SUDEP Action

Making every epilepsy death count
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A blog from Jane for SUDEP Action Day 2022

It is encouraging to see lots of people and organisations taking part in SUDEP Action Day around the world again, at such a difficult time for so many.

With the World Health Organisation calling on governments to recognise epilepsy as a priority public health inequality, it is more important than ever that SUDEP Action Day brings together all those committed to raising awareness and supporting movements for change. 

It's more than two decades since I led the first national audit of epilepsy-related deaths across the UK, with partnerships across five medical colleges. For me, talking about SUDEP means talking about a shared journey with families, clinicians, supporters and politicians, who have lived this experience of inequity and found a route through it. Enduring too many deaths and not being listened to enough, the movement today has the expertise and innovations to support systems who commit to recognising and tackling the inequalities that are our everyday experience. 

Back in 2002, in the UK alone, there were more than 1,000 epilepsy deaths a year and up to 42 % of these were preventable. Some 600 of these were SUDEP. We found that there was poor access to services and inaccurate recording of deaths, whilst the risks posed by seizures wasn’t communicated or understood by patients. In less than one per cent of such deaths, did bereaved families know that epilepsy could be fatal.

It is truly shocking but the latest research and surveillance illustrates that many of these inequalities still exist, largely because governments have not listened. Our policymakers and decision-makers must treat epilepsy as an urgent public health problem because things have got even worse since the pandemic.

The past two decades have created a significant body of research on known risk factors that can be used for person-centred care. SUDEP Action continues to bust the myths that epilepsy does not kill and that there is nothing that can be done to save lives. Today, we have a much better understanding of how to overcome systemic barriers to communication of risk, and digital tools bring expertise to people’s fingertips. Every life and every death matters.

This year, on SUDEP Action Day, we are meeting with MPs from around the UK and we want the Government and more local policymakers to meet us halfway and show an increased commitment to change.

I believe that if you can improve the way systems work for the most vulnerable, you ultimately improve things for all. A specialist nurse I spoke to recently shared how she had worked her socks off with local GP practices to improve services and felt that the carpet had been pulled from under her feet when funding for once-a-year checks on people with epilepsy, the annual review, was cut suddenly in 2013.  A risk check outside of hospital settings is such an obvious thing to do – and this is why, when we saw such services being cut, we began work on our SUDEP and Seizure Safety Checklist and EpsMon App to give people the ‘pester power’ they would need to fight for deserved and proper access to care.

Last week, we met with clinical and charity colleagues at the British Branch of the International League Against Epilepsy. It was wonderful to connect in person with colleagues from Epilepsy Action, ERUK, Epilepsy Specialist Nurses Association, Young Epilepsy and Matthew’s Friends. I am now looking forward to meeting in person with supportive MPs at Westminster for the first time since the pandemic. The uppermost message that we will deliver is a remarkable one; that families whose children have died suddenly, who are themselves suffering traumatic grief, pay tribute every day to their loved ones by focusing on the beautiful young people whose lives can be saved.

SUDEP Action Day matters because it’s a day when we can all come together around these families to help raise vital awareness.

On this SUDEP Action Day, you can join us, our theme is #TalkSudepNow

People can do that in all sorts of ways, from taking part in My Way to 5K to raise awareness in your community to sharing messages about SUDEP awareness through social media.

Do take a look at the SUDEP Action Day website for this year.

We look forward to hearing about all the different ways that you get involved.

Jane Hanna OBE