SUDEP Action

Making every epilepsy death count
Call us now on 01235 772850

Informing & influencing Policy


Policy: a set of ideas or a plan of what to do in particular situations that has been agreed officially by a group of people, a business organization, a government, or a political party. (Cambridge Dictionaries)

Access to an individualised epilepsy care pathway, awareness of and research into SUDEP & epilepsy risks and signposting of bereaved families to support services are just a few of the ways in which public policy impacts on people with epilepsy, their families and those bereaved by the condition. In our work supporting those bereaved by epilepsy, and our work with health professionals and researchers, we understand the impact these things have.

We work to raise these issues with policy makers on a local, national and international level, working with them to change the future of epilepsy care and to ensure that we make every epilepsy death count. 

Our policy work also informs the development of the charities’ services.

The NHS & healthcare
The NHS and healthcare system is undergoing many changes – we work to ensure policy makers cover epilepsy services in their plans & work towards improving care for those affected by the condition. 

Government – Local and National policy
Both parliament and local MPs can help raise awareness and show support of our work – influencing the policy decided within Government. 


Working worldwide
Working with international organisations to influence worldwide policy and raise awareness across the globe. 

How you can help

Our Campaigning and Policy work reflect the priorities, views and experiences of those bereaved by epilepsy. You can help us to make a difference in continuing to raise awareness of Epilepsy risks and mortality, working to improve epilepsy services and making sure that every epilepsy death counts. 
You can help us by: 

  • Telling us about your priorities for policy change – what area is important to you and why?
  • Commenting on our current policy work. Share you views and let us know if you have specific ideas about how we can continue making progress. 
  • Joining us on Twitter (@sudepaction & @SammyAtSUDEP) or Facebook (SUDEP Action & Sammy Ashby) to keep up to date with our current work.  
  • Signing up to our e-news to find out about our latest campaigns and policy news.

Got an idea about how you could get involved with our policy work? We’d love to hear it so please get in touch via [email protected]