Rebuilding the Retford Group
Barbara shares some of the innovative and creative things her group has done to improve support for people with MS in the area. And how much fun they’ve had in the process!
I’ve always lived a busy life. My professional background was in caring. I fundraised for various charities and assisted with adult literacy classes. I also wrote and directed some off-beat, parochial pantomimes. Sadly, this all came to an end when I had a bad bout of fatigue and optic neuritis from my relapsing remitting MS.
I found giving up my work and interests hard to come to terms with. I felt like I’d lost my identity. I don't think we realise that we all fit into the community one way or another. So without that, while I had my family, it became very lonely.
Eventually I made inquiries about my local MS group in Retford and went along for a coffee morning. There were only four of us there! The get-togethers weren’t well attended or much fun. Quite a few of the committee (which is now known as the Coordinating Team) had left so I joined them as a volunteer.
Making positive changes
When the MS Society introduced the Group Coordinator role I jumped at the chance! I knew the group wouldn’t continue for much longer unless changes were made. And I wanted there to be more support for people with MS in the area.
The first thing I did was make the location of our meeting venue more accessible. It’s now nice and light and has full accessible facilities. Importantly, it has free, ample parking so people can attend more easily. I also managed to expand the structure of the group, creating better volunteering opportunities.
Getting active
I wanted to offer more physical activities and emphasise the benefits of exercise, starting with pilates run by a neurophysiology therapist.
We wanted to try swimming, but it was difficult in a public swimming pool, or even a rehab one. I tried it and I don't know what some people were rehabilitating from, but goodness, they were like Olympic swimmers! So very cheekily I got in touch with the management asking if we could have a private session. I had to ask five times! That was 15 years ago and our session is still going strong. We’ve even bought a hoist for anyone to use.
We’ve introduced a breath awareness class which is funded by Bassetlaw Council. We fund Tai Chi and seated dance. And, in partnership with Barnsley Premier Leisure, we cover the cost of 12 weeks exercise in the gym.
We’ve also arranged archery and indoor skydiving, which was attended by around 17 of us. One person was 80 and two were in wheelchairs.
We have an annual afternoon tea. This year we’re having a Caribbean Christmas Party with steel band entertainment. We have monthly coffee mornings, and keep everyone up to date with activities through our monthly newsletter.
Support from local businesses
We’re very lucky to be supported by local businesses who help fund our activities. But it does take lots of networking! It’s amazing what doors can open by ‘chatting people up’.
We’ve created strong links with local businesses because of how we build and manage our relationships with them. It’s always worth remembering that if you don’t ask, you don’t get. What’s the worst that can happen? You get turned away? But sometimes you have to be persistent to get what you want.
I’m always humble, polite and appreciative when approaching businesses. They're the ones doing us a favour, not the other way round.
Thinking outside the box
We also do a lot of creative fundraising as a group. We held a triathlon involving people with MS. Some of our members cycled 100 miles in one day. And we have swimming and walking events.
We also have an annual fundraiser. This year it’s called `A Pre-Christmas Affair‘, with cakes, preloved decorations, guess the weight of the Christmas cake and refreshments. Another way we’ve raised money is by producing a recipe book through lockdown. It has 78 pages of recipes from local people, restaurants and coffee houses. Retford Lions and Retford Rotary Club covered the costs of printing and it’s being sold in two coffee houses.
We’ve also hosted fashion shows in a local clothes store with group members strutting the catwalk. It was great fun!
Making our presence known
We get involved in any community events that are happening. We have stalls to share information but most of us mingle with the crowd and have the best time. Our group likes to have fun! We want people to know that you can still enjoy life with MS. We’re approachable and welcoming, so often pick up new members.
We’re not afraid to have our presence known at events. Children get balloons, people bring their dogs dressed in MS Society t-shirts. And volunteers will all be donning our MS Society gear too. Our wheelchair users will tie on branded balloons to get coverage around town.
Retford has a Christmas tree festival, and we always enter a tree dressed in MS Society's colours of orange and white. We’re quite ruthless in putting ourselves out there and will take every opportunity to be involved in the community. We’ve been voted community champions by two local organisations in past years.
I’m proud of our group
A supporter once said to me, "we help ourselves keep active and we work hard to provide for others". That sums up our group. It made me feel emotional. I’m really proud of what we do as a group to support people.
I’d say my biggest achievement as a volunteer is turning the group around. We’ve gone from around 40 members (most of which weren’t actively engaged), to over 80. I’d like to think that I've made life a bit better for people with MS. What I enjoy most is the camaraderie of our members. Everyone supports everyone and I love the fun we have while doing it! We’re a very forward-thinking group.
Volunteering has had an incredible impact on me. I’ve made so many friends, it’s a confidence booster and I’m quite shameless these days. I’ve also found a hidden talent – I would have made a damn good salesperson!
For anyone thinking of becoming a volunteer, I’d say go for it! You never know what it will lead to.
