Quality statement 8: Re-access to specialist care

Quality statement

Adults with epilepsy who have medical or lifestyle issues that need review are referred to specialist epilepsy services.

Rationale

People living with epilepsy may need to seek expert opinion if there are changes in their medical situation or they have lifestyle issues that are affected by their epilepsy or its treatment. It is important that they are able to have timely reviews by specialists to address any issues and receive accurate information to help them make informed choices.

Quality measure

Structure: Evidence of local arrangements for adults with epilepsy who have medical or lifestyle issues that need review to be referred to specialist epilepsy services.

Process: Proportion of adults with epilepsy who have medical or lifestyle issues that need review who are referred to specialist epilepsy services.

Numerator – the number of people in the denominator who are referred to specialist epilepsy services.

Denominator – the number of adults with epilepsy who have medical or lifestyle issues that need review.

What the quality statement means for each audience

Service providers ensure systems are in place for adults with epilepsy who have medical or lifestyle issues that need review to be referred to specialist epilepsy services.

Healthcare professionals ensure that adults with epilepsy who have medical or lifestyle issues that need review are referred to specialist epilepsy services.

Commissioners ensure they commission services for adults with epilepsy who have medical or lifestyle issues that need review to be referred to specialist epilepsy services.

Adults with epilepsy who continue to have seizures, have side effects from medication or need specialist advice (for example, a woman who is planning a pregnancy) are referred to specialist epilepsy services for a review.

Source guidance

NICE clinical guideline 137 recommendation 1.20.7 (key priority for implementation).

Data source

Structure: Local data collection.

Process: Local data collection.

Definitions

Medical or lifestyle issues that need review by a specialist include:

  • diagnostic uncertainty

  • pregnancy

  • consideration of drug withdrawal

  • recurrence of seizures

  • side effects of medication.

Any healthcare professional the person with epilepsy sees may determine that they need a specialist review, for example a GP, nurse or hospital doctor.

Specialist epilepsy services include secondary care services, tertiary services and specialist epilepsy nursing, which may be based in the community. The service that is most appropriate to provide the review will depend on the particular medical or lifestyle issue.