Care warning as more surviving with ‘life-limiting’ conditions

Advances in treatment for conditions including muscular dystrophy, neurodegenerative disorders and severe cerebral palsy mean patients are living longer.

But researchers led by experts at Leeds University warn that as numbers continue to rise, there will be a growing burden on specialist palliative care services for children and young adults, particularly in deprived areas.

They say the problem could be hidden because the national toll is not recorded, prompting concerns health chiefs are underestimating local provision required. This is leaving services under-resourced and overstretched in the face of evidence specialist care can make a huge difference to children’s quality of life and of family members.

Analysing NHS statistics on children’s admissions to hospitals in England, the researchers calculated around 32 in 10,000 children aged under 19 had life-limiting or life-threatening conditions in 2010 – exactly double the figure previously reported.

From this, they estimate that there are about 40,000 children in England living with life-limiting conditions, with a steady increase particularly in the 16-19 age group, suggesting the growing need for support is being driven by longer survival times rather than a rise in cases.

Lorna Fraser, of Leeds University, who led the study, said: “Children and teenagers with life-limiting medical conditions will often need many years of specialist palliative care before they reach the end of their life, making it all the more important that their needs are not overlooked.

“Our study has confirmed doctors’ suspicions and identified an escalating need for specialist paediatric care services. It is vital that health authorities now take this message on board and plan accordingly.”

The study by the university, Martin House Children’s Hospice at Boston Spa, near Wetherby, and the Children’s Hospital, Cardiff, was funded by the charity Together for Short Lives.

Co-author Jan Aldridge, consultant clinical psychologist at Martin House, said: “Significant numbers of children with life-limiting conditions are living longer now, thanks to advances in medical care, but for many such children life gets harder as they get older.

“Statutory services are either non-existent or struggle to meet the needs of these older teenagers and young adults.

“At the moment, these children and their families place great value on the all-round support package provided by hospices such as Martin House, which help to address their medical, social and emotional needs. This model of specialist holistic care is one that health authorities and other services might draw upon.”

Life-limiting conditions are those for which there is no reasonable hope of cure and from which children will die but the study also included life-threatening conditions for which cures are available, although these might fail.

Barbara Gelb, chief executive officer at Together for Short Lives, said: “This study affords a real opportunity to better understand need and should help commissioners and service providers alike to better plan and deliver sustainable services when and where they are most needed.

“As the study shows, more young people with long term conditions are living longer. However we know that the specialist services they need are not meeting demand.”

A new system for funding of palliative care is due to be piloted from next month under a Department of Health initiative.

The study is published today in the journal Pediatrics.