Where life is put first

This week is Children’s Hospice Week. Aileen Hunter
explains why it matters.

There are about 20,000 children in the UK suffering from
conditions which mean they are unlikely to reach adulthood.
Families of children who require palliative care face overwhelming
stress as a result of the progressive and terminal nature of the
child’s illness. They need flexible support which adapts to
the changing needs of the child.

The specialised care offered by children’s hospices
responds to the unique nature of those needs. Their services enable
life-limited children and their families to get the very most from
their time together and to live their lives to the full.

There are now 32 operational children’s hospice services
across the UK, with more at the building or planning stages. Each
children’s hospice is independent and most have developed as
a result of concerned parents or other individuals wanting to
support families caring for a child with a life limiting condition.
They fill a gap that statutory services cannot span yet they
receive very little statutory funding and in some cases none at
all. They rely almost entirely on public support and donations in
order to survive.

Children’s hospices are generally small units of around
eight to 10 beds, offering a wide range of services from specialist
respite and terminal care to bereavement counselling and support
and group work.

The major focus is on specialist respite care and most
children’s hospices employ a multi-disciplinary team
including RSCN staff nurses, nursery nurses, physiotherapists,
occupational therapists, play specialists, teachers, youth workers,
social workers and care assistants. Some hospices also provide
outreach nursing care in the community to complement and support
the local community nursing services. Individual care is tailored
to the needs of the particular child and wherever possible the
child’s normal home routine is followed in order to maintain
familiarity and a sense of security. Some hospices also employ link
workers to support families from different cultural
backgrounds.

The family focus means that in many cases the whole family come
to stay at the hospice with the child. Some parents use the
facilities as a means of taking a rest from routine household tasks
and having support in caring for brothers or sisters. Others will
leave their sick child at the hospice while they have a short break
or take they rest of the family away on holiday. This varies
enormously from hospice to hospice, and from family to family.

Better supportive care for children with life-threatening or
life-limiting conditions has meant that an increasing number
survive into adolescence and young adulthood. A growing number of
children’s hospices are now developing adolescent units,
offering care that provides for the specialist needs of these young
people.

These units provide an opportunity for adolescents to meet with
peers, and share experiences as well as giving them the facilities
to be independent and explore the issues facing any young person at
that stage of their life. Specialist youth workers and experienced
staff enable adolescents to work through their fears and feelings
and express themselves as individuals in their own right.

Children’s hospices are bright, airy, cheerful buildings,
full of fun and laughter. They are essentially very positive places
that focus on helping children to live whatever life they have to
the full.

– The Association of Children’s Hospices represents
children’s hospices and the
children and families
using them across the UK. It also co-ordinates Children’s
Hospice Week, 20-27 September.
www.childhospice.org.uk

Aileen Hunter is campaigns co-ordinator for the
Association of Children’s Hospices.