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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 for 'outstanding patient involvement in clinical audit'.
For enquiries please contact the project team:
- Email: epilepsy12@rcpch.ac.uk
- Tel: 020 7092 6157Ìý/ 6056Ìý
Background
The 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 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 childrenÌýand young people with seizures and epilepsies inÌýEngland and Wales
- Focusing on the first year of care of children andÌýyoung people (0-24 years) with a newly diagnosed epilepsy
- Provide an increased focus on mental health support, transition services, care planning andÌýinput 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
Reducing data burdenÌýÌý
We would like to thank colleagues within NHS Heath Boards and Trusts for participating in the Epilepsy12 audit. We are grateful for your dedication in improving the care for children and young people with epilepsy.ÌýÌý
Epilepsy12 is committed to reducing the administrative burden for clinical teams participating in the audit. Recognising that Health Boards and Trusts are dedicating significant time to enter audit data on top of their clinical commitments, we have introduced several changes to streamline the audit process. A major step forward was the move to a new bespoke platform in December 2023. This platform enhances usability and supports teams in completing the audit with efficiency and ease and introduces new reporting features to maximise the utility and impact of audit data.Ìý
The updated platform allows clinical teams to collaborate by allocating multiple users to work together on various aspects of data entry. This flexibility accommodates both prospective and retrospective data entry, giving teams more control over how they approach their workload. Built-in validation features, prompts and pre-populated fields reduce manual data entry errors and will save time for users.ÌýÌý
The platform’s live Key Performance Indicator (KPI) dashboard and patient performance summaries offer immediate insights into performance and quality of care and creates opportunities for users to rectify data entry errors or potential gaps in care before the first year has concluded. Additional support in data entry is also readily available through recorded training demos, comprehensive guidance documents and direct access to the audit project team via email and phone.Ìý
To further ease the workload, we have ensured that the audit has a minimal dataset, favouring yes/no questions and stripping back unnecessary or time-consuming elements, such as free-text questions.Ìý
In line with the move to the new platform, we have revised the Epilepsy12 Methodology to further reduce administrative demands. We are now only collecting information on children and young people with a confirmed diagnosis of epilepsy, compared to all those assessed for paroxysmal episodes. The proportion of confirmed epilepsy diagnosis is roughly 35% of the total cohort, meaning that the new case ascertainment approach will significantly reduce the data entry burden for clinical teams. The existing ‘first assessment’ stage of data collection was also removed, consolidating the process into a single form completed after one year of care for each patient. These changes streamline data entry whilst maintaining the quality and richness of the data collected.Ìý
In addition, the platform has the capability to link directly to NHS digital systems via an Application Programme Interface (API) to allow data to flow automatically between patient electronic records and the audit platform. This would significantly reduce the data burden by eliminating manual data entry, reducing duplication of effort and streamlining processes. However, more work is needed to standardise the clinical recording of epilepsy data before the API can function completely. To aid this, Epilepsy12 have funded the initial phases of developing an Epilepsy Information Standard and will continue to support the Professional Records Standards Body (PRSB) in this work.Ìý
Through these initiatives, Epilepsy12 demonstrates a clear commitment to supporting clinical teams and colleagues within NHS Health Boards and Trusts by minimising the data entry burden associated with audit participation. By continuously refining the platform and processes, we are doing everything possible to ensure that the audit is both efficient and effective, enabling clinicians to focus on delivering high-quality care for children and young people with epilepsy.Ìý
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%Ìýfrom 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, pilotsÌýand 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 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:
