SUDEP Action, registered charity 1164250 (England & Wales), SC047223 (Scotland).

1. Reducing Epilepsy Related Deaths All Party Parliamentary Group for Epilepsy 28th November 2018 #Prevent21Summit SUDEP Action, registered charity 1164250 (England & Wales), SC047223 (Scotland). Epilepsy Bereaved (founded 1995) is part of SUDEP Action. sudep.org

2. Professor Mike Kerr Professor of Learning Disability PsychiatryCardiff University & Swansea University SUDEP Action’s Prevent 21 Summit On Tackling Epilepsy Deaths: What can we do? sudep.org SUDEP Action’s Prevent21 Summit on Tackling Epilepsy Deaths – 2/3rd November 2018

3. Collaboration workshop: What can be done to help prevent future deaths? • Following the presentations a collaboration workshop was held • In groups attendees focused on what could be done to tackle key themes which came out of the presentations & discussion around them: For each theme, the ACTIONS and OUTCOMES were then prioritised by ranking ‘EASE OF IMPLEMENTATION’ and ‘IMPACT’: sudep.org SUDEP Action’s Prevent21 Summit on Tackling Epilepsy Deaths – 2/3rd November 2018

4. Prevent21 Summit Recommendations sudep.org SUDEP Action’s Prevent21 Summit on Tackling Epilepsy Deaths – 2/3rd November 2018

5. Prevent21 Summit Recommendations sudep.org SUDEP Action’s Prevent21 Summit on Tackling Epilepsy Deaths – 2/3rd November 2018

6. Prevent21 Summit Recommendations sudep.org SUDEP Action’s Prevent21 Summit on Tackling Epilepsy Deaths – 2/3rd November 2018

7. Prevent21 Summit Recommendations sudep.org SUDEP Action’s Prevent21 Summit on Tackling Epilepsy Deaths – 2/3rd November 2018

8. Prevent21 Summit Recommendations sudep.org SUDEP Action’s Prevent21 Summit on Tackling Epilepsy Deaths – 2/3rd November 2018

9. Questions? sudep.org SUDEP Action’s Prevent21 Summit on Tackling Epilepsy Deaths – 2/3rd November 2018

10. Next steps: What is already happening as a result of the Summit to tackle epilepsy deaths? • Prevent21 Summit Recommendations Being shared with supportive organisations & policy makers • Epilepsy & Behaviour Journal Supplement Can MPs & supportive organisationshelp circulate? • Letter to Health Select Committee asking for an inquiry into epilepsy-related deaths sudep.org SUDEP Action’s Prevent21 Summit on Tackling Epilepsy Deaths – 2/3rd November 2018

11. Next steps: What is already happening as a result of the Summit to tackle epilepsy deaths? • A series of Parliamentary Questions to be tabledEG: Who is the Minister responsible for Epilepsy? Will Neurology / Epilepsy be prioritised in the upcoming NHS 10-year plan? • APPGE to seek/push for a meeting with Secretary of State for Health and Social Care To highlight the Summit recommendations & the need for Gov. to meet with the bereaved community and support those tackling epilepsy deaths. • Epilepsy-related deaths to become a standing APPGE Agenda Item With SUDEP Action updating the APPGE on work relating to Epilepsy-related deaths at future APPGE meetings – coordinating with other Epilepsy organisations, supportive MPs and APPGE Chair in-between meetings to progress actions and achieve outcomes sudep.org SUDEP Action’s Prevent21 Summit on Tackling Epilepsy Deaths – 2/3rd November 2018

12. Next steps: How can the epilepsy community work together to save lives? sudep.org SUDEP Action’s Prevent21 Summit on Tackling Epilepsy Deaths – 2/3rd November 2018

13. Thank You For more information or if you’d like to support this work moving forward, contact Sammy Ashby: samantha.ashby@sudep.org #Prevent21Summit sudep.org SUDEP Action’s Prevent21 Summit on Tackling Epilepsy Deaths – 2/3rd November 2018