Quality standard

Quality statement 3: Epilepsy specialist nurse

Quality statement 3: Epilepsy specialist nurse

Quality statement

People with epilepsy have access to an epilepsy specialist nurse. [2013, updated 2023]

Rationale

Epilepsy specialist nurses support people with all aspects of living with epilepsy and play a key role in ensuring continuity of care. They act as a point of contact for people with epilepsy, their families or carers; support other healthcare professionals in primary and secondary care, educational, respite and social care settings; provide training and advice; and have a central role in care planning and transition to adult services.

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.

Structure

Evidence of availability of epilepsy specialist nurses.

Data source: Data can be collected from electronic staff records. The Royal College of Paediatrics and Child Health's Epilepsy12 audit of seizures and epilepsies for children and young people contains information on whole time equivalent epilepsy specialist nurses by health board and trust. The National Confidential Enquiry into Patient Outcome and Death's Disordered activity review of the quality of epilepsy care provided to adult patients includes national level information on availability of epilepsy specialist nurses.

Process

a) Proportion of people receiving epilepsy care who are given the contact details of a named epilepsy specialist nurse or an epilepsy nurse team.

Numerator – the number of people in the denominator who are given the contact details of a named epilepsy specialist nurse or an epilepsy nurse team.

Denominator – the number of people receiving care from an epilepsy service.

Data source: Data can be collected locally using patient records or audits of clinic letters.

b) Proportion of people with epilepsy who continue to have seizures who have had an information and care-planning session with an epilepsy specialist nurse at least twice within the past year.

Numerator – the number in the denominator who have had an information and care-planning session with an epilepsy specialist nurse at least twice within the past year.

Denominator – the number of people with epilepsy who continue to have seizures.

Data source: Data can be collected from information recorded locally by healthcare professionals and provider organisations, for example from patient records.

c) Proportion of children and young people diagnosed with epilepsy who received input from an epilepsy specialist nurse within the first year of care.

Numerator – the number in the denominator who received input from an epilepsy specialist nurse.

Denominator – the number of children and young people diagnosed with epilepsy in their first year of care.

Data source: The Royal College of Paediatrics and Child Health's Epilepsy12 audit of seizures and epilepsies for children and young people Performance Indicator 2.

What the quality statement means for different audiences

Service providers (adult and paediatric epilepsy services) ensure they have enough epilepsy specialist nurses to meet local need. They ensure the specialist nurses perform a central role in care planning, support people to manage their epilepsy and act as a point of contact for people with epilepsy and other services.

Healthcare professionals (epilepsy specialist nurses) are a point of contact and a source of information, education and support for people with epilepsy and their families and carers. They provide information and care-planning sessions for people with epilepsy, and liaise with and support others working with people with epilepsy such as epilepsy specialists, other health, education and social care professionals, and respite carers.

Commissioners ensure that they commission services in which people with epilepsy have access to epilepsy specialist nurses. 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 gaps in epilepsy specialist nurse provision and work with relevant providers to ensure plans are in place to address any variation in access (bundle of care 'Variation 1' recommendation).

People with epilepsy have an epilepsy specialist nurse (a nurse who has training and experience in caring for people with epilepsy) who coordinates their care, helps them manage their epilepsy and is their point of contact within the epilepsy service.

Source guidance

Epilepsies in children, young people and adults. NICE guideline NG217 (2022), recommendation 11.1.1

Definitions of terms used in this quality statement

Access

Being able to contact and use the services provided by an epilepsy specialist nurse. These include providing information, education and support on administering medications, care planning, self-management, problems with cognition, the impact of epilepsy on daily activities, management of side effects, mental health, reproductive health and pregnancy, and sudden unexpected death in epilepsy. [Adapted from NICE's guideline on epilepsies in children young people and adults, box 1 for recommendation 2.1.11, rationale for recommendations 11.1.1 to 11.1.4]

Epilepsy specialist nurse

A clinical nurse with specialist knowledge and experience of supporting children, young people and adults with all aspects of living with epilepsy. They have responsibility for providing care for people with epilepsy as part of their clinical role. [NICE's guideline on epilepsies in children young people and adults, recommendation 11.1.1 and expert opinion]

Equality and diversity considerations

People with epilepsy who are older, have a learning disability, have other complex needs (such as other comorbidities) or whose first language is not 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.