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Young epilepsy patients face lottery in specialist nurse access

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Less than half of UK children with epilepsy have seen a specialist nurse within 12 months of diagnosis, despite guidelines stating that all should be offered care input from one.

The standard of care offered to the one in 200 children in the UK affected by epilepsy is variable, according to the results of the first national audit of epilepsy care for children and young people.

The Epilepsy12 Audit report was published yesterday by a consortium of more than 40 organisations, led by the Royal College of Paediatrics and Child Health and including the Royal College of Nursing and the Epilepsy Nurses Association.

The audit found only 46% of children were referred to a epilepsy specialist nurse within a year of diagnosis and 91 of the 193 units that were assessed did not employ a specialist nurse – equivalent to 47%.

The National Institute for Health and Clinical Excellence and the Scottish Intercollegiate Guidelines Network recommend all children diagnosed with epilepsy should be offered input from a specialist nurse.

The audit report stated: “All services without an epilepsy specialist nurse should create new posts to ensure adequate care. Units where many children with epilepsy are not having input from an epilepsy specialist nurse should improve their care pathways and epilepsy specialist nurse provision.”

RCN chief executive and general secretary Peter Carter expressed “profound concern” that less than half of children with epilepsy had access to a specialist nurse.

He said: “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.”

Other findings from the audit were that 40% of children did not see a paediatric neurologist where required, that only 65% of children had an appropriate first assessment and 35% did not have a complete first assessment.

However, more positively, 79% of children with epilepsy saw a paediatrician with specialist training in childhood epilepsy, 87% had their seizure type appropriately classified and 95% were given carbamazepine appropriately.

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