Quality statement 2: Referral to tertiary specialist services | Epilepsies in children, young people and adults | Quality standards

Quality statement

People who meet the criteria for referral to a tertiary epilepsy service are seen within 4 weeks of referral, or 2 weeks if they meet the criteria for urgent referral. [2013, updated 2023]

Rationale

Some people with epilepsy need access to specialist investigations, treatment and management from a tertiary specialist service. Tertiary specialist services include genetic diagnosis, specialist assessment for surgery and treatments such as vagus nerve stimulation and ketogenic diet. 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. All people who meet the referral criteria for a tertiary epilepsy service should be seen within 4 weeks. Some groups of children are prioritised for urgent referral and should be seen within 2 weeks.

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 referred to a tertiary paediatric epilepsy service who meet the criteria for urgent referral 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 children referred to a tertiary paediatric epilepsy service who meet the criteria for urgent referral.

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

b) Proportion of people referred to a tertiary epilepsy service who meet the criteria for referral to be seen within 4 weeks that are seen within 4 weeks.

Numerator – the number of people in the denominator who are seen within 4 weeks of referral.

Denominator – the number of people referred to a tertiary epilepsy service who meet the criteria for referral to be seen within 4 weeks.

Data source: Data can be collected from information recorded locally by healthcare professionals and provider organisations, for example from patient records. Information on children and young people who meet the criteria for referral to a paediatric neurologist seen within 4 weeks of referral is included in the Royal College of Paediatrics and Child Health's Epilepsy12 audit of seizures and epilepsies for children and young people.

Outcome

Number of unplanned hospital attendances and admissions for people with epilepsy.

Data source: Hospital Episode Statistics database contains details of all admissions and A&E attendances at NHS hospitals in England. Data can also 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 (tertiary epilepsy services, tertiary paediatric epilepsy services, secondary care epilepsy services) have pathways for referrals from secondary care services to epilepsy specialists who are adult or paediatric neurologists. They have referral criteria with supporting guidance, and systems in place to ensure that people are seen within 2 or 4 weeks of referral as appropriate.

Healthcare professionals (such as neurologists and paediatricians with expertise in epilepsy) use referral criteria to ensure that people who will benefit most from specialist services are referred to tertiary epilepsy service providers, and to prioritise particular groups who should be referred urgently. Epilepsy specialists providing tertiary services (adult or paediatric neurologists) see children who meet urgent referral criteria within 2 weeks, and all other people who meet referral criteria within 4 weeks.

Commissioners commission tertiary epilepsy services with capacity to see people who meet urgent referral criteria within 2 weeks and all other people who meet referral criteria within 4 weeks. Integrated care boards develop improvement plans in line with NHS England's National bundle of care for children and young people with epilepsy. They ensure there are agreed pathways of referral into tertiary neurology services within each secondary care epilepsy service. They identify and map the provision and waiting times for paediatric neurology input and work with their tertiary paediatric neurology centres to determine paediatric neurologist provision within their system (bundle of care 'Tertiary care 1' recommendations).

People with epilepsy are seen promptly by a tertiary epilepsy service if they need further investigations or additional expertise to manage their epilepsy. People who need an urgent appointment are seen within 2 weeks, and all other people are seen within 4 weeks.

Source guidance

Epilepsies in children, young people and adults. NICE guideline NG217 (2022), recommendations 3.1.3 and 3.1.4

Definitions of terms used in this quality statement

Tertiary epilepsy service

A service provided by epilepsy specialists who are adult or paediatric neurologists who undertake continuing professional development in the investigation, diagnosis and management of complex epilepsy. It offers:

access to additional specialist assessments, including:
- neuropsychology
- neuropsychiatry
- specialised neuroimaging, including 3T MRI
- specialised neurophysiology, including video electroencephalogram (EEG) telemetry
specialised assessment and management of particular patient groups, including:
- people with learning disability
- pregnant women and pregnant people
- people transitioning between services
- older people with epilepsy
access to:
- specialised non-surgical treatments; for example, cannabidiol, ketogenic diet
- genetic diagnosis and counselling
- specialised assessment for surgery
- vagus nerve stimulation
- participation in relevant clinical trials and research studies.

[NICE's guideline on epilepsies in children young people and adults, terms used in this guideline]

Criteria for urgent referral to a tertiary epilepsy centre

Particular groups of children with suspected or confirmed epilepsy are referred to a tertiary paediatric epilepsy service to be seen within 2 weeks, if they:

are younger than 3 years
are younger than 4 years and have myoclonic seizures
have a unilateral structural lesion (if there are accompanying symptoms, signs or radiological features suggestive of raised intracranial pressure they will be referred immediately to neurosurgery)
are showing deterioration in their behaviour, speech or learning.

[NICE's guideline on epilepsies in children young people and adults, recommendation 3.1.4 and expert opinion]

Criteria for referral to a tertiary epilepsy service to be seen within 4 weeks

People with epilepsy are referred to a tertiary epilepsy service to be seen within 4 weeks, if any of the following apply:

uncertainty about the diagnosis or cause of epilepsy, the seizure type or epilepsy syndrome
the person has an epilepsy syndrome likely to be drug resistant, their seizures are drug resistant or their treatment is associated with intolerable side effects
further assessment and treatment approaches are indicated, such as: video electroencephalogram (EEG) telemetry, neuropsychology or neuropsychiatry, specialised neuroimaging, specialised treatments (for example medication that can only be prescribed by a tertiary epilepsy service, or a ketogenic diet), epilepsy surgery or vagus nerve stimulation
the person is eligible for and wishes to participate in a clinical trial or research study.

[NICE's guideline on epilepsies in children young people and adults, recommendation 3.1.3]

Equality and diversity considerations

People with a learning disability, a mental health condition, who are neurodiverse or have physical health conditions may find it difficult to access tertiary services if their comorbidities overshadow their epilepsy needs. People with these 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 their 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.