Specifying a service for the accurate diagnosis of the epilepsies in adults

Service components

The key components of a service for the accurate diagnosis of the epilepsies in adults are:

• appropriate and urgent referral of individuals with a recent onset suspected seizure to a specialist
• ensuring prompt access to appropriate diagnostic investigations
• developing a high-quality service.

Appropriate and urgent referral of individuals with a recent onset suspected seizure to a specialist

Patients presenting in primary care or accident and emergency departments following a suspected seizure usually undergo an initial screening by a physician. However, diagnosing epilepsy is difficult, and misdiagnosis is a frequent occurrence, particularly when the diagnosis is made by a non-specialist. The NICE clinical guideline CG20 on the epilepsies recommends that:

• all individuals presenting with a recent onset suspected seizure should be seen within 2 weeks by a specialist in the management of the epilepsies to ensure precise and early diagnosis and initiation of therapy as appropriate to the individual's needs
• protocols should be in place to ensure proper assessment in the emergency setting for individuals presenting with an epileptic seizure (suspected or confirmed)
• individuals presenting to an accident and emergency department following a suspected seizure should be screened initially by a physician, with onward referral to a specialist when an epileptic seizure is suspected or there is diagnostic doubt.

Commissioners may wish to consider whether there are appropriate care and referral pathways in place locally from both primary and emergency care settings to epilepsy specialists. See the Map of medicine care pathway for epilepsy and the 18 weeks commissioning pathway - blackouts 2008. Commissioners may also wish to consider whether there is adequate access to specialist care to meet the needs of their population in terms of both new and existing cases of diagnosed epilepsy, as a proportion of the latter may benefit from specialist review of the diagnosis.

Ensuring prompt access to appropriate diagnostic investigations

There are a number of investigations used to facilitate precise diagnosis and classification of epilepsy, including electroencephalogram (EEG) and neuroimaging, which includes magnetic resonance imaging (MRI) and computed tomography (CT). See a summary of investigations to support the diagnosis and classification of the epilepsies.

The NICE clinical guideline CG20 on the epilepsies includes the following recommendations:

• the diagnosis of epilepsy in adults should be established by a specialist medical practitioner with training and expertise in epilepsy
• at the initial assessment for a recent onset seizure, the specialist should have access to appropriate investigations
• individuals requiring an EEG should have the test performed within 4 weeks of it being requested
• MRI should be the imaging investigation of choice in individuals with epilepsy, and individuals requiring MRI should have the test performed within 4 weeks of it being requested
• long-term video or ambulatory EEG may be used in the assessment of individuals who present diagnostic difficulties after clinical assessment and standard EEG
• seizure type(s) and epilepsy syndrome, aetiology, and co-morbidity should be determined, because failure to classify the epilepsy syndrome correctly can lead to inappropriate treatment and persistence of seizures.

Commissioners may need to review whether there is adequate local provision and equitable and timely access to diagnostic investigations such as MRI and video telemetry to meet the needs of their population. They may also wish to be assured that there is appropriate local use of EEG and MRI/CT, in the correct sequence, in order to match demand for diagnostic investigations with capacity. Where there is limited or no local access to such investigations, robust referral pathways to other providers and timely, high quality communication with the requesting team are important for good patient care.

Service models

Commissioners may wish to consider delivering a service for the accurate diagnosis of the epilepsies in adults in a number of different ways, and mixed models of provision may be appropriate across a local health economy.

For example, in order to meet the standards outlined in the NICE clinical guideline CG20 on the epilepsies, the Wessex Neurological Centre Specialist Epilepsy Service developed a rapid access clinic for people who have had a suspected first seizure. Individuals are referred directly from the accident and emergency department or by their GP using a direct booking system. A consultant neurologist reviews the medical information, and where necessary, refers the individual for further tests.

Other service models use the skills of other healthcare professionals to support the initial screening and diagnostic process. The clinical epilepsy team in Bradford PCT runs a service based on a multidisciplinary team that is overseen by consultant neurologists and includes GPs with a specialist interest in epilepsy, epilepsy specialist nurses and a psychotherapist. These examples are offered to share practice and NICE makes no judgement on the compliance of these services with its guidance.

Local stakeholders, including service users, should be involved in determining what is needed from a service for the accurate diagnosis of the epilepsies in adults in order to meet local needs. The service should be patient-centred and integrated with other elements of management and care of individuals with epilepsy. In order to meet the health needs of the population, commissioners will need to carefully plan local services, which will include determining local need and minimum service standards, and planning the required capacity.

The service specification needs to consider:

• the required competencies of, and training for, staff responsible for providing the service
• the expected number of individuals using the service (this should take into account how quickly any changes in service provision are likely to take place)
• ease of access and service location; commissioners should engage with service users and other relevant individuals and organisations locally
• care and referral pathways
• information and audit requirements, including IT support and infrastructure
• planned service improvement, including redesign, quality, equitable access, and referral-to-treatment times according to the 18 week patient pathway or equitable waiting times locally for those services currently outside 18 weeks
• service monitoring criteria.

Useful sources of information may include:

• Delivering the 18 week patient pathway: 18 week neurology commissioning pathway on blackouts.
• Delivering the 18 week patient pathway: commissioning a world class imaging service is a reference tool that brings together a number of resources on diagnostic imaging.
• Transforming clinical neurophysiology diagnostic services to deliver 18 weeks: a good practice guide provides commissioners with information about where clinical neurophysiology needs to fit into their local 18 weeks strategy.
• Long term neurological conditions; a good practice guide to the development of the multidisciplinary team and the value of the specialist nurse is a resource to help commissioners and providers of services to people with long-term neurological conditions to offer the right service, delivered by an appropriate workforce, to meet the needs of patients.
• Implementing care closer to home: convenient quality care for patients provides practical support commissioners for the provision of more specialised services closer to home with the emphasis on the role of practitioners with specialist interests.
• The Map of medicine provides an information resource that visually organises the latest evidence and best practice guidelines.
• The NICE shared learning database offers examples of how organisations have implemented NICE guidance locally.