Dr Simon de Groot explains how management of patients with epilepsy remains poor despite availability of guidance and recognition of the impact of the condition

Epilepsy is the most common neurological condition seen in primary care:1,2

  • The annual incidence of new cases each year in developed countries is 1 per 2000 persons
  • The prevalence for active epilepsy is 5–10 cases per 1000 persons
  • The lifetime prevalence (overall risk of a person having a non-febrile seizure during their life) is between 2% and 5%
  • The discrepancy between lifetime prevalence and prevalence of active epilepsy suggests that in most patients the condition remits.

Impact on GPs

Translating the above figures to general practice means that the average UK GP, with a personal list size of 2000 patients, can expect to:

  • see only one new case per year
  • have 10–20 patients with active epilepsy, of whom five will have poorly controlled epilepsy with more than one attack per month.

Around 90% of patients with epilepsy will consult their doctor once a year regarding their condition.3 The GP is thus ideally placed to provide structured care. The majority of GPs are happy to have overall responsibility for their patients with epilepsy. However, given that GPs see so few cases, it is not surprising that they have traditionally reported difficulties with diagnosis, counselling, and prescribing of anti-epileptic drugs (AEDs).4

Increasingly, GPs now work in larger group practices, which have an average of 10,000 patients. Epilepsy is therefore common enough for a GP to develop a special interest in the condition, and to maintain the appropriate knowledge and skills to manage affected patients.

Quality of epilepsy care

Historically, epilepsy has been regarded as a stigmatising illness and as a low medical priority. One shocking result of this is the excess mortality rate:5

  • people with chronic epilepsy are 2–3 times more likely to die early than those without epilepsy
  • around 1000 people in England die each year from epilepsy related causes
  • approximately 60% of these deaths can be attributed to sudden unexpected death in epilepsy (SUDEP)
  • more than one-third of deaths occur in children and young adults
  • people with epilepsy are at a greater risk of depression and suicide, and accidental deaths are also more common (e.g. drowning).

In 2002, a report on the National Sentinel clinical audit of epilepsy-related death, Epilepsy—death in the shadows, demonstrated the extent of mortality relating to epilepsy.5 The aim of this report was to bring epilepsy ‘out of the shadows’ and raise its profile. The report examined all the epilepsy related deaths in the UK during 1999–2000 and audited a sample of 595 deaths. It was estimated that out of 1000 epilepsy-related deaths each year, around 400 are from preventable causes.5

Primary care

The audit reviewed the GP case notes of 286 individuals who died from epilepsy related causes:5

  • Most individuals (69%) were referred to secondary care after first seizure within a week; however there was delay to referral of between 1 and 6 months in 15% of cases
  • Waiting times for a specialist appointment were disappointingly long—while 31% of individuals were seen within a month, 15% had to wait more than 6 months, and some patients died while awaiting their hospital appointment
  • The review process was unstructured and lacking in detail—in the year prior to death there had been no record of epilepsy review for 67% of patients receiving all of their epilepsy care in general practice
  • Of those receiving combined primary/secondary care, 28% were considered to fulfil the criteria for reassessment (e.g. change in seizure frequency) but only 9% were re-referred.

Secondary care

The report found a number of issues relating to the management of epilepsy in secondary care. The audit reviewed 180 hospital records (158 adults and 22 children) with epilepsy related deaths:5

  • Although 93% of adults were not recorded as seizure free in the year before death, at least 37% of these people were not seen in the year before they died
  • Basic clinical assessments and investigations were poor. In adults, seizure frequency was either not recorded or unclear in 47% of deaths; 32% had not received an electroencephalogram (EEG)
  • Therapeutic management was considered inadequate in 20% of adults and 45% of children. Despite ongoing seizures in some cases, 18% of children had not been prescribed AEDs
  • The expert panel considered that overall 39% of adult deaths and 59% of deaths in children were considered to have been potentially or probably avoidable.

Guidelines on the management of epilepsy

There is no shortage of guidance on diagnosis and management of epilepsy. Guidelines available are:

  • National Institute for Health and Care Excellence (NICE). Clinical Guideline 20 on The diagnosis and management of epilepsies in adults and children in primary and secondary care, 20046
  • Scottish Intercollegiate Guidelines Network (SIGN). SIGN 70 on Diagnosis and management of epilepsy in adults, 2003 (updated 2005)7
  • SIGN 81 on Diagnosis and management of epilepsies in children and young people, 20038
  • Department of Health. National service framework for long-term conditions, 20059
  • Clinical Knowledge Summaries, Epilepsy—Management, 2009.10

NICE guidance

Diagnosis of epilepsy
The NICE guideline on the diagnosis and management of epilepsy recommends that primary care and accident and emergency departments should refer patients with new suspected seizures to a specialist with training and expertise in the epilepsies (see Figure 1). The specialist (who is usually a neurologist, but may be a suitably experienced medical practitioner) should see the patient urgently (i.e. within 2 weeks of referral).6

A diagnosis of epilepsy should be made by the specialist using appropriate tests (e.g. EEG, magnetic resonance imaging, computed tomography). These tests should be available within 4 weeks of them being requested.6

Management of epilepsy
The specialist service should provide information on the diagnosis, prognosis, and risk and benefit of treatment. Patients with epilepsy and their families should be empowered to manage their conditions as well as possible, and access should be provided to appropriate sources of information, support groups, and points of contact for the specialist services. Information should be given on the risks of epilepsy and how to prevent accidents. Treatment should take into account lifestyle and personal preferences, with the patient participating in treatment decisions.6

Epilepsy specialist nurses should be an integral part of the care network. They can support both epilepsy specialists and generalists:6

  • to ensure access to community and multi-agency services
  • to provide information, training, and support to the individual, families, carers and, in the case of children, others involved in the child’s education, welfare, and well-being.

Anti-epileptic drugs are the mainstay of epilepsy treatment. Treatment is generally recommended once diagnosis has been confirmed and after a second seizure.6 The decision to start treatment should be made after taking into account the person’s epilepsy syndrome, prognosis, co-medication, co-morbidity, and lifestyle. Initiation of treatment should be made by the specialist after full discussion of the risks and benefits between the patient, carer and/or family as appropriate.6

Monotherapy should be used whenever possible with treatment regimens planned by the specialist.6 If the management is straightforward, continuing therapy can be prescribed by primary care as part of an agreed individual care plan (e.g. detailing drug dosage, possible side-effects, and action to be taken if seizures persist).

Monitoring of AED serum blood levels is only necessary if clinically indicated, for example, suspected drug toxicity or non-compliance.

Consideration can be given to withdrawing medication if the person is seizure free for at least 2 years. This decision needs to be made after full discussion of the risks and benefits and should be under the supervision or guidance of the specialist.6

Review of patients with epilepsy
Patients with epilepsy should be reviewed by the specialist or the GP at least once a year.6 General practitioners should refer patients for specialist advice when appropriate; for example, if seizures are frequent or uncontrolled, if female patients are planning pregnancy or are pregnant.

Figure 1: Outline care algorithm for epilepsy6

AEDs=anti-epileptic drugs

National Institute for Clinical Excellence (NICE) (2004) CG20. The epilepsies: The diagnosis and management of the epilepsies in adults and children in primary and secondary care. London: NICE. Reproduced with permission. Available from www.nice.org.uk/guidance/CG20.

Epilepsy care within the quality and outcomes framework

The introduction of the general medical services contract in 2003 recognised that GPs can make a considerable difference in the quality of epilepsy care. It provided a financial reward for achievement of quality markers in epilepsy care within the quality and outcomes framework (QOF).11 Practices can achieve a maximum of 15 points in this area (see Table 1).

Table 1: Quality and outcomes framework clinical indicators 2009/10 for epilepsy11
No. Indicator Points Payment stages
EPILEPSY 5 The practice can produce a register of patients aged 18 years and over receiving drug treatment for epilepsy 1
EPILEPSY 6 The percentage of patients age 18 years and over on drug treatment for epilepsy who have a record of seizure frequency in the previous 15 months 4 40–90%
EPILEPSY 7 The percentage of patients age 18 years and over on drug treatment for epilepsy who have a record of medication review involving the patient and/or carer in the previous 15 months 4 40–90%
EPILEPSY 8 The percentage of patients age 18 years and over on drug treatment for epilepsy who have been seizure free for the last 12 months recorded in the previous 15 months 6 40–70%
Total points 15

Implementation of the guidance in primary care

If a patient presents with suspected new onset seizures, the GP should take a focused history, taking into account information from the patient and any eyewitnesses; the main differential diagnosis is vasovagal syncope. In the case of the latter, a faint will usually occur from an upright position, have a prolonged prodrome with gradual onset of pallor and sweating, it may be precipitated by crowds, hunger, or unpleasant circumstances. If the person is laid on the ground with the feet elevated, recovery will be rapid. Beware of brief anoxic twitching particularly, if the patient is held upright after losing consciousness, this can often be confused with a seizure.

Epileptic seizures, in contrast, can occur from any posture (e.g. laid flat in bed) and can be associated with the following characteristics:7,12

  • the seizure can have a sudden onset and may have no warning or be preceded by aura (e.g. a sensation of rising nausea or abnormal smell)
  • stiffening and convulsive jerks may occur
  • recovery will generally be prolonged, with an extended period of postictal confusion
  • multiple attacks will tend to follow the same pattern (i.e. be stereotyped).

Cardiac causes of collapse can also be a differential diagnosis. A dysrhythmia may present with sudden loss of consciousness without warning and rapid recovery. A history of cardiac disease (e.g. previous myocardial infarction) in these circumstances may be highly relevant. Exercise-induced syncope may be a life-threatening sign of aortic stenosis or hypertrophic cardiomyopathy. Loss of consciousness without warning may represent other cardiac abnormalities such as long QT (a family history of sudden death being particularly relevant). Cardiac examination and an electrocardiogram will help distinguish the rare, but potentially fatal cardiac causes.13

Management of new seizures
Patients with suspected new seizures should be:14

  • encouraged to bring an eyewitness to a seizure to attend the specialist appointment
  • given advice on:
    • driving—this activity should stop pending the specialist opinion
    • safety (e.g. no cooking with chip pans, no bathing on own)
  • provided with contact numbers for the epilepsy nurse and or patient organisations (e.g. Epilepsy Action).

Annual review within primary care
A structured review of all patients with epilepsy should be organised by primary care at least once a year. This should include:

  • seizure control—frequency, nature of attacks, and any injuries from epilepsy
  • side-effects of medication
  • social issues, work, driving, minimising risk, and specific questions to identify depression
  • discussion of contraception and future plans for pregnancy for women—consider referral pre-conception and refer all pregnant patients with epilepsy for specialist advice
  • carer’s views on epilepsy and managing seizures
  • information needs (e.g. appropriate contact numbers)
  • involvement of epilepsy specialist nurses
  • need for re-referral for specialist review (e.g. poor control, consideration of medication withdrawal).

Barriers to implementing best practice for epilepsy are not only dependent on primary and secondary care provision, but also depend on patient-centred factors. Psychiatric co-morbidities such as anxiety and depression are more common in epilepsy and may influence epilepsy symptoms.15

A holistic approach to management of epilepsy and quality-of-life issues will help empower patients to be involved in making decisions about their care and to demand appropriate provision of care.

What has the guidance achieved?

In 2007, the All Party Parliamentary Group on Epilepsy published Wasted money wasted lives.16 This report highlighted serious shortfalls in the care of patients with epilepsy and made recommendations for improving service provision in line with NICE guidance. The report made the following statement ‘During the course of our inquiry it has become clear … that the case for improving epilepsy services is overwhelming. A vicious circle of social stigma, secrecy and widespread medical ignorance has led to a poor service, from which patients cannot confidently expect good treatment at a primary or secondary level. The waste of money in delivering this inadequate service is almost as appalling as the unnecessary deaths and damage to quality of life experienced by people with epilepsy.16

In January 2009, Epilepsy Action published a report from a survey of all primary care trusts (PCTs) and acute trusts in England conducted in early 2008. It found that:17

  • 49% of acute trusts do not employ an epilepsy specialist
  • over 90% of trusts fail to meet the guideline recommendation of seeing suspected new cases of epilepsy within 2 weeks—the average wait was 5–8 weeks with some patients waiting 17–24 weeks.
  • 60% of trusts and 64% of PCTs do not employ epilepsy specialist nurses.

Clearly, progress in improving quality service provision and outcomes for people with epilepsy is very slow.

What have the QOF targets achieved?

There is no doubt, however, that since the introduction of the QOF there has been renewed interest in epilepsy care in general practice. Shohet et al demonstrated that practices that achieve a high proportion of seizure-free patients have a lower rate of epilepsy related hospital admissions.18 There is also an important correlation between seizure control and quality of life in terms of physical and mental wellbeing, and ability to lead a normal and useful life—not least work and drive.

For the year 2008–2009, practices in England achieved an average of 94.7% of the available points for epilepsy care.19 Unfortunately this only goes some of the way in ensuring that quality care for epilepsy is delivered by primary care.

Suggested improvements to the QOF epilepsy indicators

There are many issues with epilepsy in the QOF; a number of changes to the epilepsy indicators have been suggested to facilitate improved quality of care.20 These changes were based on recommendations from patient representatives, specialists, and the All Party Parliamentary Group on Epilepsy. The main recommendations were to:20

  • discourage telephone reviews—there is a huge variation in the complexity of reviews taken, and face-to-face review is not currently rewarded
  • introduce a new category for:
  • patients who are not seizure free due to co-morbidity—to try to reduce the problem of high levels of exception reporting in the current seizure-free category
  • patients who are not seizure free, but who have been referred to
    the specialist sector—to encourage specialist review where appropriate
  • women of child-bearing age who are taking AEDs and who have been given information and counselling about contraception and pregnancy—to encourage appropriate review with potential high impact on quality of health care.

Educational sessions for primary care may be required to achieve these objectives, and there may also be an impact on demand for appropriate specialist provision. Although these standards are not in the QOF, they do reflect best practice.


The NHS has a long way to go in helping patients with epilepsy. In recent years there has been renewed interest in the quality of epilepsy in primary care triggered by the new general medical services contract and the QOF. General practitioners can make a difference in epilepsy care and are pivotal in providing structured quality medical care as well as a long-term source of support for their patients. A holistic approach can make a big difference to patients’ quality of life.

Commissioners have plenty of guidance on clinical priorities for providing an effective epilepsy service. There have been improvements, for example, in outpatient waiting times. However epilepsy has remained a low priority area for many trusts and this is reflected in terms of inadequate provision of epilepsy specialists, failure to provide rapid access times for new referrals, and the low level of provision of epilepsy specialist nurses.

The theme of this year’s Epilepsy Week (13–19 June) is young people with epilepsy. Raising the profile of epilepsy empowers people with the condition to demand better care from the NHS.


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  7. Scottish Intercollegiate Guidelines Network. Diagnosis and management of epilepsy in adults. SIGN 70. Edinburgh: SIGN, 2003, updated 2005. Available at: www.sign.ac.uk/guidelines/fulltext/70/index.html
  8. Scottish Intercollegiate Guidelines Network. Diagnosis and management of epilepsies in children and young people. SIGN 81. Edinburgh: SIGN, 2005. Available at: www.sign.ac.uk/guidelines/fulltext/81/index.html
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