You can read our full report here or download it and the appendices below:
About
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:
- Auditing of the clinical care provided to children and young people newly diagnosed with epilepsy in 'cohort 6', and the organisation and structure of epilepsy services as of November 2024.
- Quality improvement activities and projects related to the audit, including the Epilepsy Quality Improvement Programme, an RCPCH QI collaborative for paediatric epilepsy teams
- 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
- About the audit
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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. Having delivered Rounds 1 to 3 of Epilepsy12 between 2009 and 2021, the Royal College of Paediatrics and Child Health (RCPCH) was awarded the contract to deliver Round 4 from 1 April 2022 to 31 March 2025.
The Healthcare Quality Improvement Partnership (HQIP) has since granted a two-year extension, enabling RCPCH to continue delivering Epilepsy12 until 31 March 2027 as part of the National Clinical Audit and Patient Outcomes Programme (NCAPOP).
- About the artwork on our report's front cover
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Our report features a piece by Janet Lee, an international artist from Malaysia who lived with epilepsy (1989–2023). This was created with acrylic paints on a canvas surface, with the message: “You’ll never know how far you can fly until you spread your wings. It is another glorious day. Follow your heart and set yourself free".
Janet Lee was a colourist from Kuala Lumpur, Malaysia, known for her bold and vibrant use of colour. Her artwork often featured themes like nature, abstract lines, and floral motifs, created with mediums such as acrylics, pastels, and watercolours. Her fluid, carefree strokes reflected spontaneity and emotion.
Despite living with intractable epilepsy and intellectual disability, Janet pursued her passion for art and gained international recognition. Her works were exhibited in countries like the United States, Korea, China, and Malaysia and are part of private collections worldwide.
Janet’s journey inspired many, particularly within the epilepsy and neurodivergent communities, showing that challenges do not limit creativity. Her legacy continues through her art and #artbeyondthecanvas creations that are displayed at Janet Lee Gallery in Cheras, Malaysia and through a mentorship program started by her mother (Joyce Moi) to support families of neurodivergent artists.
Ten key performance indicators
In cohort 6, Epilepsy12 identified ten key performance indicators (KPIs), 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. (The KPIs are detailed in the Round 4 methodology overview.)
The below chart shows an overview of the 10 KPIs for England and Wales combined in cohort 6.
Four key themes
There have been significant increases in total cohort size and data completeness this year. This improves the ability for Epilepsy12 to have confidence when drawing conclusions from the audit data, particularly when exploring longitudinally trends and variation between subgroups. Achieving complete participation remains an issue; 30 Health Boards and Trusts did not enter clinical audit data this year.
Considerably more children and young people with epilepsy have a School Individual Health Care Plan in place within the first year of care, compared to previous years where it had been static. Progress has also been made in the agreement and contents within comprehensive care planning and key elements within transition services. There remain limitations in assessing and reporting the quality of transition from paediatric to adult services.
Epilepsy Specialist Nurse (ESN) provision is steadily improving over time since we began Epilepsy12 in 2009. More and more children and young are having input from an ESN within the first year of care. Since previous reports, a greater proportion of children and young people meeting the criteria for Children Epilepsy Surgical Services (CESS) are being referred to CESS within the first year of care. There are emerging issues with timeliness within the initial referral and early management phases of paediatric seizure and epilepsy pathways.
Although there are some encouraging improvements in mental health enquiry and resulting provision, there remain many children and young people whose mental health is not being assessed, supported and resourced as needed.
Quality improvement
The first paediatric epilepsy QI collaborative pilot in England and Wales was launched in 2019: the RCPCH Epilepsy Quality Improvement Programme (EQIP). EQIP supported epilepsy service teams to identify sustainable improvements within their services for children and young people with epilepsy.
Epilepsy12 also invited paediatric epilepsy services in England and Wales to provide case studies of their local quality improvement (QI) activities undertaken outside of EQIP, to improve the care provided to children and young people with epilepsies.
- Visit the EQIP website for case studies, video presentations and examples of QI project journeys
- 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 6 and the 2024 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.
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.