Why I'm supporting SUDEP Action Day: By Lord Vaizey
As a proud president of SUDEP Action I’m delighted that the charity is holding an event in Parliament on SUDEP Action Day, October 19.
I certainly plan to attend the event at Portcullis House, and I will be urging my colleagues from all sides of the political spectrum, from within the House of Commons and the House of Lords, to be there too. I know the objective is to get an adjournment debate in Parliament on tackling epilepsy deaths, as well as forge better links with Ministers and policymakers.
SUDEP Action is a wonderful organisation who do important and varied work; not just in bereavement counselling but also in pioneering research, including their work with the Epilepsy Deaths Register. I believe they have the tools and solutions to help the Government tackle epilepsy deaths.
It's still shocking to reflect that there are at least 21 epilepsy-related deaths a week and that many of these could be avoided. Back in 2015, whilst I was MP for Wantage – where SUDEP Action is based – I supported the charity’s Stay Smart campaign, designed to raise awareness around a new safety app supporting people with epilepsy. The technology developed by SUDEP Action, known as EpSMon, was designed to help people with epilepsy assess their risks between doctors’ visits.
This app has helped thousands of people living with epilepsy to stay safe, putting some control back in their hands. It enables people to better understand their personal epilepsy risks so they can make informed decisions about when to book GP appointments and review care plans. SUDEP Action can be rightly proud of the work it has done in developing this important and easy to use tool, along with the SUDEP & Seizure Safety Checklist, a tool for clinicians supported by leading epilepsy experts.
During my time as President of SUDEP Action I’ve listened to many heart-breaking stories from families who have lost loved ones – often young and in good health, apart from their epilepsy – to SUDEP. I know that this year, some families will be bravely sharing their personal stories publicly for SUDEP Action Day 2022,which has the theme #TalkSudepNow.
It’s hard to comprehend what it must be like to lose someone close to you so suddenly, so unexpectedly and so young. SUDEP Action works hard to support bereaved families who have gone through such shocking losses. However, they also work tirelessly to stop such terrible experiences from happening to others in the future.
I hope you’ll show your support for SUDEP Action Day 2022 and the network of supporters who make up this special SUDEP Action community.