1.1 The need for a guideline

In Scotland there are 20,000 - 40,000 people with active epilepsy and there will be between 2,000 and 3,500 new diagnoses each year.¹ As it is a common condition, and the number of epilepsy specialists is very small, many people with epilepsy have been diagnosed and treated by non-specialists in both primary and secondary care. There is evidence that management can sometimes be sub-optimal.^{2, 3} Areas of specific concern include initial diagnosis, drug treatment, management of pregnant women with epilepsy and the provision of patient information. Up to a quarter of patients referred for specialist management of apparent drug-resistant epilepsy do not have epilepsy at all. Antiepileptic drugs (AEDs) are not always chosen and used appropriately by clinicians. It is likely that the incidence of sudden unexpected death in epilepsy could be reduced if antiepileptic treatment was always optimised. There is room for improvement in the management of status epilepticus and in the care and advice provided for women with epilepsy before and during pregnancy. People with epilepsy often report inadequate provision of information and advice. There remains considerable scope for the development of better epilepsy services in both primary and secondary care.

Since publication of the previous SIGN guideline on epilepsy in 1997 there have been significant developments in the diagnosis and management of the condition. Three new AEDs have been licensed. The number of epilepsy specialist nurses has greatly increased. This guideline review will include new sections on the management of status epilepticus, non-pharmacological treatments and issues relating to contraception and pregnancy.

It is hoped that this guideline will contribute to continued improvement in the diagnosis and management of epilepsy in Scotland.

1.2 Remit of the guideline

This guideline provides evidence based recommendations on the diagnosis and treatment of epilepsy. The section on treatment gives broad recommendations on initial AED treatment, management of drug-resistant epilepsy, management of status epilepticus, management of provoked seizures and the management of people with learning disability and epilepsy.

The remaining sections deal with issues relating to contraception, pregnancy and the menopause, models of care for epilepsy, audit of epilepsy care and provision of information for patients and carers. It is beyond the remit of the guideline to provide a full detailed discussion of differential diagnosis.

Epilepsy in the elderly is addressed only indirectly. Other text exists detailing the management of epilepsy in the elderly and after stroke.⁴

The guideline will be of interest to all health professionals in primary and secondary care involved in the management of people with epilepsy, including general practitioners, practice nurses, epilepsy specialist nurses, general physicians, A&E specialists, neurologists and obstetricians. It will also be of interest to those commissioning epilepsy services, public health physicians, pharmacists, social work staff, carers and relatives of people with epilepsy and to people with epilepsy themselves.

1.3 Statement of intent

This guideline is not intended to be construed or to serve as a standard of medical care. Standards of care are determined on the basis of all clinical data available for an individual case and are subject to change as scientific knowledge and technology advance and patterns of care evolve. These parameters of practice should be considered guidelines only. Adherence to them will not ensure a successful outcome in every case, nor should they be construed as including all proper methods of care or excluding other acceptable methods of care aimed at the same results. The ultimate judgement regarding a particular clinical procedure or treatment plan must be made by the doctor, following discussion of the options with the patient, in light of the diagnostic and treatment choices available. However, it is advised that significant departures from the national guideline or any local guidelines derived from it should be fully documented in the patient’s case notes at the time the relevant decision is taken.

1.4 Review and updating

This guideline was issued in 2003 and will be considered for review as new evidence becomes available. Any updates to the guideline in the interim period will be noted on the SIGN website: www.sign.ac.uk