Volunteer Caroline Smith takes home our outstanding contribution award


22 January 2025

"I love volunteering, it’s given me a sense of purpose."

I’m Caroline and I’ve got secondary progressive MS. I was initially diagnosed in 2008. It transferred quite quickly from relapsing-remitting to secondary progressive, but at least I don’t wake up with the worry of relapses anymore. 

I worked as a dietitian in the NHS for 23 years but had to retire in 2013 due to MS. I was familiar with the MS Trust through my work as a dietitian, where we often supported people with MS. Shortly after retiring, I became involved with patient representation at various events and a friend sent me a link to the MS Trust’s Forward View Project and told me I should volunteer. Although I wasn’t actively looking for opportunities, I quickly realised I would enjoy volunteering.

I feel like the MS Trust has my back and not just as a volunteer. 

The Forward View project focused on mapping services for people with MS and working closely with nurses and neurologists. I was part of a steering group with three other patient representatives, providing feedback from the perspective of those living with MS. It was one of the first times the MS Trust worked so closely with patients, and we felt heard. I think the MS Trust got as much out of our and the wider community’s involvement, as we did! It was one of the first times that we (the MS Trust) had that much engagement from people with MS and the project had a significant impact on how the MS Trust developed services moving forward.

After the Forward View project, I joined the MS Trust’s Facebook group, back in the early days of the platform. The group is almost like a pensioner in Facebook years because it’s been around for a long time! It was several years until I became a moderator of the group. Before I joined the Forward view project, I wasn't involved much online because working was really hard for me, it took an awful lot of energy, and I didn’t have time or energy outside of work to spare. It was only after I finished work that I started having the energy to do more.

The sense of community is amazing and so supportive.

 As a volunteer moderator, I help ensure the rules of the Facebook group are followed, so that discussions can continue in a friendly manner, and provide support when needed. We try to encourage people to ask questions and talk about life, and the helpline also pop in to answer questions. There is a team of volunteers who look after the group on evenings and weekends. It’s a big old project that the MS Trust is involved in. 

The sense of community is amazing and so supportive. It’s a place where people can ask, "Is this normal?" and the like. Something that comes up a lot is people wondering if they should speak to their MS nurse, or how to access a physiotherapist. People just want a bit of support and many people with MS don’t know where to turn for advice. The group provides that support. I’ve been diagnosed for quite a long time and I still find that the group is really useful when it comes to people talking about symptoms because every year there’s a new symptom that I may not realise is MS. 

Whether it’s about symptoms, treatments, or managing daily life with MS, getting reassurance from others who understand is incredibly comforting.

I love volunteering, it’s given me a sense of purpose. After spending 23 years in the NHS, helping people is natural to me and it was a big thing to stop after I had to leave my career. It makes me feel useful, helping others going through similar experiences. I also learn a lot from the MS Trust’s activities, which has helped me on my own MS journey. 

I feel like the MS Trust has my back and not just as a volunteer. I can contact the helpline and can raise issues even on the weekend. I don’t ever feel that I’m left on my own. It’s a real positive about the MS Trust, that no matter what I’ve been doing as a volunteer, there is always guidance from the staff I’m working with, and I’ve even received training. It’s so nice to feel part of the organisation, a working community. Receiving recognition, like this award, is a reminder that my efforts are appreciated.

Don’t be afraid to ask questions and seek support... you don’t have to do it alone.

For someone newly diagnosed, I’d say don’t be afraid to ask questions and seek support. It can be overwhelming, but you don’t have to do it alone. If you’re interested in volunteering, go for it- we're always looking for people to review our written content because it’s so important to have the input of the MS community. Volunteering with the MS Trust has been incredibly fulfilling. It’s about learning, connecting, and making a difference.

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