The RCPCH has been re-commissioned to deliver round 3 of Epilepsy12, the UK collaborative clinical audit of health care for children and young people with suspected epileptic seizures. Round 3 began on 1 April 2017 as part of the National Clinical Audit and Patient Outcomes Programme (NCAPOP) and will run until 31 March 2021.
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.
As per rounds 1 and 2, the audit is overseen by a project board and a dedicated project team within the RCPCH. Dr Colin Dunkley, Consultant Paediatrician, is the current clinical lead for Epilepsy12, and in this video he briefly introduces the aims.
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: firstname.lastname@example.org
- Tel: 020 7092 6170 / 6161 / 6056 / 6157
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.
As with round 1, the full methodology for round 2 of Epilepsy12 was 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 3, Epilepsy12 has an expanded scope and aims to:
- continue to measure and improve care and outcomes for UK children and young people with epilepsies
- include all children and young people with a new onset of epilepsy
- enable continuous patient ascertainment
- use a pragmatic and concise dataset
- incorporate NICE Quality Standards, Mental Health, Educational and Transition metrics
- obtain approval to include patient identifiers to allow local real-time individual and service dashboard elements within the audit reporting platform
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.
The Epilepsy12 audit manages outlier identification using the 'RCPCH detection and management of outlier status' policy. A copy of this policy can be download below for information about the outlier measures, identification and notification processes.
The two Epilepsy indicators used for outlier analysis are:
- Epilepsy Specialist Nurse (ESN) input - The proportion of children and young people registered into Epilepsy12 who were verified on the audit data system by their NHS Health Board/Trust.
- Tertiary input - The proportion of children and young people diagnosed with epilepsy receiving input from tertiary services during their first year of care.
Download this policy below.
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.
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