A Carer's Perspective on PPI
A Carer’s Perspective on being a Patient & Public Involvement (PPI) Consultant for the AVATAR2 Therapy Trial
I care for a loved one who experiences psychosis and have accessed a lot of services over the last few years. When an email from a fellow friend and carer arrived in my inbox, I saw an opportunity to give something back and feel like I was engaging in a project that could really make a difference to people who experience distressing voices.
I felt very nervous when I sent my first email enquiring about becoming a PPI Consultant and even more nervous when I had a Zoom conversation with a Research Assistant about the role. My nerves were totally unfounded though and I was put at my ease and welcomed to the team.
I have never worked in an environment where I have felt so much equality. I have been to several full-team meetings where there have been professors, doctors and statisticians among others, and we are all treated equally and with kindness. Sometimes I may feel a little out-of-my-depth with some of the information, but I feel so honoured that I get to listen to all parts of the trial’s progress, even when it gets quite academic.
There are many opportunities to gain skills and acquire tools as a PPI Consultant. I have co-presented at an Early Intervention Service to promote the AVATAR2 Therapy Trial among Care Coordinators, been to team meetings, written a blog, had Personal Development Meetings, and given feedback on documents relating to the trial. I have felt an equal member of the team and really feel my opinions have been heard and that I have made a difference.
On a personal note, one of the best outcomes for me has been working with other PPI Consultants who have completed the AVATAR2 Therapy and spoken about what a difference it has made to their lives and are now giving back by working for the trial. Currently, my loved one who experiences psychosis, is not in a place to access the therapy but I have hope that one day they may be.