Postcode lottery in epilepsy care for children

THERE is a postcode lottery of care for children who suffer from epilepsy, senior doctors have warned. 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 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. 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, an organisation that provides specialist services for young people with epilepsy, 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.”

The neurological condition affects one in 200 children in the UK. The condition is defined by recurrent seizures where excess electrical activity in the brain sends confused messages to the rest of the body.

A Scottish Government spokesman said: “Our commitment is to ‘get it right for every child’ and we are determined to meet needs. We will look at 
the report in detail and see what lessons can be learned.”