Guest blog by Zoë Clark, Programme Manager at the National Axial Spondyloarthritis Society
The National Axial Spondyloarthritis Society (NASS) Patient Values survey found a need for easily accessible self-management advice for people living with axial spondyloarthritis (axial SpA). While 77% of people living with axial SpA felt it was very important to receive advice on self-management, only 33% were positive about their own experience. We wanted to bridge that gap to support patients and healthcare professionals to access vital advice on managing axial SpA and the impact it has on a person’s life.
We co-produced short, informative videos for people to work through in their own time, at their own pace. The videos are free to access on our website and YouTube channel, so people can find what they most need at that time. Launched in March 2023, over 125 healthcare professionals now regularly signpost their patients to Your SpAce, and it’s been a resounding success.
Designed for people recently diagnosed, or those struggling to manage their symptoms, over 25,000 people have visited the webpages so far. 67% of people visiting were struggling to cope with the symptoms.
13,000 people have watched the videos, exploring ways to manage their pain, flares, and fatigue. With lived experience videos, users hear from other people living with the condition, often for the first time.
“Not only do I now know there is a community of people out there just like me, but I’m learning about my condition and how to better manage my symptoms month on month” – Your SpAce user
The practical resources have been downloaded over 1400 times to encourage people to build a personalised toolkit they can refer back to. Over the last year, we’ve built a welcoming community through our monthly online meetups, reaching nearly 400 people living with axial SpA.
Following the success, NASS has developed two new modules to help people living with axial SpA make decisions about their medications and get the most out of appointments with their healthcare professionals.
We’re so grateful to the people living with axial SpA and healthcare professionals involved in developing the content for these new modules. Your SpAce is co-produced every step of the way.
If you haven’t already, you can order a free promotional pack to easily signpost your patients with posters and postcards.