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.
Key Findings
- Transition Age: 77.5% of respondents moved to adult epilepsy care between ages 16–18.
- Lack of Joint Care: 39.5% had no joint appointments between paediatric and adult services, while only 26.7% had more than three.
- Mental Health Impact: 32.3% reported a negative impact on mental health during the transition.
- Changes in Treatment: 45.3% experienced changes in diagnosis or treatment upon entering adult care.
- Specialist Nurse Access: Access to epilepsy specialist nurses dropped from 79.4% in paediatric care to 73.1% in adult care.
- Communication Gaps:
- Only 57.8% felt listened to by adult epilepsy nurses, compared to 72.3% in paediatric care.
- Just 39.4% said their doctor/nurse spent more time speaking directly to them as they aged.
- Only 29% had more opportunities to speak alone with their clinician.
- Half (51%) felt supported in learning to self-manage their epilepsy.
Implications for Epilepsy Research and Care
These findings underscore the need for:
- Improved transitional care models in epilepsy services.
- Greater emphasis on mental health support during care transitions.
- Enhanced communication training for adult epilepsy professionals.
- Consistent access to epilepsy specialist nurses across age groups.
