Photo: Man sat on sofa on his laptop

What's it like to take part in a project?

Whether you have MS or care about someone who does, your experiences could help shape our work. 

By joining our expert by experience network you’ll be part of an online community of like-minded people. Together we’ll make sure that our services respond to what matters most to people living with MS.

Photo: Three women sitting at a table writing on sticky notes during a co-production workshop

Why should I get involved?

Caroline, one of our experts by experience, explains:

“We all have different experiences of MS - different symptoms and issues. We can empathise and understand what others are going through.

“People working at the MS Society have an understanding of MS, but they can’t really speak for us.

“Getting involved as an Expert by Experience is vital to ensure that services are focused where they are needed and actually help and support people with MS and their carers in the best possible way.

“We all need to recognise the value of our experiences. Our voices are very powerful. By sharing and being involved we can ensure the MS Society is more relevant and useful to us. And we can make its voice more powerful, too.”

What should I expect?

Every project will be different, and the project lead will make sure you understand and are comfortable with what’s involved.

David was diagnosed with MS four years ago, when he was 53. He volunteered for a project looking to provide more support to newly diagnosed people.

“I saw a Tweet from the MS Society asking people who were newly diagnosed if they’d like to be involved in a project. It felt like the right time for me. I was contacted by Eleanor from the MS Society, we arranged a phone call, and we took it from there.

“My role was mainly to share my story and explain my journey after diagnosis – the way I felt at different points.

“We used a video-conferencing system called Zoom for the co-production group meetings. Four or five of us would meet on a Friday through Zoom.

“Because we weren’t physically together, we used a tool called Trello, which is like a huge whiteboard that we could stick notes on, to map out our thoughts and ideas. Eleanor as project lead would share her computer screen with us, so we could see what she was doing, and she would update things as we talked.

“Our video call was about an hour a week, and then we did a bit of ‘homework’, which was also about an hour. It wasn’t a huge amount of time and it wasn’t difficult. It was very enjoyable.”

Photo: a group of volunteers working on a user story at a co-production toolkit
Photo: Three people sitting at a table working on a blueprint during a co-production workshop

Do I need any special skills or knowledge?

A willingness to share your experiences and knowledge of MS is really all you need, as well as thoughts on how services could be improved. 

You might be asked to use online platforms for video conferencing and sharing documents, but the project lead will talk you through using them and will ensure they are accessible for you.

Where do I sign up?

Join our expert by experience network to hear about opportunities to get involved in the design and development of our services.