Juvenile Huntington's Disease - children's hospices

What is a children’s hospice and what can it offer?

There are 39 fully operational children's hospices, four hospice at home services and one day care service around the country, who provide support for families with a life-limited child. The support they provide depends on other local services available, but they can provide families with the following:

• In-hospice respite breaks for the child/young person with or without their family
• Hospice at home services which may include support from specialist nurse and respite in the home
• Therapy services such as music and play therapy
• Activities / building memories
• Day care services
• Key worker or advocacy role
• Family support, often including support specifically for siblings, parents or grandparents
• Symptom control advice
• Support to multi-professional team
• Care at the end of life
• Bereavement support

“They [the staff at the hospice] were excellent. I could not fault their care and support both to me as well as to Dan. Nothing was too much trouble and it was a real rest for me. Sometimes I stayed in there if Dan was particularly ill and sometimes I left him there with them as I was so confident that they would always take excellent care of him. Dan found them a great support and help and loved going in there. Two nurses were ‘alloted’ to his care and they were the ones who always looked after him. It was a learning curve for us all as Dan was the first case of Huntington's that they had had in that hospice. If they did not know something or met a problem, they would make every effort to find out how best to manage it. I could not have asked for better care, not only the care they gave to Dan but also the support they have given me. It is now 7 years since Dan died and those 2 nurses still contact me quite frequently to see how I am getting on.” Dan’s Mother.

“When a child is ill the stress the family around them suffer is sometimes forgotten. However, the children's hospice movement and particularly in our experience the ellenor foundation, realise the importance of working with the family. The constant support and their excellent advice have proved invaluable and we are truly thankful.” Raisa’s mother.

Further Links

• The Association of Children’s Hospices
  ACH is the umbrella association for all children’s hospices in the U.K. There is information about children’s hospices and a useful map of Children’s Hospices in the U.K.
  www.childhospice.org.uk

• The Association for Children’s Palliative Care
  ACT is striving to achieve the best quality of life and care for all children and young people with life-threatening or life-limiting conditions and their families. It campaigns for the development of children’s palliative care services, works with professionals to promote best practice and empowers families to have a voice in the development of palliative care services.
  www.act.org.uk