Epilepsy diagnosis should be carried out by specialists but GPs have an important role to play in long-term management of the condition, says Dr Henry Smithson

Approximately 1000 people die of epilepsy-related causes each year in the UK, and the risk of death is high in adolescents and young adults.1 Individuals who do not have seizures are not at risk of epilepsy-related death.2

Medical review for patients with epilepsy is inadequate, and interprofessional communication is poor.1 The Chief Medical Officer’s Annual Report 2001 found that "People with epilepsy are at triple jeopardy: they suffer stigma because of their disease, understanding of the illness amongst health professionals is not high and the problem is not addressed by health services with the same commitment as is given to other chronic diseases”.3 The need for an epilepsy guideline is clear.

SIGN produced an evidence-based guideline for adults with epilepsy in 2003.4 In October 2004, NICE published The epilepsies – The diagnosis and management of the epilepsies in adults and children in primary and secondary care, based on clinical evidence and evidence for cost-effectiveness.

Aim of the guideline

The guideline, which is intended for clinicians in primary and secondary care, aims to improve care by:

  • Improving the diagnostic process to reduce the rate of misdiagnosis
  • Encouraging patients to participate in their care and setting out a plan of care
  • Suggesting better use of antiepileptic treatment for individual patients
  • Endorsing a regular structured review
  • Improving provision of information for patients and professionals
  • Setting out referral pathways between primary, secondary and tertiary care.

Developing a national evidence-based guideline

The epilepsies guideline was developed by the National Collaborating Centre for Primary Care, located at the RCGP, and its methodology team at the University of Leicester. The guideline development group, which consisted of health professionals from a range of specialties and patient representatives, developed 72 key clinical questions, 52 of which had separate adult and child stems. These were refined into evidence-based questions before literature searches were carried out.

A separate literature review was conducted to assess the economic evidence. A draft guideline was sent out for consultation to 125 stakeholders, and after amendment the final draft was submitted to an independent guideline review panel and peer reviewers.

The epilepsy charities have supported the initiative and it is anticipated that a key driver towards implementation of these guidelines will be patients and families.

Promoting best practice

There is a reported scarcity of neurologists in the UK, and few other clinicians have an interest or expertise in epilepsy. Therefore, the roles of healthcare professionals involved in epilepsy care need to be better defined to reduce duplication of effort and encourage best use of skills and experience.

Specialists have an important role in confirming the diagnosis, tailoring treatment to the individual and managing patients with refractory or changing seizures. However, as 70% of people with epilepsy will enter remission,5 GPs have an important role to play in managing the condition in the long term.

Patients with epilepsy see their GP more often than those who do not have a long-term condition, and annual medication review is now commonplace. Adopting some of the guideline’s key recommendations should result in more effective use of consultation time in both primary and secondary care. By optimising care, seizure frequency and the impact of the condition can be reduced.

Epilepsy is now included in the nGMS contract, but the few quality points that are at stake should act not as the end point, but rather as the beginning of better care. Simply posting out a questionnaire or offering a telephone consultation is unlikely to elicit accurate data or real concerns or problems.

Practices may wish to develop an epilepsy template that covers the areas in the structured review rather than just the quality indicators.

Key recommendations

The guideline’s key recommendations of particular relevance to primary care are given in Box 1 (below). Figure 1 (below) and Figure 2 (below) show outline algorithms of care for adults and children.

Box 1: Key recommendations for primary care
  • All individuals with a recent-onset suspected seizure should be seen urgently by a specialist.This is to ensure precise and early diagnosis and initiation of therapy as appropriate to their needs
  • All individuals with epilepsy should have a comprehensive care plan that is agreed between the individuals, their family and/or carers as appropriate, and primary and secondary care providers
  • The anti-epileptic drug treatment strategy should be individualised according to the seizure type, epilepsy syndrome, co-medication and co-morbidity, the individual's lifestyle and the preferences of the individual, their family and/or carers as appropriate. Withdrawal of anti-epilepsy medication must be managed by, or be under the guidance of the specialist
  • If seizures are not controlled and/or there is diagnostic uncertainty or treatment failure, individuals should be referred to tertiary services soon for further assessment
  • Regular blood test monitoring in adults and children is not recommended as routine. Measurement of serum prolactin is not recommended for the diagnosis of epilepsy. Asymptomatic minor abnormalities in test results are not necessarily an indication for changes in medication
  • In order to enable informed decisions and choice, and to reduce misunderstandings, women with epilepsy and their partners, as appropriate, must be given accurate information and counselling about contraception, conception, pregnancy, caring for children, breastfeeding, and the menopause
  • Adults and children with epilepsy should have a regular structured review
FIgure 1: Outline algorithm of care for adults
FIgure 2: Outline algorithm of care for children
Reproduced from The epilepsies – the diagnosis and management of the epilepsies in adults and children in primary and secondary care, with kind permission of the National Institute for Clinical Excellence


Diagnosing epilepsy can be difficult and is the province of the specialist. Even so, approximately 25% of cases are misdiagnosed and this must change. We in primary care are well placed to gather information about a possible epilepsy episode from the patient, family and witnesses before referring the patient to a specialist.

Treatment should not be started until the diagnosis is confirmed. It is difficult to correct a wrong diagnosis of epilepsy, and particularly so if patients believe that any seizure-free periods are caused by anti-epileptic medication.

Care planning

All epilepsy patients should have a comprehensive care plan that is agreed by the individual, their family and/or carers, and clinicians in secondary and primary care. It should address medical issues such as seizure control, advice about managing changes in seizure character or frequency and treatment benefits.

The plan should also address various drug and non-drug options, adverse effects, co-medication and co-morbidity as well as personal and lifestyle issues. There should be agreement about when and where a structured review of the patient’s epilepsy should take place.

GPs know their patients and can interpret and explain specialist advice. By being involved with the care plan, GPs can endorse and facilitate appropriate and individualised treatment and support.

Drug treatment

Drug treatment is covered extensively in the guideline. Initiating anti-epilepsy drug therapy is the role of the specialist. If management is straightforward, GPs can prescribe continuing anti-epilepsy drug therapy if local circumstances and/or licensing allow.

Seizure control

The national audit of epilepsy deaths demonstrated that care can be suboptimal and epilepsy can be managed better.1

The development of epilepsy registers should improve monitoring and identification of treatment failure or potential misdiagnosis. By reducing or abolishing seizures, the impact of the condition is lessened.

Blood testing

Generally, monitoring blood levels of anti-epileptic drugs is not helpful. If a patient is taking a single drug and experiencing continuing seizures, the care plan should list dose increments that can be employed until either seizure freedom is achieved or drug side-effects are present.

However, it is sometimes necessary to monitor drug levels, and indications for this are:

  • to detect non-adherence to the prescribed medication
  • if toxicity is suspected
  • to adjust phenytoin dose
  • to check for possible drug interactions
  • for specific clinical conditions, e.g. status epilepticus or organ failure, or pregnancy.

Care of women with epilepsy

Some anti-epileptic drugs may adversely affect the unborn child but so can maternal seizures. Enzyme-inducing epilepsy medication can interact with contraceptive pills and injections. Women considering pregnancy should be referred to a joint specialist clinic where pregnancy and epilepsy are managed together. Advice should also be available for women after delivery to discuss aspects of looking after their baby.

Structured review

In children, structured review should take place at least once a year with a specialist. In adults, structured review should be carried out at least yearly by the GP, or by a specialist, depending on the individual’s epilepsy, circumstances and wishes.

At the review, individuals should be given access to written and visual information and support or counselling services, as well as information about voluntary organisations, clinical nurse specialists, timely and appropriate investigations and referral to tertiary services when indicated.

Specialist services should be used to ensure appropriate diagnosis and investigation and to start treatment. Re-referral should be considered if the epilepsy is inadequately controlled. Adults whose epilepsy is well controlled may have medical or lifestyle problems that require specialist advice.

Treatment should be reviewed regularly so that the patient is not taking ineffective or poorly tolerated treatment for long periods, and to ensure concordance with medication and that side-effects are kept to a minimum.


The guideline attempts to address variations in clinical care and suggest ways of developing a more cohesive and effective service. Patients, GPs, specialists and those who commission care now have a robust tool to develop cost-effective clinical care for a previously disadvantaged and stigmatised group of people.

The guideline has been published in several formats, including a short guide for patients, quick reference guides for the care of adults and children and a full guideline, all of which are available from the NICE website. The RCGP has published the full guideline and an evidence review.6

NICE Clinical Guideline 20. The epilepsies – The diagnosis and management of the epilepsies in adults and children in primary and secondary care can be downloaded from the NICE website: www.nice.org.uk.


  1. Hanna NJ, Black M, Sander JW et al. National Sentinel Clinical Audit of Epilepsy-Related Death: Epilepsy – death in the shadows. London: The Stationery Office, 2002.
  2. Clinical Standards Advisory Group. Services for Patients with Epilepsy. London: DoH, 2000.
  3. Department of Health.The Annual Report of the Chief Medical Officer of the Department of Health 2001. London: DoH, 2001.
  4. Scottish Intercollegiate Guidelines Network. Diagnosis and management of epilepsy in adults. SIGN 70. Edinburgh: SIGN, 2003.
  5. Cockerell OC,Johnson AL,Sander JW et al.Remission of epilepsy: results from the National General Practice Study of Epilepsy. Lancet 1995; 346: 140-4.
  6. Stokes T, Shaw EJ, Juarez-Garcia A et al. Clinical Guidelines and Evidence Review for the Epilepsies: diagnosis and management in adults and children in primary and secondary care. London: Royal College of General Practitioners, 2004.

Click here for a checklist to aid implementation of the NICE guideline on diagnosis and management of the epilepsies in adults and children in primary and secondary care which you can download and keep

Guidelines in Practice, December 2004, Volume 7(12)
© 2004 MGP Ltd
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