Launched in 1998, this week aims to raise awareness of children with life-limiting conditions and of the support that children's hospices can provide.
Outline script. Sophie is two and a half and has had a rare neurological condition since birth. It affects brain development, causes spasms (a form of epilepsy) and sight problems which mean Sophie is registered blind. She relies on a standing frame, a special high chair and a buggy as she also suffers from spinal damage.
Doctors don't know if she'll ever walk or talk but she has learnt to laugh and is learning how to roll over. Her mother understands the situation:
"There's nothing that can be done about Sophie's condition. Her life expectancy is around 12 years of age."
Sophie needs 24-hour care. When the rest of her family need a break, Sophie gets this care at Keech Cottage near Luton. There she can go swimming in the hydrotherapy pool and take part in music therapy sessions. Her mother can also meet other mums in similar situations. Keech Cottage is a children's hospice.
The hospice movement began in 1967 when a woman called Cicely Saunders opened a home where the suffering and dying could spend their time in comfort and with the best possible loving care. This home became known as a hospice and, during the 20th-century, more and more hospices were established.
Some 15,000-20,000 children in Britain have life-limiting conditions ranging from heart disease to cancer and severe cystic fibrosis. Children's hospices aim to offer medical care plus love and support for the whole family. Their facilities may include such things as a water bed and an outdoor play area designed for wheelchairs. Many have a bereavement suite where, when the time comes, families can grieve the death of their child.
The services offered by the existing 35 children's hospices are free to those who need them but are dependent on public fundraising.
Follow-up. The website of the Association of Children's hospices (www.childhospice.org.uk) offers fact sheets, background notes and contact details of local hospices.
Through discussion, help students to appreciate the differences between a hospital, a hospice and a residential care home. Students might list the facilities an ideal children's hospice could provide. Older students may be welcome as volunteers in a local hospice.