Moving from children’s epilepsy services into adult care is not just an administrative handover. It can coincide with major changes in independence, education, work, relationships, medication responsibility, driving, mental health and family roles.
Why transition matters
A systematic review of transition in epilepsy found that poorly organised transition can affect both medical and psychosocial outcomes. The evidence base is still limited, but planned, coordinated transition is consistently favoured over an abrupt transfer of care.
What good transition should include
- early planning rather than waiting until the final paediatric appointment
- direct involvement of the young person in decisions
- a joint review of diagnosis and treatment when appropriate
- clear information about medicines, seizure management and emergency plans
- discussion of education, employment, driving, alcohol, relationships and reproductive health
- support for mental health, learning disability or neurodevelopmental needs
- an accessible written care plan that the young person understands
NICE specifically recommends individually tailored transition, earlier planning for young people with complex needs, and joint review by paediatric and adult multidisciplinary teams.
Independence is not the same as being left alone
Transition usually involves shifting more responsibility towards the young person, but that process needs to match their development, cognition and circumstances. Some people will manage medicines, appointments and risk planning independently; others will continue to need substantial family or carer involvement.
Why families can find transition difficult too
Parents and carers may have spent years managing seizures, medication and appointments. Adult services often expect the young person to speak for themselves, which can feel like a sudden loss of information or influence for families. Research also describes anxiety about letting go and concern that adult teams may be less familiar with rare childhood-onset epilepsies.
Worldwide differences
Formal transition clinics are not available everywhere. International reviews describe wide variation in resources, staffing and specialist provision. In some settings, the main challenge is not how transition is organised but whether adult neurology or epilepsy services are accessible at all. A useful transition model therefore has to fit the healthcare system around the person.
Transition should begin before transfer
Effective transition is a planned process rather than a single handover appointment. It should begin early enough to build knowledge of the epilepsy, medicines, rescue plans, reproductive health, driving, work or education, mental health and self-management.
What commonly gets lost
Young people can lose continuity when paediatric and adult services use different teams, records or eligibility rules. Medication rationale, genetic diagnoses, rescue plans, learning needs and family roles should be transferred explicitly rather than assumed.
Autonomy develops gradually
Transition should increase the young person’s involvement at a pace that matches cognition, communication and capacity. Family support may remain important in adulthood for people with intellectual disability or complex epilepsy.
Global variation
Dedicated transition clinics are not universal. In resource-limited systems, the priority may be ensuring any continued neurological care at all. The principles of continuity and clear handover still apply even when formal transition programmes do not exist.
Sources
NICE NG217 — Service provision and transition
Transition to adult care in epilepsy: systematic review
Living with epilepsy during transition: systematic review and qualitative meta-synthesis
International review of transition models in epilepsy
Evidence checked: September 2026.