Our Policy and Campaigns Officer, Rona Johnson, provides an update on our impact of COVID-19 and Epilepsy report and the results of our most recent survey.

At the end of May, we published our COVID-19 and Epilepsy report. This report details the ways in which people with epilepsy have been impacted by COVID-19.

The information we gathered from our first questionnaire was really insightful and was picked up by the Scottish Government and MSPs in Parliament.

We wanted to understand how this experience of the pandemic might have changed and decided to publish another questionnaire.

In our original survey, 44% of respondents said COVID-19 had impacted their epilepsy, this increased to 62% in our recent survey.

The overwhelming number one impact of COVID-19 on people with epilepsy was increased feelings of stress/anxiety and depression. 63% of respondents to our survey had noted a deterioration in their mental health.

Many said they felt isolated due to social distancing. Several respondents said they were more anxious out of fear that COVID-19 will increase their seizure frequency.

Over a third of respondents had experienced increased seizure activity and over a third had had their specialist appointment cancelled.

18% were still struggling to access their prescription or medication.

Virtual clinic appointments

At the beginning of the pandemic many non-urgent clinic appointments were cancelled. Health boards across the country quickly adapted to holding appointments virtually.

56% of our respondents have managed to access a virtual appointment with their clinician. 38% said they think this method is working well, 10% said it is not working well whilst 51% said they did not know.

Many said they thought this was a good method to ensure clinical appointments go ahead during the pandemic. However, they said they much preferred to speak to their clinician in person.

The future

Unfortunately, COVID-19 is not going away anytime soon. In their recent Programme for Government, the Scottish Government said they are planning for remote Near Me appointments to be the default.

This means instead of seeing your neurologist or epilepsy specialist nurse face to face, appointments will take place via video or over the phone. It is our understanding, where remote appointments are not appropriate, face to face options will be available.

What are your thoughts on this? Send us a message on social media or email  rjohnson@epilepsyscotland.org.uk.