Let’s face the music

“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.”