ACT - The Association for Children's Palliative Care

Children’s Palliative Care is about living – not just dying 

This week marks National Children’s Hospice Week (15 to 22 September), celebrating 25 years since the world’s first children’s hospice, Helen House, was established in Oxford in 1982.

National Charity ACT, which represents families and children with life-limiting or life-threatening conditions, says that although children’s palliative care services have greatly improved in the last 25 years, there is still a real shortage of dedicated services, funding and support for families and children. ACT says that one of the major stumbling blocks to improving these services is a lack of understanding of what ‘children’s palliative care’ means and what these children, young people and their families need.  To help raise awareness, ACT has produced two key fact sheets designed to raise awareness and dispel some of the myths about children’s palliative care.

Lizzie Chambers, Chief Executive of ACT, says: “We have come a long way in the last quarter of a century; today children and their families can benefit from children’s hospices, and other nursing and support services that help the family at home. However our family members still tell us about their constant battles with a wide range of agencies to get the support, funding and recognition of their child’s needs.”

“They tell me that too many agencies just don’t understand what children’s palliative care means – all too often they focus on the ‘dying child’ rather than thinking about helping them to have a good life. Many assume that children’s palliative care is providing support at the end of a person’s life, just like adult palliative care services. So we are calling on all relevant agencies to have a better understanding and awareness of children’s palliative care as an approach to care that begins at diagnosis and spans the whole of a child’s life.” 

ACT says that there are about 25,000 children and young people with a life-limiting or life-threatening condition, and every year approximately 3,400 children will die.  It’s estimated that around 80,000 to 100,000 family members and carers provide 24-hour care and support for a child – many of whom have very complex health care needs and disabilities.

ACT’s two new fact sheets are of relevance to all practitioners who may support children and young people with palliative care needs. You can download free copies of these Children’s Palliative Care and Adult Palliative Care: Similarities and Differences  and Children’s Palliative Care: Descriptions and Definitions,  or you can call ACT on 0117 9221556 and we can send you a free copy.