SUDEP Action

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SUDEP Action highlights aims of its Call for Openness Campaign

SUDEP Action has highlighted the four aims of its Call for Openness Campaign which was launched last year in June 2013. The Openness campaign is aimed at raising awareness and saving lives. It stresses that people with epilepsy need to be fully informed if they are to make the right lifestyle choices to reduce their risk of SUDEP. There are around 1200 epilepsy related deaths a year in the UK and almost half of these are from Sudden Unexpected Death in Epilepsy (SUDEP), most being potentially avoidable. 

The call is for a common sense approach to alert people at risk of ways to reduce their risk of SUDEP and aims to:

  • Encourage people with epilepsy to be open about their condition
  • Encourage doctors and nurses to talk about risk including the risk of SUDEP on or soon after diagnosis
  • Encourage people with epilepsy to report their seizures accurately
  • Encourage people with epilepsy to take their medications regularly and as prescribed

Although there is much improved awareness around risk in epilepsy, the need for individualised communication about SUDEP is essential.  Communication about risk opens up an opportunity for the patient to share their thoughts and fears which can help them to make informed decisions on medicines adherence and self-management.

Openness about SUDEP is about information being given routinely as part of general epilepsy information.  Information given in a positive way early on at or following diagnosis can help people understand whether they are at any risk and what measures they can take to reduce and manage this. People prefer information and discussion with their doctors and nurses. The medical team is also best placed to make a decision to withhold or delay informing someone of their risk where there is good reason to believe that information about SUDEP is likely to cause a person real harm. 

Meanwhile, Canadian charity SUDEP Aware has applauded SUDEP Action’s Call for Openness campaign in an article published in the April 2014 Issue of the epilepsy journal, Epilepsia, entitled ‘Our Epilepsy Story’.  SUDEP Aware founders Tamzin Jeffs and Dr Elizabeth Donner said “We hugely admire the 18 year work and dedication of SUDEP Action and consider them an invaluable leader in the international call for greater openness on SUDEP.”

To sign up to the Call for Openness Campaign, organisations and individuals are welcome to email Juliet.tumeo@sudep.org.