The number of children with conditions such as muscular dystrophy, neurodegenerative disorders or severe cerebral palsy who are surviving into adulthood has been underestimated, a new study shows.
Research led from the University of Leeds, has shown that the number of children and young adults in England with a ‘life limiting condition’* is far higher than had previously been thought and is increasing year on year. As numbers continue to rise, this will place a growing burden on paediatric palliative care providers and young adult services, particularly in deprived areas.
The study, which is published in the journal Pediatrics, was a collaboration between the University of Leeds, Martin House Children’s Hospice in Yorkshire, and the Children’s Hospital, Cardiff. It was funded by the charity Together for Short Lives.
Experts agree that children who are born with or contract an illness that can shorten their life, and who may not reach adulthood, should have access to specialist palliative care. This can make an enormous difference to the quality of their life and to that of their family members.