Charity blog from SUDEP Action CEO - May 2021

For me it is a personal remembrance of Alan, my first partner, who died aged 27, many years ago, but also in togetherness with all the wonderful people whose lives have been cut short, and who we get to know a little through our connection as part of the SUDEP Action family.   

For those in the very deepest of grief at this time, we hope our lighted candles will show we are always by your side.

Online Epilepsy Memorial Day is a global day for families, and we connect together because of our shared experiences. 

We hope families will join us from around the world. I have seen the depths of despair of bereaved families over 10,000 miles away during this year. Whilst in New Zealand, Australia and some other countries, COVID-19 was brought to near zero quickly, so people there have been able to be together, many families have been suddenly bereaved through epilepsy deaths, many of which have been avoidable. 

In the UK and the rest of the world, COVID-19 has hit very hard indeed. We know, that alongside the enormity of the 130,000 people who have died from COVID-19 in the UK alone, that there have been rising deaths in our epilepsy community, and this is a heavy and painful loss. As a community, we have truly experienced a disaster together as COVID-19 has made worse the inequalities and injustices that existed before the pandemic struck. 

So in 2021, we can no longer say '21 people with epilepsy die suddenly each week in the UK' - we can now only say at least 21. Typically, parents and families find a loved one who has unexpectedly died, often at home during the night. Most deaths are in people who are otherwise well (those between 20-40 are most at risk). 

The hidden private and public burden falls especially heavily on bereaved families. We have also been alongside the doctors and nurses throughout the pandemic who have suffered too the moral injury of doing their very best in the most difficult of working conditions. Our bereavement traditions have been disrupted and families have faced huge complications in accessing answers and support after a death. 

For the sudden deaths, the trauma is difficult to appreciate unless you have lived it. At SUDEP Action, half of our Board have lived it, as I have, along with other members of the team, as well as most of our volunteers. We have many other champions including people with epilepsy, clinicians, researchers and companies who partner with us. 

Online Epilepsy Memorial Day is part of a range of services and projects the charity provides to fill a painful gap in services for epilepsy, risk and traumatic sudden bereavement. Before COVID-19, grieving families had worked with NHS clinicians to innovate safety tools, recognised in January 2020 as national best practice. Through the pandemic we have cut through red-tape and have been able this year to roll out our SUDEP and Seizure Safety Checklist to half of all GP practices in England in a collaboration with a digital specialist. We have also this year brought your experiences and the latest research on stopping deaths now to all decision-makers through our Lives Cut Short report. We also campaigned for services for people with epilepsy and the bereaved to resume, and improve, so that lives can be saved. There is, however, so much more to do.

I would also like to share the deep grief I feel this week for the loss of a member of our team at SUDEP Action. Dr Rosey Panelli, researcher, GP practice manager, and a champion of the SUDEP cause, was a friend and colleague to me and our team since 1996.  Her strong view, based on reading over 3,000 research papers and her clinical practice, was that person-centred SUDEP and epilepsy risk awareness and improved epilepsy services was our best bet for saving many lives now.

Our candles that we will light on the 5th May will be a beacon of hope, that through our connections together we will overcome. 

Take care and remember, SUDEP Action are always by your side.

Jane Hanna OBE,
CEO SUDEP Action