Having a ‘light touch’ volunteer role is a way I can remain useful to our group

I’m 79 years old. I was diagnosed with MS in 1997 when working full time as a social worker. Despite fatigue and problems with mobility, I was determined to stay at work as long as possible.

After three years it was clear I was struggling. I was being monitored by Occupational Health, and one Friday lunchtime went for a review. I admitted how tired I was, and said I thought I ought to consider retiring on ill health grounds. I’d envisaged having a month or two to organise my work. But I was told I wasn’t to return to the office that afternoon or at all. According to Occupational Health, I was either fit to work or not — there were no half measures.

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Making use of my skills

I wasn’t fit to continue working full time in a stressful and demanding job, but knew I could use my skills as a volunteer. I became involved with the South Devon MS Group as a Support Volunteer, and also trained as a volunteer for Citizens Advice. Since then, I’ve had a period as Chair (now Group Coordinator) of our group and as National Chair of the Providing Support Forum.

In my role as a Citizens Advice volunteer, people affected by MS were coming to me informally for advice on subjects such as benefits and employment. So, in 2006, the South Devon Group set up a partnership with Citizens Advice to fund a specific adviser (not me) to concentrate a few hours a week on people with MS. This remains one of our most valued services, along with our physio-led exercise classes.

Sourcing funding for this has been essential. So I assumed the role of grants fundraiser, writing applications to trusts and other charities which have brought in many thousands of pounds. However, now that more volunteers have come on board for our group, I’ve decided to step back from most of what I was doing. I feel that younger people will have more energy.

Getting the facts straight

Over the years, government rhetoric about people of working age claiming benefits has been increasingly discriminatory and misleading. My own experience has shown me that remaining in paid work isn’t always possible. Then came the recent general election campaign — and yet again phrases such as ‘sick note society’ and ‘there are too many people claiming benefits’ were being bandied about.

I was frustrated and angry, and decided to contact the BBC through ‘Your voice, your vote’. I wanted to state a few facts rather than fictions about the need for many people (including those with MS) to claim certain welfare benefits.

Somewhat to my surprise, I had a phone call the week before the election asking if I was willing to be interviewed by Radio Devon. The original request would’ve given me about half an hour to prepare, but to my relief I was given another slot on the Monday morning. I was interviewed over Zoom, and the piece was recorded for broadcast a couple of days later. I spent a lot of time over the weekend making notes on what I hoped to convey. The interviewer was warm and friendly, and did everything possible to make me feel at ease.

Speaking up for MS

I’d been interviewed several years ago for local television and radio about the failure to approve all the drugs licensed for MS treatment, such as fampridine and Sativex – and always get excellent support from the national Campaigns Team and Press Office to make the most of these opportunities. It’s a bit nerve-wracking, but doing the interview is actually far easier than you think it’s going to be. There’s often a much longer piece recorded than is actually used, and the broadcaster makes sure the important points are included and the waffle or hesitancy edited out!

With a new government now in place, I’ll contact my MP to highlight some of the concerns of people with MS — including access to drugs, problems with PIP applications and poor understanding of hidden disabilities.

Retaining a feeling of self-worth

Having a ‘light touch’ volunteer role as an older person is a way I can remain useful to our group without as much responsibility as previously.

I’ve been a volunteer for over 20 years. I can honestly say it’s been incredibly important in helping me retain a feeling of self-worth, which had been eroded by having to retire from my professional job. One achievement I can look back on with great pride was our group’s successful application for Big Lottery funding. We were awarded £95,000 to cover five years of costs for our Citizens Advice service. Over that period, the service gained almost £1,000,000 overall for people affected by MS.

To anyone considering volunteering — go for it! Of course it’s good to help other people, but you get so much satisfaction for yourself!