Congress report 4: Epilepsy 12 - improving epilepsy care for kids

In many respects, the results of the audit were not surprising. There are many ways that we can improve paediatric services. For instance, it was revealed that only 46 per cent of children and young people with epilepsy (under half) had access to an epilepsy specialist nurse during the audit period. Meanwhile, 60 per cent of the audited patients (less than two thirds) had seen a paediatric neurologist. According to guidelines from the National Institute for Health and Clinical Excellence (NICE), all children and young people with suspected epilepsy should have access to both.

Some of the most concerning statistics, however, came from the responses of those who had been audited and their patient experiences. Negative experiences mainly appeared connected with the provision of information and how epilepsy is accommodated in an education setting.

In presenting the audit results, Rita Ranmal explained that only 68 per cent (two thirds) of parents felt that they had been given enough information when their child was diagnosed. One parent commented: "More support when initially diagnosed would have been helpful." Meanwhile, one young person commented that he/she often feels that those dealing with epilepsy care "don't talk to me, they talk about me."

They ways in which epilepsy is dealt with in schools appeared to have been the most unsatisfactory experience, however. That was the case in audit results of both children and young people. Only 41 per cent of parents (less than half) felt satisfied with their experience of working with a school to accommodate their child's epilepsy. Similarly, 46 per cent of young people (less than half) felt satisfied when working with their school to deal with their epilepsy effectively.

In concluding the presentation, Dr William Whitehouse expressed hope that the Epilepsy12 project will lead to local and national developments in paediatric epilepsy service provision. He hopes the results will help epilepsy units prioritise local needs and develop local action plans.

Epilepsy12: background
The Epilepsy12 audit came about partly as a result of a high-profile case of paediatric malpractice several years ago. In his introductory presentation, Colin Ferrie quoted a newspaper report about the case. He explained that 600 children had been misdiagnosed with epilepsy in "one of the biggest cases of misdiagnosis in the history of the NHS. Many were prescribed a debilitating cocktail of drugs".

In assessing the impact of this case, the British Paediatric Neurology Association produced a report including several recommendations. These recommendations included the creation of a programme of Paediatric Epilepsy Training (PET) courses. They also included a recommendation that there should be a national audit of all paediatric epilepsy services in the UK.

In attempting to fulfil this recommendation, it was decided that 12 key performance indicators should be created. These performance indicators would be used to assess the quality of available services against NICE paediatric epilepsy guidelines. The audit - and the 12 performance indicators - became the Epilepsy12 project.