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Epilepsy management in primary care

Henry Smithson
General Practitioner Escrick
North Yorkshire
Primary Care Lead
National Clinical Sentinel Audit of Epilepsy Deaths
Visiting Fellow in Health Science University of York

Pippa Roberts
Specialist Epilepsy Nurse
Practice Nurse
St James Medical Practice
King's Lynn

Epilepsy is a condition characterised by recurrent unprovoked seizures, and so the nature of epilepsy depends on the type of seizure. The seizures may have an underlying cause and, particularly in children, the attacks may follow a recognised pattern (syndrome).

A diagnosis of epilepsy requires identification of the type and classification of the seizure, identification of a possible underlying cause, and perhaps recognition of a specific syndrome. While epileptic seizures are unprovoked, they can have an underlying cause: for example, perinatal injury, genetic factors, infection or cerebrovascular disease. Identifying the seizure type depends on a witness and individual history and can be confirmed in some cases by electroencephalogram (EEG) recording and neuroimaging. Seizures can either start in a particular part of the brain (partial seizures) or affect both hemispheres from the outset (generalised seizures) (see Table 1). Antiepileptic drugs (AEDs) have a range of activity; some are useful for both partial and generalised seizures, while others have a specific activity.


Many nurses and doctors have not seen a seizure, but there are good descriptive accounts available.(1,2)

Identifying syndromes is important in paediatric practice, but as most children with epilepsy are managed by the paediatric services, it is of less importance in the context of primary care.

Diagnosis, investigations and referral
Diagnosis is based on a history of the episode given by the individual and any witnesses. Ask about symptoms noticed immediately before the episode, any provoking factors (fatigue, alcohol or drugs, other illness, flashing lights, fever), the circumstances at the time, family history of epilepsy, personal history of neurological insult, and previous similar episodes. We are well placed in primary care to obtain information while the episode is still fresh in people's mind. This is a crucial part of getting the diagnosis right and more important than routine investigations, which are more useful to rule out other causes of "fits, faints and funny turns". Up to 25% of cases are misdiagnosed, and once the label of "epilepsy" has been used it is difficult to remove it.(3)

The patient should be informed of the likely investigations that may be requested by secondary care. Referral should be made to a specialist with an interest in and knowledge of epilepsy. This may be a neurologist, a paediatrician, a general physician or a psychiatrist. Epilepsy services in the UK are sparse, so it is helpful for localities to define roles and responsibilities of all sections of the NHS to reduce duplication and make best use of resources.

Once the diagnosis is confirmed, management should aim to achieve control of seizures. Advice about lifestyle, reduction of factors that can stimulate seizures (particularly alcohol and fatigue) and drug treatment should be available. Patient groups provide excellent booklets for patients, families and professionals. Management planning involving patients, specialists and generalists should be encouraged.

A specialist usually commences the patient on AEDs after confirmation of the diagnosis. If there is a delay in getting an appointment, it may be helpful to discuss the case over the phone. A full review of drug therapy is beyond the scope of this article, but certain general principles apply - take specialist advice; match drug to seizure type; avoid abrupt dose or drug change; monitor choice of AED; aim for monotherapy; discuss issues of conception and contraception; increase dose to control seizures; dose ceiling determined by side-effects; reconsider diagnosis if control is poor.

Risks of epilepsy
People who develop epilepsy may suffer from a loss of self-esteem, depression and problems with education, employment and relationships. The mortality rate of people with epilepsy is about double that of the general population due to accidents, suicide and seizure-related death. An audit of epilepsy-related death (excluding suicide and accident deaths) published this year examined hundreds of deaths caused by epilepsy, and reinforces the importance of good seizure control and active monitoring of the condition.(4)

The place of primary care
Primary care can play a useful role in managing epilepsy. Research has shown that the provision of epilepsy care has been unclear, patchy and poorly recorded.(5) The demands on neurological services are ever increasing, and it has been shown that specialist clinics are more effective in meeting patient needs than busy neurology outpatients.(6) Most patients attend general practice first, suggesting that epilepsy, like other chronic diseases, should be managed predominantly in general practice.(7) One model that has proved successful is the nurse-led clinic. GPs or practice nurses can apply the general principles to consultations either opportunistically or in the clinic setting. Practices can develop protocols for the continuing management of patients with suspected or established epilepsy. Appropriately trained practice nurses with GP support are uniquely placed to provide ongoing care and act as a vital link between secondary and primary care.

Consideration of other epilepsy services(5,6,10) and care standards have led to the development of suitable protocols for epilepsy management in general and specialist practice.(7,8) They should promote fast access to nurse-led clinics. The nurse provides an immediate and available contact facility for patients, carers and health professionals. The first nurse clinic appointments should be used for information gathering - a detailed history; witness statements/seizure diary review; seizure description/ frequency; date of last seizure; investigations; diagnosis; occupation/education; and immediate safety issues, such as driving. It should also address what the patient needs to know and how we can help.

In the case of diagnosed/newly registered patients, the nurse should ask what does the patient wish to improve, and should arrange a follow-up appointment.

The second nurse clinic appointments should concentrate on the need for referrals to other agencies (eg, a social worker). It should address specific concerns and develop an individual patient care plan. The nurse should start or continue general counselling, act as a liaison as needed (eg, for appointments and results) and should arrange follow-up.

All consultations require clear and accurate documentation. This is essential for consolidating patient information, for promoting communication and for audit, which enables assessment of patient services and can reveal possible patient needs that require action.(9)

Subsequent clinic appointments should be individually tailored, providing continuity of care and meeting specific patient needs. There should be nurse follow-up,  nurse information/counselling sessions for patients and carers, and a joint GP/nurse drug therapy review.

Protocols should include the use of an agreed patient management checklist (see Table 2), to provide an inclusive foundation for individual care plans, patient knowledge and education within the clinic. There should be dialogue with patients and carers to encourage return visits with questions, maintaining a seizure diary and reporting changes in seizure pattern/general health.


The role of the dedicated general practice epilepsy clinic in supporting accurate diagnosis and continuing care is clear. Its convenience and familiarity make it a very usable service. The CSAG report promotes centres of excellence for specialist epilepsy care, and suggests that general practice clinics could be an essential part of such a service, particularly in rural areas, offering vital liaison and communication pathways.(10)

As PCTs consider strategies for epilepsy care, they are in a position to provide specialist nurse support for use within general practice, to train and support practice nurses and GPs, as well as commissioning more specialist services. In the future, nurse-led clinics in the community may act as the hub of the care wheel for patients with epilepsy. Only time will tell if this will be an improved and effective way to manage continuing epilepsy care, but the signs are encouraging.


  1. Chappell B, Crawford PM. Epilepsy at your fingertips. London: Class Publishing; 1998.
  2. Taylor MP. Managing epilepsy: a ­clinical handbook. Oxford: Blackwell Science; 2000.
  3. Chadwick D, Smith D. The ­misdiagnosis of epilepsy. [Editorial.] BMJ 2002;324:495-6.
  4. Hanna NJ, Black M, Sander JWS,et al. National Sentinel Clinical Audit of Epilepsy-Related Death: Epilepsy - death in the shadows. London: Stationery Office; 2002.
  5. Ridsdale L, Robins D, Fitzgerald A, Jeffrey S, McGee L. Epilepsy Care Evaluation Group - epilepsy ­monitoring and advice recorded: general practitioner's views, current practice and patient preferences.Br J Gen Pract 1996;46:11-14.
  6. Taylor MP, Readman S, Hague B,et al. A district epilepsy service with community based specialist liaison nurses and guidelines for shared care. Seizure 1994;3:121-7.
  7. Hall WW, Martin EEW, Smithson WH. Epilepsy: a general practice ­problem. RCGP Clinical Series. 3rd ed. London: RCGP; 1997.
  8. Scottish Intercollegiate Guidelines Network. Diagnosis and management of epilepsy in adults. Edinburgh: SIGN; 2002.
  9. Redhead K, Tasker P, Suchak K,et al. Audit of the care of patients with epilepsy in general practice.Br J Gen Pract 1996;46:731-4.
  10. Department of Health. CSAG report: services for patients with epilepsy. London: Department of Health; 2000.

British Epilepsy Association
New Anstey House
Gate Way Drive
Leeds LS19 7XY
Helpline:0808 800 5050
Epilepsy Action Scotland
48 Govan Road
Glasgow G51 1JL
T:0141 427 4911
Epilepsy Bereaved
PO Box 112
OX12 8XT
T:01235 772850
Joint Epilepsy Council
T:0131 466 7155
National Society for Epilepsy
Chalfont St Peter
Gerrards Cross
Bucks SL9 0RJ
T:01494 601400