Quality standard

Quality statement 4: Epilepsy care plan

Quality statement 4: Epilepsy care plan

Quality statement

People with epilepsy have an up-to-date and agreed comprehensive epilepsy care plan. [2013, updated 2023]

Rationale

An individualised care plan provides details of diagnosis, treatment, care and support. It is discussed and agreed with the person and, if appropriate, their family or carers. The plan allows people to make informed choices about their epilepsy and helps to coordinate care between healthcare and other professionals in different settings.

Quality measures

The following measures can be used to assess the quality of care or service provision specified in the statement. They are examples of how the statement can be measured, and can be adapted and used flexibly.

Process

a) Proportion of people with epilepsy who have an up-to-date and agreed comprehensive epilepsy care plan.

Numerator – the number in the denominator who have an up-to-date and agreed comprehensive epilepsy care plan.

Denominator – the number of people with epilepsy.

Data source: Data can be collected from information recorded locally by healthcare professionals and provider organisations, for example from local audits of patient records. Information on the proportion of children and young people diagnosed with epilepsy with evidence of a care plan that has been updated and agreed is included in the Royal College of Paediatrics and Child Health's Epilepsy12 audit of seizures and epilepsies for children and young people.

b) Proportion of young people with epilepsy who have an epilepsy care plan that covers transition to adult services.

Numerator – the number in the denominator who have an epilepsy care plan that covers transition to adult services.

Denominator – the number of young people with epilepsy.

Data source: Data can be collected from information recorded locally by healthcare professionals and provider organisations, for example from local audits of patient records. NHS England's National bundle of care for children and young people with epilepsy includes an example local audit proforma for collecting information on young people undergoing transition or who completed transition within the last year.

c) Proportion of women of childbearing potential who have an epilepsy care plan that covers pre-conception care and pregnancy.

Numerator – the number in the denominator who have an epilepsy care plan that covers pre-conception care and pregnancy.

Denominator – the number of women of childbearing potential with epilepsy.

Data source: Data can be collected from information recorded locally by healthcare professionals and provider organisations, for example from local audits of patient records. For measurement purposes, girls and women aged 13 to 54 can be used to represent women of childbearing potential. Sourced from the NHS Business Services Authority Valproate safety dashboard.

d) Proportion of people with epilepsy who have experienced status epilepticus, repeated or cluster seizures, or prolonged seizures, who have an epilepsy care plan that covers emergency management.

Numerator – the number in the denominator who have an epilepsy care plan that covers emergency management.

Denominator – the number of people with epilepsy who have experienced status epilepticus, repeated or cluster seizures, or prolonged seizures.

Data source: Data can be collected from information recorded locally by healthcare professionals and provider organisations, for example from local audits of patient records. Information on the proportion of children and young people diagnosed with epilepsy who have evidence of planning of care that encompasses a parental or carer prolonged seizure care plan is collected for the Royal College of Paediatrics and Child Health's Epilepsy12 audit of seizures and epilepsies for children and young people.

What the quality statement means for different audiences

Service providers (adult and paediatric epilepsy service providers) ensure systems are in place for people with epilepsy to take part in shared decision making and be involved in developing and reviewing individualised plans for their care. They ensure staff are trained in how to involve people in developing care plans and shared decision making.

Healthcare professionals (such as neurologists, paediatric neurologists, paediatricians and epilepsy specialist nurses) develop an epilepsy care plan with people diagnosed with epilepsy. They discuss with the person their priorities and preferences for management, and whether to share the plan with family members or carers. They identify interventions and support to address the particular needs of the person, jointly agree the plan and set a review date.

Commissioners ensure that they commission services in which people with epilepsy are involved in developing and reviewing an epilepsy care plan. Integrated care boards develop improvement plans in line with NHS England's National bundle of care for children and young people with epilepsy. They identify care-planning completion rates and work with service providers to increase them (bundle of care 'Variation 3' recommendation).

People with epilepsy have an epilepsy care plan that includes details about their care, treatment and preferences, which they develop and agree with their healthcare team.

Source guidance

Epilepsies in children, young people and adults. NICE guideline NG217 (2022), recommendations 2.1.7, 4.4.1, 4.4.2, 4.6.3, 4.6.4, 7.1.12, 7.2.4, 7.3.3, 7.3.4, and 11.2.5.

Definitions of terms used in this quality statement

Up-to-date and agreed comprehensive epilepsy care plan

The epilepsy care plan should be an individualised, patient-centred comprehensive document that covers decisions made about the person's past, present and future care. The level of detail in a plan, and the areas it covers, will vary depending upon the person's needs. A plan can be a clinic letter if it includes the care-planning information shown below.

It should be discussed and agreed between the person with epilepsy and (if appropriate) their family and carers, and with their primary and secondary health and social care professionals. The plan should include an agreed date for review, which will depend on the complexity of a person's needs.

The care plan should include information relating to the following topics:

  • seizure types and epilepsy syndrome if classified

  • aetiology if known

  • triggers that may provoke seizures

  • regular medication, including adherence to antiseizure medication, experiences of side effects from medication and coping strategies

  • reducing epilepsy-related risks, including how to reduce the risk of sudden unexpected death in epilepsy

  • name and contact details of the epilepsy team (including epilepsy specialist nurse, consultant responsible for their care and primary care doctor).

For some people with epilepsy, the care plan may also include:

  • an emergency care plan for prolonged seizures (if there have been previous prolonged seizures), including instructions about the timing and administration of rescue medication

  • comorbidities, including learning disability and mental health conditions

  • activities that should be adapted or avoided to reduce risk, including clear advice on driving if appropriate

  • goals of the person with epilepsy

  • care and supervision requirements, along with contact details

  • arrangements to coordinate and support transition of young people moving from children's to adults' services

  • reproductive health and pregnancy, including contraception, changes in medications, teratogenicity of antiseizure medications, pre-conception planning, planning the birth, postnatal care and breastfeeding.

[Adapted from NICE's guideline on epilepsies in children young people and adults, recommendations 2.1.6 and 2.1.11 and expert opinion]

Women of childbearing potential

We use the term 'women of childbearing potential' based on the source guidance used in developing this statement, and so the terminology is in line with the NHS Business Services Authority valproate safety dashboard. The measures also apply to people of childbearing potential who do not identify as women.

Equality and diversity considerations

People with epilepsy who are older, have a learning disability, have other complex needs (such as other comorbidities), or who do not read or speak English, should have their information and support needs taken into account. This could include:

  • giving longer appointments to allow more time for discussion

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

  • providing information that is accessible to people who do not speak or read English, and is culturally appropriate

  • involving family members, carers, an interpreter, or an advocate if the person wishes (see NICE's guideline on advocacy services)

  • sharing information with those involved in their care, if appropriate.

For people with additional needs related to a disability, impairment or sensory loss, information should be provided as set out in NHS England's Accessible Information Standard or the equivalent standards for the devolved nations.