Spotlight falls on child epilepsy deaths
The Healthcare Quality Improvement Partnership, Independent Advisory Group picked the topic for review on the basis that epilepsy is the most common chronic neurological disorder.
About one in 200 children in the UK have a form of epilepsy and between 40 and 80 children die each year as a result of the condition. A significant number of these could have been avoidable.
There has not been a review of the clinical care received by children and young people with epilepsy who have died since the 2002 National Sentinel Audit.
The organisations believe there is still much to learn about SUDEP and epilepsy-related deaths in children and young people. The Child Health Reviews –UK programme will attempt to tackle this by reviewing variations in the quality of care they received.
The RCPCH made a call for suggested topics in 2011. It received more than 60 responses from stakeholders and consultant paediatricians. Epilepsy mortality and serious morbidity was chosen from a shortlist of 18.
Epilepsy Bereaved was one of the organisations that took part in the process. Child Health Review researcher Lindsey Hunter praised EB director Jane Hanna for providing “some very useful feedback” in the early stages.
“We would like to thank you for your help in this process …. and we look forward to working with you in the future,” she said.
Dr Colin Dunkley, a consultant paediatrician at the RCPCH, said: “The child health review provides a great opportunity for families and professionals to work together to understand more about epilepsy and its consequences.
“By looking at paediatric care in both a reflective and systematic way we can advance an evidence base towards greater understanding and improved care.”