48. What DAPPLE has taught me about coproduction

The DAPPLE team leads the way in co-production. The value of the work we do is in working in partnership with people with learning disabilities who bring their lived experience to this project.  

One of the lessons I’ve learnt from this approach is the importance of listening to understand, when so often we listen to respond. This technique supports our colleagues with learning disabilities to be heard and valued for their opinions. That may sound obvious, but it doesn’t always happen. Many people with learning disabilities are not seen, heard or represented in the same ways that those of us who don’t have a learning disability are. This can and does lead to reduced opportunities. It also limits the influence that a person with a learning disability has.  Creating an imbalance of power and real-world impact. We see this in the statistics around health inequalities and reduced life expectancy faced by people with a learning disability - a key focus of the work we do in the DAPPLE project. We want to change that. 

Many of the things we discuss are complex. We are focusing on the support people with learning disabilities receive at the end of their lives. We talk openly about death and dying. Topics that can be triggering and highly sensitive. A subject that as a society we find difficult, and one that many people with a learning disability are protected from. 

When talking about these things, we often use open questions. This can be helpful in not imposing our own ideas on our colleagues with a learning disability, influencing their answers, or reducing complicated ideas to a yes or no response which lacks nuance. But one of the things I’ve come to understand is that for some people with a learning disability a question starting with how do you feel about…, or what do you think about…, can be difficult to process. It’s an abstract concept and can seem unclear and without context.  

People with learning disabilities are often used to being offered options in a more straightforward way, such as would you like tea or coffee… sometimes these spoken choices are given emphasis by also showing the two items for further clarity. Likewise, in our groups we use pictures to illustrate the stories we talk about. These are real life accounts of people with a learning disability who have died, which are anonymised for our study.  

We know that visual processing is much faster and more efficient for the human brain than processing spoken or written words. This also reduces language demands. Introducing a story about the end of a person’s life with a learning disability, we use pictures to break down each stage and give time to our lived experience colleagues to consider what this means. What’s fascinating about this approach is that we get ideas and reactions that we didn’t anticipate and may not have considered, which in turn informs the work we do.   

Personally, I’ve learnt a lot from the insights and comments of our colleagues with a learning disability. Which has led me to think much more deeply about the work we do in the DAPPLE Project. In particular, the importance of framing complex ideas and difficult questions in a way that is accessible and clearly understood by people with a learning disability and supports them to fully share their lived experience in a meaningful and valuable way. Creating opportunities to think about things which may otherwise be difficult or in some cases not possible. Which it’s aimed will have an influence and impact through our findings and be shared more widely.  

Written by Gerard Wainwright, member of the DAPPLE Project Advisory Group and the Better Care Before Death Group.