If you have MS, you may feel that your local social groups are a lifeline. They represent the chance to get together with other people who understand what life is like for you, discuss tips and tricks for coping with MS, and also find friendship along the way.
During the coronavirus lockdown, these social groups have ceased meeting in person, leading to a potential increase in loneliness for many people with MS. Norma McFarlane, Founder and Director of The Shane Project in Edmonton, spelled out the changes for the MS community she works with.
I do worry that the people we support are missing out on social activities and becoming more isolated. I think it is so important for people with MS to feel connected to their community and to be able to get out and about on a regular basis. We have had to stop our meetings and replace them with a monthly tele-conference, but it is just not the same. Not everyone can access them, and we have to stick to a time limit.
At Shane Project meetings before COVID-19, everyone was welcome to come and to stay for as long as they wanted. They could eat lunch together and relax, which could be the only social interaction they would have all week. Norma and her team devised an extensive programme of speakers and visits out, such as Tai Chi and going boating on the lake at Hendon. They also invited therapy and care students from local colleges to come along and meet the MS community, so they could learn directly from them about real life with MS.
Keith Hunt runs MateS, a monthly meeting for people affected by MS that runs in a local sports facility near Bournemouth. He is also concerned about the effect that lockdown has had on his local MS community.
I have had to cancel two meetings, and I’m concerned that even once the venue re-opens, the group members might still be worried about meeting in person again. The local MS Therapy Centre is remaining shut for the time being as well, and so there’s not a lot going on now.
Like many organisations around the country, Keith is looking to video conferencing software such as Zoom or Skype to allow people to reconnect again. However, he’s concerned about hosting a meeting and ensuring group members are safe online.
The Shane Project came to the end of three years of National Lottery funding in March, and so Norma currently relies on volunteers rather than paid staff. She faces a challenging time restarting activity safely when she can.
I know there is not as much money out there for charities now, and I am concerned that the small groups like us might find it hard to get the funds to keep going after lockdown. Without us being active in the community, I think people with MS will be easily forgotten.
We’ve collected some useful links for you here, whether you are looking to join a local group in your area, or whether you are looking for advice on how to keep your own group running safely.