Our Director of Operations, Pauline Stansfield looks at how Epilepsy Scotland continue to support staff and communities throughout the pandemic.

People with epilepsy are at the centre of everything we do here at Epilepsy Scotland. At the start of the pandemic our Senior Management Team met twice weekly to look at how we could best support staff and people who need us.

We have initiated the following activities to help better support people with epilepsy throughout COVID-19.

A COVID-19 survey

Our Policy Team conducted an in-depth COVID-19 and epilepsy survey to gauge the impact COVID-19 has had on people’s health and wellbeing and to enable Epilepsy Scotland to produce responsive information and services.

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.

Our recently updated survey is available here.

A new COVID-19 ‘check-in service and online events

In April we launched a new “check-in” service where vulnerable people can register and we will get in touch with them regularly to make sure they are coping with self-isolation, anxiety and any epilepsy issues.

This service continues and we have also launched zoom coffee mornings so people can meet up in a safe digital space and talk about the issues that are affecting them.

More about our helpline and the check-in service can be found here.

Free training

Throughout the lockdown in Scotland we offered free #TalkEpilepsy awareness training to support families who may not have full access to their usual support services and key workers who have limited time to invest in training right now.

We ran 2-4 per week and were the only charity in Scotland delivering free online epilepsy training.

More information on our #TalkEpilepsysessions can be found here.

An extra weekly online youth group session

Our Youth Service in Edinburgh has 37 active members aged between 11 and 21, all members have epilepsy and some members have a learning disability as well.

Our Youth Development Worker is currently offering a blended approach with some face-to-face work where restrictions allow combined with digital and telephone support, for instance groups via video conferencing with activities including quizzes, group cookery sessions, a scavenger hunt, crafts, and group discussion.

Due to requests from members we are offering three sessions a week instead of the usual two.

More about our youth work can be found here.

Producing COVID-19 specific information

Throughout the pandemic we have provided information on the evolving situation for people with epilepsy.

Our Communications team continue to work together to keep information up to date and have produced a COVID-19 and epilepsy factsheet covering specific topics like availability of epilepsy drugs and dealing with anxiety and stress.

In addition, we have provided useful updates on drug shortages and benefit changes.

What next

There is no doubt that COVID-19 has changed the way we communicate as an organisation.

One of the surprising things is how quickly staff and people who access our services have adapted to meeting in a digital space, not to mention the costs that have been saved by staff in different locations meeting digitally rather than traveling across the country.

The biggest impact has been with our Wellbeing and Youth Services, people that have joined the groups since the start of pandemic have reported that it has been a good way to ease into the group and less intimidating than meeting face to face for the first time.

We have also been able to welcome members from further afield and are even planning a meet up the Epilepsy Warriors Foundation in Malawi!

In the future we will look toward a blended approach and love them or loathe them Zoom meetings are here to stay.

Supporting staff

As the pandemic and uncertainty continues, it is important for us to look after the mental health of staff and ensure they have the support they need to do their job.

At the beginning of lockdown, we set out guiding principles for working from home inspired by Auckland council, as follows:

• We are not working from home, we are at home during a crisis, working for people affected by epilepsy
• Our physical and emotional health is more important that anything right now
• We will be kind to others and not judge how they are coping
• We should not compensate for lost productivity by working longer hours
• Also, we will be kind to ourselves and not compare how we are coping with others
• Our success will not be measured in the same way it was before. We are creating a new normal together.

Helping staff during and after COVID-19

We wanted to stress that resilience is about bouncing back, not carrying on regardless.

I have been inspired by the staff of Epilepsy Scotland who have all gone the extra mile to ensure our organisation and services are there for anyone who needs us.

To help support staff we have the following in place before, during and after COVID-19.

• We have a free councillor available for all staff
• A mental health charter is in place for our volunteers
• We encourage staff to de-brief with each other. Our Wellbeing and Helpline and Information Officers have counselling skills, ASIST suicide prevention training and vicarious trauma training
• We have been utilising Zoom and have weekly team meetings to keep in touch as well as our ‘coffee roulette’ where each week selected staff are matched with someone else in the organisation for a one to one catch up
• In 2019 we became a living wage employer and this #LivingWageWeek continue to honour this pledge as a symbol of responsible business practice. Living Wage accreditation celebrates employers that choose to go further than the government minimum.