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NICE guidance on epilepsy recommends specialist diagnosis

BMJ 2004; 329 doi: https://doi.org/10.1136/bmj.329.7473.995-a (Published 28 October 2004) Cite this as: BMJ 2004;329:995
  1. Susan Mayor
  1. London

    All patients suspected of having seizures should be seen urgently by a specialist for diagnosis and be given individually tailored treatment, recommends a new guideline published this week. The guideline is designed to improve the care in the NHS of children and adults in England and Wales with epilepsy and to reduce the number of sudden deaths associated with epilepsy.

    The guideline was published by the National Institute for Clinical Excellence (NICE), which provides national guidance on treatments and care for the NHS in England and Wales, and the National Collaborating Centre for Primary Care.

    It complements recent guidance from NICE on the use of newer antiepileptic drugs and is designed to achieve accurate and timely diagnosis, improve communication, and provide regular reviews of treatments. The new guideline recommends that anyone with recent onset of suspected seizures should be seen urgently by a specialist to ensure precise and early diagnosis and initiation of treatment.

    Drug treatment should be tailored to type of seizures, epilepsy syndrome, other drugs being taken, comorbidity, and individual lifestyle factors and preferences.

    Individuals with epilepsy and their carers should be partners in all decisions about their health care, the guideline suggests. To facilitate this everyone with epilepsy should have a comprehensive care plan that is agreed between the patients, their family or carers, and primary and secondary care doctors.

    They should have regular, structured review at least yearly. Patients should be referred to a tertiary service as soon as possible if their seizures are not controlled or there is uncertainty about their diagnosis or treatment failure.

    The evidence base for the guideline included an audit across the United Kingdom of sudden unexplained death in epilepsy that was carried out in 2002, led by the charity Epilepsy Bereaved and funded by NICE. Nearly half of the 1000 deaths that occur in the United Kingdom each year as a result of epilepsy are sudden and unexpected.

    The audit found that 59% of deaths among children and 39% of deaths among adults could potentially, or probably, be avoided. The main risk factor was ongoing seizures.

    Jane Hanna, director of Epilepsy Bereaved and a member of the guideline development group, said: “We hope that these guidelines will be put into practice at a local level so that people with epilepsy have a choice to be seizure free and unnecessary deaths are avoided.”

    Professor John Duncan, professor of neurology at the National Hospital for Neurology and Neurosurgery, London, and a member of the guideline development group, said: “Of particular importance are the needs to establish a correct diagnosis and, if treatment is unsuccessful, to keep the diagnosis under critical review and to consider referral for a further specialist opinion, timely and accurate information provision, and the integration of medical and social care.”

    Epilepsy: The Diagnosis and Management of Epilepsy in Children and Adults can be found at http://www.nice.org.uk/