SUDEP Action

Making every epilepsy death count
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Latest COVID-19 and epilepsy research shows rise in risks and drop in access to services

Research recently published in Epilepsy & Behavior shows people with epilepsy are at increased risk due to the impact the COVID-19 pandemic has had on epilepsy services and the wider community.

The COVID-19 pandemic has had a significant impact on the lives of individuals and communities across the globe. People with epilepsy are no exception, with many people experiencing changes in their day-to-day routines, access to healthcare and increased exposure to seizure risks.

SUDEP Action, working in collaboration with the University of Oxford, have led research to understand this impact since April 2020. With the help of SUDEP Action supporters, healthcare workers and the wider epilepsy community, the charity have gathered the experiences of over 2,300 people with epilepsy and their caregivers.

Because of this valuable information shared with the project, the project team were fortunate to showcase this information in Epilepsy & Behavior, where data was published data from people with epilepsy, based in the UK. 

Key findings:
  • 40% of people reported changes in their health during the pandemic. Such as: changes in seizure frequency, sleep disruption and mental health challenges. A small number of people however found slight improvements in health when working from home.
  • Disruption to healthcare services was experienced by over a third of respondents, 8% had a specialist epilepsy appointment cancelled.
  • 65% of appointments happened over telephone during the pandemic. However, many respondents indicated that they preferred in-person appointments, particularly when experiencing additional disabilities such as autism and hearing impairments.
  • Finally, the survey showed low levels of risk awareness, with only 15% of respondents having discussed SUDEP in the last 12 months. Added to this, 20% of respondents had not engaged in any conversations about the main epilepsy risks during the past 12 months.


This research has produced important evidence for the need to increase safety measures for people with epilepsy in order to help them reduce risks and to help prevent avoidable epilepsy deaths. This adds to the concerns raised in SUDEP Action’s Lives Cut Short report on the urgent need for epilepsy services and care to be prioritised, despite the ongoing pandemic.

The Charity, and the research partners we collaborate with, will continue to expand the knowledge base on epilepsy risk, helping to strengthen our arguments for the need for urgent action to be taken to prevent SUDEP / epilepsy mortality. 


We are committed to making sure every voice is heard. If you're interested in contributing to our research on COVID-19 and epilepsy, visit our webpage for all the details on our international surveys.

If you would like more information on managing epilepsy risks, leaflets and our FREE safety tools, visit our Epilepsy and Risk pages.