We tailor our services to suit you
UK charity
We are the only UK charity supporting those whose loved ones have died suddenly from an epilepsy-related death
Our services include free bereavement support, counselling and help with understanding the inquest process.
We tailor our support services to suit you – offering information and advice and standing with you so you get the actions and answers you deserve. For example, we assist and empower many families in their dealings with the coronial service and other agencies.
UK and international research teams
We work with clinicians – to help you get answers
We also provide tools, information and resources to clinicians and people living with epilepsy. We work with UK and international research teams to help prevent epilepsy deaths – striving to get the answers that will save lives.
There are 21 epilepsy-related deaths each week in the UK – and at least 42% of these are known to be potentially avoidable. That’s around nine lives we can save every week.
About SUDEP Action
There are five key strands to our work:
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Providing info on SUDEP (Sudden Unexpected Death in Epilepsy) to significantly reduce epilepsy risk
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Bereavement support when someone has died
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Driving research to prevent future deaths
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Capturing data across the UK & internationally through our Epilepsy Deaths Register
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Creating a community to bring about change
Our Mission
We exist to prevent deaths from epilepsy. Changing and saving lives through research and enabling people with person-centred life-saving knowledge is our priority. Supporting the suddenly bereaved and involving people with lived experience in all we do is central to our mission.
Why?
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1 in 20 people will experience a seizure in their lifetime and will need to seek help
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There are over 100,000 emergency visits a year in the UK because of epilepsy
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At least 21 people die from an epilepsy death each week with most deaths happening at home. Up to half of deaths are Sudden Unexpected Deaths in Epilepsy with many dying suddenly in their sleep
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The latest population research (part funded by SUDEP Action) between 2004 and 2014 showed deaths in people with epilepsy rising by 69%
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The latest Public Health England Report in 2018 using national official data found a similar rise and that 49% of people with epilepsy died prematurely, with deaths three times more likely in deprived communities
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It’s been known for two decades that at least 4 out of 10 deaths could be avoided. At that time the National Audit – Epilepsy Deaths in the Shadows was the sixth national report evidencing epilepsy as a poorly served community
How?
Our focus is on changing the culture. Our campaigning shines a light on gaps in understanding and misinformation and brings it out of the shadows and to the public’s attention.
With a significant change of attitude, culture, and action towards epilepsy, a huge number of lives can be saved.
About SUDEP Action
Our values:
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Courage – to use the voices of the bereaved to prevent tragedies from happening to other families. Using private pain for public purpose.
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Pioneering – introducing innovations to reduce epilepsy risk.
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Impactful – making a difference to the lives of the bereaved; changing clinical practice and policy.
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Collaborative – working ethically with others to share expertise and create change.
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Compassionate – caring and supporting; a trusted lifeline to patients, families and the bereaved.
Also see
Our origins lie in the stories of five women, seeking answers
Meet our dedicated and committed team
Want to get involved in our work? There are lots of opportunities
For one-to-one support after an epilepsy death contact our support team today
We provide the only support line for people bereaved by an epilepsy death and offer access to qualified counselling. Our dedicated support team has a special interest in, and understanding of, sudden and traumatic death.
