Less than half of children and young people with complex epilepsy who need specialist support are receiving it within their first year of care, according to the latest Epilepsy12 report.
The annual audit, published by the Royal College of Paediatrics and Child Health (RCPCH), found that only 48% of children who should have been referred for specialist support accessed it within their first year of care. This includes access to paediatric neurologists and consideration for epilepsy surgery.
Despite efforts to improve epilepsy services, this figure has changed very little over the past six years.
Read more about the Epilepsy12 findings
The report does highlight progress in other areas of care, including improved access to epilepsy specialist nurses, mental health support and transition services for young people moving into adult healthcare.
Young Epilepsy works closely with RCPCH on the Epilepsy12 audit, helping ensure the experiences and needs of children and young people remain at the heart of efforts to improve epilepsy care and outcomes.
Young Epilepsy Chief Executive, Jane Beaven, said:
"For too long, children and young people with the most complex forms of epilepsy have faced barriers to accessing the specialist care they need. Year after year, the data shows very little improvement. When will this become a priority for change?
These are children and young people living with the highest seizure burden and some of the most significant impacts on their health, safety, education and quality of life. Yet fewer than half are accessing specialist support within their first year of care. That is simply not good enough.
While we welcome progress in areas such as mental health support, school healthcare plans and access to epilepsy specialist nurses, children and young people with the most complex needs continue to be let down."
Key findings from the 2026 Epilepsy12 report
Complex epilepsy
- Only 48% of children who should have been referred for specialist support were able to access it within their first year of care (previously 49%). This includes access to paediatric neurologists in tertiary care, as well as consideration for epilepsy surgery. This figure has changed very little in the past six years.
Epilepsy professionals
- More newly diagnosed children are accessing epilepsy specialist nurses, with 88% seeing a nurse in their first year of care (compared to 86% in last year’s report). This figure is steadily increasing each year.
- Less than 1 in 3 children (31%) are being seen by a paediatrician with epilepsy expertise within two weeks of the referral being made (previously 32%).
Mental health
- 40% of children with epilepsy are being asked about their mental health in their first year of care (previously 38%), and more children’s epilepsy clinics are providing formal mental health checks (33% compared to 25% last year).
- 79% of children with epilepsy who had an identified mental health problem received mental health support in their first year of care (previously 77%).
- More healthcare providers are including mental health support within epilepsy clinics (increase from 23% to 25%).
Care planning
- 71% of children had a written care plan covering all the key topics that are important for living with epilepsy (67%).
- Communication about Sudden Unexpected Death in Epilepsy (SUDEP) remains lowest amongst these key topics.
- There has been a further increase in the number of children that had evidence of a school individual healthcare plan (IHP) in their first year of care (increase from 67% to 75%).
Transition to adult care
- 69% of healthcare providers have both adult and paediatric epilepsy professionals involved in young people’s transition to adult healthcare (previously 67%).
- 66% provided specific outpatient clinics for young people with epilepsy (an increase from 61%).
Read more about the Epilepsy12 findings
Clinical data on children’s experiences covers December 2023 to November 2024. Organisational data is from November 2024.
