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. Jane Hanna OBE Chief Executive SUDEP Action SUDEP Action’s Prevent 21 Summit On Tackling Epilepsy Deaths: An overview sudep.org SUDEP Action’s Prevent21 Summit on Tackling Epilepsy Deaths – 2/3rd November 2018

3. Why we are here today Words from our bereaved community https://www.youtube.com/watch?v=7Hs2HFIlnJw sudep.org SUDEP Action’s Prevent21 Summit on Tackling Epilepsy Deaths – 2/3rd November 2018

4. Why hold a UK Summit? Sudden death is 24x more likely in people with epilepsy 21 people with epilepsy die each week in the UK At least 42%of epilepsy deaths are potentially avoidable (Sudden Unexpected Death in Epilepsy - when a person with epilepsy dies suddenly and prematurely and no reason for death is found) • Ficker (2000) Sudden unexplained death and injury in epilepsy • Thurman & Hesdorffer (2014) Sudden unexpected death in epilepsy: assessing the public health burden • Hanna et al (2002) National Sentinal Audit of Epilepsy Deaths sudep.org SUDEP Action’s Prevent21 Summit on Tackling Epilepsy Deaths – 2/3rd November 2018

5. Why hold a UK Summit? • 21 years ago the first UK Summit happened to define SUDEP (Sudden Unexpected Death in Epilepsy) • A 2002 Government Audit on epilepsy-deaths then showed the urgent need to action to tackle epilepsy-related death – 16yrs on, there are still huge gaps • The Prevent21 Summit brought key UK clinicians, researchers, influencers and policy-makers together to discuss & find ways of collaboration to help prevent future epilepsy deaths. • Highlighted by SUDEP Action’s bereaved community, the Summit emphasised the devastation and need for urgent action. Aims of the Event Highlight learnings on need, gaps and progress in relation to epilepsy deaths Explore key recommendations from panels and summit participants Provide opportunities for multi-stakeholder collaboration to tackle epilepsy deaths sudep.org SUDEP Action’s Prevent21 Summit on Tackling Epilepsy Deaths – 2/3rd November 2018

6. Recommendations from the bereaved community Families bereaved by epilepsy have outlined the following recommendations as being important to the Bereaved Community: 1. Timely signposting of bereaved families to specialist support services and the Epilepsy Deaths Register after a death 2. The roll out of tools that accelerate putting guidelines into practice on conversations about risk 3. Increased research funding being made available and prioritised to support projects on epilepsy deaths and the implementation of interventions to support clinicians and people with epilepsy, & avoid future deaths 4. Neurological Conditions (specifically highlighting Epilepsy and Epilepsy deaths) to be included in the upcoming NHS 10-year plan Findings from the Epilepsy Deaths Register research registrations, consulted on by bereaved families at the SUDEP Action National Conference 2018 sudep.org SUDEP Action’s Prevent21 Summit on Tackling Epilepsy Deaths – 2/3rd November 2018

7. What happened? A pre-event online forum ran for all invitees before the event to engage on key questions, start discussions & explore ideas before we met. Discussions were then able to move past unpicking the issues, and onto what actions can we take when together. “…Research looking at practical approaches to tackling epilepsy deaths can find it difficult to be awarded funding. Previous projects I have been involved with to look at how deaths can be tackled now, have been rejected time & time again, despite having leading experts & voluntary organisation support…” “I’m surprised to hear that some clinicians would say [discussing SUDEP/Epilepsy risks] is not their role. This clinicians would say that it is a very difficult task, but it is my responsibility.” “We can learn much from those who have died from epilepsy and from the experiences of their families left behind, and I think it is only fitting that they are represented at this event.” “Anything which could be done to help streamline and make the sharing of information between patient and clinician during appointments would be of benefit.” sudep.org SUDEP Action’s Prevent21 Summit on Tackling Epilepsy Deaths – 2/3rd November 2018

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

9. Who attended? 71 delegates representing 43 different organisations Bringing expertise in epilepsy (clinical, advocacy & patient representatives), neurology, bereavement, health services, policy making and the justice system sudep.org SUDEP Action’s Prevent21 Summit on Tackling Epilepsy Deaths – 2/3rd November 2018