Latest COVID19 update from our CEO, Lesslie Young

This update was written in advance of our First Minister’s review of Phase 1 of the Scottish roadmap. I am sure we are all keen to see the easing of more restrictions and a return, albeit cautious, to a more natural way of day to day life.

During times of great uncertainty, it is wise to stop and take stock of what positive achievements have been made collectively and individually. It gives much needed perspective. Since the start of lockdown and during Phase 1, Epilepsy Scotland has never lost sight of why we are here, who we represent and what we needed to do to continue our support to those living with epilepsy especially when we knew some would be finding living with their condition even more stressful than usual.

I was and remain immensely proud of Epilepsy Scotland and my team who adapted so quickly to the regulations imposed in March. The level of dedication and commitment to providing the best possible support, the creativity, the flexibility in approach and the obvious willingness to go above and beyond what is asked of them is heartening to say the least.

The difficult decision was taken to furlough eleven members of staff. I am pleased to say we have been able to bring one staff member back to work since then. I keep in regular contact with those who are on furlough, to ensure they are well and continue to feel a valued member of the team although not working. Each contributing to the longevity of Epilepsy Scotland and the all the support we will continue to provide.

As you who regularly read these updates will know, we were unsuccessful in securing funding from the Scottish Government’s Third Sector Resilience Fund in April. However, I am delighted to tell you we have been successful in gaining significant support from other COVID19 response funds.

Throughout, our amazing supporters have been right at our side. Literally, hundreds of you have participated in online bingo, tasting events, quizzes and raffles as well as the many of you who have made donations or taken on virtual fundraising challenges. You too are valued members of our team and I thank you for all your efforts.

Although most of our planned fundraising activity has been cancelled, postponed or replaced with a virtual alternative, work in all other departments has not slowed down during the coronavirus pandemic. Quite the opposite.

Our Helpline and Information service continues to be available between 10am and 4.30pm Monday to Friday and is now offering virtual information events in those areas we had planned to visit in person. The service was extended to offer a check-in service for those with epilepsy who are feeling especially isolated or vulnerable. Since lockdown began our Helpline has received over 430 enquiries ranging from concerns over how coronavirus might affect someone with epilepsy, to being diagnosed during COVID19 and many non-COVID19 related questions too.

Our Youth Groups are currently meeting online three times a week, adding an additional meeting, and doing a variety of interesting things including: origami, learning sign language, group cookery, tower building, a scavenger hunt and craft sessions. New members have been able to join the group too, quickly making new friends and feeling the positive impact the groups have on young people with epilepsy. I take my hat off to our Youth Workers for their creativity and how it has enabled so many young people to navigate the lockdown so well.

Our Wellbeing Service based in Glasgow has continued to meet remotely with group sessions, one to one sessions with our Wellbeing workers, counsellors and our breathing and relaxation classes all going ahead with great feedback. We have supported 31 people through this service since lockdown began. We have continued to refine the way we deliver these services virtually which we hope will allow us to broaden our reach earlier than originally planned.

The Epilepsy Scotland policy team continue to work closely with Scottish Government and all health boards. The team produced a COVID19 survey that helped to shape our report to the Cabinet Secretary for Health and Sport.

Finally, we have adapted our many training courses to be delivered online. More than 200 people have taken part in our Managing Difficult Epilepsy, Understanding and Managing Epilepsy courses as well as taking part in our free #TalkEpilepsy courses since 23 March this year. All respondents have rated the courses either excellent or very good.

Over the past 65 years we have had to adapt to various situations, overcoming many challenges as an organisation to be where we are today. This situation is no different. We will continue to support those affected by epilepsy during the next stages of Scotland’s roadmap whilst working on our own plans to return our services, people we support and staff and volunteers back to a new normal, as soon and as safely as is possible.

Thank you for your continued support and generosity when we need it most. Stay safe.