Whatever you can do, there's a role for you

I consider myself lucky, as although the evidence of MRI scans suggests I’ve lived with multiple sclerosis for years, it wasn’t until I was 59 that a doctor first suggested I could have MS. I was diagnosed with primary progressive MS in May 2022. 

I was vaguely aware of MS but my overwhelming feeling was one of relief when he said it wouldn’t kill me. He explained it was an inflammation of the cerebellum. 15-year-old me, who was a Ramones fan, was delighted I was living their song Teenage Lobotomy (Guess I’m gonna have to tell ‘em that I got no cerebellum).

I’d worked as a civil servant at the Ministry of Defence (MOD) in the UK, and in the USA, Cyprus, Iraq and Afghanistan. I knew I’d have to take ill health retirement, but I had lots of experience and abilities to offer. Volunteering with the MS Society seemed the logical next step.

Volunteering on the England Council

I saw that the MS Society were looking for people to serve on the England Council. We go out and talk to people to make sure we amplify the voice of the wider MS community. Our new chair, Matt, is great. He’s reorganised us and we’re more focused. 

The Council has an annual plan measuring our engagement with the MS community, capturing the issues raised and reflecting these upwards to the Board of Trustees. We also represent the MS Society at group celebrations and fundraising events. I love getting out and meeting people albeit only in Hampshire, given my mobility issues. 

We’re looking at our plan for 2025. For me, the focus will be making sure people living with MS aren’t marginalized or ignored. In particular by any proposed changes to the PIP process. 

I’d also like to see an end to the postcode lottery for access to treatment. I’m really lucky to live five miles away from Southampton General Hospital, a leading neurological hospital in the UK. But it can’t be right that I have the support of a dedicated team of doctors and nurses, as well as the opportunity to participate in the Octopus trial, when people living even 30 miles down the road don’t.

Campaigning for change

I’ve been involved in MS Society campaigning. I’ve worked with the Policy Team on the PIP campaign (I had to go to appeal to be awarded mine so I know the system’s broken) and the manifesto for the General Election. 

I was delighted to be asked to be part of the team delivering the open letter to Downing Street last year. It was brilliant to develop the letter to the new Prime Minister, calling for a fairer and better deal for people living with MS. Having been a civil servant working across government, it was a bit ‘gamekeeper turned poacher’. But I know how governmental processes work so wanted to put that to good use.

In 36 years at the MOD, I’d never been to Downing Street. But after two years with the MS Society there I was, hopefully making a real difference. On a personal level it was hugely satisfying. 

In October 2021, I was on my way home from a reception at the House of Commons to mark the evacuation from Kabul. Despite being teetotal I was walking as if I had been in the pub all afternoon. As I struggled to cross Westminster Bridge, three young men laughed at me and my struggles. I felt I’d gone from hero to zero in a matter of minutes. 

Fast forward three years and, with my trusty steed (a rollator), I was able to get across the bridge. It was a struggle, and I had to sit down and rest a couple of times, but no one laughed. My campaigning work is my greatest achievement as an MS Society volunteer.

Connection

I also volunteer as a Communications Volunteer in the MS Society’s Southampton Group, and as a Befriender. I see my comms role as making sure group members (and their own support group of family and friends) are aware of what’s available to them and encouraging them to try something new. I also share news about research and potential new treatments.

Being a telephone Befriender’s about listening and making sure you’ve understood. Everyone’s MS is different, as is their MS journey. I’m late to MS – I was 60 when diagnosed - so there’s much for me to learn. Befriending really helps me with that. And from the connections I make through the MS support group I help to manage on Facebook, I know how important social networks and friendships are. I like to think I’ve made a positive difference. 

My local volunteering’s all about the individual and how you can help them improve their lives. At a national level it’s more strategic - about issues and improving lives more generally. While this is my comfort zone, I’ve greatly enjoyed the challenge of local volunteering and being more personally engaged.

The benefits of volunteering

The mental health benefits of volunteering are huge. As I left Afghanistan in 2021, I knew I needed a change. I didn’t realise that the change would be MS. It’s not what I would have chosen, but it’s the hand I’ve been dealt. I need to play it to the best of my ability.

I’m proud to volunteer and use my skillset to best effect for the MS community. Whatever you can do, there’s a role for you. You’ll be part of a great team. You’ll meet some great people. And you’ll make a real difference to someone.

Volunteer with us