SUDEP Action

Making every epilepsy death count
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Champion4Change Campaign gains momentum with backing from 29 MPs

28th Jun 2016


Twenty-nine MPs have signed our EDM supporting the spread of best practice in epilepsy risk management across the country and the signposting of families to SUDEP Action after a death. 

The Early Day Motion (EDM) was tabled during National Epilepsy Week as part of our Champion4Change campaign. MP Norman Lamb, Former Minister of State for Department of Health, and Valerie Vaz MP, Chair of the All Party Parliamentary Group for Epilepsy, tabled the Early Day Motion in parliament. An EDM, is a 250 word statement submitted to Parliament to draw attention to a specific cause. It calls for supportive MPs to sign up and show they stand by the points raised. EDMs are 'live' for 12 months and in order for an EDM to be actioned it needs to have 100 signatures. With 29 signatures, our EDM needs 71 signatures to get to hundred, and we need your help to achieve this! 

The EDM:

  • Urges NHS England to support the dissemination of best practice across the country and the signposting of families to SUDEP Action after a death; commends innovative approaches to self- monitoring and the management of risk factors, such as the SUDEP and Seizure Safety Checklist and EpSMon.
  • Raises awareness among MPs of the need to improve epilepsy care and signposting of bereaved families after an epilepsy death.
  • The EDM is co-sponsored by: MPs Peter Bottomley, Mark Durkan, Alan Brown & Gavin Newlands. 

If your MP has not signed the EDM, please contact them and encourage them to do so. We want as many supportive MPs as possible to sign their name on the EDM and pledge their support on behalf of the bereaved community.
 
You can get resources to contact your MP by emailing:  [email protected]  (please mention your constituency & MP's name). You will receive a template letter for your MP with information about the EDM and how they can help.

The EDM draws to the attention of MPs that there have been 14,926 reported deaths since governments across the UK pledged to take action to save lives following SUDEP Action's National Audit of Epilepsy Deaths in 2002. It also acknowledges the fall in the number of epilepsy-related deaths in Cornwall, due to the work of the Epilepsy Life Project which saw the development of the SUDEP & Seizure Safety Checklist, with no deaths reported in the community-based learning disability service in the last five years. There was also a reduction in deaths among the general epilepsy population across Cornwall Services.
Thank you to everyone who has supported the campaign and contacted their MP.

You can view the EDM & supportive MPs here.