Epilepsies in children, young people and adults

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

• the recommendations on communication and information in NICE's guidelines on patient experience in adult NHS services or babies, children and young people's experience of healthcare and

• NICE's guideline on shared decision making.

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

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

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:

• give longer appointments to allow more time for discussion

• provide information in different formats, such as easy read, large print or audio versions

• involve family members or carers or an advocate if the person wishes

• share information with those involved in the care of older people or people with learning disabilities if appropriate.
  
  See also the section on general principles of care in NICE's guideline on challenging behaviour and learning disabilities and the section on overarching principles in NICE's guideline on care and support of people growing older with learning disabilities.

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

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).

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.

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

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).

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.

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.