Our Policy & Campaigns Officer, Rona Johnson provides results to our survey looking at how COVID19 has impacted people with epilepsy.

Like everyone across the world, COVID19 has impacted our lives in more ways than we could have imagined.

Epilepsy Scotland’s policy team were particularly interested to hear how the pandemic was affecting people with epilepsy.

We wanted to understand the level of impact COVID19 was having on the epilepsy community so we could feedback to the Scottish Government and health boards about their planning for people with the condition.

Also, we wanted to see if Epilepsy Scotland could be doing more to support people with epilepsy during this time.

We developed a short survey which we posted across Epilepsy Scotland’s social media channels. 125 people responded which has helped us gather enough data to draft up our COVID19 and Epilepsy report.

Overall, 44% of respondents to the survey said that COVID19 has impacted their epilepsy.

When looking at the ways the pandemic has affected people with epilepsy, four themes were consistent amongst the majority of respondents:

• seizure control
• access to specialist knowledge and treatment
• mental health
• money

Additionally, 40% of respondents to the survey said their seizures have increased. This increase in seizure activity coincides with over a third of respondents saying their specialist appointment had been cancelled.

18% said they were struggling to access their prescriptions whilst 15% said their support services have stopped.

The full report can be found here.

What now?

We have shared our COVID19 report with several key decision makers, including the Scottish Government and Scotland’s Epilepsy Nursing Association (ESNA).

Sharing this information with people in key decision making posts might change the way they consider people with epilepsy during their COVID19 planning.

At Epilepsy Scotland, we have increased and refined our COVID19 communication. Thanks to Zoom, all of our services are still running, and we are continuing to support our clients.

Next phase of research

We are keen to develop and increase our knowledge further about how COVID19 is impacting people with epilepsy.

We have drafted a further questionnaire to gather more information which we will use to feedback to Scottish Government.

The survey is anonymous and will help us to inform policy makers about the impact of COVID19 on people with epilepsy.

If you would like to take part, the questionnaire roughly takes three minutes, please follow this link.