Epilepsy and COVID-19… One year on

Our Policy Assistant, Anna Telfer, reveals the results of our COVID-19 has been affecting people with epilepsy survey and provides information on our Epilepsy and COVID-19, One Year on Report.

Over the past year, COVID-19 has had a massive influence over our lives. For some this influence has been significant and impacted them more widely than others.

It is vital that we take time to fully understand how the pandemic has, and continues to, impact people with epilepsy.

During the first COVID-19 lockdown in 2020, we launched a survey to find out how the pandemic was affecting people with epilepsy. We used the results to help shape our services in response to the pandemic.

We also shared the results with MSPs and other key decision makers to ensure people with epilepsy were considered in policy development.

This year, we relaunched our survey, seeking to understand how COVID-19 continues to affect people with epilepsy.

While we are still living with restrictions, a lot has changed over the past year and we wanted to gather an updated understanding of how people with epilepsy were being impacted by the pandemic.

We used the survey responses to inform our Epilepsy and COVID-19, One Year on Report.


The Epilepsy and COVID-19, One Year on Report

The report explores the five main themes which emerged from the survey:

The report also provides a comparison of how things have changed over the past year, revisiting the results from our survey conducted during the initial COVID-19 lockdown.


Headlines from the report

57% of respondents said the pandemic has affected their epilepsy, and 44% had seen an increase in seizure activity during the pandemic.

These percentages are higher than those revealed in our initial survey in 2020 (which were 44% and 40% respectively).

Moreover, the pandemic has impacted the mental health and wellbeing of 80% of respondents.

The survey also revealed that 44% of respondents have had their specialist appointment cancelled, despite noting an increased need for specialist support during the pandemic.


We will use this report to champion the needs of people with epilepsy

The survey and report highlight the critical need to prioritise people with epilepsy in all stages of recovery from the pandemic.

We will share the results with key policy makers, raise the voices of people with epilepsy, and lobby for epilepsy to be considered as a priority in service recovery and remobilisation.

We will also use the valuable to feedback to further shape our information to best suit the needs of the epilepsy community.

To read the full report, please click here.