SUDEP Action

Making every epilepsy death count
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SUDEP Action's Prevent21 Summit

 Summit attendees   

SUDEP Action held the first national Prevent21 Summit last weekend (2-3 November 2018), to tackle urgent issue of rising epilepsy deaths.

Over 70 representatives across health, political, educational and allied epilepsy organisations, gathered for the two-day event at Corpus Christi College, Oxford.

21 people die every week in the UK from an epilepsy related death and reports show that 42% of these deaths are potentially avoidable with things such as improved access to services and information, and better risk management.

The Prevent21 Summit enabled key UK influencers and policy-makers to meet, discuss and find ways of collaboration to help prevent this needless loss of life. Poignantly highlighted by the bereaved supporter community of SUDEP Action, emphasised the devastation and crucial need for urgent action.

Prevent21 Summit


 The aims of the 2018 Prevent21 Summit were to:

  1. Highlight learnings on need, gaps and progress in relation to epilepsy deaths
  2. Explore key recommendations from panels and summit participants
  3. Provide opportunities for multi-stakeholder collaboration to tackle epilepsy deaths


The event agenda - 

Prevent21 Summit


In attendance, we had a wide spectrum of clinicians, policy makers, epilepsy organisations and medical professionals. Just to name a few:

Epilepsy Ireland    NHS EnglandEpilepsy Research UK Young Epilepsy  Epilepsy ActionAPPG  Ministry of Justice  ABN  Good Grief  ILAE


Next steps.........

The outcomes from the Summit will be published in a special supplement in the Journal 'Epilepsy and Behaviour', following the event.

Updates on the outcomes and videos will be released in due course.

For now you can view the picture gallery here. 


What can supporters do to help?

1. 1000voices

The voices of the bereaved community are vital at events like the Summit. If you would like to be part of those voices, why not get involved with our 1000voices project?

Every epilepsy death does count, so please add your voice and help us to be heard. 


2. All Party Parliamentary Group (APPG)

SUDEP Action will be presenting outcomes from the Summit and why action needs to be taken to tackle epilepsy deaths at the next All Party Parliamentary Group for Epilepsy, chaired by Paula Sherriff MP & supported by Epilepsy Action (APPG Secretariat).  
We need as many MPs there as possible so please contact your MP about the event!


Key details to tell your MP (you could copy and paste the below into an email so they have the hyperlinks for their information):

  •          The meeting is on the 28th November 2018 (2-4pm) in Committee Room 20, House of Commons
  •          Dr Paul Morrish, Consultant Neurologist, will present on the recent Public Health England Report
  •          Jane Hanna OBE, CEO of SUDEP Action, will give an overview of the UK Prevent21 Summit – the first dedicated event of its kind in the UK since the 1996 workshop on defining SUDEP.
  •          Professor Mike Kerr, Professor of Learning Disability Psychiatry, will share the Summit outcomes & recommendations to tackle epilepsy deaths.
  •          Attach the MP Summary document - which has the key issues surrounding epilepsy-related deaths and the work of the Charity
  •          Those attending will then get the opportunity to discuss next steps & how can the epilepsy community work together to save lives.

Email to let us know you’ve contacted your MP!



Prevent21 Summit theme