5.1 Models of primary and shared care for epilepsy

There are few models of care for epilepsy in primary care described in the literature. These have been practice-based descriptions but there has been no general adoption of any particular model.

Several descriptive studies have indicated the shortfalls of epilepsy management in primary care. Only 37% of epileptic patients have consulted their GP about their illness within the last year, with “little evidence of any regular review being undertaken” and “counselling about non-clinical aspects... is ... inadequate”.²⁷¹ Evidence level 3

Such shortfalls are reflected in descriptive studies of patients’ views. “Only around a fifth of patients felt that their care is being (properly) shared between hospital and general practice”, and “provision of information (about epilepsy) is perceived to be poor at all levels”.²⁷² “In conclusion general practice care for epilepsy is still reactive”.²⁷³ Evidence level 3

However, “most people with epilepsy (67.6%) would prefer their care to be community based, especially older patients and patients with mild epilepsy”.²⁷² Also “61% of patients would prefer their care to be shared between primary and secondary services”.²⁷³ Evidence level 3

The primary care needs of patients with epilepsy have been well stated in a UK epilepsy needs document.²⁷⁴ These include the suggestion of a structured annual review, as has now become common with other chronic diseases, such as asthma and diabetes. Suggested tasks for primary care are listed in the document. Implementation of such management in primary care would be facilitated by the deployment of specialist epilepsy nurses, who can liaise between primary care and hospital care, and promote a shared care model.²⁷² Evidence level 3

A structured management system for epilepsy should be established in primary care. As with other chronic diseases, an annual review is desirable.

The annual review would be facilitated and enhanced by the deployment of specialist epilepsy nurses, linking primary care to the hospital system (shared care).

The shared care management system adopted should seek to: identify all patients with epilepsy, register/record basic demographic data, validate the classification of seizures and syndromes make the provisional diagnosis in new patients, provide appropriate information and refer to a specialist centre monitor seizures, aiming to improve control by adjustment of medication or re-referral to hospital services minimise side effects of medications and their interactions facilitate structured withdrawal from medication where appropriate, and if agreed by the patient introduce non-clinical interventions, and disseminate information to help improve quality of life for patients with epilepsy address specific women’s issues and needs of patients with learning disabilities.

Healthcare professionals, at all levels, should be aware of the valuable contribution which can be made by Voluntary Sector Field Workers.

5.2 Models of secondary and tertiary care for epilepsy

5.2.1 ROLE OF EPILEPSY CLINICS

The need for clinical epilepsy services is outlined in Annex 3.

A Cochrane review examined the evidence for the effectiveness of epilepsy clinics in comparison to medical clinics.²⁷⁵ Only one randomised trial was identified and this was excluded on methodological grounds. Therefore, relevant clinical studies have not yet been undertaken to establish the effectiveness of epilepsy clinics.

Current preferred practice is for epilepsy clinics to be developed in hospitals. These clinics provide the expertise of epilepsy specialists, epilepsy specialist nurses, access to further specialised investigations and, when necessary, to inpatient facilities. Epilepsy clinics also have important roles in teaching and research in epilepsy.

There are two broad roles for epilepsy clinics:

• assessment and management of recent-onset epilepsy
• care of patients with drug-resistant epilepsy.

Some epilepsy centres have developed further specialisation of the epilepsy clinics such as ‘fast-track’ clinics for early diagnosis, clinics for epilepsy in children, in young people, in pregnancy, and in learning disability.

Services should be provided in acute hospitals (or the new Ambulatory Care and Diagnostic Centres (ACADs)) to enable patients with probable recent-onset seizures to be seen within two weeks of onset.

Hospitals should provide services to review people with drug-resistant epilepsy.

Subspecialty epilepsy clinics should also be available to meet the needs of specific groups of patients (epilepsy in learning disability, in pregnancy, in adolescence and in potential surgical candidates).

5.3 Role of epilepsy nurse specialists

The Joint Epilepsy Council²⁷⁶ noted that epilepsy specialist nurses are cost effective, a point also highlighted by another study.²⁷⁷ Epilepsy nurses can also reduce the length of stay in hospital for people with epilepsy and increase patient satisfaction.²⁷⁷ Evidence level 2++,2+,4

A Cochrane review concluded that although the potential benefits of epilepsy nurses varied in all studies reviewed, there was a perceived higher quality of care, less time spent on travel, reduction of the waiting times, and better continuity of care noted by the patients who had contact with an epilepsy nurse specialist.²⁷⁸ Evidence level 2++,2+,4

High-quality studies have not yet been performed to identify the effectiveness of epilepsy specialist nurses. In the studies reviewed, no roles performed by epilepsy nurse specialist were shown to be detrimental. Consensus opinion agrees that they are a fundamental element of a multidisciplinary epilepsy team, working alongside consultants playing a part in the assessment and diagnostic process and alongside counsellors establishing the quality of life impact on the patient as well as giving advice and support.²⁷⁹ Evidence level 2++,2+,4

One study showed that patients seen by an epilepsy nurse specialist were more likely to have discussed general epilepsy topics and less likely to report missing taking their medication.²⁸⁰ Patients and carers are also reported to benefit from nurse specialists who were readily accessible and had time to discuss patients’ problems, and who could act as the patients’ advocates.²⁸¹ Another study showed that 70% of patients with epilepsy attending clinics run by epilepsy nurse specialists had previously unidentified problems successfully resolved by the nurse including misdiagnosis, overmedication and lack of awareness of drug side effects.²⁸² Evidence level 2++,2+,4

The role of epilepsy nurses generally follows the wider role of the specialist nurse and includes: support and information for the patient, carer and family; provision of up-to-date information and advice; support and information for the multidisciplinary team involved in the patients’ care; education for statutory and voluntary organisations and a source of expert knowledge. More specific roles include adjusting medication, ordering relevant tests, and patient review on return clinic visits.

Just as it is essential to have a clinician who is a specialist in epilepsy leading the epilepsy unit, having epilepsy nurse specialists can enhance the quality of life for patients and seems to give more of a patient-centred approach to their care.

Each epilepsy team should include epilepsy nurse specialists.