Fifteen MPs attend Westminster launch of The Epilepsy Deaths Register
Fifteen MPs attended the SUDEP Action launch of The Epilepsy Deaths Register. The Parliamentary Reception was held on Tuesday, 4 June 2013. The campaign is aimed at preventing epilepsy deaths. The reception was hosted by Ms Claire Perry MP. Politicians heard of the experience of SUDEP Action supporters, the Burns family, whose son Charlie aged 10 died from SUDEP following a seizure that occurred during his sleep. His family had never heard of Sudden Unexpected Death in Epilepsy (SUDEP).
Commenting on the campaign, Norman Lamb MP, Minister for Care and Support, said: “I am hugely supportive of the important work being undertaken by SUDEP Action, and in particular their work to establish an Epilepsy Deaths Register. Their register will help to develop a clearer picture of epilepsy-related deaths nationwide, will help to improve clinicians’ understanding of epilepsy, and will ultimately help to reduce sudden and unexpected deaths in epilepsy and improve patients’ care.”
There are 3 epilepsy deaths every day in the UK every day often in the young. This puts epilepsy in the top ten of all causes of early death. Sudden Unexpected Death in Epilepsy (SUDEP) is used when someone with epilepsy dies suddenly- often after a seizure that involves loss of consciousness. SUDEP accounts for at least half of all epilepsy deaths in the UK. Whilst doctors have information to help patients avoid fatal accidents or prolonged seizures, much less is known about SUDEP. The Epilepsy Deaths Register has been launched to help with the prevention of epilepsy deaths and provide some answers to SUDEP.
SUDEP Action Acting CEO Karen Osland highlighted the importance of the register commenting that: “registers of epilepsy death are a vital new development in work on prevention across the world. We need everyone who knows of a death to report and we need as many supporters as possible joining our campaign to develop the register. I urge anyone with information about a death to contact the register via www.sudep.org”.
SUDEP Action Chair of Trustees Professor Stephen Brown emphasised that information from the register is desperately needed as a research tool. His comment was echoed by Dr Henry Smithson who is providing research support for The Epilepsy Deaths Register.
Campaigners and policy makers are working to raise awareness amongst Coroners who can play a key role in recording deaths which can help to educate the public and improve services.
Jan Burns who spoke about her son Charlie’s death from SUDEP said: “The most significant development has been the launch of the Epilepsy Deaths Register by SUDEP Action, a place where bereaved families and friends can register an Epilepsy related death. This information will be used for medical research, in the hope that it will one day help towards finding a cure and prevent more unnecessary loss of life. This information will also highlight the number of people who are losing their lives to SUDEP.”
The fifteen MPs that attended the event were Ms Claire Perry, Mr Damian Hinds, Mr Stuart Andrew, Mr John Howell, Mr Andrew Jones, Mr Paul Flynn, Mr Paul Maynard, Mrs Heather Wheeler, Ms Tracy Crouch, Mr Peter Aldous, Sir James Paice, Mr Simon Hart, Mr Andrew Percy, Mr Alec Shelbrooke and Mr Jim Shannon.
If you are interested in meeting with your MP to ask for their support for the register, please contact Nathan.firstname.lastname@example.org or tel: 01235 772850