Support for young epilepsy sufferers ‘not good enough’

The standard of care patients receive is “variable”, according to the first national audit of epilepsy services for young people.

The report, conducted by the Royal College of Paediatrics and Child Health, found significant gaps between recommended practice and delivered practice throughout the UK.

The college said that two in five children do not see a paediatric neurologist when required and 47 per cent of units did not have a specialist epilepsy nurse.

Paediatrician and report author Dr Colin Dunkley said: “We’ve seen marked steps forward in epilepsy care for children in recent years – the majority of children are now being seen by paediatricians with expertise and many are getting detailed diagnoses and being prescribed the most appropriate medicines first time. But there are certain areas that need to be improved if we’re to give children and young people the best
possible medical treatment and ongoing care to help manage their epilepsy and maximise
their learning and quality of 
life.”

Royal College of Nursing chief executive and general secretary Dr Peter Carter added: “Epilepsy is clearly being treated very well in many parts of the country, and specialist nurses have led the way in helping children and their families to manage epilepsy.

“However, it is a matter of profound concern to us that this is not the case everywhere.

“The recommendation that all children have access to a specialist nurse is there for a reason – 
the nurse can offer an unparalleled combination of expert clinical advice alongside practical 
help for children and their families.”

David Ford, Young Epilepsy chief executive, added: “More must be done, and quickly, if we are ever to make meaningful 
improvements to these young lives

“The support received by young people with epilepsy just simply is not good enough.”