SUDEP Action

Making every epilepsy death count
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SUDEP Action’s National Conference 2016 – Summing up the Big Conversation so far


A huge thanks to everyone who came to our weekend conference.  So many friends reunited and  brave families making connections for the first time. We always say this is the club that no one wants to join but we are so grateful to all of you who have told us that the opportunity to come together is so precious to you. 

My talk – ’The Power of Communities’ was aimed at showing how there was a real opportunity for a coordinated and concerted push to achieve what the bereaved families have been fighting for, for so long.  

The challenge on preventing avoidable deaths is an important part of the overall empowerment of people and families living with the condition. SUDEP Action works to support the Epilepsy Bereaved Community by representing the voices of the families and involving and supporting them to share their stories, get involved in campaigns or get involved in research.      

A big thank you to Dr Colin Dunkley painting a realistic picture of the challenges facing epilepsy care, but also in helping the families to see the positive work and the energy going on in some places to tackle the serious issues that families face and the importance of connecting up all the great initiatives. His talk on ‘Preventing Deaths in Children’ provided us with a chance to discuss where best to take the struggle – locally, regionally or nationally. It was really helpful to also hear about local changes in discussion of risk which is a priority of our families. We look forward to working with Colin in the coming months on our Paediatric SUDEP and Seizure Safety Checklist and also on the much needed leaflets on risk for parents of children with epilepsy.

Most of the time over the weekend was spent in informal workshops. The contribution of all the families just by being present was hugely helpful to the charity and the sharing of the struggles that you face day by day helps inform how we move forward. Thank you to you all.

This was all part of our `Big Conversation` to involve you in our campaigns and our priorities. This conversation is also informed by the 500 reports to The Epilepsy Deaths Register from families sharing their experiences with us and from involvement from families in sharing their stories with us and getting involved in campaigns and research. 

On Sunday we worked together on the start of a Charter for our Community: a document outlining the needs and expectations of our bereaved community.  This charter, once complete will help SUDEP Action to move forward by nurturing connections that help us meet these needs; ensuring that the collaborations we develop are with people who likewise respect our bereaved families and stand for what we believe in.  So far, points in the Charter include: stopping deaths sooner rather than later,  highlighting the value of the supportive services, and  how SUDEP Action support people in their struggles with investigations and inquests after a death: supporting individual journeys wherever these may go. The Charter is still developing, and we will be speaking with you all soon to help us move it on so the community is reflected in it; we really hope you can add your voices to it.  

Everyone has their own journey but our journeys are connected. SUDEP Action supports these connections and helps the Epilepsy Bereaved community to reach out to nurture all those relationships that help our community. 

Everyone at the weekend and all those unable to make the weekend are invited to join us in the development of the Big Conversation and the Charter of our bereaved Community.
In the meantime, if you would like to get involved and lend your voice as part of our community, please visit our ‘I Want to Raise Awareness’ page for inspiration and ideas.

In the meantime, if you would like to get involved and lend your voice as part of our community, please visit our ‘I Want to Raise Awareness’ page for inspiration and ideas.

We are really grateful for the positive feedback we have received following the conference– thank you for this, your comments really help us know we are meeting your priorities. If you haven’t had a chance to let us know your thoughts yet, please do drop us an email. Just some of your comments from the weekend:

“This was our first conference after the loss of our son. We thoroughly enjoyed the weekend and made lots of new friends. The informality made it very relaxed and enjoyable. Great work being done by SUDEP Action”

“All wonderful - Thank you for bringing us all together and or all you do”

“Once on the weekend – full eyes, ears, heart and soul can be engaged and given to the sorry subject of SUDEP”

“Have seen other people comment on FACEBOOK that they have been put off coming as I think they also feel that being a `conference’ is not for them…we have met so many lovely friendly people! THANK YOU!

“Great update on Charity’s projects – generates enthusiasm amongst supporters”

“Was expecting something more formal but was really impressed by the relaxed friendly atmosphere”

One final thing, the slides from our talks and our Sunday session about cake can be found below – if you would like to let us know what ingredients you would include, let us know in our cake posts from the conference on our Facebook page.  


PDF iconPreventing deaths in children - what progress can we expect? Dr Colin Dunkley

 

PDF iconPreventing epilepsy deaths - the power of communities (Jane Hanna)

 

PDF iconIf SUDEP Action were a cake



PDF iconForget me not

 

You can also view the charity conference photo gallery below:
 

PDF iconCharity Conference photo gallery

 

Thank you again to all those who attended the conference, supported us from afar or are there for us throughout the year – your support makes all the difference. 

Best wishes,

Jane Hanna

SUDEP Action CEO