Epilepsy12 - national organisational audit and clinical audit - 2024

Epilepsy is the commonest significant neurological disorder affecting children and young people. Published in July 2024, 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.

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

Background to the Epilepsy12 audit

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. In 2022, a further contract was awarded to RCPCH to deliver Round 4 of the audit up to 31 March 2025.

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).

Read more about our governance and delivery

Front cover art

A mixed-media illustration of white butterflies against a green and blue background

Our report features artwork by Jeremy Ryan Smith, a mixed media artist with epilepsy.


Jeremy writes:

"Epilepsy and mental health go together. I've been using mixed media drawings to process the complex emotions I've been dealing with for many years.

I use colored pencils, markers, and acrylic paint to create a new type of art therapy called "Neurographic Art." The difference between my Neurographic Art is I always have a recognizable subject. All timelines intersect; I soften the harsh crossing by smoothing them out, so they look like neurons in your brain. 

Thank you for selecting my artwork, and I hope to inspire other artists with my work in the future."

Executive summary

Epilepsy12 is the national clinical audit of seizures and epilepsies in children and young people for England and Wales. There are three main elements to Epilepsy12 which are included in the annual report:

  1. Auditing of the clinical care provided to children and young people newly diagnosed with epilepsy in 'cohort 5', and the organisation and structure of epilepsy services as of November 2023.
  2. Quality improvement activities and projects related to the audit, including the Epilepsy Quality Improvement Programme, an RCPCH QI collaborative for paediatric epilepsy teams
  3. The Epilepsy12 Youth Advocates programme with RCPCH &Us, a group of epilepsy experienced or interested children, young people and families volunteering to improve epilepsy care

In cohort 5, Epilepsy12 has identified ten Key Performance Indicator (KPI) measures which are derived from national guidelines and recommendations. KPI results indicate the proportion of children and young with epilepsy receiving timely input from healthcare professionals, appropriate assessment, support for their mental health and comprehensive care planning information. These are detailed in the Round 4 methodology overview.

An overview of the 10 KPIs for England and Wales combined in cohort 5 are shown below.  

Graph displaying national results on Epilepsy12 Key Performance Indicator Measures for 2024.

Key messages

The 2024 annual report describes four key messages, with national recommendations made under each. 

Epilepsy12 2024 report - Key Message 1: Contributing and participating

Epilepsy12, as the only national programme investigating paediatric epilepsy care, plays an important role in measuring and improving quality of care and outcomes. We are aiming for all Health Boards and Trusts providing care to children and young people with epilepsy in England and Wales to participate within Epilepsy12; however, participation has not improved considerably since cohort 1. 

Epilepsy12 2024 report - Key Message 2: Widening and strengthening epilepsy team provision

Epilepsy Specialist Nurses (ESNs) are essential members of epilepsy teams for children and young people, and have extending key responsibilities including care planning, and within this, discussions around Sudden Unexpected Death in Epilepsy (SUDEP), ‘service contactability’, planning with schools, transition and mental health support. 

Epilepsy12 2024 report - Key Message 3: Ensuring timeliness of input

Most children and young people are being seen by a Paediatrician with expertise in epilepsy. However, the majority are waiting more than the recommended 2 weeks, and some are waiting more than 1 year.

Considerable numbers of children and young people indicated as requiring input from a paediatric neurologist or Children’s Epilepsy Surgical Service (CESS) were not seen by those key professionals within 1 year of diagnosis. While 74% of children and young people with epilepsy achieved an MRI brain scan by 1 year, only 53% achieved this within the recommended 6 weeks.

Epilepsy12 2024 report - Key Message 4: Tackling variations in care

Epilepsy12 is increasingly examining quality of care data against different characteristics and there is emerging evidence of variation. Documentation of mental health assessment is lower in those children in more deprived groups where mental health issues are more prevalent1 . There are also differences in achieving ECG and MRI investigations for children from more deprived groups.

Quality Improvement 

In June 2019, the first paediatric epilepsy QI collaborative pilot in England and Wales was launched. The RCPCH Epilepsy Quality Improvement Programme (EQIP) supports epilepsy service teams to identify sustainable improvements within their services for children and young people with epilepsy. Visit the EQIP website for case studies, video presentations and examples of QI project journeys

Epilepsy12 also invited paediatric epilepsy services in England and Wales to provide case studies of their local quality improvement (QI) activities undertaken in the last year, outside of EQIP, to improve the care provided to children and young people with epilepsies. Read selected case studies from 2023-24

Results by Health Board/Trust, NHS England region, and OPEN UK network

Our detailed results spreadsheets cover the Round 4 clinical audit data for cohort 5 and the 2023 organisational audit results. Results are displayed at national (England and Wales combined), country, NHS England region and ICB, OPEN UK Network and Health Board/Trust level. Note, small numbers have been masked to minimise data disclosure risk. Download the MS Excel spreadsheets below

Specific Health Board / Trust level datasets can be accessed by the Epilepsy12 Designated leads on SharePoint.

Acknowledgements

The Epilepsy12 project team would like to thank the administrators, clinical audit department staff, data analysts, doctors, nurses and others within participating Health Boards and Trusts. We would also like to thank our stakeholders and colleagues within the Royal College of Paediatrics and Child Health, who provide invaluable input into the design and delivery of the audit.

Contact

The Epilepsy12 project team members are available to respond to any related queries at epilepsy12@rcpch.ac.uk or on 0207 092 6157.

  • 1F Reiss, 2013; Socioeconomic inequalities and mental health problems in children and adolescents: A systematic review