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Epilepsy in primary care: what we should be doing?

Annette Russell
RGN ENB45 ENB998 C&G730
Assistant Director in Clinical Specialism
National Society for Epilepsy

The most recent NHS initiative is the NICE Clinical Guidelines for the Management of Epilepsy in Adults and Children.(1) Among other recommendations, this highlighted the need for people with epilepsy to have a structured review at least annually.
The importance of regular reviews has been acknowledged in the new GMS contract, which include targets and incentives for effective management of epilepsy in primary care. Practices can earn up to 16 quality points for epilepsy care. Practices must first produce a register of patients who are receiving drug treatment for epilepsy, which is worth 2 points. The other targets are:

  • To provide a record (within 15 months of previous medical review) of the seizure frequency of patients on drug treatment for epilepsy who are aged 16 and over - 4 points.
  • To provide a record (within 15 months of previous medical review) of ­the medication review of patients on drug treatment for epilepsy who are aged 16 and over - 4 points.
  • To provide a record of 12 months of seizure ­freedom, recorded in the last 15 months, in patients on drug treatment for epilepsy who are aged 16 and over - 6 points.

As Assistant Director of Clinical Specialism at the National Society for Epilepsy (NSE) and an epilepsy specialist nurse with more than 30 years' experience, I firmly believe that the first stage in achieving these targets - and complying with the NICE guidelines - could be made easier by an initial audit of patients.
I envisage that much of the work of auditing patients' records will fall to the practice nurse. However, this does not have to be an onerous task, and there are bound to be similarities and even overlaps in audits undertaken for other conditions.
I recently carried out an audit of epilepsy services in 12 GP practices within a 25-mile radius of NSE's Buckinghamshire headquarters.(3)
To undertake the audit, patient records were coded and identified on the basis of repeat prescriptions of antiepileptic drugs (AEDs). These records were then scrutinised to assess whether the patients were being prescribed AEDs for epilepsy rather than for conditions such as pain relief, depression or glaucoma.
A total of 608 records had ­documented evidence of a diagnosis of epilepsy: 59% were shown as taking one AED; 26% were taking more than one AED; and 14% had stopped taking AEDs.
The following audit criteria were then applied to determine the level of service and information provision:

  • Number of patients per practice.
  • Number of patients with epilepsy.
  • Age and gender of people with epilepsy.
  • Age at onset of epilepsy.
  • Life event before onset.
  • Any other major diagnosis.
  • Investigations.
  • Seizure descriptions - classification and frequency.
  • Number and type of AEDs.
  • Discussions relating to side-effects of AEDs, ­preconceptual counselling, effects on ­contraception and pregnancy, lifestyle issues (such as driving regulations and alcohol consumption) and safety (in the home and leisure activities).
  • Medical supervision - how often patients had been seen by their GP and/or an epilepsy ­specialist.

Epilepsy has a high rate of misdiagnosis. In making a clear diagnosis it is important that a description of seizure activity is gained, including the pattern, frequency and duration of episodes. Primary care practitioners are well placed to gain an accurate account of the initial episode and, with a careful history, can then decide whether the diagnosis is sufficiently likely to be epilepsy to make a referral worthwhile. In the case of the audit described above, seizure descriptions were documented for only 46% of cases, and seizure frequency for 55%.
Investigations such as EEG (electroencephalogram), magnetic resonance imaging (MRI) scans and computed tomography (CT) scans may sometimes be commissioned by the GP, and sometimes by the specialist. Decisions about which should be undertaken before referral are best made locally, between specialists and the referring GP. In this case, documented evidence indicated that 32% had had an EEG, 28% had had an MRI scan, 38% a CT scan, and 9%  both MRI and CT scans. Forty-three per cent had had no imaging.

Regular reviews
The recently published NICE guidelines have highlighted the importance of an annual review in the management of people with epilepsy. In this audit, 38% had seen their primary care team for epilepsy review within 15 months of the date of the audit, while 22% appeared never to have seen a GP for an epilepsy review. Of those who had never seen a GP or who had seen a GP for epilepsy review more than 15 months before the audit, 82% had seen a GP for another reason in the previous 15 months.
The importance of referring patients to secondary or tertiary care is also highlighted as a priority by NICE. In the case of this audit, documentation revealed evidence that just 34% had been seen by a general specialist in the 15 months before the audit, while only 14% had been seen by an epilepsy specialist. Altogether, 37% had been seen by a specialist in the 15 months before the audit.
Women and epilepsy
Sixteen per cent of cases audited were women between the ages of 16 and 45 years, a group deserving particular attention because of the possible side-effects of epilepsy and AEDs on contraception and pregnancy. Of these, 35% had received information about contraception, and 28% and 27% respectively had documented advice about preconceptual and pregnancy issues.
With input from NSE clinical staff, the Royal Society of Medicine has recently published Primary Care Guidelines for the Management of Females with Epilepsy,(2) aimed at ensuring that primary care practitioners are able to deal with the complex issues surrounding epilepsy in women - in particular those who may become pregnant. It is estimated that three to four pregnancies in every thousand occur to women with epilepsy.
The guidelines highlight a number of key practice points unique to caring for women with epilepsy, such as the need to be proactive in anticipating the changing needs and circumstances of female patients with epilepsy.   

Lifestyle issues
The difficult task in providing adequate information about safety and leisure is not unique to epilepsy. There is a lot of information to convey, about both the condition itself and its consequences.
So much of it is complicated, and little may be absorbed when the patient and relatives are having to take in the impact of the diagnosis of epilepsy. However, it is vital that information and advice are given to the patient.
The audit indicated that only 26% of patients had been given advice about lifestyle issues such as safety, leisure and alcohol consumption, and only 12% about two or more issues.(4) Bathing and driving are two of the most significant issues that should be discussed. However, no documented evidence of advice about bathing was found in the audited records, and only 44% of case notes of those aged 16 and over revealed documented evidence that patients had been given advice about driving.

Audit resource pack
To enable practices to conduct an audit of epilepsy patients, GlaxoSmithKline has developed an "Epilepsy Resource Pack" with the help of Epilepsy Action and Epilepsy Scotland. The pack includes an information booklet and toolkit designed to facilitate:

  • The identification of patients with epilepsy.
  • The systematic review of all patients with epilepsy.
  • The identification and effective referral of patients requiring specialist review.
  • The effective recording of data in order to fulfil the requirement of the GMS contract and improve epilepsy management in the long term.

If you wish to get a resource pack, email

Study days and training
To meet the demand from healthcare professionals looking to broaden their knowledge of caring for people with epilepsy, a unique range of courses and study days have been developed by the NSE.
In partnership with Buckinghamshire Chilterns University College, NSE has developed a range of courses in epilepsy care aimed specifically at the nursing profession.
In addition, working with primary care trusts, NSE undertakes audits to help identify:

  • Guidelines for the clinical management of ­epilepsy.
  • Potential changes to exiting services.
  • Shortfalls in current service provision.

The NSE has a website dedicated to health professionals- -and the NSE's main telephone number is 01494 601300.


  1. NICE. Clinical guidelines for the management of epilepsy in adults and children. London: NICE; 2004. Available from URL:
  2. Duncan S, Fairey A, Gomersall S, et al. Primary care guidelines for the management of females with epilepsy. London: Royal Society of Medicine Press; 2004.
  3. Russell A. Audit of epilepsy services. Epilepsy Rev 2003;Spring:9.
  4. National Society for Epilepsy. What we do - The National Society for Epilepsy Leaflet. London:?NSE; 2003.