POS0202-PARE CHRONICALLY ACTIVE - A PATIENT EMPOWERMENT PROGRAM WITH PEER SUPPORT
Authors: A. Fryxelius
Year: 2023

Work life disability as a result from musculoskeletal conditions is a tremendous burden both on society and the individual. In Norway 1/3 of all disability pensions are granted on the background of rheumatic disease and musculoskeletal condition. The actual process of getting access to welfare support or a disability pension is built in such a way that it shames and diminishes the individual’s sense of value. The process of getting help is in essence DIS-empowering, and trains the patients to hopelessness. The health care system and state pension system have no effective means of helping people overcome the mental and psychological stigmas and traumas associated with their disability. As Norway’s largest patient organization in the musculo-skeletal field, we have a strong core of trained and experienced peer supporters. In 2012 we decided to leverage this base of peer supporters to make a positive, solution oriented, patient led self management course that can help patients break the negative cycle of passivity.To create and test a 5-day intensive intervention leading the patients through a guided empowerment process to learn symptom management and health mastery in a safe setting supported by their peers.We combined methods from creative process management with existing science based methods on symptom management, motivation, empowerment and lifestyle change, to build a program for the patients consisting of 5 modules. The modules were designed to lead the participants through a group process that activated each individuals inner motivation for making effective lifestyle changes and healthy choices. As part of the process they received a solid framework for continued social support through their local chapter of the patient organization and in an online community. Each module combines 90 minutes of teaching with 30 minutes of physical activity: One module includes mindfulness practice for stress relief and relaxation. The course was called “Sykt Aktiv” which roughly translates to “Chronically Active”, and was marketed in social media to the age group 25-55. 20 participants were included in the first cohort back in 2014, since then the program has been reiterated, improved and repeated on a yearly basis.After the course, the participants reported that they had learnt a lot and it felt inspiring. But the interesting results came after 1-2 years, when several of the participants were able to go back to work, and they reported that what they learnt in the #SyktAKTIV/ #ChronicallyActive course had been what helped them find the way back.A peer supported intervention organized by a patient organization has potential to help people with chronic pain and rheumatic conditions return to work life and lead healthy and active lives despite chronic illness.The creators behind this project have had the intention of sending an abstract about it to EULAR at least for the last 6 years. Unfortunately my organization has not seen itself able to prioritize spending money on sending staff to the EULAR congress for many years.Also, my own rheumatic conditions (I have had Scleroderma and Rheumatoid Arthritis since the age 11 & 19) always flare up during winter, and I am usually unable to work during this time of year. I am aware that this abstract doesn’t hold the correct scientific standard, but I don’t have the spoons (ref. Spoon Theory) to check all the references and have a scientist help me with getting things right.Luckily - the actual conference is in June, and at that time I am usually in a very much stronger physical condition, so I can guarantee that I will be able to participate and present this project orally.As stated above, I don’t have the spoons to find all the references for this now, but you can contact my colleagues at REMEDY to vouch for my method and my ability to deliver good oral presentations:Prof. Dr. Espen Haavardsholm.PhD. Rikke Helene Moen.Also: Read the original Spoon Theory, by Lupus patient Christine Miserandino here:https://butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/Kristin Kaldestad Urrang.Anna Fryxelius Consultant of: Pfizer - I held a creative project management workshop for a small team at the Oslo Office in 2012