11 Service provision and transition

11.1 Epilepsy specialist nurses

11.1.1 Ensure that all children, young people and adults with epilepsy have access to an epilepsy specialist nurse who:

  • has a central role in providing information, education and support (see box 1 for information that should be covered)

  • supports epilepsy specialists and healthcare professionals in primary and secondary care, and in educational, respite and social care settings

  • is a point of contact for, and facilitates access to, other community and multi-agency services.

11.1.2 Offer people with epilepsy an information and care-planning session with an epilepsy specialist nurse that includes emotional wellbeing and self-management strategies promoting inclusion and participation.

11.1.3 For people with epilepsy who continue to have seizures, offer epilepsy specialist nurse sessions:

  • at least twice a year and

  • after A&E department visits.

11.1.4 Consider epilepsy specialist nurse-led group sessions for education and information giving in young people and adults with epilepsy.

For a short explanation of why the committee made these recommendations and how they might affect practice, see the rationale and impact section on epilepsy specialist nurses.

Full details of the evidence and the committee's discussion are in evidence review O: effectiveness of a nurse specialist in the management of epilepsy.

11.2 Transition from children's to adults' epilepsy services

11.2.1 Involve young people with epilepsy in planning for their transition from children's to adult epilepsy services in line with the NICE guideline on transition from children's to adults' services for young people using health or social care services.

11.2.2 Ensure transition from children's to adults' epilepsy services is individually tailored to the young person with epilepsy.

11.2.3 Begin planning transition early for young people who have complex or additional health and social care needs, for example young people whose seizures are not yet controlled or those with learning disabilities.

11.2.4 During transition of young people with epilepsy to adult services, the paediatric and adult multidisciplinary teams should jointly review the person's diagnosis and management plan, taking a person-centred approach that involves the young person, and their family or carers as appropriate, in planning and decisions about their care.

11.2.5 Ensure that information about the young person's management plan and support for transition to adult services is discussed with the young person with epilepsy and shared in an accessible format that meets their needs and uses language they understand. Repeat this information at different time points to establish that the young person understands their care plan and the support that will be provided.

11.2.6 When discussing transition to adult epilepsy services with the young person, cover any issues of concern to the person, including, but not limited to, the following:

  • activities of daily living, including driving and sports

  • adherence to antiseizure medication

  • comorbidities, such as low mood or impaired memory

  • continuing in education or work

  • emotional health and psychological wellbeing

  • living independently

  • possible effects of epilepsy and antiseizure medication on neurodevelopment, cognition and behaviour

  • risks associated with alcohol and illicit drugs

  • safety and risk (including sudden unexpected death in epilepsy [SUDEP])

  • reproductive health, including contraception, pregnancy and teratogenicity

  • sleep disturbance

  • social aspects of epilepsy, including considering if or when to disclose epilepsy status and managing the impact of possible assumed limitations

  • stigmatisation of epilepsy.

For a short explanation of why the committee made these recommendations and how they might affect practice, see the rationale and impact section on transition from children's to adults' epilepsy services.

Full details of the evidence and the committee's discussion are in evidence review 20: transition from paediatric to adult epilepsy services.

  • National Institute for Health and Care Excellence (NICE)