SUDEP Action

Making every epilepsy death count
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Charity news update from SUDEP Action CEO - April 2020

News update


We hope you're managing to stay safe and well. Thank you for your kind messages and all your support.

We're in this together as we all face tough times. If you have time, look out over the next two weeks as we request your help with surveys to bereaved families, people with epilepsy, families and clinicians so that experts can better understand the impact of these times on all our community. SUDEP Action want to hear your voices so we can help protect services now and in the future.

You may have heard that the income to charities is down – particularly one like ours that relies on fundraising in the community at a time when community fundraising just can't take place. I imagine you, like me, think that the government emergency fund for charities helps. Sadly, it does not as epilepsy is not on the COVID 19 list and SUDEP Action is a small national charity.

Also, I am so proud of our charity team’s response who have together volunteered 25% of their salary this month to be able to help families and NHS workers. 90p in the pound goes directly to front-line work. The team created a short video about the changes we’re facing, which we shared on our social media platforms this week. If you missed it, you can see it here, and we’d love to hear your thoughts after watching it. Thank you to those who have been in touch already.  

Below is just one example of how our work is proving a vital lifeline to people during this challenging time:

The bereavement support team have given one-to-one support for two recently bereaved NHS workers. Both facing a return to work, whilst grieving because of SUDEP. The quote below is kindly from one of these people, who wished to shared it with us to show how important the work SUDEP Action is doing, and how our charity can help them continue to be there for people bereaved by epilepsy or living at risk because of it.

“SUDEP Action’s Support Service has been of great support to myself following my son's epilepsy related death. My son was a young man with a severe learning disability who sadly passed away in 2015. There is a pending inquest that will hopefully identify the failings made with the management of my son’s epilepsy.

Working for the NHS as a frontline worker in this current time with all the deaths due to coronavirus, has brought back to the forefront how I felt when my son was taken suddenly and unnecessarily by the awful condition epilepsy. I am sure it also has for a lot of families who have lost someone with SUDEP or an epilepsy related death; although COVID-19 is a very different condition, the suddenness of losing someone is very similar.

I would like to thank SUDEP Action for supporting me in this difficult time.”

When GP and coroner systems are strained beyond our imagination, the charity is indeed a lifeline alongside the NHS front-line. Our bereavement support service is not time-bound, and our Epilepsy Deaths Register is a safe and trusted place that can be revisited when the time is right. There is no airbrushing out of experience at SUDEP Action – we offer the empathy and learning built up by the bereaved community over decades.

NHS friends and colleagues, who are overstretched, are relying on our SUDEP and Seizure Safety Checklist more than ever to have vital risk discussions with people with epilepsy. And our free EpSMon app, is still here during these uncertain times of increasing risk, so that people with epilepsy can be helped to stay safe and avoid hospitals as much as possible.

    We are so grateful to all those who have already contributed or have taken part in activities to show your support. For those who would like to know more about how to support SUDEP Action, here are some of the ways you can do this:

    You can also help us by raising awareness of the challenges we face, at a time when our services are needed so much more.
    If you can help us raise awareness, please register your interest here and we’ll be in touch soon.

    Every little bit of support really does help us reach those who need us.

    Take Care. Stay Safe.

    Jane Hanna OBE
    CEO SUDEP Action