Epilepsy12 National Organisational Audit Report 2018

This report is the first formal output of Round 3 of the Epilepsy12 audit. It describes the organisation of paediatric epilepsy services for children and young people in England and Wales, as at April 2018.

Download the full report (PDF) below.

Epilepsy affects around 112,000 children and young people in the UK. The Epilepsy12 audit (the National Clinical Audit of Seizures and Epilepsies for Children and Young People), uses data collected from hospitals and clinics to support quality improvement in paediatric epilepsy services.

The Epilepsy12 2018 National Organisational Audit Report captures details of the organisation of paediatric epilepsy services for children and young people in England and Wales as described at April 2018. The results detailed in the report reflect data submitted by 148 Health Boards and Trusts with a paediatric epilepsy service across England and Wales.

As featured within the report, the Epilepsy12 audit supports the work of the Organisation of Paediatric Epilepsy Networks in the UK (OPEN UK). The Organisation of Paediatric Epilepsy Networks in the UK (OPEN UK) was established in 2015 with the aim of joining up Health Boards and Trusts into functioning regional paediatric epilepsy networks to encourage and stimulate quality improvement.

Key messages

The Epilepsy12 2018 National Organisational report shows incremental improvements in some areas of paediatric epilepsy service provision, including:

  • overall numbers of epilepsy nurse specialists
  • overall numbers of paediatricians with expertise, and
  • the number of specific clinics for children and young people with epilepsies.

However, there remains a considerable need for improvement in the following areas as highlighted in the recommendations within the report:

  • sufficient provision of defined general paediatricians with expertise in epilepsies to correctly diagnose epilepsy and  provide appropriate ongoing management for all children with epilepsy
  • sufficient provision of epilepsy specialist nurses to ensure ongoing input to all children with epilepsies
  • ensuring rescue medication training
  • ensuring epilepsy clinic capacity
  • fulfilling Best Practice Criteria
  • defining paediatric neurology referral pathways
  • facilitating local access to vagus nerve stimulation
  • co-locating mental health provision
  • improving ‘service contactability’.
Infographics showing that for Health Boards/Trusts in England and Wales (as at April 2018), 94.6% employed a consultant paediatrician with expertise in epilepsy, 77.7% had at least some Epilepsy Specialist Nurse provision within their paediatric service and 12.8% facilitate mental health provision within epilepsy clinics.

Regional paediatric epilepsy network results

OPEN UK Paediatric Epilepsy Regional Network level results for each of the 2018 Organisational Audit measures are available to view in the downloads section below. 

The audit measures that relate to the national report key findings are highlighted in blue alongside an indication of where to view the related network results graph within the appendix of the full report.