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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.