Epilepsy12 National Organisational Audit Report 2018

This 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. It shows improvements in some areas, including numbers of epilepsy nurse specialists and paediatricians with expertise, but a considerable need for progress in others.

Read our key messages and download our reports, including versions for parents and young people, plus detailed results.

Background

Epilepsy affects about 112,000 children and young people in the UK. The Epilepsy12 audit (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.

This report, which you can download below, captures details of the organisation of paediatric epilepsy services for children and young people in England and Wales as described at April 2018. Data was submitted by 148 Health Boards and Trusts.

Epilepsy12 supports the work of the Organisation of Paediatric Epilepsy Networks in the UK (OPEN UK), established in 2015 to join up Health Boards and Trusts into functioning regional paediatric epilepsy networks to encourage and stimulate quality improvement.

Key messages

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.

Our 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:

  • 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’.

Download our full report

Summary report for parents and young people

Our report for parents and young people explains the organisational audit. It highlights the areas where epilepsy services should be improved, and shows who should be responsible for making those improvements. 

Download our parents and carer reports in English and Welsh

Results by Health Board/Trust and regional network

Our detailed results spreadsheet (an MS Excel file) covers the 2018 organisational audit measures.

In the first tab, Summary, you can click on one of the 10 topics to see results for that topic, or 'All data' to see results for all topics. See below screenshot. 

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You can filter each worksheet to view and compare data for one or more NHS Health Boards / Trusts, or PEN Regional Paediatric Epilepsy Networks. Or, you can view for all units in England and Wales.

The audit measures that relate to the national report's key findings are highlighted in purple.