After taking ill health retirement, Caroline decided to use her extra time and expertise volunteering. Here she discusses the projects her volunteering has helped shape.
Caroline's volunteering story
5 December 2022
I was diagnosed with MS in 2008 and am now secondary progressive. I was aware of the MS Trust in a professional capacity (I worked in the NHS) and used their publications and MS Decisions tool. I then had to take early ill health retirement in 2013 and had time on my hands. I started sharing my experiences and being an expert voice in various focus groups and projects in my local area that were health based, not specifically MS based. I also attended an MS Trust focus group. All of these made me realise the importance of my voice in shaping services. Then in 2015 a friend encouraged me to apply to be a lay member of the MS Forward View Project run by the MS Trust and I was successful. This was an amazing project. Those of us with MS were really listened to and shaped the project, I was so proud of the conclusions and my role in the project.
Since then I have attended more focus groups and co-production work with the MS Trust and other MS charities and have commented on publications, even being in the NICE appraisal of Siponimod. Last year I was asked to be a moderator on the MS Trust Facebook group and am mostly enjoying the experience.
I feel my expert voice is very powerful and want to share my experiences to help shape and improve services. More than that, volunteering is an opportunity for me to use the many skills I gained in my working life and my life skills in general. It is so rewarding to see projects I have been involved in come to fruition and my volunteering has made me feel useful again after giving up the job I loved. Also, through meetings, whether virtual or face to face, I have connected with so many people with MS and made some friends for life.
Find out more
- Find out about volunteering for us