Using my voice as an expert by experience

Wed 05 April 2023

Caroline Smith

Caroline lives with secondary progressive MS. She talks to us about the importance of co-production and what being involved in it has meant to her over the years.  

I was diagnosed with MS in 2008. And I had to take ill-health retirement from my much-loved job as a dietitian in the NHS in 2013. I really felt lost and a bit useless. My mood was suffering. So my GP recommended I take part in NHS service review as an expert patient (as it was called then) to make me feel useful.

I gave it a go and loved it. I could share my experiences of living with a long-term condition. And my views on how services should be designed and delivered were reflected in the projects moving forwards.

I also joined a local neurological network and was a member of the MS Forward View Project led by the MS Trust. These showed me that my voice as an expert by experience was really powerful. An ‘expert by experience’ is someone with lived experience of MS - either living with it themselves or being a carer, family member or friend of someone with MS. Some people don’t like this term, but I find it empowering. The expert voice is so powerful in getting us the support and services we need.

Read more about being an 'expert by experience'

Getting involved early on

I first started sharing my experiences with the MS Society in about 2016, as part of the Expert by Experience Steering Group. This involved introducing involvement and co-production across the organisation. And developing a network of people with lived experience of MS to take part in co-production projects. This is work I continue to be involved with.

Involvement describes all the ways of working with the community. There’s a scale of involvement, one level of which is co-production. Co-production is experts by experience working with the MS Society in equal and active partnership from start to finish of a project. We work as equals, sharing responsibility from design to delivery and making joint decisions throughout.   

An equal, independent voice

Being involved in co-production isn’t a volunteer role. You’re there as an equal, independent voice. You're not there on behalf of the MS Society, but on behalf of yourself and the community. You're sharing your own ideas and developing the projects and services we need and want. But we welcome all who want to be involved in this, including people who already volunteer for the MS Society.

I’ve worked on several projects, including developing an MS awareness course for use in social care. And I’ve attended several listening events, which are an excellent way for people to share their views and start their involvement in co-production.

But my biggest involvement has been in developing the co-production toolkit and resources to help people co-produce. Co-production and involvement is now a key objective for the MS Society. We’ve started training staff on co-production and the toolkit. And we aim to roll it out to the community and keep building our network of people who want to be involved.

Learn more about co-production

I feel useful and appreciated

I get out a real kick out of being involved and seeing my ideas as part of completed projects. I’m pleased the MS Society has embraced working with the community to shape services and its wider work. And that it recognises we’re best placed to say what we need.

I love that I can use the skills I learnt at work in a different setting. I feel useful and appreciated. And I’ve met so many new people — making friendships and having fun. It can be hard work, but deadlines are achievable and our contribution is valued. It really gives you a boost when you see projects you’ve been involved with coming to fruition.

Spreading the word

Developing the co-production resources helped us recognise that there was a need for a volunteer role as a Co-Production Champion. So I’ve taken part in developing this role. Working as a Co-production Champion allows me to support others who are new to involvement and co-production. And to make sure all projects are inclusive and run smoothly. I can share my enthusiasm and knowledge with others, which I hope will really help all of us moving forward.

I’ve also started providing training sessions on involvement and co-production. They've only been offered to staff so far, but this is an evolving project and will roll out to the community soon. I use all possible opportunities to get more people involved. And to raise awareness of the importance of our voices as experts and the differences we can make.

Join us!

The MS Society’s local groups provide so much for the community. Listening is a vital part of what they do. So I believe the training in co-production and involvement will be useful in making sure the work is really tailored to their communities. We’ll start offering sessions to the local groups really soon.

Trainers are being trained and I hope people will want to attend. If anyone affected by MS would like to be involved, you can find co-production opportunities on the website. More people are always needed and welcomed!

My proudest achievement is seeing all the co-production resources we’ve developed and how many projects have been co-produced. It’s so exciting to be involved. And co-producing will keep me and many others engaged for years to come. I can really see the increased community involvement in the work of the MS Society, and how people with MS have blossomed by being involved.