One of the ways in which PPI members became ‘hands on involved’ in PERFECTED was as co-interviewers, working with researchers to conduct carers’ interviews, and they often took the lead in the interview setting. This proved valuable from the researcher’s point of view because PPI members’ own experiences connected with dementia allowed them to show empathy with participants especially with upset participants, since they too have been through the same or similar situations. 

‘There was a special bond between carer and PPI members, a homogeneity’ 

Over the course of the project we had to move away from being very formal and rigid in relation to PPI and become informal and flexible. For example, to initially recruit PPI members there was a Job Description and application process, which was too formal for some potential members some of whom worried about writing the 500-word person specification to apply. This approach was changed to allow researchers to work with PPI members to draft their application which took the stress out of the process for them. 

The interaction between SILs (Service Intervention Lead) at hospital sites and local PPI members worked particularly well, and at one of the three sites had a direct impact filtering into the leaflets for carers distributed on the wards.

Thinking of the wider project, PPI members’ comments on the protocols / annexes were always sought and listened to, where possible and relevant their ideas are taken on-board and used to help shape the project.There has been useful learning throughout the life of the project, for example the PERFECTED team members in charge of the SUAGs changed over the duration of the study, sometimes this has led to a gap in communication. This was noted and we changed to having one person taking responsibility for ongoing communications and that improved continuity.

Tamara Backhouse, Project researcher at UEA