For me, last year’s walk along a beautiful river in the rain and the mud but ending with a rainbow felt very cathartic as we worked as a charity alongside other charities and organisations though all the challenges of 2020.
2020 was all about COVID-19 but we managed, with your support, to rise above and not only be alongside families and clinicians but to research and bring the impact of the pandemic on families and health workers to the attention of the UK government.
This year I plan to walk my 5K along the Ridgeway in the Vale of White Horse, to travel along an ancient trackway described as Britain’s oldest road with magnificent views down to the communities that lie in the Vale. It will be a great opportunity to think about the future in the midst of all the bad news that surrounds us every day and how together we can continue to play our part to improve lives.
2021 is different – now that COVID-19 is no longer dominating the news and there are more opportunities opening up. The pandemic has just shown up the systemic inequalities that existed for decades about access to services and proper recognition, communication and management of SUDEP risk but also about inequalities in treatment after death. We have really good evidence now through the pandemic that when SUDEP Action can bring our knowledge to bear and work with others we can ensure deaths are reported properly, get vital learnings and bring innovation and change.
This is in tribute to all those who have died from epilepsy, and it tells the world that these people will have not died in vain, because in their memory, we bring these life-saving messages to the whole community, so that people can live well.
On this SUDEP Action Day, you can join us, our theme is #TimeforChange.
People can join us in all sorts of ways:
- Most of the SUDEP Action team are taking part in the My Way to 5K event that week, to raise awareness in their community.
- Share messages about SUDEP awareness via social media.
- Other people are writing letters to MPs.
Other people are sharing social media messaging. Whatever it is, all that is important, is that we are doing this together and that we are on the same path. And we are doing this because we care about people with epilepsy.
Last year, we had 100 organisations and thousands of people take part in SUDEP Action Day. So please have 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.
For now, from all of the SUDEP Action team, take care and stay safe.
Jane Hanna OBE
CEO, SUDEP Action