59. Guest Blog: The importance of trust in coproduction

By Gerard Wainwright, Clinical Educator at St Anne's Community Services.

I work at St Anne’s Community Services supporting people to take part in projects like the DAPPLE Project and the READY Group. Both use coproduction, and I wanted to share what I’ve learnt from a recent READY meeting about the importance of trust. 

The group is made up of five people with a learning disability, led by Fred Inglis (Research Associate) and Mo Hakin (Research Assistant), and attended by Irene Tuffrey-Wijne (Professor) from the KIND (Kingston Universtity Intellectual Disability) Research Group. I support the three people with a learning disability who attend from Yorkshire. We’ve all worked together for a couple of years. We know each other well, and have developed a good level of rapport, understanding, shared purpose and mutual regard during our working relationship.

When we met in June, we focused on the importance of trust and what it means to the members of our group with a learning disability. Although we discuss serious topics related to death and dying, we always start our meetings with the hat game. Anyone familiar with this knows that it involves posing a question to the group which starts with ‘put your hat on if’… ‘you are enjoying the sunshine’, ‘you have a holiday planned’, ‘you did something interesting over the weekend’ etc. This gives us a chance to catch up, see what people have been doing since we previously met, and to listen, show curiosity and value what each other have to say. As co-lead Mo asked if anyone had heard of Manga or Anime, some of his interests which were related to a recent trip he made to Japan.

We listened to our colleagues with learning disabilities explain what trust means to them. It was fascinating to hear about the examples people gave, including the importance of being heard, being able to rely on someone and feeling safe. We heard that some of the group can find it difficult to trust some people, and of the importance of having trust with health professionals such as Doctors and nurses. We also heard examples of one member of the group who often trusts people upon first meeting, and that this can make them vulnerable for example by oversharing with a person they don’t know very well. Considering some of these examples of trust, we see a link to potential influence on the health inequalities people with a learning disability often face.

Although it wasn’t explicitly mentioned in our meeting, we know that people with a learning disability are at increased risk of having faced trauma in their lives, which will inevitably inform their capacity to build trust, and can include fear of being hurt, leading to suspicion, self-doubt and avoidance of vulnerability . This may not always be conscious but will nevertheless have an impact. We also know unconscious bias and assumptions can impact on the way health professionals sometimes view patients with a learning disability.

Part way through the meeting there was a moment of pause when one of the group compared breaking trust to breaking a mirror. He described that it would be as difficult to repair broken trust as shattered glass and went as far as to say he didn’t think it was possible to do that. This was a powerful and perceptive comparison into how his lived experience has informed and impacted his view of and ability to regain trust, and reminder of why it’s so important that people with learning disabilities are at the heart of this study.

After further discussion, and a chance for other members of the group to process this, Irene shared her screen to show an image of a broken mirror that had been repaired using gold to mend the separate pieces to form a whole again. In Japan this is known as Kintsugi - the art of filling cracks in broken pottery or glass with gold; literally translated as "golden repair". Mo was able to give further examples of this following the holiday in Japan he’d told us about earlier in the session. 

To me this beautifully illustrates what can be so meaningful and insightful about being part of this group. We can hold difficult conversations, come together to connect, and gain a better understanding of each person’s shared experiences. Working with The DAPPLE Project is a privilege, getting to be part of these moments really is golden. I always come away having learnt something new, with a different perspective to the one I previously held and a sense of the importance of the work the group is doing.