Quality standard

Quality statement 1: Referral and assessment after first seizure

Quality statement 1: Referral and assessment after first seizure

Quality statement

People presenting with a first suspected seizure are seen by a clinician with expertise in epilepsy within 2 weeks of presentation. [2013, updated 2023]

Rationale

People presenting with a first suspected seizure should be referred urgently to a specialist to ensure prompt, accurate diagnosis. Diagnosing epilepsy can be complex. Involving a specialist early can help avoid misdiagnosis and ensure that the person receives the correct management and support. Timely access is important to avoid delay in delivering care and treatment that may have a positive impact on the person's prognosis and quality of life.

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 children and young people presenting with a first suspected seizure referred to a paediatrician with expertise in epilepsy who are seen within 2 weeks.

Numerator – the number in the denominator who are seen within 2 weeks of referral.

Denominator – the number of children and young people presenting with a first suspected seizure who are seen by a paediatrician with expertise in epilepsy.

Data source: Royal College of Paediatrics and Child Health's Epilepsy12 audit of seizures and epilepsies for children and young people includes information on children and young people diagnosed with epilepsy seen by a paediatrician with expertise in epilepsy within 2 weeks of first referral.

b) Proportion of adults presenting with a first suspected seizure referred to a clinician with expertise in epilepsy who are seen within 2 weeks of referral.

Numerator – the number in the denominator who are seen within 2 weeks of referral.

Denominator – the number of adults presenting with a first suspected seizure who are seen by a clinician with expertise in epilepsy.

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

What the quality statement means for different audiences

Service providers (secondary care services such as neurology and paediatric services) have clinics to assess people after a first seizure and clinicians with expertise in epilepsy. They work with GPs and emergency departments to develop processes for urgent referrals to epilepsy services for people who have had a first suspected seizure.

Healthcare professionals (GPs, emergency medical doctors and paediatricians who do not specialise in epilepsy or neurological conditions) urgently refer people who present with a first suspected seizure to a clinician with expertise in epilepsy. Clinicians with expertise in epilepsy aim to see people within 2 weeks of presentation to identify the cause of the seizure and ensure a correct diagnosis is made.

Commissioners ensure that they commission services in which people presenting with a first suspected seizure are seen by a clinician with expertise in epilepsy within 2 weeks of presentation.

People who have a first suspected seizure are seen by a healthcare professional with expertise in epilepsy within 2 weeks.

Source guidance

Epilepsies in children, young people and adults. NICE guideline NG217 (2022), recommendation 1.1.1

Definitions of terms used in this quality statement

First suspected seizure

A reported acute episode of altered functioning, awareness or behaviour, presumed to be the direct result of a change in electrical activity in the brain, the nature of which raises concerns that a seizure has occurred. [Expert opinion]

Clinician with expertise in epilepsy

For children and young people, this is a paediatrician with expertise in assessing first seizures and diagnosing epilepsy. For adults, this is a clinician with expertise in assessing first seizures and diagnosing epilepsy (usually a consultant neurologist). Expertise may be demonstrated by training and continuing education in epilepsy and/or peer review of practice, and epilepsy must be a significant part of their clinical workload (equivalent to at least 1 session per week). [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 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 the person's 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.