Giving people with MS a voice: Naomi’s work as a Council member

Our Councils connect our MS community with our Board to make sure we’re doing the best work for people with MS. But what do they do and how does it make a difference? We spoke to Council member Naomi Manton about why she joined her national Council and what it’s doing for people with MS.

Can you tell us a bit about your MS diagnosis?

My first symptom was optic neuritis when I was 26. Although I wasn’t diagnosed until I was almost 30.

Then the numbness started, but I just thought it was stress or working too hard. One day I was walking barefoot and didn’t notice a drawing pin stuck in the sole of my foot. That was when I knew something was really wrong.

I was referred for an emergency neurology appointment and six weeks later I was diagnosed with MS. I was so relieved as people had always called me a hypochondriac.

How did you get involved with the MS Society?

I got involved gradually. Firstly I joined our local group, then I became a team member and set up a young person’s group.

The MS Society had been such a source of help and support to me through its forum, information and grants. My local group had even helped fund a profiling bed, which I desperately needed, and a mobility scooter.

Until this point I couldn’t get around and hadn’t left the house apart from with my husband at weekends. The scooter gave me independence and freedom, and crucially the ability to be in control of where I went and when.

I wanted to give back to the charity, so when the applications for Council members appeared, I applied. I also wanted be a voice for many people who do not have one.

What experience did you have before you joined?

Although I no longer work, I am a qualified assessor and trainer. This has given me the skills to listen to other points of view and pick out relevant details.

In my previous professional capacity I also worked with lots of different kinds of people in many situations. I feel this has helped shape me into the person I am today.

What did you hope to achieve with the Council?

I wanted to represent the views of members in my area, so people living with MS could really have an influence on the issues that mattered to them.

I realised that our geographical area was under-represented too and wanted their opinions to be heard. I had personal experience of these difficulties and was spurred on by this.

What has the Council achieved since you’ve been on it?

We were awarded a Big Lottery grant to employ four specialist Information, Advice and Advocacy staff in Wales. We’ve set up a fundraising sub-committee to support the committee on a wider scale, and a group to address the lack of MS nurse provision in a particular area.

We’ve also given a voice to a large geographical area that was widely under-represented.

What’s been your proudest moment with the Council?

I was very proud to be invited to 10 Downing Street. Although, maybe surprisingly to some, this was not my proudest moment.

My proudest moment was when I had the opportunity to make a presentation to the director and members of our regional Health Board. I’m so proud of it, because it actually had a benefit.

The Board were able to see my experience and hear from me, and others who’d given me feedback. They really took these issues on board and used their influence to address the issues at hand.

What does being on the MS Society Council mean to you?

The Council means a great deal to me. I am privileged to have been elected on to it, and hope that we have a very real impact for people living with the effects of MS.

It’s an opportunity to represent the voices of people who may otherwise find themselves unheard.

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