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Child Health Reviews-UK report calls for epilepsy passport to reduce deaths and improve care for children

The Child Health Reviews–UK report 2013 has recommended that every child with epilepsy has an epilepsy passport to reduce deaths and help improve communication between health professionals involved with their care. 

The report calls for an epilepsy passport which clearly identifies one lead clinician to coordinate care; names the other professionals involved; includes the medications and sets out clear emergency plans.  It also highlights that it is important that parents receive on-going support and care where a child has died.

The research found that there is need for improved care for children and young people with epilepsy.  The report which was launched on 23 September 2013 found that nearly a quarter of deaths in children with epilepsy were potentially avoidable.  It calls for simple measures to reduce the likelihood of future deaths and improve care.
The report was commissioned by Healthcare Quality Improvement Partnership (HQIP) as part of the Clinical Outcome Review Programme: Child Health Reviews-UK.

The study looked at data from a total of 162 children with epilepsies including 61 in-depth case reviews of mortality and children in intensive care. The review led by the Royal College of Paediatrics and Child Health looked at mortality and morbidity in children and young people with epilepsy.  

The study found that 85% of the children who were in intensive care or who died had complex conditions; 39% experienced seizures at least once a week and 49% had attended hospital because of prolonged seizures in the previous year.  Also, 43% had more than three health professionals involved in their care.  

The study found that there have been substantial improvements in the involvement of specialists in the care of these children, in comparison with the last national review of epilepsy care.  The clinical care received by children and young people with epilepsy who have died has not been reviewed since the 2002 National Sentinel Clinical Audit of Epilepsy-Related Death which found that 59 % of child deaths were potentially avoidable. The latest report has found that overall care was good, but that simple interventions could improve care and reduce the risk of future deaths.

The report has highlighted problems of communication between professionals and between professionals and parents as well as lack of recorded access to an epilepsy specialist nurse in nearly half of the children. This further highlights the need for clear information and advice to parents on key warning signs.  

Approximately one in 200 children (60,000) in the UK has a form of epilepsy, making it the most common chronic childhood neurological condition.  Furthermore, about 40 to 80 children die from the condition each year in the UK. In recent years there has been a renewed focus on improving care for people with epilepsy.  This is partially in response to high-profile cases of epilepsy deaths, with efforts being made to address variations in service provision, high rates of misdiagnosis and mismanagement. 

Jane Hanna OBE, Chief Executive, SUDEP Action commented:
“SUDEP Action welcomes this report.  Bereaved parents will be pleased to see that there have been improvements in the care of children with epilepsy since the last national report into epilepsy deaths in 2002.  It remains of great concern, however, that a quarter of deaths were still considered potentially avoidable.  Simple measures, not rocket science, appears to be at the heart of what is needed to improve care and we call for the epilepsy passport to be adopted as a matter of urgency”
Source - Child Health Reviews - UK website

The full report is available at: