The hospice at home

Children’s hospices provide a variety of vital
services to terminally ill children, their siblings and parents.
Natalie Valios looks at one award-winning children’s hospice in
south east England that has succeeded in taking the hospice to the
home.

No parent expects to outlive their child, so
if their son or daughter is diagnosed with a terminal illness they
need all the support they can find to help them come to terms with
it.

Families with a child with terminal illness
living in south west London, Surrey or West Sussex, can complement
statutory provision from health and social services with support
from the Chase Children’s Hospice Service, which won the children
and families category at last year’s Community Care Awards.
Terminal illnesses include a range of cancers, genetically
inherited conditions and metabolic disorders. The service offers
practical, emotional and social support to the whole family.

The length of time that staff from the service
work with a family varies and is dependent on the illness, but
staff are still working with some families who contacted the
service when it first started two years ago. Relationships develop
quickly and the key worker is always invited by the family to
attend their child’s funeral.

Community team leader Veronica Phillips says:
“If we have been involved with the family for a length of time then
we need to say goodbye as well.

“When you work with life-limited children,
people always say that must be a sad job,” says Phillips. “But I
always say that they have a lot of life to live before they die.
It’s very much about trying to enable parents to carry on caring
for the time that they have that child.”

The hospice does not have its own premises;
instead staff carry out community support in families’ own homes.
However, a children’s hospice is being built in Guildford, Surrey,
and is expected to be open by November. The nine-bed unit, which
will also have four family rooms, will provide respite care to
families as well as palliative care.

Referrals are mainly from community paediatric
nurses, social workers and health visitors. Occasionally a family
refers themselves. After referral, staff arrange to meet the
family, and prior to the meeting they check whether the family
knows it has been referred because, says Phillips, an unexpected
call from a hospice service would come as a shock.

The service is justly proud of its ability to
respond to referrals within a week. Each family is assigned their
own key worker, but they are also introduced to a second worker who
they can call on if their main worker is off sick or on
holiday.

Respite care is a core element of the
service’s work, and can take several forms. The key worker can stay
with a child for a couple of hours at their home, playing with them
if they are well enough, giving a parent the chance to go out and
do the weekly shopping. Or they can do an evening sit, so that
parents can have a night out together.

Phillips works with one family with a disabled
son during school holidays so that his mother can take the boy’s
sibling out and do something “school holidayish”. Another family
has two sons with the same rare degenerative, metabolic condition.
Once a fortnight, Phillips helps get them ready at bedtime.

Most parents are exhausted because an
undisturbed night’s sleep is rare, so respite care doesn’t always
involve the key worker staying in the home and the parents going
out – Phillips stays with one girl who has cancer while her parent
has a nap upstairs.

Respite care inevitably means helping with
personal care tasks, although Phillips has never been asked to do
any domestic jobs. If a key worker does not visit the family
weekly, phone contact is maintained. There is also an on-call pager
system for out-of-hours and at weekends, so that parents know there
is always someone on call to talk to if they have any concerns.

Staff also help out with practical matters
such as filling in benefit forms, liaising with social workers and
other professionals involved in the child’s care, and linking
families with other organisations.

Offering emotional support for these families
is vital. “They know they are going to lose their child, but they
don’t know when, so there are issues about outliving your child,”
says Phillips.

Other professionals working with the families
using the hospice service are full of praise. Ten-year-old David
Smith [not his real name], has a complex congenital heart disease
and has been undergoing palliative surgical procedures. His social
worker says: “After David underwent major heart and corrective
surgery he was in intensive care for two months and was extremely
ill. Chase went regularly to visit him, they gave a lot of
emotional support to his mother, looked after the siblings and were
there for the family when they needed them.

“David’s mother found the input from Chase
invaluable and is aware that without their support to her she may
not have had the strength to carry on.”

Staff find that dealing with children who are
aware that they have a terminal illness is a particularly difficult
part of their work. Staff have to handle difficult questions about
such children’s future with great sensitivity.

In the two years that the service has been
running it has had 120 referrals and is currently working with 80
families. This includes 11 families that are being offered
post-bereavement support. After the funeral, the key worker visits
the family and offers emotional support on a weekly or fortnightly
basis, until they reach a point where they feel able to cope.

“It’s about listening – they want to talk
about the death, about what happened, what they think they did
right or wrong,” says Phillips. “In this country we are not so good
at talking about death or dying and sometimes people feel they
can’t talk to their family.

“In a couple they can be at different points
of bereavement, one will want to talk about it and one won’t, so
it’s about trying to get them on the same route. It’s important to
open up communication otherwise you can run into difficulties with
the relationship.”

Research shows that siblings of life-limited
children have special needs which are sometimes unintentionally
neglected by grieving parents. The service used part of the money
from its Community Care award to fund Phillips to study for an MA
in play therapy. With the rest of the money it intends to set up a
support programme for siblings of life-limited children using play
therapy.

“Children learn about the world around them
through play. They often don’t respond very well to direct
questioning, like counselling. It will give them the opportunity to
play in a safe environment with an adult with them who can pick up
on issues that they want to talk about,” explains Phillips.

“A lot of it is about confidence building and
self-esteem raising and helping them be able to tell their parents
what they need and what they want. They don’t like to say too much
about themselves because they know their carers are very busy with
their sick sibling.”

We associate the word “hospice” with death,
because adults enter a hospice to die. But for children, hospices
are more often a place for respite care, as many parents want their
children to die at home. Although the Chase Children’s Hospice
Service has to cope with death, it is much more about living.

Project profile

– Project: Chase Children’s Hospice
Service.

– History: This children’s charity began
fundraising in 1994 and the community hospice service started work
in June 1999.

– Funding: Purely from charitable donation,
there is no funding from any statutory organisations. It costs up
to £2 million annually to run the service.

– Staff: Four community team leaders and a
community team member. The director of care oversees community
support and will also oversee hospice support when the building
opens in November. Fundraising and administration staff are based
at the head office.

– Clients: Families with a life-limited child
up to the age of 19 in south west London, Surrey and West
Sussex.

– Contact: Veronica Phillips, Chase Children’s
Hospice Service, Suite 1B, Parkgate House, 356 West Barnes Lane,
Motspur Park, Surrey KT3 6NB. Tel: 020 8336 1812.