Chris Jeans from Mid Calder is leading a campaign to raise awareness of Sudden Unexpected Death in Epilepsy (SUDEP), after the shock of losing her son Stephen to the condition.
The campaign by Chris is being backed by Graeme Morrice MP, who recently met with Chris, and pledged to help raise awareness about the issue and the support that is available for bereaved families.
Chris, who is now a volunteer ambassador for the charity Epilepsy Bereaved, told Graeme about the terrible shock she experienced when she lost her son Stephen to SUDEP in 2010, and the fact that she was not previously aware that this could happen.
She is now campaigning to try and ensure that others with epilepsy are better informed about the possibility of sudden unexpected death in order to help prevent others having to go through the distressing and painful experience she suffered.
The Livingston MP has now signed a parliamentary Early Day Motion (EDM) on the issue. It notes the tragic loss of life caused by SUDEP, which is estimated at around 500 deaths in the UK each year.
It also highlights the findings of a recent fatal accident inquiry held in Dundee Sheriff Court that the deaths of two young women aged 19 and 15 years may have been avoided had the women and their parents known about the risk of SUDEP and given information and support on or shortly after first diagnosis.
Finally, it calls on Government to do everything in its power to raise awareness of the risks of SUDEP, and to ensure those affected by epilepsy, and where relevant their families, are adequately informed of how best to reduce the risks associated with the condition.
Chris Jeans said: “When Epilepsy Bereaved asked me to become one of their ambassadors to help raise awareness of SUDEP I didn’t have to think twice. I have pledged to do all I can to raise awareness of the issue and, crucially, how people with epilepsy and their families can avoid going through what I experienced.
“To obtain the support of MPs like Graeme is really important, not only to raise public awareness but also to help ensure that our decision-makers understand the risks of SUDEP and take steps to improve the support available for those affected by epilepsy and their families.”
Graeme Morrice MP said: “The loss experienced by Chris and the hundreds of other families who suffer Sudden Unexpected Deaths in Epilepsy each year is heart-breaking. The fact that experts believe that many of these deaths could be prevented if the risks were better understood by people living with the condition, as well as their families and friends, is of great concern.
“I commend Chris for her work with Epilepsy Bereaved. The charity has led cutting-edge research to establish major risk factors and ways to reduce risk and currently funds and works with research teams across the UK and Ireland. Epilepsy Bereaved provides bereavement support, which helps break the isolation that people experience following SUDEP, or other seizure-related deaths. The charity involves the bereaved in research and in campaigns aimed at prevention of deaths.”
“I am pleased to add my support to the campaign to raise awareness of SUDEP in order to help ensure that there is better public understanding about it and to prevent more of these potentially avoidable deaths from happening.”
Families seeking information about sudden unexpected death in epilepsy can find out more at the Epilepsy Bereaved website - www.sudep.org or telephone 01235 772852.