About
The RCPCH are commissioned to deliver Round 4 of Epilepsy12 (National clinical audit of seizures and epilepsies for children and young people), the UK collaborative clinical audit of health care for children and young people with suspected epileptic seizures. Epilepsy12 is commissioned by the Healthcare Quality Improvement Partnership (HQIP) as part of the National Clinical Audit and Patient Outcomes Programme (NCAPOP) and the current Round 4 contract is being delivered by the Royal College of Paediatrics and Child Health (RCPCH) from 1 April 2022 to 31 March 2025.
NCAPOP is funded by NHS England, the Welsh Government and, with some individual audits, also funded by the Health Department of the Scottish Government, DHSSPS Northern Ireland and the Channel Islands.
Epilepsy12 currently covers paediatric services within Health Boards and Trusts in England and Wales and it is hoped that paediatric services within Northern Ireland and Scotland will also join, subject to contractual and governance arrangements being put in place.
The audit is overseen by a project board and a dedicated project team within the RCPCH. This video briefly introduces the aims of the audit.
In 2018, Epilepsy12 was awarded first place in the inaugural Richard Driscoll Memorial Award for 'outstanding patient involvement in clinical audit'.
For enquiries please contact the project team:
- Email: epilepsy12@rcpch.ac.uk
- Tel: 020 7092 6170 / 6161 / 6056 / 6157
Background
The British Paediatric Neurology Association (BPNA) proposed a national audit of childhood epilepsies in 2007 in response to the continuing concern regarding the quality of care for children and young people with epilepsies.
In 2009, the Healthcare Quality Improvement Partnership (HQIP) commissioned RCPCH to establish 'Epilepsy12' - the UK collaborative clinical audit of healthcare for children and young people with suspected epileptic seizures. The audit was funded by NHS England, the Welsh Government and the Scottish Government.
Rounds 1 and 2 of Epilepsy12 were delivered between 2009 and 2014, auditing the quality and delivery of care for children and young people (CYP) with suspected and diagnosed epilepsies within the UK. The national reports for rounds 1 and 2 were published respectively in 2012 and 2014. Round 3 was delivered between 2018 and 2022, and reported on three cohorts of CYP with suspected and diagnosed epilepsies within the UK. Learn more about Round 3.
Methodology
The full methodology for rounds 1 to 4 of Epilepsy12 were developed in conjunction with a broad range of key stakeholder professional and patient organisations. The methodology was aligned to NICE and SIGN guidelines - 'The epilepsies: the diagnosis and management of the epilepsies in children and young people in primary and secondary care' (NICE, 2012) and 'Diagnosis and management of epilepsies in children and young people' (SIGN, 2005).
In round 4, Epilepsy12 has an expanded scope and aims to:
- Measure quality of care and outcomes for children
and young people with seizures and epilepsies in
England and Wales - Focusing on the first year of care of children and
young people (0-24 years) with a newly diagnosed epilepsy - Provide an increased focus on mental health support, transition services, care planning and
input from tertiary services and epilepsy specialists - Produce regular reports, analyses and patient information from the audit
- Support quality improvement at local, regional and national levels
- Ensure children and young people have a say in the Epilepsy12 audit, as well as about their care.
The Epilepsy12 project team within the RCPCH has worked closely with key stakeholder organisations to ensure that all of the above elements have been developed in a manner which best serves the whole paediatric epilepsy community.
See full details of the audit methodology
Our Quality Improvement Goals
Epilepsy12 engaged with relevant stakeholders to identify priority areas of care and agree five Health Improvement Goals to align with these.
- Increase the proportion of children receiving input from an epilepsy specialist nurse by 5% per year; from 76% in Cohort 3 to 91% in Cohort 6.
- For children with complex epilepsy, increase the proportion receiving input from a tertiary specialist by 5% per year; from 69% in Cohort 3 to 84% in Cohort 6.
- Increase the proportion of children receiving all core elements for care planning by 5% per year; from 75% in Cohort 3 to 905 in Cohort 6.
- Increase the proportion of Health Boards and Trusts using structured transition resources by 5% per year; from 62% in Cohort 3 to 77% in Cohort 6.
- Increase the number of Health Boards and trusts screening children with epilepsy for mental health disorders by 5%; from 19% in Cohort 3 to 34% in Cohort 6.
Epilepsy12 collaborated with QI experts when designing the improvement goals and strategies. We will continue to receive their input when delivering these strategies and seek guidance on how we can embed Epilepsy12's evaluation and learning to improve the plan and explore avenues of collaboration with NHS, HQIP, and other improvement programmes.
You can find out more about our quality improvement plans for 2022-25 by downloading our: Quality Improvement Strategy. This strategy is updated annually.
Organisation of Paediatric Epilepsy Networks in the United Kingdom (OPEN UK)
OPEN UK was established in 2015 with support from the National Clinical Director for Children, Young People and Transition to Adulthood. OPEN UK is comprised of representation from all 17 regional epilepsy networks across the UK. It aims to unite children's regional and national epilepsy networks to improve integrated care for children and young people with epilepsies by:
- Encouraging collaboration and sharing of regional and national ideas, pilots, and resources
- Being a national resource and professional UK paediatric body to which other strategic organisations may come for information, support, data and clinical input
- Facilitating links to strategic regional and national funding bodies.
Epilepsy12 will benefit from OPEN UK as a framework for engaging providers, disseminating results and promoting quality improvement within wider network activities. Epilepsy12 will in turn provide support to OPEN UK for the administration of its regional audit meetings and quality improvement initiatives.
NHS England's Bundle of Care for CYP with Epilepsy
The CYP Transformation Programme at NHS England has developed a national bundle of care for CYP with epilepsy which aims to support systems with epilepsy quality improvement. This was created through the established NHSE epilepsy oversight group and expert working groups. It consists of key standards and recommendations around the care and delivery of epilepsy services to support systems with the delivery of consistent quality epilepsy care. Using Epilepsy12 data and the key messages drawn from the audit's annual outputs, four priority areas were identified:
- Addressing variation in care between epilepsy services
- Supporting the mental health and wellbeing of CYP with epilepsy
- Improving referrals into tertiary care and the epilepsy surgery service
- Improving the transition from paediatric to adult epilepsy services.
The resource is aimed at regional epilepsy leads, ICBs and commissioners, healthcare providers, health care professionals with a role or interest in epilepsy and the wider children's sector, including voluntary sector organisations, professional bodies and charities.
Epilepsy12 key stakeholders
Key stakeholder organisations in England, Scotland and Wales involved in paediatric epilepsy care and support are represented within the project board and methodology and dataset group. They are:
- Association of Neurophysiological Scientists
- British Academy of Childhood Disability
- British Paediatric Neurology Association
- British Society for Clinical Neurophysiology
- Epilepsy Action
- Epilepsy Scotland
- Epilepsy Specialist Nurse Association
- Healthcare Quality Improvement Partnership
- National Association of independent Schools & Non-Maintained Special Schools
- OPEN UK
- Royal College of Paediatrics and Child Health
- Royal College of Nursing
- Young Epilepsy
