Towards the end of 2020 the Foundation launched a letter writing campaign to Members of Parliament, about SUDEP Action. We raised 4 key points asking for action on the following:
- A meeting between SUDEP Action and a Health Department Minister
- A Government enquiry into avoidable epileptic deaths
- A funded annual health check for all people with epilepsy
- A training programme to ensure that all health care professionals are aware of the danger of SUDEP
We had positive replies from 15 MPs including very helpful follow up Zoom / telephone meetings with Sir David Amess MP, Sir Bernard Jenkin MP, Alex Norris MP, Anthony Browne MP, and John Whittingdale MP,
David Amess mentioned SUDEP Action's 'Lives Cut Short' Report, on the floor of the house and we are hoping for an adjournment debate.
Edward Agar MP sent good wishes via an aide. Jeremy Hunt MP sent a message of support and Valerie Vaz MP invited us to join the All Party Parliamentary on Epilepsy. Plus we had very supportive letters from Maria Caulfield MP, Dr Luke Evans MP, Keiran Mullan MP, James Duddridge MP and Dr Ben Spencer MP. We thank them all.
Whilst it was a shame that two MPs didn't find time to respond to their constituents letters (Thangham Debbonaire MP and Rushnara Ali MP) we were delighted with the response from everyone else and look forward to following up these leads this year.