At Young Epilepsy, we work so that children and young people with epilepsy are heard, supported and able to thrive. Epilepsy can be frightening, isolating and life‑limiting, but with the right understanding and support, young people can live full, confident lives.
We put young people at the centre of everything we do and work alongside families, schools, healthcare professionals and decision‑makers to create lasting change.
Support, Inclusion and Youth Voice
This year, we significantly expanded our direct support for young people:
- 276 referrals were made to our Youth Support Service, an 87% increase on the previous year.
- 185 young people received one‑to‑one support, almost double last year’s figure.
- 21% of those receiving one‑to‑one support lived in the most deprived areas of the UK.
- Attendance at our virtual youth groups rose by 70%, with 224 children and young people taking part.
- We launched Epilepsy & Me, monthly virtual support groups split by age, attended by 50 young people and 18 parents and carers.
- Our Youth Voice Network grew to nearly 250 members, amplifying young people’s voices nationally.
Influencing Education and Policy
Young people led powerful change through our campaigning and influencing work:
- 16,163 people signed our #UnderstandMyEpilepsy petition calling for safer, more inclusive schools.
- 583 supporters contacted their MPs, reaching 368 UK constituencies (55% of all constituencies).
- New data from the Epilepsy12 audit shows 67% of children now have an Individual Healthcare Plan in their first year of care, up from 56% in our 2023 survey.
- 305 schools and 117 higher education professionals completed our free epilepsy awareness eLearning, a 20% increase year on year.
Health, Research and Diagnosis
We continued to invest in evidence‑based care and research:
- Our research programme involved 32 researchers, 32 PhD students and 46 active projects, focusing on diagnosis, mental health, learning and long‑term outcomes.
- We delivered 645 diagnostic EEG appointments, a 50% increase on the previous year.
- Waiting times for EEGs are now 2–4 weeks, well within NHS targets.
- Mental health pilots embedded into NHS epilepsy care showed early improvements in wellbeing for children and families.
Specialist Education: St Piers
Our specialist school and college continued to grow and improve:
- Student numbers increased to almost 200, up from 160 two years ago.
- Our new infant provision opened and filled all 12 places in its first year.
- Children’s Residential Services were rated Outstanding by Ofsted, with strong outcomes across education, care and therapies.
Looking Ahead
In 2025, we launched our five‑year strategy to 2030, setting out a clear ambition:
- Every child and young person with epilepsy can access support quickly.
- Mental health and wellbeing are embedded in epilepsy care.
- Epilepsy awareness and inclusion become the norm across education.
Together with young people, families and partners, we are building a future where epilepsy does not limit potential.
