Listening differently to inform co-design
Reflections from Karen, peer researcher:
The day had finally arrived for the first co-design workshop and it was taking place at Toynbee Hall, Aldgate, London.
While travelling to the venue, I remember thinking to myself that it was hard to believe the peer research had been ongoing for almost two years and we had now arrived at the point of conducting our first co-design workshop event. It was no longer just a discussion between ourselves as a team; we were “going public” and it was our first opportunity to showcase the work we had been doing and to receive feedback from outside of the group, I was nervous but also really excited.
We had invited a varied selection of people from different groups and people started to arrive early. There were service users whose experiences had informed our research; some who were familiar to me and some new. There were also representatives from the charity sector, these included the MS Society, MS Trust, Shift MS and Asian MS. There were also healthcare professionals, comprised of a neurologist, MS nurse practitioners, a neurophysiological- therapist and a research nurse. Looking around, everyone was talking to each other, introducing themselves and I was extremely impressed by how many people had found the time to attend. It was at that point that I knew this was going to be good.
So once lunch had finished the workshop began in earnest.
The event opened with a short scripted presentation read by the peer researchers where, “ we used our voices to share some of the stories gathered through our research”. It was an impactful combination of different experiences of the research participants and how they felt their MS journey was being dealt with within the healthcare system. It was during this part of the event, that we acknowledged the contribution of one of the peer researchers who, had sadly passed away a few days prior. Although this was a somber moment I felt it brought home to everyone how serious a disease MS really is.
After the introduction, everyone was ready to start discussing the five themes we had identified through our research, these being ;
Access to information and information that is relevant
Access to support and support that is relevant
Cultural expectations
Education and
Myths and misconceptions about MS.
The discussions was an in-depth analysis of the said themes but also offered interesting solutions and lead perfectly to the next part of the workshop.
Attendees were then asked to place these themes into four categories;
Prepare the ground
Not now but not never
Move now
Quick wins
The room was buzzing, as everyone was in deep conversations with each other and this was perfect. It was at this point that it became apparent to me that everyone was here to engage with the research. They wanted to be here and they wanted to change how people with MS could obtain relevant, timely and purposeful support and the vibe was amazing which, continued throughout the whole event.
The allotted time for the event passed really quickly but so much had been achieved. I was really impressed as everyone I spoke too was asking, what’s the next stage in the research, how can I get involved and don’t forget to invite me to the next event. This was the outcome we had all hoped for and it was clear that the research resonated and meant something to all who where present.
Our first co-design workshop was a resounding success, and I felt extremely proud of our work. This sentiment was also supported by the other peer researchers and the comments made about the event, that “it reflected and aligned with the research goals, as Ashley stated , Laura felt that it was “great fun, and it was also very productive; and Rawda found that “it was truly enjoyable and I loved every minute” and I agree. The peer research was indeed relevant and all of the interviews and pages and hours of analysis had been worthwhile and I was excited about our next stage of the research.
The next co-design workshop will take place in Bradford and I anticipate that it will be as productive as this one. I look forward to the opportunity to gaining further insight into how our research can have an effect on policy making and the development of new strategies; and I have been inspired to follow through with our work and make change happen.