Quality statement 1: Referral to a specialist

Quality statement

Children and young people presenting with a suspected seizure are seen by a specialist in the diagnosis and management of the epilepsies within 2 weeks of presentation.

Rationale

Diagnosing epilepsy can be complex, and it has been estimated that misdiagnosis occurs in 5–30% of people. It is therefore crucial that specialists are involved early in diagnosing epilepsy and that they take great care to establish the correct diagnosis.

Quality measure

Structure: Evidence of local arrangements for children and young people presenting with a suspected seizure to be seen by a specialist in the diagnosis and management of the epilepsies within 2 weeks of presentation.

Process:

a) Proportion of children and young people presenting with a suspected seizure who are seen by a specialist in the diagnosis and management of the epilepsies.

Numerator – the number of people in the denominator who are seen by a specialist in the diagnosis and management of the epilepsies.

Denominator – the number of children and young people presenting with a suspected seizure.

b) Proportion of children and young people presenting with a suspected seizure who are seen by a specialist in the diagnosis and management of the epilepsies within 2 weeks of presentation.

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

Denominator – the number of children and young people presenting with a suspected seizure seen by a specialist in the diagnosis and management of the epilepsies.

Outcome:

a) Diagnosis of epilepsy that is subsequently found to be incorrect.

b) Diagnosis of a condition that is subsequently found to be epilepsy.

c) Number of children and young people with a recorded seizure type and/or syndrome.

What the quality statement means for each audience

Service providers ensure systems are in place for children and young people presenting with a suspected seizure to be seen by a specialist in the diagnosis and management of the epilepsies within 2 weeks of presentation.

Healthcare professionals ensure that children and young people presenting with a suspected seizure are seen by a specialist in the diagnosis and management of the epilepsies within 2 weeks of presentation.

Commissioners ensure they commission services for children and young people presenting with a suspected seizure to be seen by a specialist in the diagnosis and management of the epilepsies within 2 weeks of presentation.

Children and young people who have a suspected seizure are seen by a doctor with training and expertise in diagnosing and treating epilepsy within 2 weeks.

Source guidance

NICE clinical guideline 137 recommendations 1.4.6 (key priority for implementation), 1.4.1 and 1.4.2.

Data source

Structure: Local data collection.

Process: a) and b) Local data collection.

Outcome:

a) Organisations can collect data on the percentage of children where there is evidence that a diagnosis of epilepsy (two or more epileptic seizures) was made and then later withdrawn at any time during 12 months after first paediatric assessment using the Epilepsy12 national audit, section 3.10.

b) Local data collection.

c) Organisations can collect data on the diagnosis made by the paediatric team by the end of the 12 months after first paediatric assessment using the Epilepsy12 national audit, section 3.9.

Definitions

A suspected epileptic seizure is a reported acute episode of altered functioning, 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.

A specialist in the diagnosis and management of the epilepsies in children and young people is a paediatrician with training and expertise in epilepsy who has, for example, completed the specialist training module on epilepsy developed by the Royal College of Paediatrics and Child Health, or worked for a minimum of 6 months in a tertiary centre for neurology in children and attended appropriate paediatric epilepsy training courses. The care of the specialist's patients with epilepsy should be part of an ongoing peer review process related to epilepsy care.

Qualitystatement2:Investigations