SUDEP Action

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Urgent call for action as learning disability mortality report has epilepsy in the spotlight


Epilepsy deaths have been flagged as a significant concern in the latest LeDer Review which looks into deaths in people with learning disabilities. LeDeR (Learning Disabilities Mortality Review) is a national review programme aiming to improve the lives of people living with learning disabilities by learning from deaths and reviewing care.


The 2019 LeDeR annual report was published in July 2020 and highlighted:

  • Epilepsy was the sixth most frequently recorded cause of death in people with learning disabilities in 2019 and 2018, with more adults and children dying in 2019 compared to in 2018.
  • The highest number of deaths was in those aged between 4-17 years old.
  • Epilepsy was also the second most frequently reported potentially treatable cause of death

The report made the recommendation that the SUDEP and Seizure Safety Checklist (for clinicians) and EpSMon app (for people with epilepsy) should be used as a safety measure for people with epilepsy. Echoing the NHS Rightcare Epilepsy Toolkit which cites these tools as ‘best practice’ for taking a risk management approach to epilepsy mortality.

The report also recommended a minimum of an annual epilepsy review (& up to date care plan), as well as improved training for people with epilepsy and their carers around issues such as emergency/rescue medications.

Jane Hanna OBE, SUDEP Action’s CEO commented “It is shocking that 18 years after the National Audit found serious failings in epilepsy risk management in people with learning disabilities, that this 2019 mortality report finds epilepsy as the second most frequently reported treatable cause of death in people with epilepsy and learning disabilities. What is hopeful is that SUDEP Action’s safety tools are recommended.

Now we are looking for actions, not just words, from Governments and their agencies; they must raise their game and do all they can to prevent future deaths” 

Standardised use of the SUDEP & Seizure Safety Checklist to support epilepsy risk communication between clinicians and their patients (& carers) has shown to help reduce risk in people know to be at risk. The free award-winning tool is currently used by nearly 1000 clinicians across the UK.

EpSMon, the free app for people with epilepsy, also supports these important discussions by enabling people to monitor their epilepsy, risks and wellbeing in-between medical appointments so they can seek help sooner if risks are rising or their epilepsy is negatively changing. 


If you would like more information about epilepsy risks, please see our webpages or contact us on [email protected]