“Something's got to change.” Listening to the stories from families and allies of people with profound and multiple learning disabilities.

Who are we?

The project was led by: 

Throughout the project we worked closely with staff and families at specialist day services attended by adults with profound and multiple learning disabilities (PMLD).  

What are we aiming to do?

This research project was about collecting and sharing stories about the lived experiences of adults with PMLD. The overall research question was: 

  • How can lived experiences and social histories of the PMLD communities be best collected, curated, and shared? 

The project brought up questions around: 

  • What is important to share? 
  • Can empathy be taught? 
  • How can love be shown in different ways?

How was the project conducted?

Over five weeks, two researchers visited specialist day services for people with profound and multiple learning disabilities and met parents and managers. We conducted our research through a series of coffee mornings at the day services. This allowed the participants to come to a familiar place, with people they already trusted. It was a space to bring families together. The setting of a coffee morning helped to make our time together feel more relaxed.   

Stories were captured through audio recordings, our reflections, mind maps and parents' creative responses. We listened to the parents and responded to the themes they felt were important: Our people (adult children) are valued, loved, lovable and loving; The system and professionals; Time and the future; Empathy. We explored further evidence of these themes each week. In between the coffee mornings, the parents created poems, writing and drawings. 

During the process of data analysis and report writing, we remained in contact with participants to ensure we reflected their views and experiences of the project. We are now working closely with the group to produce a series of short films.

Project outcomes

  • Research Report This report shares our approach to the research and the findings of the project. The zine is currently available in the following formats:  
  • Short films We have commissioned film makers Fable to produce a series of short films about the rarely documented experiences of the project participants.

We are grateful for the additional funding from The Glastonbury and District Mencap Society which, together with funding from Wellcome, enabled us to commission a film sharing the parents' stories far and wide.

To find out more please email: