Feeling part of a community is empowering
Thomas was diagnosed with relapsing remitting MS in February 2022. A year later he joined the MS Society as a Cymru Council member and Group Coordinator for the Cardiff and Vale Group. He tells us what he enjoys most about his different roles and why he feels passionate about representing the MS community.
I started volunteering with the MS Society in 2023, a year after being diagnosed with relapsing remitting MS. My main symptoms are MS hug (a horrible squeezing, burning, and painful sensation in the upper torso) and occasional fatigue.
In my working life, I’m a lecturer at Cardiff University and work in academia. Because of my health, and my teaching and public speaking background, I was keen to help others with MS in my area of Cardiff/Vale in Wales, and beyond.
Joining the MS Society
I initially became a Cymru Council member, followed by the Group Coordinator for the Cardiff and Vale Group. I heard about both roles via the MS Society website but also from attending local south Wales MS Society events.
Those events were always so friendly and welcoming, and it really helped me with handling my MS diagnosis. I wanted to give back to the MS Society nationally and locally, and help others living with MS by volunteering.
Representing the MS community
For these reasons, I became a member of Cymru Council. I felt I have the skillset from my professional career to help communicate and share ideas from the wider MS community.
I wanted to help other people with MS not feel alone, and feel part of a group raising key points their members are experiencing, to make their lives with MS the best possible.
With Cymru Council, we bring together key feedback on what’s working well for people with MS in Cymru, and where improvements could occur. This includes the NHS and wider medical services available to MS patients. We aim to ensure the best possible experience for people with MS across Cymru, no matter where they live.
Everyone should have access to excellent services
I’m passionate about local MS NHS services being equally accessible in health boards across Cymru, but also further afield. We work to ensure best practice is shared across our groups and NHS areas. We want as many people in Cymru as possible to benefit from high-level and excellent services to help them live their best life with MS.
Helping to build a community locally
I’m also the Group Coordinator of the Cardiff and Vale Group, which has really got momentum now. We have a fantastic group of volunteers who are helping to arrange a series of arts/crafts, coffee mornings and other events. It’s been great to meet new people and share our common, but also different, experiences. I find it a very cathartic experience.
I find the volunteering role very rewarding, particularly where our group provides grants. These help cover exceptional costs/items needed to help people manage their MS, which they might not otherwise be able to afford.
Utilising my skills to run a successful group
I would say leadership skills are key to running a group. But that doesn’t mean what I feel is a stereotypical idea of a leader – someone trying to have all of life’s skills and telling others what to do. I’ve learnt leadership is often knowing where others might have more expertise than you in an area and delegating to them.
For me, that’s meant we’ve recruited various volunteers to help run our group based on their skills. I delegate to them as much as they want and that allows people freedom to use their skills and try out things to see what works for them. That I feel creates the best environment for everyone to thrive.
Being organised is also key. Listening and gathering feedback is important too. It’s helped us to try to arrange and plan various types of events, which are as inclusive as possible for people with MS and their families.
Juggling my work and volunteering
Luckily, to manage my health, I work condensed weeks as agreed with my employer. The extra time here and there enables me to manage both workloads and enjoy doing so. Planning ahead, as I’ve always done via a diary, means I can keep on top of both roles.
Feeling part of a community is empowering
Working with other people and hearing their feedback and experiences is one of my favourite things about volunteering.
It means I’m not just speaking about my experience of MS and the services I’ve accessed. And that’s so important because personal experiences of MS do differ quite significantly.
I definitely feel it’s given me greater confidence to speak with, and share the ideas of, a community of people – in this case with MS. I’ve always been a big fan of building communities of people to come together and realise we are inter-dependent on each other. My experience of the MS Society volunteering validates that perspective. Feeling part of a community is very empowering.
Making a vital contribution to society
I’d highly recommend becoming a volunteer. It’s a chance to build, and become part of, a community of people who often become friends. It’s also a chance to feel you’re helping others and making a vital contribution to society. Seeing the enjoyment from different activities our MS community gets, and knowing you’re making a positive contribution in someone’s everyday life, is very satisfying.