Experts by Experience Reference Group - Collaborating on a Terms of Reference

This blog post will explore the collaborative process used to create a Terms of Reference to guide the work of the Experts by Experience Reference Group, which is facilitated to:

Advise, challenge and work collaboratively with the Programme Board for Perinatal and Infant Mental Health, and the Managed Clinical Network for Perinatal Mental Health with the views of people with lived experience in mind.
Experts by Experience Reference Group Terms of Reference

We began by discussion of the limitations of video-conferencing, which are much discussed, as well as the advantages, which included the involvement of those from all over Scotland, something that might not have been possible if we had to meet in person.

We agreed it was important to acknowledge the contributions of everyone, and the time given to allow us to get to this point. Attendees included volunteer members of the Experts by Experience Group, members of the Scottish Government’s Mental Health Directorate and the Perinatal Mental health Managed Clinical Network. It was facilitated by me, as the Participation Officer for Maternal Mental Health Scotland.

To focus our minds, we considered the following statement:

Terms of reference should clearly state the remit of the group as an advisory forum to commissioners with perinatal mental health service user representatives, service providers and policy-makers working together to contribute to the development of services.

We continued with a discussion of our assumptions – things we agreed were the starting point of this discussion.

Infographic describing our shared assumptions. 1. We have a shared goal of improving perinatal mental health services. 2. The voices of people with lived experience need to be part of the process. 3. We recognise the strength of connection to others through a shared experience.
4. There are some good and bad examples of participation.

We followed with a chat about the group’s purpose and role.

Infographic describing our discussion on the group's purpose and role. 1. To advise and challenge policy makers and service designers. 2. To centre the experiences of people with lived experience of perinatal mental health. 3. To amplify the voices of women and men with experience of perinatal mental health problems. 4. To provide support to each other as we do these things.

Another key discussion point was understanding how our views and experiences, and those of others would be acted upon.

Infographic describing our discussions on the topic of How should our experiences be acted upon. 1. Engagement should not be tokenistic. 2. Processes should be as transparent as possible. 3. Engagement should not be co-opted or misrepresented. 4. Build on strengths and relationships.

We knew that a meeting “in real life” would have had flipcharts and post-its, and other visual tools to share points of view, so we used the “Share Screen” function on Zoom to keep track of the comments in real time. Sticky notes filled up the screen, and while the notes were being made by one person, the whole group could make changes and check for understanding.