Epilepsy demands structured management but few patients are keen to attend clinics. Dr Andrew Orr (left) and Aileen Mackenzie describe their practice’s solution

Patients with epilepsy often receive scant attention in primary care, yet they form a substantial group, with a prevalence of 0.5-1% of the population. Epilepsy patients have increased morbidity, both physical and mental, and increased mortality, from many causes. Both patients – and their carers – have a poor quality of life.

Few models of care are described in the literature, but several studies have indicated the shortfalls of epilepsy management in primary care. Only 37% of patients with epilepsy have consulted their GP about their illness in the past year with "little evidence of any regular review being undertaken”, and "counselling about nonclinical aspects ... is ... inadequate”.1

Another study finds that "general practice care for epilepsy is still reactive”.2 However, "most people with epilepsy (67.6%) would prefer their care to be community based, especially older patients and patients with mild epilepsy”.3

The recent SIGN guideline on diagnosis and management of epilepsy in adults has clearly indicated aspirations for care of patients with epilepsy in primary care.4 A structured management system with annual review is seen as desirable (Box 1, below).

Box 1: Models of care4
A structured management system for epilepsy should be established in primary care. As with other chronic diseases, an annual review is desirable. 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 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

Reproduced with kind permission from SIGN 70. Diagnosis and Management of Epilepsy in Adults. Edinburgh, SIGN 2003.

The importance of epilepsy is emphasised by its inclusion in the quality and outcomes framework of the new GP contract.

Addressing epilepsy in the practice

Ours is a semi-rural practice with 6500 patients. In 1999, we decided to address the specific needs of our epilepsy patients.

Identifying patients

There were some immediate obstacles to identifying patients with epilepsy. On our computer database, the diagnosis of the condition was sometimes missing or unclear. A wide range of related conditions (for example epilepsy, grand mal, petit mal, seizures, status epilepticus, convulsions and fits) were found to cover the one diagnosis. There was often little indication as to whether the condition was currently active.

Up to a third of patients taking antiepileptic drugs are taking them for other reasons, such as for analgesia or psychiatric indications.

We therefore looked for patients with every possible diagnosis, and all those taking anti-epileptic drugs, which gave us a total of 123 patients. We then excluded patients with old or unreliable diagnoses and those taking anti-epileptic drugs for other reasons. The records were then scrutinised to see if the patients satisfied diagnostic validation criteria and were complying with medication. This left us with a final total of 50 patients (0.77% of the practice population, expected range 0.5-1%).

Data registration

Data were recorded on a practice epilepsy register (Figure 1, below).This document also serves as an annual review diary. All patients with epilepsy of whatever kind were recorded on the computer simply as having ‘epilepsy’ (Read code F25) to avoid confusion.

Figure 1: Registration and initial assessment document

Records of all patients who had had epilepsy in the past, but in whom the disease was not currently active, were recorded as ‘h/o epilepsy’ (Read code 1743), with ‘epilepsy medication stopped’ and the date (Read code 667A).

Initial case assessment

All patients identified on the register were invited for a personal assessment. Patient groups, such as Epilepsy Scotland, advise that patients with epilepsy are usually reluctant to participate in formal clinic situations. They often feel stigmatised by their diagnosis and neglected by the medical services, and can be suspicious of any unsolicited approaches.

We sent carefully worded letters inviting patients to contact us to arrange an appointment for a case assessment. We did not use the word ‘clinic’, and emphasised that no changes or interventions would be made without discussion and the patient’s agreement.

Some patients were assessed opportunistically when they attended the surgery for another reason. Nonresponders were followed up by telephone call. Some patients only agreed to be assessed at home.

The practice health visitor undertook most of this work, and a 60% uptake was achieved in the first 6 months.

At the assessments, missing data were entered into the register, a psychosocial profile was completed, and the patient was counselled and given written information, including A Guide to Epilepsy.5 Possible further interventions, such as changing or withdrawing treatment, or contraceptive or pregnancy advice, were brought to the attention of the doctor who knew the patient best, for action.

Annual review diary

We developed an annual review diary as an alternative to a formal clinic. Using our computer recall system, all patients’ notes are scrutinised once a year, and a diary entry is made on the reverse of the registration document. This records whether the patient has been seen since the last review, any significant events that have occurred, any outstanding problems and any action that needs to be taken.

Most patients have been seen during the past year or are stable and do not need to be invited for a face-to-face review. Some will have issues to be addressed and only these patients are invited for review.The diary shows, at a glance, those patients who have not been seen for a year or more, and they may also be invited for personal review. Once a diary entry has been made, a computer marker ‘epilepsy monitoring’ (Read code 667) is entered.

The success of the project

The project’s findings and outcomes were as follows:

  • For five patients, anti-epileptic drugs were withdrawn during the initial validation and assessment. Three had been recommended to withdraw in the past but had not done so. The other two were not complying well with their antiepileptic medication.
  • For four patients, anti-epileptic drugs were subsequently withdrawn; the implications were discussed in full with the patients before this decision was made.
  • After treatment was withdrawn from these patients the number of patients on the register has settled at 45-47 (0.69-0.72% of the practice population).
  • Several patients who were not attending for hospital care have been found to have covert seizures, poor control, unacceptable antiepileptic drug side-effects or poor drug compliance. We have been surprised at the level of acceptance, or perhaps denial, exhibited by some patients; these issues are being addressed. Four patients have been referred, or referred again, for a specialist opinion.
  • Six patients have been identified as ‘locked in’ to medication (probably not justified) for fear of losing their driving licence.
  • Seven women of child-bearing age have been identified and their contraceptive requirements addressed. One of them has received advice and specialist treatment during pregnancy.
  • Patients whose medication has been withdrawn or adjusted have experienced substantial improvements in day-to-day living (see case history, below).
  • All patients have been given counselling, information and support. Several are now receiving social work assistance and benefits that they were not previously receiving. One patient is receiving psychiatric care for depression linked to longterm, poorly controlled epilepsy.

Case history

A 66-year-old man with a life history of epilepsy and psychosis was couch-bound at home and taking a mixture of anti-epileptic drugs and neuroleptic medications. He was having major seizures several times a week – his family considered this normal. He had not seen a doctor for 20 years. It took several home visits to persuade him that life might be better, and many more contacts to persuade him to accept re-referral to a specialist clinic. Now his anti-epileptic drug therapy has been completely revised and he is no longer taking neuroleptic medication. His seizures now occur about once a month and are very minor. He has simply woken up, resumed a normal life and has recently been away on a family holiday.

Project review

No formal audit of epilepsy care in the practice had been made before we began this project because there was little guidance as to what aspects of care should be reviewed.

As with most systems for chronic disease management, measurable items are difficult to identify. Some suggestions are made in the SIGN guideline (section 7.2). Others are proposed in the new GP contract under ‘quality and outcomes’.

We completed a simple review of our activity in November 2002, three years after starting our project. There were 45 patients on the register.The review showed:

  • Forty patients (88%) had been reviewed in the past year; for these, the register was updated and details entered in the annual review diary
  • Five patients (12%) had not been reviewed: of these, two were new patients, two had refused review, one had been missed: action is therefore needed to ‘flag up’ new patients.
  • Twenty-five patients (63%) had been reviewed in the practice alone: 21 in person, four by case note examination.
  • Nine patients (22%) had been reviewed and were receiving care shared between hospital and practice
  • Six patients (15%) had been reviewed mainly at a hospital.


The early stages of this project – case finding, establishing the register and the initial case assessment – were time consuming. However, we have found the ongoing work much easier, particularly through using the annual review diary – in effect, a ‘virtual clinic’.

The rewards in terms of patient gains have made the scheme thoroughly worthwhile. Our approach has been well received by our patients; they were pleased that we were taking an interest in them and giving them an opportunity to air their concerns.

We may have to modify our scheme in the light of the new SIGN guideline, but hope that this description of our project will help others. Although every practice will have a different approach, we have found that trust, understanding and a safe environment are central to a successful service.


  1. Jacoby A, Graham-Jones S, Baker G, Ratoff L et al. A general practice records audit of the process of care for people with epilepsy. Br J Gen Pract 1996; 46: 595-9.
  2. Chappell B, Smithson WH. Patient views on primary care services for epilepsy and areas where additional professional knowledge would be welcome. Seizure 1998; 7: 447-57.
  3. Poole K, Moran N, Bell G, Solomon J et al. Patients’ perspectives on services for epilepsy: a survey of patient satisfaction, preferences and information provision in 2394 people with epilepsy. Seizure 2000; 9: 551-8.
  4. Scottish Intercollegiate Guidelines Network. SIGN 70. Diagnosis and Management of Epilepsy in Adults. Edinburgh: SIGN 2003.
  5. Epilepsy Scotland. A Guide to Epilepsy: What you need to know. Glasgow: Epilepsy Scotland. www.epilepsyscotland.org.uk

Guidelines in Practice, September 2003, Volume 6(9)
© 2003 MGP Ltd
further information | subscribe