Guide to the Epilepsy12 audit 2018/19 - written by children and young people for children and young people

Epilepsy12 is a national audit aiming to improve the quality of care for children and young people with epilepsies in the UK. This guide describes the care provided by paediatric epilepsy services in England and Wales, including their improvement strategies, and was produced as a useful resource for patients and parents.
Two young people show their painted hands! "Written by children and young people for children and young people"
Last modified
21 October 2021

Introduction

Epilepsy is common condition affecting around one in every 200 children and young people in the UK. The Epilepsy12 national audit collects information about care for children and young people with seizures. We aim to help the NHS understand the strengths and ways to improve epilepsy services in England and Wales. 

This guide summarises Epilepsy12 results published in 2020 in our combined annual report. It includes information about the care provided to patients (clinical audit), as well as the services available within each NHS Trust and Health Board area (organisational audit).

Epilepsy12 is commissioned by the Healthcare Quality Improvement Partnership (HQIP) as part of the National Clinical Audit and Patient Outcomes Programme (NCAPOP). 

Continue reading our key messages or download the full guide from the downloads section on this page.

Epilepsy12 Youth Advocates

The Epilepsy12 Youth advocates are a group of epilepsy-experienced children, young people and families working with our Children and Young People Engagement Team (RCPCH&Us) and two epilepsy specialist nurses. Our Youth Advocates champion ways to improve care for children and young people with epilepsy. 

Epilepsy12 works with RCPCH&Us to ensure children and young people can shape and influence the Epilepsy12 audit and epilepsy services. 

Read more about RCPCH&Us and the Youth Advocates award-winning project to support patient’s worries and anxieties: the Clinic Chat Check List. 

Key messages

The results of the audit indicate both areas of good epilepsy care, and ways to improve. Epilepsy12 found that there were a lot of differences between epilepsy services.

The waiting times for Electroencephlograms (EEGs), an important way to test for epilepsy, were longer than recommended in national guidance for some children and young people. 

An infographic showing that 43.8% of children and young people diagnosed with epilepsy obtained an EEG more than 4 weeks after referral.

Few children and young people with epilepsy had been diagnosed with a mental health condition, and many services do not routinely check for this.   

An infographic revealing that only 6.1% of children and young people between 5-15 years and diagnosed with epilepsy had an identified mental health problem.

Epilepsy specialist nurses (ESN) and paediatricians with expertise in epilepsy are providing care to most children and young people with epilepsy. NHS Health Boards and trusts need to employ enough specialist staff within paediatric epilepsy services to ensure all patients and families receive prompt expert advice and support.  

An infographic highlighting that epilepsy specialist nurses were involved in the care of 69% of children and young people diagnosed with epilepsy.
: An infographic highlighting that 15.5% of children and young people diagnosed with epilepsy were seen by a paediatrician with epilepsy expertise.

Based on our results, we have provided recommendations to paediatric clinical staff, healthcare professionals and senior management to suggest improvement areas or recognise their success. Services were then invited to share their improvement plans within our published reports. 

We want to thank the epilepsy services in England and Wales for participating in the audit and quality improvement activities, and recognise their continued dedication to children and young people with epilepsy.

You can find out more about our results by downloading our patient and parent guide or our annual report Epilepsy12 2020 national report from the downloads section of this page.

How Epilepsy12 uses patient data

In order to improve the standard of care for children and young people with epilepsies, the Epilepsy12 audit collects and processes patient data. This information is used to highlight the success of services and identify areas for improvement.  

For more information, see privacy notices below.