainstream primary school this term.
Over the summer, Alexander had a series of play therapy sessions - organised by the home service - to help him come to terms with having cancer and having to wear a prosthetic eye. He has to take the eye out at school to clean it and care for it, but does not want his classmates to know. In play therapy, he has been able to practise the skills needed on a toy rabbit with a prosthetic eye, and explore his feelings of having lost control over his own body since his diagnosis.
This expert support - which was refused by the local mental health trust - has made all the difference, says Ms Grosse. "As parents, you struggle to keep strong enough for him. It's been great for us as a family to know he's getting the right therapy. It's been the missing link that nobody else could fill."
For more information on Demelza House, visit www.demelza.org.uk. The Association of Children's Hospices is at www.childhospice.org.uk