Epilepsy Futures reacts and responds to COVID-19

"The third sector has a long-established reputation for being able to respond and adapt."

Epilepsy Futures is a successful self-management programme, run by Epilepsy Connections, a charity which provides a range of services  to people living with epilepsy and their carers (this link will take you away from our website)  and funded by the National Lottery Community Fund

Epilepsy Futures has been delivered to small groups of people with epilepsy in 24- week long blocks since November 2017, with each intake of participants accessing activities in our Glasgow base, the Mitchell Library, Project Ability, and other venues in the city. Lockdown in March ended this model.

People with epilepsy often experience stigma as a result of lack of public understanding and acceptance of epilepsy, with resulting feelings of isolation and social anxiety out of fear of having a seizure in public.

Some people with epilepsy have told us that they have experienced less anxiety during lockdown as it has meant there are fewer reasons to be out. However, the sense of social isolation is still strong, as is the lack of camaraderie and supportive presence of others who “get” their epilepsy.

Epilepsy Futures’ success largely lies in the peer support offered to each group as they embark on a range of discussions and activities aimed at increasing self-management skills, improving well-being and resilience and building self -esteem and sense of connectedness. Additionally, we use volunteer “Peer Mentor” volunteers, who are graduates from the programme, to sit in on every session and serve as a voice of authenticity in using self-management skills.

For most of our participants, taking part in Epilepsy Futures is the first time they have been in the company of other people who truly understand what it is to have epilepsy.

Lockdown meant that our fifth group having to end ended early in March with 7 weeks of the programme left to run. Ongoing telephone support was offered to Group 5 participants, though it is fair to say that they had more important priorities to deal with during the early weeks of lockdown.

The programme was effectively stalled as we tried to reconfigure what had become a highly effective model of group and experiential learning. Every group in the past has benefited from Epilepsy Futures being an in-person, face to face experience, so adapting to an online version posed challenges.

With Group 6 due to start at the end of May 2020 we made the decision to trial using the Zoom app, to host our 3 days per week sessions. This required spending time with participants to talk them through what the Zoom app is, asking if they felt comfortable using it and if they had the device, the data connection and the privacy to join in a 3 day per week group session each of about 1.5 hours.

Luckily, we managed to get everyone comfortable with using Zoom, helping those who didn’t have the ability to connect, and tutoring them all in the use of Zoom through weekly calls to our Project Coordinator. We managed to get the group started as planned on 26^th May and we have worked with other partners to try to adapt our programme to run virtually.

Some of these adaptations include

• Ordering art materials to be delivered to all participants, so that our Art programme can run with input from a tutor rather than onsite at a city-centre facility
• Working with our Qi Gong instructor to deliver online sessions from her home
• Using short YouTube videos to spark discussions on topics of mental wellbeing
• Creating an online evaluation form sent each week, rather than using paper ones each session
• Sending a weekly summary, capturing the key points of the topics that week, along with the links to YouTube videos so that people can watch again at home, and copies of any slides

We are learning as we go along but even though Group 6 have not met face to face, the feedback has been positive, with participants feeling that they have created a positive new routine and a valuable way of connecting to others who share their common concerns and experiences.

The third sector has a long-established reputation for being able to respond and adapt, to fill niches that statutory organisations are unable to. While some of other our other routine social opportunities such as our monthly ten bin bowling session had to stop,

Epilepsy Futures has proven to be a service that can be adapted to be delivered remotely. Having excellent working relationships with external facilitators has enabled us to find new ways to deliver our programme.

This article was contributed by Peter Dale, Epilepsy Futures Coordinator