Ten barriers SUDEP Action has broken down since 1995

Jane Hanna OBE is a founding member of SUDEP Action and is the charity’s current Director of Policy & Influencing.

Here, for SUDEP Action Day, Jane has identified the top 10 barriers the charity has fought to break down over the past three decades. These include ones we are still striving to break down.

1)‘It is not a care and communication priority’       
“In 2001 the Chief Medical Officer in the UK called out the cultural exclusion of epilepsy and SUDEP.  There is support in some regions to tackle SUDEP and make care a priority but there is no national plan. We are accelerating the local roll-out with our SUDEP awareness and safety digital tools as we push for national support – please join our movement for change.”

2)There was no support
“SUDEP is catastrophic. We built a community of support and advocacy when there was nothing else anywhere in the world. Today, families can access support and expert help and are supported to get learnings from deaths and be involved in the cause.” 

3)SUDEP Secrecy 
“For 30 years, we have been breaking down barriers with wisdom from practice and lived experiences, as well as science – so science never again becomes divorced from the painful exclusions and the realities of our community and movement.  SUDEP secrecy, or ignorance, has undermined choice, and a lack of basic rights  has historically worsened the anguish and distress families have faced. Our Charlie Card and digital safety tools exist to stop this, and we are continuing to embed them within the NHS.”

4)The myth that epilepsy does not kill
“For years we were told to be silent. We shared our lived experiences like a broken record  until people started to believe us, beginning with an international workshop in 1997.”

5)The myth that  Sudep doesn’t exist
“We worked with researchers to establish the definition of SUDEP and got this recognised in national guidelines in 2004. An international consensus on the definition was reached in 2012.

6)‘It’s not a research priority’
“We have coproduced a significant body of SUDEP research since 1997 with a  global conversation. We campaigned relentlessly for mortality to be the UK’s epilepsy research priority and recently, the state has invested £19million into 46 epilepsy research projects.

7)The myth that deaths are tragic but unavoidable
“We have put families at the centre of multiple prevention of death reports and Fatal Accident Inquiries – and we have shown many deaths are avoidable. Some recent population studies indicate up to 80% of epilepsy deaths are avoidable. In the UK, we have exposed poor services and a lack of risk management and communication since 2002. The National Audit found that most people who died did not have intractable epilepsy.”

8)Gathering data to arm guidance   
“We worked with research champions to build the evidence base which supported the first national guidelines (in 2004 for clinicians and 2006 for pathologists). The American Epilepsy Society guidelines followed in 2017.” 

9)Raising standards for the care of people with a learning disability  
“Our work on producing the Clive Treacey Checklist is still being rolled out across the country.”

10)‘Health professionals in the community do not know about SUDEP’
“We are training and informing GPs, pharmacists, people who work in schools and carers. We have evidence-based digital tools to support clinicians such as The SUDEP and Seizure Checklist (including a paediatric version), easy read resources and our EpSMon App. More recently we helped produce and launch the Charlie Card to help raise wider awareness that epilepsy is a cliff-edge condition. These tools, and our awareness-raising outside hospital settings, is critical to helping people get the support they need.”