Co-production in action
Caroline’s story: setting priorities for MS care
Caroline, who lives with progressive MS, was part of the steering group for MS Forward View, a project led by the MS Trust to set out the priorities for MS care for the next five years.
“A friend saw a Facebook post about the project and thought of me. I applied to be a lay member of the project group and was appointed.
“There were three of us experts by experience in the project group. Our role was to represent the wider population of people with MS and their carers at meetings.
Using Facebook to connect
“The MS Trust set up a Facebook group to help us get insights from a wide range of people with MS and their carers.
“Most interactions happened in the evenings and at weekends – time when you’d be on Facebook anyway! So it didn’t feel like a lot to ask.
“We used the group for general discussions around our experiences and to talk about how we would like see services change or develop to improve our care.
Setting the agenda
“These discussions were used to set the agendas for meetings on specific topics, for example about disease modifying therapies or care for advanced MS, and for project group meetings.
“The group could share thoughts and questions they wanted to raise. So at the meetings, we felt confident that we were expressing the views of the group and the wider MS population.
Why we need to be involved
"I felt the group really shaped the project and was fundamental to it moving forward and the final recommendations. I think we showed that people with MS and carers need to be involved. Because what people think we want and what people think we’re getting isn’t what we actually want or get.
“You can’t argue with lived experience, with someone saying ‘This happened to me’.”> Find out more about MS Forward view on the MS Trust's website
Eleanor’s story: improving newly diagnosed support
Eleanor was our Engagement, Involvement and Empowerment Manager from 2017-18. She worked with colleagues and people living with MS on a project to develop an online tool to help people who are newly diagnosed.
“The first step in any co-production project is to understand the needs of our community. In this project, we needed to understand the journey that people newly diagnosed go on in the first 12-18 months after their diagnosis.
“I advertised through our experts by experience network and our social media channels and recruited six people living with MS.
“Our co-production group met 11 times using Zoom – a free video-meeting tool.
“We managed the information we gathered on Trello, an online project management tool, which allowed everyone in the group to access, share, contribute and prioritise information.
“We followed the Design Council’s double diamond model to structure our co-production process. The four stages of the model – discovery, define, develop, deliver – helped us to think about how the project would develop over time, and which tools to use when.
The priority for the discover phase was to understand what newly diagnosed people were doing, thinking and feeling, so our service would respond to those needs. I used 1-2-1 interviews to allow each person to share their story and then created individual user journeys.
From all the insights, we mapped out one ‘newly diagnosed user journey’. We selected two of the individual case studies to share with the wider service design team. Finally, we created a series of ‘insight statements’ that explained what was happening and why.
All these things helped us define the priorities for people who would potentially use the service.
People with MS and key members of staff met in London for a workshop to co-design the service. We used exercises including blueprinting, empathy mapping and prototyping to start to map out the service and think about what it would look like. Importantly, the people who’ll be delivering the service could test ideas and get instant feedback from people with MS.
The last step for the project brings everything together to develop the content and processes for the service. I’ve used our MS Society project management toolkit to develop a plan for implementation and ensure that we keep people living with MS involved and their experiences and needs at the heart of the project.