SUDEP Action

Making every epilepsy death count
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Sudden Child Deaths: The Search for Answers

 

SUDEP Action was disappointed with aspects of the BBC Panorama programme Sudden Child Deaths: The Search for Answers.

Whilst exploring the potential reasons and causes for Sudden Unexpected Death in Children (SUDC), the programme made no mention of Sudden Unexpected Death in Epilepsy (SUDEP). We know that some sudden unexpected deaths in children will be due to undiagnosed epilepsy (rather than other seizure-related causes). As a charity, we support the families and loved ones of people who have died due to epilepsy or suspected epilepsy. There is already an established body of research that has developed over the past two decades, yet the programme did not recognise or address this.

For many people bereaved by epilepsy, last night’s programme will have been a shocking and a painful reminder of the terrible trauma and devastation they experienced following the death of a  loved one. While it is vital awareness of such issues are raised, it is also important to consider the impact on the bereaved community with proper signposting to places of support. This was sadly missing in the Panorama programme.

  • For anyone whose loved one experienced seizures before their death, whether or not epilepsy was diagnosed – please know our bereavement team can assist with telephone support, counselling and help through inquests and investigations. With nearly three decades of experience, we may be able to answer the questions you have.
    Contact our team on 01235 772852 or email us at
    [email protected]

     
  • We already know that many SUDEP and epilepsy related deaths are preventable with greater awareness and support to reduce risks. You can find out more about SUDEP here  https://sudep.org/sudden-unexpected-death-epilepsy-sudep
     
  • It is vital that anyone experiencing or caring for someone who has seizures - who may have concerns after watching the Panorama programme – is accurately assessed for epilepsy, so they can take action to reduce risks.
    You can find out more about reducing epilepsy risks here 
    https://sudep.org/managing-your-seizures

     
  • Our free EpSMon app can help too  https://sudep.org/epilepsy-self-monitor