My introduction to Patient & Public Involvement: a blog by Lorna Rouse

First impressions

On first hearing about plans for Patient and Public Involvement (PPI) in PROMISE, PROMISE (PROactive Management of Integrated Services and Environments) is a CLAHRC affiliated initiative within Cambridgeshire and Peterborough NHS Foundation Trust which aims to provide staff and service users with tools to support their journey towards eliminating reliance on force in mental health services.  I must admit to some feelings of apprehension.  In theory I was familiar with the idea of involving representatives of the population being researched in various stages of the research cycle having come across some examples of inclusive research with people with learning disabilities, for example, at inclusive conferences organised by the Social History of Learning Disability group at the Open University.  PPI was not a term I had come across before but seemed to be describing something similar.  However, what PPI would consist of, its impact on the project, and how it could be achieved within the tight time limits of an increasingly ambitious initiative was difficult to envisage.

Part of my role as a Research Assistant for PROMISE involved supporting the design and implementation of a qualitative project exploring the lived experience of restraint for service users and staff within CPFT.  During my first PROMISE meeting it was explained that this was one area of PROMISE that would draw on PPI initiatives and a plan was described that included forming an advisory group made up of service users with experience of being restrained.

Finding a role

The service user advisory group, recruited by the Trust’s User and Carer Manager, consisted of six people who had either directly experienced restraint or witnessed restraint during their time on a Trust inpatient ward.  My main role in this appeared to be organisational; a rather complex finance system was explained to me so that I could arrange payment of expenses and ensure cash was available to meet group members’ expenses asap, I would send out meeting invitations and documents for feedback to group members (closely guarding the confidentiality of contact details), I was to take minutes during the meetings and was given the important task of ensuring a steady supply of tea and biscuits.

Meeting with the service user advisory group

Knowing the sensitivity of the topic to be discussed, unsure of my role during meetings and aware that there were high expectations of PPI (and views on how to do it well) within the PROMISE team I approached the first meetings with the service user advisory group with some trepidation.  However, I soon came to look forward to these meetings.  For me, the topic of restraint and indeed the ward environment were entirely new and a little daunting, so the meetings were not only of great practical value in the sense of enhancing the design of the qualitative project, but hearing the views and stories of people with first-hand experience of life on an inpatient ward and of restraint brought the topic to life, emphasising the importance and complexities of the PROMISE goal to eliminate reliance on restraint in a way that reading academic papers in a ward office could not do.

Some lessons from working with the advisory group include:

  • Organising meetings requires commitment of time and people.
  • There is no one ‘right’ way to run meetings with advisory groups.
  • It is important to maintain contact with group members throughout the project.
  • An advisory group can provide invaluable insight and advice on the design of study documents and ethical issues that might arise.
  • An advisory group can provide a different perspective on and interpretation of study findings from researchers.
  • A more meaningful project of relevance to service users can result from consulting an advisory group.

The future

For PROMISE plans are now underway to relaunch the PROMISE advisory group to inform the design of the PROMISE toolkit – a resource to support staff and service users on their journey to eliminating reliance on restraint.

For myself, I have gained a greater understanding of the value and practicalities of drawing on PPI initiatives in research and I hope to use the experience gained from working with the PROMISE service user advisory group to enhance my future research as I embark on my PhD.

For further information about Reflections on Patient and Public Involvement in the PROMISE Project please click here.

Share this article
Tweet about this on Twitter
Twitter