Peter Aldous MP supports The Epilepsy Deaths Register campaign
Waveney MP Peter Aldous has supported The Epilepsy Deaths Register aimed at preventing epilepsy deaths. This is the first register of epilepsy deaths in the UK. The campaign is aimed at improving services for people with epilepsy and preventing deaths. SUDEP Action launched the campaign on 4 June 2013 at a Parliamentary reception attended by fifteen MPs.
Commenting on the importance of the Epilepsy Deaths Register Peter Aldous said: “I am happy to have met SUDEP Action, I am hugely supportive of the work they are doing on The Epilepsy Deaths Register. Most people are unaware that epilepsy is one of the top ten causes of death in young people. This register will go a long way towards getting vital information which can provide invaluable help for epilepsy sufferers and their families.”
SUDEP Action Chief Executive Jane Hanna and Nathan Sparkes, Policy and Participation Officer met MP Peter Aldous at Westminster on 19 November 2013.
Commenting on the meeting Jane said: “It is great to have Peter’s support for The Epilepsy Deaths Register and the work of SUDEP Action. Peter’s support for the register is especially welcome as we look to address the significant research deficit for a condition which has been responsible for more deaths in the UK than HIV and cot death combined in the last 5 years. I urge anyone with information about a death to contact the register via www.sudep.org.”
Mr Aldous wrote to his local Clinical Commissioning Group to ask them to help publicise The Epilepsy Deaths Register and to the local Coroner to ask them to refer bereaved families to the register. SUDEP Action has since received positive feedback from the Clinical Commissioning Group.
There are 3 epilepsy deaths every day in the UK 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 provide some answers to SUDEP and the prevention of epilepsy deaths.
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.