News

"No firearms or explosives. Do not break wind (if you can help it)." These could be the tongue-in-cheek ground rules of any teenage common room, but a third - "maximum speed for electric wheelchairs 5mph" - hints at the real nature of the environment. For these are the rules posted on the door of the adolescents' lounge at Acorns children's hospice in Walsall, where guests are not expected to reach their 20th birthday.

Acorns Walsall is one of the few hospices that caters specifically for teenagers, with a dedicated unit for this age group. Unlike in other children's hospices, adolescents are accommodated in their own wing, which is equipped with teen-friendly facilities, away from younger children, toddlers and babies.

Karen Jones, Acorns' adolescent development officer, highlights how different daily life is for the young people who visit the hospice for respite. Most teenagers in ordinary family homes wake up, dress, do their hair, choose whether they want breakfast and make their own way to school.

"Compare that with our young people who would usually be got up in the morning by two carers - or their parents - at a time to suit the carers according to their contract," she says.

"If you are a young person who is not able to communicate your clothes will be chosen for you. You will be made breakfast and if you can't use your arms they will feed you, and then you will wait for your school transport to come and pick you up."

And things are little better at the end of the day, she says, with carers being contracted to come in and prepare teenagers for bed at 7pm - not a time that many teenagers would choose to retire.

In the past, young people with life-limiting conditions such as muscular dystrophy seldom reached adulthood, but these days many are living for longer. However, their options in life are severely restricted.

"I haven't met a young person who has ever managed to get employment. Society does not expect a life-limited young person to want to go to work," says Jones.

But in reality, most teenagers want to conform, says Barbara Shaw, a social worker in the children's palliative care team at Western Sussex primary care trust, which works with young people up to the age of 19.

"Adolescents, whether they have an illness or not, don't want to be different from the crowd. A lot of my work involves exploring how their situations can be made as normal as possible and their health needs met," she says, giving the example of a young person with cystic fibrosis who wants to receive physiotherapy in school without drawing attention.

Shaw says most of her work is with families rather than with the young people themselves. Part of her role includes helping the family deal with the young person's emerging independence. Many families find the transition from children's to adult services difficult. It can cause fear and apprehension, as the family and the young person may have grown used to the staff in children's services.

Children's services tend to be more holistic and more used to thinking in a multi-disciplinary way than adult services, says Ann Goldman, consultant in palliative care at Great Ormond Street Hospital in London. She says families are likely to see a difference in the support they receive and the facilities available to them.

"As the parents get older they are less able to manage their children. Meanwhile, the children are getting bigger but the level of respite is falling off," she says.

In her view, adult palliative care services are not as good as those for children and tend to be focused around cancer rather than non-malignant diseases. She adds that working with teenagers can present its own set of workforce difficulties, as the patients are often a similar age to the nursing and care staff. "Working with people who are learning to assert their independence can be more challenging," she says.

And, as life-limited children grow up, they often develop more awareness about their illness. Katherine Lane, a clinical psychologist at the Lifetime Service in Bath, emphasises that children gradually gain awareness about their condition over time, and in her experience it often becomes more of an issue during adolescence.

The Lifetime Service is a joint nursing and psychology service for children and adolescents with life-limiting or threatening illnesses. Lane says that, although her service looks as much at the psychological side of things as the medical side, this is not reflected throughout the country. She would like to see more focus on the psychological needs of the young people.

"It is easier to have a psychologist as an integral member of the paediatric team than for referrals to be made to separate mental health services. Then the psychologist has a greater awareness of the physical problems," she says.

At Hope House children's hospice in Shropshire, young people are always given honest answers if they ask about their condition.

Senior social worker Jon Mills says some parents try to keep the prognosis from their child, although in other situations it is the young person who tries to protect the adults. In his view it is best to have honest discussions so that everyone understands what is going on.

"Often they want to know more at a certain age," he says. "We are called a hospice and there's no point in calling ourselves anything different. Often the young people are beginning to understand what the term hospice means."


Although many healthy young people begin to date and form relationships during their teenage years, the issue of sexuality is more complicated for those who are life-limited. Mills says often their sexuality is ignored, but adds that he does not know how to improve the situation.

Friendships can also cause difficulties. Mills says residential and special schools are often some distance away, and if friends have disabilities it can be difficult for them to stay at the hospice.

Working with young people with life-limiting conditions can be emotionally draining and the staff themselves need support. Hope House employs a staff counsellor two days a week, in addition to formal clinical supervision and more general peer support.

"It's the nature of the job. We work with children who die and their families. It's difficult but we are providing a service that is genuinely needed," says Mills.

"We never get used to it but we learn how to cope and what we need ourselves. We'll finish a session with a family and then get our support."

What about siblings?

"You can't put it on paper. You have to live it to know what it's like," says 15-year-old Ben Wescott.

His sister Lauren, eight, has cerebral palsy and is unable to walk, talk or eat without help. Three or four times a year she goes to an Acorns hospice for a week or two.

"She gets a break from us and we get a break as well as it can be stressful," says Ben.

Ben is a keen member of the Acorns sibling project, which supports the brothers and sisters of the young people who stay in the hospices. The activities organised vary from outings, and sports and drama to writing a magazine. Some of the attendees, aged between 12 and 18, have already been bereaved while others have not.

But the health of their ill sibling is never the focus of the get-togethers. "People act as normal people. If they want to tell you they will," he says.

He advises others in his position to get involved in similar projects because the people who attend "sort of already know and don't need to ask awkward questions".

It is the job of Gill Arens, the community sibling support leader, to contact the siblings and families to let them know about the groups on offer.

"Going through adolescence is a stress in itself anyway and if there is the added strain of bereavement or an ill brother or sister then that heightens any other stress," she says.

As well as organising the sibling groups Arens also offers one-to-one counselling. She adds that siblings can go through a range of emotions such as survivor guilt, where they question why their brother or sister is ill and not them, or an ongoing feeling of anxiety about when the death might occur.

Midnight artist

Hanging on the wall in the over-18s room at Acorns Walsall hospice is the sort of calendar that most young men drool over. The picture of the lingerie-clad woman, along with the flat screen computer and modern stereo system, would not look out of place in any young man's bedroom. 

Eighteen-year-old Adam Taylor is one of the guests who likes using the over-18s room, as well as the adolescents' lounge, where he says the older guests can gather in privacy, away from the younger children. 

Adam has congenital muscular dystrophy and has been coming to the hospice for four years. He is unable to walk, has low muscle tone and suffers from back pain. He needs a daily session of physiotherapy or hydrotherapy. 

Adam has three stays at the hospice planned this year, but wishes there were more. He used to arrive every month for a long weekend, but is no longer able to stay as often because he is attending residential college studying art and design.  

When he is staying in the hospice he enjoys theatre trips - the most recent being one to Miss Saigon - and to use the karaoke machine (he prefers Christina Aguilera to Kylie Minogue). In addition he spends his time surfing the internet, drawing and painting. 

"I was up until midnight painting a picture. I have to time it right so that the staff are free and can sit with me," he says.  Adam would recommend other young people with similar conditions to visit a hospice for respite.  

He says: "The first time my mum left me on my own, half an hour later I phoned home and asked her to come back as I wanted to go home. I didn't like it. Now I can't wait to come. You can just be yourself."