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 on 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


In attendance, we had a wide spectrum of clinicians, policy makers, epilepsy organisations and medical professionals

               Prevent21 Summit attendees


Supported politically by MPs from across parties, including Ed Vaizey MP, Norman Lamb MP, Paula Sheriff MP and Ivan Lewis MP. Here is the address from Norman Lamb MP...



Ahead of the Summit event, BBC South featured a report with our CEO, Jane Hanna OBE, on the importance of discussing epilepy risks and regular health checks. 



Here is the Summit picture gallery. 


Outcomes and Recommendations

EB Journal Cover


In February 2020, international journal Epilepsy & Behavior have published a special supplement; ‘Prevent 21 Summit – Time to Listen. Epilepsy Mortality; Consequences & Solutions’.
It contains 12 papers with key research from this Prevent21 Summit on what can be done now to save lives.

Each research paper has been written by leading experts who participated in the first Prevent 21 Summit, including SUDEP Action’s very own Jane Hanna OBE, Karen Osland, Sammy Ashby, Tracy Cowdry and Julia Stirling. 

Read our story about this important supplement.


This special supplement is just one of the outcomes from the Summit. For more information, our Summary Report shows the outcomes and recommendations from the Summit. The Summary Report is endorsed by the All Party Group for Epilepsy and the Neurological Alliance.


PDF icon SUDEP Action Prevent21 Summit Report 2018 - Outcomes & Recommendations


What can MPs and organisations do to help?

SUDEP Action co-chair the All Party Parliamentary Group for Epilepsy (AAPGE), hosting a number of meetings and events in parliament throughout the year, campaigning for change. For more information and how to get involved, visit our APPGE webpage.


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. Share your story

My Story - is an important and powerful way for you to join our campaign. We are very experienced in supporting those who wish to share their stories and who find it helpful to know that they are part of the collective ‘voice. Personal stories help to bond and encourage those that are bereaved. It’s also a wonderful way to celebrate the life of a loved one.
Stories can be shared on our website, social media, newsletters and on a more global scale, via SUDEP Global Conversation.
Contact [email protected] for more details on how you could be involved.


Although writing about your loved one and your experiences can be therapeutic, we also understand that it can bring up painful emotions and memories.
If at any point you feel you would like to contact the support team, please email: [email protected] or give us a call on 01235 772852.


Prevent21 Summit theme