Epilepsy is one of the most common long-term conditions among children and young people (CYP), affecting about 112,000 within the UK. The Epilepsy12 audit collects and reports data of the care received by CYP in England and Wales during the first 12 months following a new diagnosis of epilepsy. It has the continued aim of helping epilepsy services, and those who commission health services, to measure and improve the quality of care for CYP with seizures and epilepsies. Epilepsy12 is commissioned by the Healthcare Quality Improvement Partnership (HQIP) and the current Round 4 contract is being delivered by RCPCH from 1 April 2022 to 31 March 2025.
Epilpesy12 has reported improvements in paediatric epilepsy care across audit years; however, there are some areas showing limited or no improvement over time, and there may be inequity in care between regions or populations. A national programme of work aimed at improving care for children and young people with epilepsy was launched by NHS England at the end of 2021.
Using Epilpesy12 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 2023 annual report from Epilepsy12 reported:
- Only 16% of NHS Trusts facilitate mental health provision within epilepsy clinics, and 36% did not have agreed referral pathways for children with mental health conditions.
- Only 24% of children and young people diagnosed with epilepsy who met surgical referral criteria had referral for surgical evaluation during their first year of care.
- A 2021 Young Epilepsy survey showed that 40% of young people said they had no joint appointments with children's and adults' epilepsy services as part of the transition process.
- There exists marked variation between Trusts and regions in access to Epilepsy Specialist Nurses who have been shown to improve clinical outcomes for CYP with epilepsy.
Epilepsy is also included as one of the five clinical areas in the NHS England Core20PLUS5 framework: CYP living in the most deprived areas of England are more likely to have epilepsy than those in less deprived areas, and epilepsy is one of the five most common causes of treatable death in CYP with a learning disability aged four to 18.
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. 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.
NHS England used Epilepsy12 data to inform the development of these standards and recommendations, where a data-led approach was taken to build on the areas of development highlighted in the audit. Key stakeholder organisations, as well as young people and their families, have been involved in the development of this resource.
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.
The implementation of these recommendations will facilitate quality improvement and are expected to reduce overall care-costs through reducing unplanned hospital admissions, ensuring timely referrals into tertiary care, and supporting earlier identification of co-morbidities. Optimal management of epilepsy can also minimise other impacts on social, educational and employment activity. The overall impact will be improved outcomes and quality of life for CYP with epilepsy.
When implemented, we are confident that [the Core20Plus5 Framework] will make a real difference to the health and wellbeing of children and help to achieve our vision for the NHS...
RCPCH has worked alongside NHS England over the years to improve child health, and have played a key role in the development of the NHS Long-Term Plan. The College advocated for the health of children and young people and presented the case for specifically identifying epilepsy as a focus area within the plan. This is described in the information bundle presented to NHS England and published in 2018 to make the case for investing in children and young people's epilepsy services, and the college’s resource on our vision for the NHS Long Term Plan - an NHS that plays a leading role in improving children and young people's health.
We were subsequently pleased to see infants, children and young people place from and centre of the NHS Long Term Plans in January 2019, and that epilepsy was included in the Core20Plus5 Framework. When implemented, we are confident that this will make a real difference to the health and wellbeing of children and help to achieve our vision for the NHS.
In 2022, Epilepsy12 aligned its 2022-25 Healthcare Improvement Strategy and its key performance metrics to the 4 priority areas identified by NHS England. The audit continues to create and share bespoke data pack with the NHS England oversight group and regional leads to help benchmark and monitor improvement within these areas. Additionally, NHS England are funding the fourth wave of the Epilepsy Quality Improvement Programme(EQIP), where the improvement projects will also have a focus on the four priority areas.
RCPCH is pleased with the collaboration between the college and NHS England on this Bundle of Care, where there has been valuable input from Epilepsy12 into the NHS England Epilepsy Oversight Group from its inception and a strong relationship established between the programmes. OPEN UK, a UK network of paediatric epilepsy networks hosted by RCPCH, has also played a vital role in the development of this resource.