Quality statement 5: Epilepsy specialist nurse

Quality statement

Adults 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 adults with epilepsy to be seen by an epilepsy specialist nurse who they can contact between scheduled reviews.

Process:

a) Proportion of adults with epilepsy who have seen a named epilepsy specialist nurse at diagnosis.

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

Denominator – the number of adults with epilepsy.

b) Proportion of adults 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 adults with epilepsy.

c) Proportion of adults with epilepsy who have the contact details of a named epilepsy specialist nurse.

Numerator – the number of adults in the denominator who have the contact details of a named epilepsy specialist nurse.

Denominator – the number of adults with epilepsy.

Outcome: Patient satisfaction with access to epilepsy specialist nursing.

What the quality statement means for each audience

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

Healthcare professionals ensure that adults with epilepsy are seen by an epilepsy specialist nurse who they can contact between scheduled reviews.

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

Adults with epilepsy see an epilepsy specialist nurse (a nurse who has training and experience in caring for people with epilepsy) who they 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.

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 adult, and their families or carers where appropriate.

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.