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An overview of epilepsy for nurses in primary care

Over the last few decades, HIV/AIDS has been grabbing health headlines capturing the public's attention. By contrast, epilepsy has had much less exposure and is widely misunderstood, despite having a much higher incidence and prevalence with a devastating impact on the lives of patients and their families. Every year 1,000 people in the UK die of epilepsy-related causes. Of those deaths, 370 are young adults or children, and 400 are avoidable. Some common misconceptions about epilepsy include:

  • Epilepsy is "catching" or contagious (in some African states they still believe this to be true).
  • Epilepsy is a demonic disease - the "epileptic fit" constitutes a bad omen.
  • A lollipop stick or spoon should be placed in the mouth of someone having a seizure. This is a dangerous thing to do for both patient and executor and could result in serious injury to both.

Epilepsy has been recorded as far back as 400BC.(2) Derived from the Greek word "epilepsia", meaning to seize or attack, it is not actually a single condition. There are about 30 different epileptic syndromes and over 38 different seizure types. It is therefore more correct to talk about "the epilepsies".
Several famous people thought to have had epilepsy include Alexander the Great, Joan of Arc, Julius Caesar, Handel, Van Gogh and Socrates. Until the twentieth century it was seen as a spiritual phenomenon. The Bible refers to people being possessed by the devil and Christ casting out demons. The Gospel of St Mark relates the story about "the healing of the boy with an evil spirit", giving a vivid picture of a tonic-clonic seizure and its after-effects.(3) To this day, ignorance is the main reason for significant social stigma and discrimination against people with epilepsy.
Epilepsy is a tendency to experience recurrent epileptic seizures. It is the most common serious neurological disorder and for some people it is a chronic condition.(4) One in 20 people will have an epileptic seizure at some time in their life. One in 131 people in the UK have epilepsy, and approximately 75 people a day in the UK are diagnosed as having epilepsy (27,400 per year).

Most people associate epilepsy with major convulsions but it is a much more complex condition.
The epilepsies can be divided into three groups: 

  • Symptomatic - a cause is found.
  • Idiopathic - no cause is found, but a genetic link may be suspected.
  • Cryptogenic - no structural abnormality is found on magnetic resonance imaging but is suspected, eg, hypoxic brain damage or scarring.

The International League Against Epilepsy Classification 1981 (ILAE) classifies seizures into two categories, partial (or focal) and generalised seizures (see Table 1).


How is epilepsy diagnosed?
Diagnosis can be a lengthy process as there are many disorders involving alteration of consciousness that may sometimes be confused with epileptic seizures. The most common in adults are syncope, panic attacks, hyperventilation, migraine or transient ischaemic attacks. The diagnosis is essentially clinical. However, one of the most important contributions to a clear diagnosis is a firsthand account of what actually happened during the episode, both from a reliable witness and from the person who experienced it.
Investigations such as EEG (electroencephalogram), ambulatory EEG monitoring, video telemetry and magnetic resonance imaging (MRI) can increase diagnostic accuracy and clarify the seizure type. Most importantly they can identify the cause of the seizures.
Some people only experience a single seizure in their lifetime; this would not constitute a diagnosis of epilepsy or treatment.
The National Institute for Health and Clinical Excellence (NICE) guidelines recommend that "all individuals with a recent onset suspected seizure should be seen urgently by a specialist".(5) Primary care nurses have an important role to play in encouraging onward referral.
Diagnosis should not be made lightly as the consequences could have significant impact on the patient. Loss of a driving licence could have a devastating effect on their lives. If a person has been completely seizure-free for one year and meets all other normal requirements, it is possible to apply for a licence. If a person only has seizures when they are asleep and this pattern has been established over a three-year period, a licence can be granted. Driving legislation is constantly changing, and it is advisable to check with the DVLA when applying for a licence.

The aim is to find the most effective drug for the type of epilepsy, which is also suitable for the patient. In partnership with the patient, the doctor or neurologist will usually recommend antiepileptic drug (AED) treatment. A total of 60-70% of patients receiving AEDs will achieve total seizure freedom. For some patients with drug-resistant epilepsy the law of diminishing returns may require patient and doctor to accept the persistence of some seizures once a range of treatments has been tried. Adequacy of seizure control must be balanced with optimal quality of life.(6)
The general rule in prescribing any AED is "start low and go slow". If the first drug does not control seizures an alternative drug should be titrated slowly without tapering the first. If there is a good response, then consideration may be given to tapering the original drug allowing for an overlap.
Some patients need a combination of two or more drugs to control their epilepsy as unfortunately they experience seizures that are resistant to medication. These patients can often benefit from a referral to a specialist epilepsy assessment service.
It is vital that the patient takes their drugs according to the prescribed regimen and remains on the same generic brand as slight variations in the preparation of the same drug from different suppliers could lead to breakthrough seizures.
Therapeutic drug monitoring of AEDs is useful for assessment of adherence and toxicity, and is done by a simple blood test. It is beneficial for patients with communication difficulties or learning disabilities, and who are unable to describe possible side-effects.
Epilepsy in women deserves particular attention because of the effects of epilepsy and AEDs on contraception and pregnancy. The primary care nurse needs to be very familiar with these issues. Patients should be offered comprehensive preconceptual counselling soon after diagnosis and well in advance of a pregnancy.7 The importance of offering this advice and information cannot be underestimated. Further information on the current best treatment of epilepsy in children and adults can be found in the guidance issued by NICE.

Role of the primary care nurse
Since the introduction of the GMS contract primary care nurses are in a unique position to proactively audit and review patients with epilepsy. The GMS contract includes targets and incentives for the effective management of epilepsy in primary care. Practices can earn up to 16 quality points for epilepsy care and GPs have to produce a register of patients who are receiving drug treatment for epilepsy. The other targets are:

  • To provide a record of seizure frequency of patients aged 16 and over on drug treatment for epilepsy.
  • To provide a record of medication review of patients aged 16 and over on drug treatment for epilepsy.
  • To provide a record of 12 months of seizure freedom, recorded in last 15 months, in patients aged 16 and over on drug treatment for epilepsy.

These targets are seen as a step in the right direction for improved services in epilepsy in primary care. Nurses can play a crucial role in supporting new and existing patients with epilepsy, often being the first point of contact.(8) The level of input from the nurse may differ between practices as some are not involved in the management of epilepsy. Improvement within the practice could be achieved by establishing a nominated person. The nurse should develop close links with the local epilepsy nurse specialist (ENS). Additionally, they will need to work in liaison with other primary care nurses working in the community, eg, school nurses, community midwives, community psychiatric nurses, learning disability nurses and health visitors. All have important roles to play in managing and supporting patients with epilepsy. The continuous monitoring of the patient with epilepsy is key to avoiding the problem of conditions being treated in isolation. Having one person coordinating the care is good practice and follows the model based on primary care staff having access to a clinical nurse specialist in epilepsy for advice and support. The specialist nurse may give advice or obtain it from the neurologist thus speeding up the care process and keeping patients out of hospital.
In order to effectively support patients with epilepsy and provide consistent care and communication between primary and secondary care the following protocols will be useful:

Criteria for seeing newly diagnosed patient

  1. Having established a diagnosis of epilepsy check that the seizure description/descriptions from patient and witness has not changed from previous records. If any changes obtain written description from both patient and witness of all seizure types.
  2. Medication - record all medication, doses and times taken.
  3. Discuss (and record) with the patient the importance of compliance (failure to take AEDs regularly or missed doses may result in exacerbation of seizures, which is potentially life threatening).
  4. Inform patient of entitlement to free prescriptions.
  5. Discuss the importance of recording all seizures. Encourage use of seizure diary.
  6. Check that initial advice has been given to patient (practice nurses may have agreed checklist with ENS). Record, give or obtain advice on areas not covered. Initial advice should include facts about: education, employment, driving, safety in the home, holiday advice, sport and leisure, contraception and pregnancy where appropriate.
  7. Make sure you have all contact details of patient and carer.
  8. Decide whether patient to be reviewed by epilepsy nurse.
  9. Arrange review appointment with patient.

Criteria for patients with nonproblematic epilepsy

  1. These patients may only need to be seen annually to review and record seizures. If seizure-free, record date of last seizure and repeat this for all seizure types.
  2. Check all medication (against current prescriptions), any changes of dose, drug name (brand or generic) and side-effects.
  3. Check if any change in patient's circumstances that may require further advice and record.
  4. Female patients may require advice on contraception and effect of AEDs on combined oral contraception pill. Preconceptual advice may be necessary for those women planning a pregnancy. Appointment with GP and neurologist to review AEDs should be made.
  5. Check if children have problems at school to do with epilepsy and for those in higher education or employment if problematic.
  6. Book next review appointment.

Criteria for patients with problematic epilepsy
These patients should be reviewed regularly by their GP and neurologist. This could be three-monthly or six-monthly depending on the issues and severity of their epilepsy. It is important that the practice nurse and GP are fully appraised of all information to aid with consistent care and communication.

Epilepsy is a challenge to all of us, but can be managed.  Even the smallest changes to your practice will improve the outcomes for your patients.
Realise your limitations. You may not have all the answers just know where to find them. Greg Rogers, a GP with a special interest in epilepsy (GPSWI), firmly believes that the "natural progression for epilepsy nursing in primary care is for epilepsy clinics to be developed, following a similar template to the chronic disease clinics now relatively common for diabetes and asthma."(9)
The primary care nurse can influence and change attitudes that have stigmatised this condition. As a result, patients with epilepsy will be given greater opportunities to lead more fulfilled lives.
There is a wealth of information available on epilepsy websites and additional support and advice on any topic can be obtained from the National Society for Epilepsy (see Resources).


  1. Joint Epilepsy Council. Epilepsy prevalence, incidence and other statistics. Leeds: JEC; 2005.
  2. Baddeley L, Ellis S. Epilepsy. A team approach to effective management. Oxford: Elsevier Books; 2002.
  3. Holy Bible. Gospel of St Mark 9, 16-29.
  4. Shorvon S. Definitions and classifications. In: Shorvon S, editor. Handbook of epilepsy treatment. Oxford: Blackwell Science; 2002.
  5. National Institute for Clinical Excellence (NICE). Available from:
  6. Scottish Intercollegiate Guidelines Network.Management of drug resistant epilepsy, diagnosis and management of epilepsy in adults: a national clinical guideline. Edinburgh: SIGN; 2003. Available from:
  7. Duncan S, Fairey A, Gomersall S, et al. Primary care guidelines for the management of females with epilepsy. London: RSM Press; 2004.
  8. Department of Health. Clinical Standards Advisory Group (CSAG). Services for patients with epilepsy.Report. London: HMSO; 1999.
  9. East Kent Health Authority Primary Care Clinical Effectiveness (Advanced PRICCE). Standards for treatment of epilepsy. 2002.

National Society for Epilepsy
Chesham Lane
Chalfont St Peter
Bucks SL9 0RJ
Helpline: 01494 601400
Epilepsy Action
Helpline: 0808 800 5050
UK Epilepsy and Pregnancy Register
Helpline: 0800 389 1248
National Institute for Health and Clinical Effectiveness (NICE)