APPG on Epilepsy Meeting on SUDEP

The All Party Parliamentary Group on Epilepsy meeting on Sudden Unexplained Deaths in Epilepsy (SUDEP) which I co |chaired with my colleague Paula Sherrif MP took place at 1 Parliament Street on Monday 31 October 2016.

Epilepsy is one of the top-ten causes of early death, with three or more Epilepsy-related deaths occurring daily in the UK.

Three speakers addressed the APPG: Professor Stephen Brown (SUDEP Action Chair of Trustees and retired Consultant Neuropsychiatrist), Professor Ley Sander (Medical Director of Epilepsy Society, Professor of Neurology at UCL) and Rachel Shah who shared a parent’s perspective.

SUDEP is when a person with Epilepsy passes away with no other possible reason for death. Despite tireless efforts of researchers, there is unlikely to be a cause. It is common that during a fit or seizure an individual will have a change in breathing pattern or pulse, which is not necessarily life-threatening, unless the change is radical, such as a fall in oxygen in the bloodstream. The latter is a potential trigger of SUDEP. Seizures may also impact the brain’s control on breathing and the heart, as well as the chance of there being a link between seizures and irregular heartbeat problems. Research improvements mean that the critical risk factors are getting closer to being fully identified. However, considerable research is still required to determine whether someone is born with the condition or not.

Amongst those suffering from Epilepsy, the risk of SUDEP is at a ratio of 1:1000, with those being considered for surgery being most at risk – potentially standing at 1:150/300. Moreover, SUDEP mainly targets 16+ year olds. It is believed that the chances of the sudden death rise with age and the length of time someone has had Epilepsy. There are possible ways of reducing the risk of SUDEP : taking medication correctly, regularly seeing the designated health professional and informing friends and loved ones of the full details of your condition. SUDEP Action, the only UK charity specialised in supporting and involving people bereaved by epilepsy, is a useful source of contact or further information. For more information contact: https://sudep.org

The APPG has published a report on its work in 2016. This is available to view on my website here: https://www.valerievazmp.co.uk/wp-content/uploads/2012/09/APPG-on-Epilepsy-Report-2016.pdf