2 Information and support

2 Information and support

For information and support before diagnosis, see the section on information and support after a first seizure.

2.1.1 When providing information to people with epilepsy and their families or carers, follow:

2.1.2 Provide tailored information and support to people with epilepsy, and their families or carers if appropriate, according to their individual needs and circumstances.

2.1.3 Include children and young people in discussions about their information and support needs, and provide information appropriate to their developmental age.

2.1.4 Take into account the information and support needs of people with epilepsy who are older, have a learning disability or have other complex needs, for example:

2.1.5 Give people with epilepsy, and their families and carers if appropriate, details of local and national epilepsy information and support groups.

2.1.6 Support people to self-manage their epilepsy and make informed choices by discussing the following issues with them during their first appointment:

  • triggers that may provoke seizures

  • medications for epilepsy, the importance of adherence to medication and possible side effects

  • reducing epilepsy-related risks, including sudden unexpected death in epilepsy (SUDEP)

  • impact on daily activities, including driving

  • their epilepsy syndrome or seizure types.

    The discussion may be reiterated at an information and care-planning session with an epilepsy specialist nurse (see also the section on epilepsy specialist nurses).

2.1.7 Provide the person with epilepsy, and their family or carers if appropriate, with a copy of their care plan, which includes details of their care and support as discussed and agreed with the person, and their family or carers if appropriate.

2.1.8 Repeat information for people with epilepsy, and their families or carers if appropriate, at subsequent appointments according to their individual needs and circumstances.

2.1.9 Provide information and support at routine appointments with the person's GP, specialist or epilepsy specialist nurse, as needed, and also at dedicated information and care-planning appointments with an epilepsy specialist nurse (see the section on epilepsy specialist nurses).

2.1.10 Consider providing a framework for discussions before appointments that includes issues commonly raised by people with epilepsy or that may be of concern to the person.

2.1.11 Offer people with epilepsy, and their families and carers if appropriate, opportunities at each appointment to discuss issues that concern them including, but not limited to, the topics in box 1.

Box 1 Topics to discuss with people with epilepsy and their families and carers

Activities of daily living

  • Safety issues, including activities that should be adapted or avoided, for example, showering rather than having baths, cooking safely, caring for babies and young children safely, and avoiding working at heights.

  • Safety issues for children and young people, including supervised swimming and water sports, not climbing above their height without supervision.

  • Potential impact on lifestyle and social life and any experiences of social exclusion.

  • Driving, including Driver and Vehicle Licensing Agency (DVLA) regulations.

  • Employment and education, including concerns and rights related to employment and education.

Carers

Cognition

  • Concerns about the impact of epilepsy and antiseizure medication on cognitive function, including memory, attention, concentration, educational attainment and performance in the workplace.

Medication

Mental health

Reproductive health and pregnancy

  • Support and information on contraception and pregnancy for women and their partners to enable them to make informed decisions.

  • Support for changes in medications and the potential interactions with contraception.

  • Teratogenicity of antiseizure medications.

  • Pre-conception planning, including the use of folic acid and reducing epilepsy-related risk during pregnancy.

  • Planning the birth.

  • Postnatal care and breastfeeding.

See also the section on antiseizure medications for women and girls and follow the Medicines and Healthcare products Regulatory Agency (MHRA) safety advice on antiepileptic drugs in pregnancy.

SUDEP

  • Concerns of people with epilepsy and their families and carers about sudden unexpected death in epilepsy (SUDEP).

  • Information about SUDEP, including risk factors for SUDEP and how to reduce the risks.

  • Availability of SUDEP counselling.

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

Full details of the evidence and the committee's discussion are in:

  • National Institute for Health and Care Excellence (NICE)