
Experience and Advocacy In Axial Spondyloarthritis with Bethany Dawson and Dale Webb - AxSpA Series 4/5
Rheumatology.Physio PodcastShow Notes
The people who have conditions are the voices we need in healthcare to understand not only the effects of the disease but also the processes involved in navigating healthcare systems. Bethany Dawson has had Axial Spondyloarthritis for a number of years and has experienced the good and the bad of these systems. Dale Webb is the CEO of the National Axial Spondyloarthritis Society who work tirelessly to bridge the divide between patients and healthcare.
The information and experience in this podcast are vital if we as MSK Therapists are to understand our place in this landscape. I learned so much from this conversation and you will too.
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Welcome Back Rheumatology Fans, Ooof this is going to rattle some cages. Synopsis below but the best of this is watching the video. A recent news report about a woman with rheumatoid arthritis who was convicted of benefit fraud caught my attention. The case involved footage of her participating in activities including gym classes and running events despite having previously reported substantial limitations in her day-to-day function. I don’t know enough about the individual circumstances to comment on whether the judgement was appropriate. In fact, the reported offence appears to relate specifically to failing to notify the Department for Work and Pensions of a change in circumstances. But the story raises a broader issue that is highly relevant to people living with inflammatory arthritis and the clinicians treating them. Being physically active does not necessarily mean someone is not disabled. Rheumatoid arthritis, psoriatic arthritis, axial spondyloarthritis and other long-term inflammatory diseases can be enormously variable. Symptoms may fluctuate over time, treatments can substantially improve function, and limitations in one activity do not necessarily predict someone’s ability to perform another. Exercise also forms an important part of rehabilitation. I might see someone who currently cannot run, play tennis or golf because their inflammatory arthritis is poorly controlled. Following improvements in medication and a structured rehabilitation programme, one of our explicit treatment goals might be to return them to those activities. For another person, the goal might simply be getting upstairs more comfortably. To achieve that, we may use relatively demanding strengthening exercises in a gym. Seeing that person performing a squat or leg press tells you very little, in isolation, about how easily they can negotiate their stairs later that day. That distinction matters. We should not create an environment where people receiving appropriate financial support become frightened of exercising because they worry that being seen in a gym, lifting weights or participating in sport could somehow be interpreted as evidence that they are no longer disabled. From a clinical perspective, I want people with inflammatory arthritis to be as active as their condition, preferences and circumstances allow. Where possible, that includes meeting general physical activity recommendations and incorporating cardiovascular and resistance exercise. There are good reasons for doing so. Maintaining physical activity can help protect muscle and bone, improve cardiovascular health and support broader long-term health outcomes. For some patients, returning to demanding exercise is itself a major marker of successful treatment. None of this means that changes in someone’s circumstances should not be reported where required. That is a separate issue. The important point is that exercise capacity and disability are not opposites. A person can exercise and still experience meaningful restrictions from inflammatory disease. They can also improve dramatically with treatment while continuing to have limitations elsewhere. As clinicians, we should be encouraging people towards greater function—not inadvertently giving them another reason to be afraid of achieving it.
This is a free preview of a paid episode. To hear more, visit rheumatologyphysio.substack.com
This is a free preview of a paid episode. To hear more, visit rheumatologyphysio.substack.com