Six-year-old Jessie Nolan has cystic fibrosis, and last year managed just 20 days in school. She often has to stay in hospital, sometimes spending weeks in isolation. But these long days are less lonely than they might be, thanks to visits from the hospital's storyteller, or the music teacher, or a visiting clown, or someone who will help Jessie with her art. "Jessie loves to paint," says her mother, Erica. "It's one thing she can excel in and open up through. She never complains, but her pictures show if she's having a bad day. If she is having a good day, her pictures are much more colourful and eye-catching."
The hospital is the Royal Brompton and Harefield in west London, home of the Chelsea Children's Hospital school. Its dynamic education programme is deeply rooted in the conviction that the arts offer sick and troubled children powerful ways in which to express themselves, boost their self-esteem and help them deal with what is happening to them. To do this, it employs a storyteller, an artist and a poet-in-residence, and invites outside performers and musicians to come in to work with pupils.
It does its best to ensure that the 2,500 children who pass through its wards each year keep up with normal schooling, while giving them an array of ways in which they can explore who they are, and what they are feeling. As a result, the school has become known as a world leader in educating sick children, and was deemed a centre of excellence by Ofsted when inspectors visited five years ago.
The school covers four hospital sites, including a unit for children with severe psychiatric problems and a specialist cerebral palsy unit, and in all of them uses the creative arts to alleviate stress, reduce boredom and increase motivation and mobility, as well as to underpin general learning.
"Our students learn to select, record, examine, reject, access, reason, code and decode, stimulate inquiry, highlight perception and develop self-worth," says the CCHS head Janette Steel. The results can be seen in a moving exhibition of paintings, models and poems by young patients, which has recently been touring Europe and is on display in the foyer of the Royal Brompton until the end of February. One striking self-portrait, by nine-year-old Emma Crampton, who has cystic fibrosis, shows her squashed between bars of black. This work, says Ms Steel, "is about the fear she feels about all the tests she has to go through, and what the results might be, and what that might mean".
Across the room is a long and passionate poem by 14-year-old James Heine musing on death - "I am silver, burning among the gems. You are coal, burning slowly, sinking into ash and gloom" - while caricature heads of doctors, modelled from terracotta, reek of the patient's revenge. "When you are in hospital people are always peering and prodding at you," says Ms Steel. "Doing these artworks gave the children a chance to be the ones doing the looking."
Children in hospital can have many problems in addition to the condition that has landed them there. Some suffer a severe loss of confidence, while, according to the Chelsea Children's Hospital school, 40 per cent of those with long-term illnesses have been bullied at school. As a trained drama therapist, Ms Steel is convinced of the healing power of art, and can rattle off a hundred stories of workshops where young psychiatric patients have listened in awe as they heard recordings of their rude and anti-social noises turned into beautiful music, or of children who have come to terms with their loss of hair or burned faces by working on self-portraits, or of a distressed six-year-old boy with cystic fibrosis finally reached through the power of story. "I like storytelling," he told Ms Steel. "It keeps on working when everyone else is asleep."
In the course of a year, about 100,000 children spend time in hospital because of acute or chronic illness, and on a typical day around 3,000 are taught in hospital. There are 26 National Health Service hospital schools around the UK, employing hundreds of teachers, and many pupils will attend them for weeks or months, because of long-term problems caused by burns, accidents, heart conditions, or illnesses such as cancer or cystic fibrosis. Such children are often frightened, angry and in pain. They may have come from abroad and speak no English. They may be very bright, or have special needs, or have been away from school for so long that their learning is way behind their physical age.
And they may well feel forgotten by the wider world, because children with chronic conditions can all too easily slip off the radar of mainstream schools, where teachers are busy and the pace driven by the need for results.
But last November the Government issued comprehensive guidance encouraging schools to maintain close links with children who are off school because of illness and injury. It says children unable to attend school because of medical problems should have at least five hours of home schooling a week or, if they are in hospital for a recurrent condition, have their education start on day one whenever possible. Patients' regular schools must help pupils who are absent, and education and health agencies must work closely to meet children's needs.
Meanwhile, a pilot project last summer has shown how local library services can enhance the lives and learning of children in hospital. Imagination Time provided books and related arts sessions (visits by illustrators, for example) to children in hospital, where, because such provision falls outside statutory responsibilities, it is often inadequate.
The project linked 15 London library authorities with 21 London hospitals, with an additional link in Margate, Kent. Walker Books gave each hospital a pack of 60 books, the Arts Council came up with pound;20,000 and the library development agency, LaunchPad, got it up and running by building links, training library staff to work with sick children, extending the public libraries' national summer reading challenge into hospitals and helping to arrange for authors and illustrators to visit hospital schools.
The Royal Free Hospital school, in the London borough of Camden, used Imagination Time to open up for a book-based activity week in the summer. "Children don't stop being ill just because it's the summer," says teacher Lynette Michael. Authors came in, and the children did arts and crafts projects. "Having professionals in to talk about their work added a bit of excitement and gave them something to look forward to. I'm hoping someone will come back to work with the older children." One problem with hospital school provision is that it generally stops at 16.
"We had a wonderful time learning about how authors and illustrators work," says nine-year-old Amelia Herridge-Ishak, who has leukaemia and is a "regular" at the Royal Free. "It was difficult but they helped us. I'd love to be an illustrator when I grow up."
Part of the project involved the development of a reading wheel, divided into sections - magic, rhymes, pictures - which allows young patients to select the kind of story they want to read from the books available. "That is particularly good because you can take it into isolation wards and ask children what they want to read, then go and get the book," says Ms Michael. The wheel is laminated; one of the many challenges of hospital teaching is the need to be able to wipe clean all books and resources.
The constantly shifting range of ages and abilities is another challenge. Jane Ray, a children's author and illustrator who went into the Royal Free during Imagination Time to read her stories and help with craft projects, was daunted by seeing a couple of 14-year-old girl patients sitting among the younger ones. "But they worked incredibly hard. They didn't want to go at the end of the afternoon."
Stories work for sick children on a variety of levels, she believes, taking them out of themselves and helping them address difficult issues of loss and pain.
Alison Will, children's nursing manager at Queen Elizabeth, Queen Mother Hospital, Margate, says anyone working with children in hospital will grab outside help "with open arms". "We have children who spend seven weeks on traction. The first week they get lots of visitors, then everyone forgets about them."
Television and videos have their place, she says - "after all, it doesn't matter if you fall asleep watching a video; you can just rewind it" - but the children at her hospital loved being able to take part in the reading challenge, and having visitors come in to read to them. "We pushed the children into one room and no one was allowed to interrupt. Children tend to regress to a slightly younger age when they're in hospital, and they feel secure with someone reading to them," says Ms Will.
Imagination Time has finished, but project manager Natasha Innocent says 11 out of the 15 library authorities plan to continue the link with hospitals, and she hopes to put together a wider programme based on lessons learned. "The outcome was patchy, but where there was a strong partnership it worked well," she says.
"Library staff faced a steep learning curve. They had to learn that you can't put up posters in isolation wards because of the risk of introducing infections, and that you never know what age groups you'll have to deal with, and that you can be interrupted at any time by a child needing to go for a blood test or whatever.
"But the most important thing was having someone like me who was able to broker links between libraries and hospitals, and track down the right people to talk to. Everyone would like to do more, everyone thinks it's a good idea, but no one has the time."
www.chelseachildrenshospitalschool.orgFull details of the joint DfESDH statutory guidance - circular 07322001 - can be found under 'publications' in the special needs section of the DfES website:www.dfes.gov.uksen