Quality statement 4: Epilepsy care plan

Quality statement

Children and young people 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 children and young people with epilepsy to have an agreed and comprehensive written epilepsy care plan.

Process:

a) Proportion of children and young people 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 children and young people with epilepsy.

b) Proportion of children and young people with an epilepsy care plan, or their parents or carers who feel they have been involved in developing and agreeing their plan.

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

Denominator – the number of children and young people with an epilepsy care plan.

Outcome:

a) Patient or parent/carer satisfaction with involvement in the epilepsy care planning process.

b) Parent/carer 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 children and young people with epilepsy to have an agreed and comprehensive written epilepsy care plan.

Healthcare professionals ensure that children and young people with epilepsy have an agreed and comprehensive written epilepsy care plan.

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

Children and young people with epilepsy or carers have a written epilepsy care plan that includes details about treatment and any preferences and lifestyle issues, and is agreed between them (and their parents or carers if appropriate) 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: a) and b) Local data collection.

Definitions

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

It should be discussed and agreed between the child or young person with epilepsy, their parents and/or carers 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 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 child's or young 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 school or work

  • psychological issues

  • social security benefits and social services

  • insurance issues

  • education and healthcare at school

  • 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.