Young Epilepsy conducted a national survey in 2021 to understand how young people aged 11–25 experience epilepsy care, particularly during the transition from paediatric to adult services. The findings reveal critical gaps and opportunities in epilepsy treatment, communication, and mental health support.
Transition can be a difficult, stressful, and confusing experience for young people with epilepsy. Our findings show key areas that need improvement.
Key Findings
Transition to Adult Epilepsy Care
- 77.5% transitioned at age 16–18 (most commonly at 16 or 18).
- 39.5% had no joint appointments between children’s and adult services.
- 32.3% reported a negative impact on mental health due to the transition.
- 45.3% experienced changes in treatment or diagnosis after moving to adult care.
Access to Epilepsy Professionals
- Contact with epilepsy specialist nurses dropped from 79.4% in paediatric care to 73.1% in adult care.
- Young people felt more listened to by nurses (72.3% in paediatrics vs. 57.8% in adult care).
- Nurses were more likely to explain things clearly (66.4%) than doctors (59.9%).
Communication and Involvement
- Only 39.4% felt their paediatric doctor/nurse spoke to them more directly as they aged.
- Just 29.0% had increased opportunities to speak privately with their doctor/nurse.
- 51% said they received more support to understand and self-manage their epilepsy as they got older.
Mental Health and Emotional Support
- Many felt abandoned or unsupported post-transition.
- Young people called for:
- Quicker access to mental health services
- Regular wellbeing check-ups
- Support to manage stigma and isolation
Impact on Life and Future Planning
- 29.7% said their paediatric doctor/nurse didn’t discuss epilepsy’s impact on life issues.
- Adult care was more likely to address topics like:
- Driving (67.9%)
- Alcohol (50.7%)
- Mental health (48.5%)
- Work and relationships
Young People's Voices
- Many expressed a need for:
- More frequent and longer appointments
- Consistent professionals
- Gender-sensitive care
- Clearer communication and visual aids
- Support with independence and life transitions
