Quality statement 5: Epilepsy specialist nurse

Quality statement

Children and young people with epilepsy are seen by an epilepsy specialist nurse who they can contact between scheduled reviews.

Rationale

Epilepsy specialist nurses play a key role in supporting continuity of care between settings for people with epilepsy. There is some evidence that epilepsy specialist nurses improve clinically important outcomes such as knowledge, anxiety and depression for people with epilepsy in secondary and tertiary care.

Quality measure

Structure: Evidence of local arrangements for children and young people with epilepsy to be seen by an epilepsy specialist nurse who they can contact between scheduled reviews.

Process:

a) Proportion of children and young people with epilepsy who have seen a named epilepsy specialist nurse at diagnosis.

Numerator – the number of people in the denominator who have seen an epilepsy specialist nurse at diagnosis.

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

b) Proportion of children and young people with epilepsy who have seen an epilepsy specialist nurse at their review.

Numerator – the number of people in the denominator who have seen an epilepsy specialist nurse at their review.

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

c) Proportion of children and young people with epilepsy who have the contact details of a named epilepsy specialist nurse.

Numerator – the number of children and young people in the denominator who have the contact details of a named epilepsy specialist nurse.

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

Outcome: Patient or parent/carer satisfaction with access to epilepsy specialist nursing.

What the quality statement means for each audience

Service providers ensure that systems are in place for children and young people with epilepsy to be seen by an epilepsy specialist nurse who they can contact between scheduled reviews.

Health and social care professionals ensure that children and young people with epilepsy are seen by an epilepsy specialist nurse who they can contact between scheduled reviews.

Commissioners ensure they commission services for children and young people with epilepsy to be seen by an epilepsy specialist nurse who they can contact between scheduled reviews.

Children and young people with epilepsy see an epilepsy specialist nurse (a nurse who has training and experience in caring for people with epilepsy) who they or their parent/carer can contact between scheduled reviews.

Source guidance

NICE clinical guideline 137 recommendation 1.8.3.

Data source

Structure: Local data collection.

Process: a), b) and c) Local data collection. Organisations can collect data on the percentage of children with evidence of input by, or referral to, an epilepsy specialist nurse within 1 year using the Epilepsy12 national audit, section 2.

Outcome: Local data collection.

Definitions

The role of the epilepsy specialist nurse is described in NICE clinical guideline 137 recommendation 1.8.3 as: to support both epilepsy specialists and generalists, to ensure access to community and multi-agency services and to provide information, training and support to the child, young person or adult, families, carers and, in the case of children, others involved in the child's education, welfare and wellbeing.

Epilepsy specialist nursing may be provided in a number of different teams, for example the learning disabilities team.

At diagnosis in this context means within 3 months of the epilepsy diagnosis being confirmed.