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Epilepsy - Management
How should I manage someone with suspected epilepsy?

  • Urgently refer all people suspected of having a first epileptic seizure to a specialist with training and expertise in epilepsy, to establish the diagnosis. Ensure:
    • They are seen within 14 days of referral.
    • The referral letter includes a detailed description of the seizure from a first-hand witness (if available), with contact details of the witness.
  • Advise the family or carers of the person with suspected epilepsy:
    • How to recognize and manage a seizure.
    • To record further episodes of possible seizures. This can be done using video (which may be available on a mobile phone) or in a diary.
  • Advise the person with suspected epilepsy:
    • To stop driving while waiting to see the specialist, and to avoid potentially dangerous work or leisure activities. In particular, they should avoid swimming, and ensure bathing is undertaken with supervision to avoid the risk of drowning.
    • To take a witness of the seizure to the first hospital appointment if possible.
    • To contact their GP if further episodes occur while they are waiting to see the specialist. The GP should seek specialist advice if they are concerned about the person having recurrent episodes of suspected seizures.
  • Inform the person about:
    • What happens during an epileptic seizure.
    • What to expect when they see the specialist.
  • Provide written information to support verbal advice.
Basis for recommendation
  • The recommendation to refer for specialist confirmation of a diagnosis of epilepsy is based on expert opinion supported by limited evidence from two observational studies (n = 263 and n = 230) considered by the National Institute for Health and Clinical Excellence [NICE, 2004c]. These studies found that when people with an established diagnosis of epilepsy were reviewed by experts:
    • Approximately 25% of people did not, in fact, have epilepsy.
    • The highest rate of misdiagnosis occurred in people diagnosed by generalists.
  • The recommendations to ensure that adequate verbal and written advice is provided for people with suspected epilepsy is based on expert opinion [NICE, 2004c; NHS Newcastle et al, 2008].

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