SUDEP Action

Making every epilepsy death count
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SUDEP Action Coffee Club – You said, We did

Our Coffee Clubs provide an invaluable opportunity for bereaved people to seek out those that they can identify with, who may mirror their way of grieving.  People can swap ideas for fundraising; for raising awareness or discuss strategies for coping with day to day life, whatever your reasons for meeting up – the main outcome of the meetings is to know you are not alone. People bereaved by epilepsy are spread throughout the UK and access to local meetings can be a life saver while they struggle to understand what happened and why. 

We have had such positive and valuable feedback from the meetings that we want to share it with you. We ask for feedback from every event we hold because it helps us to understand what is going well and how we might improve our services and support for you. Understandably, there is a consistency to the feedback from any given event, so below we have created a “You said, We did” area that highlights some of the ways in which we are responding to your suggestions. 

Look out for more “You said, We did” updates in future newsletters.

You said: “It would be useful if we knew of smaller projects which could provide a stimulus for fundraising on a smaller scale.”

We have received a few similar requests in Coffee Club feedback so have created a new information hand out for you called “Ways to get involved”. We understand that it can be helpful to have something in front of you that gives a summary of what next steps you might be able to take. From the grand to the modest, we sincerely appreciate it all. You will find the handout available at your next Coffee Club meeting. 

You said: “Maybe more often to meet”.

Our Coffee Clubs are usually planned for around twice a year per region. This provides approximately double the meetings available nationally, per year than we were able to offer with staff hosted regional meetings. We hope this creates a regular meeting point for those attending, without it becoming too time consuming for the leaders. We also hope to have more meeting locations as the programme progresses and we of course continue to hold our annual conference. There are also several other awareness events throughout the year that you may like to be involved in with more details on our website. If you think you might be interested in hosting a Coffee Club in your area, please contact the team for an informal conversation. 

You said: “More awareness for professionals and for them to pass information on to people with epilepsy and their families”

We could not agree more! At SUDEP action we strive constantly to raise awareness locally, nationally and internationally of SUDEP, epilepsy-related deaths and the need to be aware of epilepsy risks. Just one example of this is the SUDEP and Seizure Safety Checklist, an evidence based clinical tool that we designed to support risk communication as part of any review of an epilepsy care plan or consultation if clinically appropriate. Development of the checklist was funded by SUDEP Action, through Kt’s fund, which was set up by the family and friends of Katie Hallett, a young nurse who died of SUDEP in 2006.  The Checklist was incorporated into the award winning Epilepsy Self-Monitoring app EpSMon, which has been recognized, not only in the UK but internationally, as a tool that has the potential to improve outcomes for people living with epilepsy. 

Visit our website for information on how to register your interest for your local Coffee Club Meeting. Email invites are sent to the people registered on our database living in the relevant area or bordering regions. 

No email? No problem! Just give us a call or drop us a note in the post to let us know and we will add you to our hard copy, posted mailing list.