Child epilepsy care variations revealed

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 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 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.

“Epilepsy can be a very distressing and worrying illness for a child to have. Therefore, having a specialist nurse who is on hand to answer questions and give advice on avoiding complications can make all the difference to how well the condition is managed.”

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. The effects of the condition can be devastating and should not be underestimated.

“Early and accurate detection are crucial factors in effective management of epilepsy. We must see a step change in services to make this a reality.”

The researchers gathered data from 98 per cent of children’s NHS services. The report also features some feedback from patients and carers.

A quarter of young people found the information they were given difficult to understand.

Dr Dunkley continued: “Ultimately, what we want to see is better outcomes for children with epilepsy and that is why we have asked all local services to prepare action plans in the light of the audit findings.”