“Volunteering with the MS Society has been truly incredible for me”

I’ve officially been living with primary progressive MS (PPMS) for about eight years. But we all know that MS doesn’t suddenly begin with a diagnosis. I think I’ve probably had it for about 20 years.

I had lots of symptoms which seemed odd taken in isolation but made sense when taken as a whole. It took two years to receive my diagnosis – they thought I had ME. Until the observant ME consultant noticed that my vision was affected. Eventually, due to incapacity, I left my job running the York University branch of the University and College Lecturers Union in 2017.

Finding my people

I got so bored. I tried hobbies. I knitted, crocheted and coloured in as if my life depended on it. But it wasn’t until I joined the MS Society’s Research Network, and the UK MS Register that they fund, that I found something I could apply my mind to.

I can’t remember now which came first, but by 2019 I finally found my people, as the saying goes. The MS Society makes sure that as many of its endeavours as possible are subject to a public involvement process. This isn’t the same as physically taking part in trialling a new drug. It’s about helping that drug trial come into being – by ensuring that it’ll be fit for purpose for people with MS. This can’t be done without involving people with actual lived experience of the condition.

Being a member of the MS Research Network has enabled me to get involved in a few different public involvement projects. I attend a few committee-type groups: the Research Network Steering Group, the UK MS Register Brainstormers Group and the Octopus Communications Co-ordination Group. I also lay-review funding grant applications for the MS Society, and I’ve been involved in reviewing and editing online content, conference presentations and literature.

Brainstorming for MS

The Brainstormers Public and Patient Involvement Group meets bi-monthly to discuss MS news and topics. The organiser from the MS Register offers up new topics for discussion and projects which need our help and advice. We all have personal experience with MS and some members also have skills from business or other volunteer work. We’re always eager to assist with MS Society projects and enjoy taking on new challenges.

Shaping the future

Octopus, short for Optimal Clinical Trials Platform for Multiple Sclerosis, is game-changing in terms of how we approach drug trials for MS. Instead of the usual one-after-the-other testing of drugs, Octopus lets us test multiple drugs at once if they all fit the bill. And they’re focussing on treatments for progressive MS, which is great because there are currently limited treatment options in this area.

Getting involved with Octopus let me have a say in shaping the research, by sharing my thoughts with the development team. I’m hoping that’ll help the study consider what MS patients and the public think is important. This might lead to treatments that are more focused on patients and work better.

 Being involved in a clinical trial has given me a fuller understanding of how a drug treatment ends up on a NHS prescription list. It’s so educational and enriching — I’d recommend the experience to anyone. Getting involved in research in this way can connect you with other like-minded individuals. And it made me feel my experience as a person with MS was of value.

Having a positive impact

I'm so glad I'm able to be involved with the MS Research Network and help to make a difference in the ongoing battle we all have against MS. I recently managed to somehow be awarded an MS Society Volunteer Impact Award, for which I nearly died of pride.

I count myself lucky that the MS Society is really committed to making sure everyone has a chance to be involved in their work. They're very understanding when people need extra support. 

I'm not always the best now at keeping track of time or schedules. And sometimes I need a little extra time to complete a project. I'm really grateful for their understanding. And for the fact that I could attend all the meetings online. It meant I could do something worthwhile without having to be there in person. If I’d had to travel, I couldn’t have done it.

Volunteering with the MS Society has been truly incredible for me. It’s restored my sense of self-worth. And shown me that I can still have a positive impact, which is something we all strive for.

I wholeheartedly encourage volunteering — there are many ways to contribute and make a difference for those of us living with MS. There's no need to feel anxious or unsure. The experience will only enrich you. And let you make a meaningful difference in your own way.