Epilepsy12 - national organisational audit and clinical audit - 2021

Epilepsy is the commonest significant neurological disorder affecting children and young people. Published in July 2021, these latest results from Epilepsy12 provide insight into the diagnosis and care of children and young people with epilepsy, and the organisation of paediatric epilepsy services in England and Wales.
Epilepsy12 clinical and organisational audit report and appendix A and B

Read our summary here, or download the full report and appendices at the bottom of this page.

Introduction

In previous stages of the Epilepsy12 clinical audit (see below for a background to this programme), there has been considerable variation in the ability of different Health Boards and Trusts in England and Wales to provide adequate workforce time and resources to participate in the national audit. In 2020 this has been more challenging than ever.

We want to recognise the sheer dedication to children and young people with epilepsy that has driven participation in the audit and quality improvement activities this past year. However, gaps in both clinical and organisational audit data indicate that some services had to suspend their activities to focus on maintaining core clinical duties.

Care provided to 6177 chlldren and young people; 34% (2016) were diagnosed with epilepsy | CYP were referred in 2018/19 with 12 months of subsequent care; some during the COVID pandemic | The patient care described is from 103 (of 145) English NHS Trusts and Welsh NHS Trust Boards | Organisational structure data is from 119 (of 145) Englsh NHS Trusts and Welsh NHS Trust Boards

Overall, the results for the two cohorts are similar, which highlights both consistent areas of strength as well as continued scope for improvement in aspects such as input from specialists, comprehensive care planning, access to epilepsy surgery services, and links to school epilepsy care plans.

There are case study examples from NHS Trusts, our Epilepsy Quality Improvement Programme and the Epilepsy12 Youth Advocates, showing ways services have been working together to make lasting improvements in care.

Key messages

There were very few children and young people with an identified mental health condition in cohort 2. Without widespread use of screening, opportunities for referral into the appropriate pathway for assessment could be missed.

Mental health care: 5% (68 of 1358) children and young people 5-15 years and diagnosed with epilepsy had an identified mental health condition | Mental health screening - 17% (20/119) of Health Boards and Trusts have formal screening for mental health disorders


Children and young people received crucial diagnostic investigations, such as EEG and ECG, during their first year of care. However there were delays, with waiting times exceeding national guidance in some cases.

First EEG waiting times - 53% of children and young people diagnosed with epilepsy obtained their EEG within four weeks of request


More children and young people are receiving input into their epilepsy care from specialist nurses and paediatricians. Some children and young people who had on-going seizures did not receive referrals to tertiary neurology services.   

Epilepsy Specialist Nurses - 78% of children and young people diagnosed with epilepsy had input from an Epilepsy Specialist Nurse | Paediatrician with expertise - 87% of children and young people diagnosed with epilepsy had input from a paediatrician with expertise

Background

Epilepsy12 was established in 2009 and has the continued aim of helping epilepsy services, and those who commission health services, to measure and improve the quality of care for children and young people with seizures and epilepsies. The audit is commissioned by the Healthcare Quality Improvement Partnership (HQIP) as part of the National Clinical Audit and Patient Outcomes Programme (NCAPOP) and is delivered by the Royal College of Paediatrics and Child Health (RCPCH).

Epilepsy is the most common significant long-term neurological condition of childhood and affects an estimated 112,000 children and young people in the UK. Epilepsy12 seeks to help improve the standard of care for children and young people with epilepsies. To do this, the audit collects and processes patient data. This information is used by the audit to highlight areas where services are doing well, and also identify areas in which they need to improve.

The clinical audit data describes patient care of ‘cohort 2’. This is children and young people who had a first paediatric assessment for a ‘paroxysmal episode’ (or episodes) between 1 December 2018 and 30 November 2019. Paroxysmal episodes are any epileptic seizures, non-epileptic seizures, or seizures of uncertain origin. Epilepsy12 follows patients for twelve months of care following their first assessment. For many children and young people in cohort 2, this includes care provided during the COVID-19 pandemic in 2020.

The organisational audit data describes the services and workforces of paediatric services, at Trust and Health Board level, in England and Wales as they were in November 2020. At this time the NHS was dealing with a significant surge in COVID-19 cases and hospitalisations in both England and Wales.

Within the clinical audit, there are 12 measures which were derived from national guidelines and recommendations. These are referred to as the ‘Performance Indicators’ in the full results presented in Appendices A and B. You can download the report and both appendices below.

Results by Health Board/Trust and regional network

Our detailed results spreadsheets (download these MS Excel files below) cover the Round 3 clinical audit data for cohort 2 and the 2020 organisational audit results.

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. 

You can filter each worksheet to view and compare data for one or more NHS Health Boards/Trusts, or 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 columns.