SUDEP Action

Making every epilepsy death count
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Charity Conferences

conference

What is the National Conference?

This annual event is a great opportunity to hear all about what SUDEP Action have been working on and how YOUR support has helped. It’s also a chance to meet and be with people who understand.


What happened at the recent Conference?

The National Conference 2018, in Leamington Spa was a smaller, intimate occasion.

Allowing for supporters to spend valuable time together, building up new and existing relationships, and to hear the latest research and project updates from the charity

It started with an interactive session with Jane Hanna OBE and new SUDEP Action Chairperson, John Hirst, on the Friday evening. The informal space helped set the scene for the Conference. Questions were asked about the recent CDB oil scandal, building media relations and about the definition of SUDEP – in particular, its origin.

The Saturday morning was a similar format to last year - short update sessions by an expert panel of researchers and clinicians, followed by an interactive Q and A session. 
Here is just a snapshot of what was discussed on the Saturday:

Jane Hanna OBE, highlighted the work that SUDEP Action have been doing since the last Conference, including new research, projects and a positive update on our Prevent21 appeal. Together, we helped 11,000 people last year via our bereavement services, The Epilepsy Deaths Register, EpSMon self-monitoring app and the SUDEP and Seizure Safety Checklist.

PDF icon Welcome presentation

 

Dr Rhys Thomas, provided a powerful video presentation about understanding the need if The Epilepsy Death Register (EDR). Every person who reports an epilepsy-related death, helps research. Bringing us one step closer to finding the answers to these deaths.

 

Phil and Sarah Tittensor, from the Epilepsy Nurse Association (ESNA) explained the work of an epilepsy specialist nurse and they are fighting to keep people safe.

PDF icon ESNA Presentation

 

Sam Parker, a SUDEP Action researcher based at Plymouth University, delivered an update on the past, present and future of the SUDEP and Seizure Safety Checklist. Sharing research which has shown for the first time, that use of the Checklist is reducing risks in people with epilepsy known to be at risk!

PDF icon SUDEP and Seizure Safety Checklist presentation

 

Dr Craig Newman talked about his work as a clinician, as part of the EpSMon team. Exploring the SUDEP/Risk conversation and how EpSMon is revolutionising epilepsy self-management.

PDF icon EpSMon presentation

 

The afternoon offered attendees the opportunity to share the amazing awareness and fundraising activity they have been doing. There were some really inspiring and heartfelt stories. Thank you to those who took part. There were also, group discussions regarding the 1000voices project, as well as some interviews. SUDEP Action are working in collaboration with a SUDEP Action supporter, Fraser Morton, who is also a freelance documentary maker. He will be helping to share the stories of those whose lives have been affected by epilepsy.

The outcome of these interviews is something quite special and powerful. It not only shows the vital voice of the bereaved families but also highlights the urgent need for action – fuelling the work of the charity, in particular the upcoming Prevent21Summit (November).

More details on these interviews and the Summit will be shared with you shortly. 

To get a feel of what the event was like, here is some feedback from some of the attendees:

 

Thank you all for a truly informative, uplifting, positive conference this weekend. It was great to catch up with you all, meet ‘old’ friends and make new. It was certainly easier to participate than my first conference.

 

With discretion and great sensitivity, You and all the Team create just the right climate and atmosphere to facilitate support and energetic involvement and this makes it possible for those who can and want to, to contribute and those who don't or can’t are included equally all along anyway. That’s a hard act to pull off.

 

Dr Rhys Thomas made a very great impact. Such a welcoming and understanding group of people to spend time with. Also, good group activity at the end addressing some of the 1000 voices questions. Good to be here!