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SUDEP discussions with patients and families
  1. John Paul Leach
  1. Correspondence to John Paul Leach, Southern General Hospital, Institute for Neurology, Glasgow G51 4TF, UK; JohnPaul. Leach{at}sgh.scot.nhs.uk

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Introduction

The Scottish legal system has published two separate verdicts emphasising the need for information on sudden unexplained death in epilepsy (SUDEP) to be discussed with patients at the earliest opportunity (box 1). This is also an increasing concern across the world as evidenced by the recent International Epilepsy Congress (a joint congress with representation from medical professionals and the voluntary sector through the International League Against Epilepsy and the International Bureau for Epilepsy) devoting two large plenary sessions to this issue, including its opening Presidential Symposium.

Box 1 What is a Fatal Accident Inquiry?

  • The Scottish legal system provides a framework for a fatal accident inquiry (FAI) as an investigation into death, similar to the English coroner's inquiry. An FAI is not a criminal investigation, but can be requested by anyone who feels that an inquiry into a death may yield lessons for the public good. A sheriff (a senior salaried lawyer—equivalent to a county court judge) presides over a FAI, hearing eyewitness and expert witness evidence, allowing him or her to make recommendations on future policy or conduct. In Scotland, our politicians and lawmakers take such verdicts seriously.

  • In the last 9 years, there have been two FAIs into epilepsy-related deaths, most recently in August 2011 (see ‘Further reading’). This inquiry's recommendations—into two separate deaths—were similar, though stronger than Sheriff Taylor's in 2003. There may be some disquiet about evidence from international epileptologists being used to ‘show up’ practice in a district general hospital neurology clinic, but it can be argued that recent deliberations provided momentum for positive investment in our neurology provision.

The recommendation with the greatest impact on neurological practice, which came with especially strong words, was on the provision of information about SUDEP at an early stage after the diagnosis. Neurologists in Scotland and elsewhere have been uncomfortable with this. Do all …

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