Using our lived experience to help make a difference to others
Although at different stages of our lives, Mary-Ann and I share a common thread – we both have rheumatoid arthritis. Having experienced the highs and lows of the disease for many years, we wanted to use our lived experiences and skills to help make a positive difference to patient care and the lives of others with the illness.
Having both been on the remote monitoring trial since it started, each month we receive a text from the rheumatology department with a link to an online health survey. The questions focus on how active the disease and symptoms have been over the previous week along with personal wellbeing, helping to provide a RAID (Rheumatoid Arthritis Impact of Disease) score for clinical staff to monitor. The score gives an indication of how the condition is impacting the client’s life and whether possible clinical intervention, for example a face to face with clinical team and/or treatment review, is required.
Personally, I definitely felt the benefits when lockdown hit and face to face clinics paused, with the monthly survey providing reassurance that the team were there, still monitoring us, and ready to help when needed.
Learning, insights and co-production
The project’s aim is to see whether the scheme is making a positive impact, both to patients and clinical staff, with the possibility of a wider launch if successful.
Meeting fortnightly, the first few months introduced us to new terminology, acronyms (so many acronyms) and an understanding of how large projects are run in a large medical trust, about challenges faced and how they are addressed and resolved. From the start we were welcomed by everyone, and encouraged to ask questions, voice opinions and get involved with various tasks including planning workshops, survey / interview questions and reading draft documents. There were moments when a little extra research was needed to understand a concept or framework.
From a patient's perspective being supported by designated patient and public involvement (PPI) coordinators whom we could turn to at any time, in a safe space, really added to the experience. In addition to the project meetings, we had regular 'check-ins' where we could raise questions, concerns or just discuss matters at hand – helping us to feel appreciated and valued.
Although we are not yet finished, with the research paper currently being drafted, the experience so far has been thoroughly interesting, and with the prospect of being noted as contributors on the paper quite exciting. It has been a privilege getting to know a bunch of amazing people, many of whom are overseeing, or have previously overseen, our own personal patient care and we hope to remain in contact once the project completes.
By Emma-Jayne Adams and Mary-Ann Palmer