Care and support
Epilepsy care is more than prescribing medication. Specialist nurses can connect diagnosis, treatment, self-management, emotional wellbeing, safety, education and access to wider services.
Central point: NICE says all children, young people and adults with epilepsy should have access to an epilepsy specialist nurse.
What an epilepsy specialist nurse does
NICE describes the epilepsy specialist nurse as having a central role in information, education and support. The nurse also supports epilepsy specialists and other professionals in primary care, secondary care, education, respite and social care, and acts as a point of contact linking people to community and multi-agency services.
Information and care planning
NICE recommends offering an information and care-planning session with an epilepsy specialist nurse. This should include emotional wellbeing and self-management strategies that promote inclusion and participation, not just seizure counts.
A good care-planning discussion can cover seizure recognition, rescue medication where relevant, medication adherence and adverse effects, sleep, triggers, safety, driving, work or education, pregnancy and contraception where relevant, mental health, family or carer needs, and what to do after a significant change in seizures.
How often should people with ongoing seizures be seen?
For people who continue to have seizures, NICE recommends epilepsy specialist nurse sessions at least twice a year and after A&E department visits. Services may also consider nurse-led group sessions for education and information in young people and adults.
Why specialist nursing can matter
NICE’s evidence review found benefits in areas such as satisfaction with care and emotional wellbeing, and economic evidence suggested that specialist-nurse-led intervention can reduce some health-service use. The NICE committee also noted that nurses may identify problems that have previously gone unnoticed, including long-standing antiseizure medication adverse effects.
When tertiary specialist care is needed
Specialist nursing is one part of a wider epilepsy service. Tertiary epilepsy centres are particularly important when diagnosis is uncertain, seizures remain uncontrolled, epilepsy surgery or advanced neurostimulation is being considered, specialised imaging or video-EEG is needed, or complex comorbidity requires multidisciplinary input.
Transition from children’s to adult services
NICE says transition should be individually tailored and planned with the young person. Epilepsy specialist nurses can help bridge changes in clinicians, medication responsibility, education, independence, driving discussions, reproductive health and self-management.
What if someone has no access to a specialist nurse?
Service availability varies. In the UK, NICE’s recommendation provides a clear benchmark: people with epilepsy should have access to an epilepsy specialist nurse. If this has not been offered, it is reasonable to ask the epilepsy service, neurology clinic or GP how specialist nursing support is accessed locally.
Related pages
Epilepsy Care Plans · Treatment Options · Drug-Resistant Epilepsy · Quality of Life and Comorbidities
What specialist epilepsy nursing adds
Epilepsy specialist nurses can provide education, medication counselling, rescue-plan training, pregnancy and contraception advice, psychosocial support, liaison with schools or workplaces and rapid access between consultant appointments.
Continuity matters
For people with frequent seizures or complex comorbidity, a specialist nurse can provide a consistent point of contact who understands the person’s seizure pattern and care plan. This can reduce fragmentation across emergency, primary and specialist services.
Not every country uses the same role
The title, training and prescribing authority of epilepsy nurses vary internationally. Some systems use advanced-practice nurses; others rely on general neurology nurses or community health workers. The underlying need is access to trained epilepsy expertise between physician reviews.
Specialist care is broader than one profession
Comprehensive epilepsy services may also include neurologists, neurophysiologists, neuroradiologists, neurosurgeons, neuropsychologists, psychiatrists, pharmacists, dietitians and social-care professionals depending on the problem.
Sources
NICE NG217 — Service provision and transition
NICE NG217 Evidence Review O — Effectiveness of a nurse specialist in epilepsy
This page provides general educational information and is not individual medical advice. Service organisation and availability vary by region.
Evidence checked: September 2026.