Quality statement 4: Epilepsy care plan

Quality statement

Adults with epilepsy have an agreed and comprehensive written epilepsy care plan.

Rationale

There are a number of potential lifestyle, health and wellbeing implications directly related to epilepsy. A care plan is an important tool in ensuring that all aspects of a person's life that could be affected by their epilepsy syndrome and the treatment they are receiving are considered and addressed.

Quality measure

Structure: Evidence of local arrangements for adults with epilepsy to have an agreed and comprehensive, written epilepsy care plan.

Process:

a) Proportion of adults with epilepsy who have an agreed and comprehensive written epilepsy care plan.

Numerator – the number of people in the denominator who have an agreed and comprehensive written epilepsy care plan.

Denominator – the number of adults with epilepsy.

b) Proportion of adults with an epilepsy care plan who feel they have been involved in developing and agreeing their plan.

Numerator – the number of people in the denominator who feel they have been involved in developing and agreeing their plan.

Denominator – the number of adults with an epilepsy care plan.

Outcome: Patient satisfaction with involvement in the epilepsy care planning process.

What the quality statement means for each audience

Service providers ensure that systems are in place for adults with epilepsy to have an agreed and comprehensive written epilepsy care plan.

Healthcare professionals ensure that adults with epilepsy have an agreed and comprehensive written epilepsy care plan.

Commissioners ensure they commission services for adults with epilepsy to have an agreed and comprehensive written epilepsy care plan.

Adults with epilepsy have a written epilepsy care plan that includes details about treatment and any preferences and lifestyle issues and is agreed between them and their healthcare team.

Source guidance

NICE clinical guideline 137 recommendations 1.3.1 and 1.8.2.

Data source

Structure: Local data collection.

Process: a) and b) Local data collection.

Outcome: Local data collection.

Definitions

The comprehensive epilepsy care plan should be a written record of the decisions made about the person's past, present and future care.

It should be discussed and agreed between the adult with epilepsy, their family and/or carers if appropriate and their primary and secondary health and social care professionals. A local template or checklist should be developed to ensure consistency in the content of each epilepsy care plan based on NICE clinical guideline 137 recommendation 1.3.1. The plan should be reviewed on at least annually.

The care plan should include any issues relating to the following topics (as listed in NICE clinical guideline 137 recommendation 1.3.1):

  • epilepsy in general

  • the person's specific epilepsy syndrome

  • diagnosis and treatment options

  • medication and side effects

  • seizure type(s), triggers and seizure control

  • management and self-care

  • risk management

  • first aid, safety and injury prevention at home and at college or work

  • psychological issues

  • social security benefits and social services

  • insurance issues

  • education and healthcare at college

  • employment and independent living for adults

  • importance of disclosing epilepsy in college or at work, if relevant (if further information or clarification is needed, voluntary organisations should be contacted)

  • road safety and driving

  • prognosis

  • sudden unexpected death in epilepsy (SUDEP)

  • status epilepticus

  • lifestyle, leisure and social issues (including recreational drugs, alcohol, sexual activity and sleep deprivation)

  • family planning and pregnancy

  • voluntary organisations, such as support groups and charitable organisations, and how to contact them.

Equality and diversity considerations

Consideration should be given to the capacity of someone with epilepsy to be involved in agreeing their epilepsy care plan. Best interest decision making, in accordance with the Mental Capacity Act, should be adhered to.