Valuing short lives: children with terminal conditions, a guide for donors and funders

There is little respite for families caring for a child with a life-limiting condition. Frequent visits to hospitals and interrupted nights are often coupled with caring for siblings and running the family home.

NPC’s report, Valuing short lives, outlines the requirements of families with children who have life-limiting conditions, compared with the reality of the services they receive.

Did you know?

  • Around 25,000 UK children under the age of 19 are living with life-limiting conditions, such as muscular dystrophy or severe cerebral palsy.
  • Whilst public services concentrate on the medical needs of the child, families receive little or no support with the day-to-day care of a very sick child.

The report highlights issues such as:

  • The need for better services for adolescents once they have outgrown children’s services, and
  • The importance of practical support for parents, such as accommodation near to hospitals where their child is being treated.

This report is best read in conjunction with Ordinary Lives, NPC’s report on disabled children. You may also be interested to read What price an ordinary life?, a cost-benefit analysis of two disabled children’s services.

 One parent told us how her Rainbow support worker would pick the siblings up from school or sit with the sick child so the mother could give her other children some attention.

Iona Joy, report author