Part of the debate – in the Senedd at 3:39 pm on 1 December 2021.
Diolch yn fawr, Llywydd. I wish to make a quick statement today on SUDEP, which is sudden unexpected death in epilepsy. In Wales, there are an estimated 32,000 people living with epilepsy. Twenty-one people a week or three people every day in the United Kingdom die from SUDEP, with a large percentage of them being young men between the age of 20 and 40. As a group, people living with epilepsy are at a one in 1,000 risk of SUDEP. However, this can change drastically for some people depending on their individual circumstances. For some of my constituents, this is a very real issue that they live with every day, and some of the experiences they have shared with me over the past few weeks have been truly inspiring.
I would particularly like to reference Hayden Brown, a young man from Ammanford who lost his life to SUDEP just over two years ago now. His mother, Helen, is working with Hywel Dda to produce a resource that can be given to people at the point of diagnosis to increase people's awareness and inform them on how they can minimise risks. She also gives out an award in his name every year at his old junior school, Ysgol Bro Banw.
SUDEP Action are an excellent charity, who are doing their utmost to raise awareness of SUDEP specifically, and I would encourage anyone who has had family or loved ones affected by the condition to visit their website. Also, Epilepsy Action Cymru do a fantastic job of raising awareness and increasing understanding of the condition here in Wales. I would like to thank these organisations for their excellent work on this issue.