Led by Dr Sarah Mackie at Leeds Teaching Hospitals NHS Trust in partnership with the charity PMRGCAuk and sponsored by the National Institute for Health and Care research (NIHR), the Polymyalgia Paradox project has highlighted significant health inequalities, especially in the North of England, where patients are less likely to be diagnosed, referred, or supported.
Through storytelling, creative workshops, and honest conversations, the research has connected clinicians, researchers, and patients to challenge the status quo and reimagine how care is delivered—starting with listening.
“I had to diagnose myself.”
For Jacqui Smith, a 76-year-old woman from Scarborough, diagnosis came only after months of pain, weight loss, and self-research. She said: “I was in hospital for four weeks and left with no real answers. I had to diagnose myself. Even after I pushed for treatment, I was told a referral to a specialist wasn’t necessary. I feel exhausted most days. I live alone. I wish I could feel optimistic about the future.”
“I delayed going to the GP. I didn’t want to make a fuss.”
For Pete Laity, a research scientist from Sheffield, the signs crept in slowly: shoulder pain, extreme fatigue, weight loss. He said: “I blamed the Covid vaccine. I hadn’t seen a GP in 10 years and thought it would clear up.” When he finally got help, his diagnosis came quickly—but support faded just as fast. “I was left to figure out steroid tapering myself. There was no follow-up. No one asked how I was coping”, he added.
“It boosts morale just to be heard.”
Linda Bevan spent eight weeks navigating misdiagnoses and conflicting advice. She said: “Physiotherapists dismissed my symptoms. I had to change GPs and go private before I got any answers.” Like many others, she turned to the PMRGCAuk website, books, and online forums. “Getting involved in this project reminded me that patients matter. It boosts morale to think people are interested”, she added.
Polymyalgia rheumatica (PMR) is a condition that causes pain, stiffness and inflammation in the muscles around the shoulders, neck and hips and affects tens of thousands across the UK each year. It is commonly treated with long-term corticosteroids, which carry serious side effects if not carefully managed. Yet awareness of the disease is low—even among healthcare professionals.
The Polymyalgia Paradox project revealed that care pathways for PMR are often broken or non-existent, especially in deprived or rural areas.
Dr Sarah Mackie, Honorary Consultant in Rheumatology at Leeds Teaching Hospitals NHS Trust and Associate Professor in Vascular Rheumatology at the University of Leeds said: “PMR can be an isolating condition. Many people haven’t even heard of it until they’re affected, and patients can sometimes feel unsupported and left to cope alone. This project gave patients the space to speak openly about their experiences. It showed how powerful community engagement can be. When we listen to patients, we learn where the system is failing—and where it can be fixed.”
Working with a Northern Outreach Lead, the charity used creative methods—maps, poetry, and storytelling—to capture the lived reality of PMR. The result was not just emotional impact, but concrete recommendations for change.
Former chair of PMRGCAuk and author of bestselling “Polymyalgia Rheumatica and Giant Cell Arteritis: a survival guide’, Kate Gilbert said: “Polymyalgia rheumatica is full of paradoxes. It’s one of the most common chronic inflammatory diseases affecting older people, but hardly anyone has heard of it until they fall ill with it. For some people the treatment is almost worse than the illness, because you’re on steroids for several years. It’s not life threatening in itself, but the pain and immobility can ruin your life.
“The PMR Paradox project has come not a moment too early, because at last we can hear patients speaking in their own voices about their experiences, how it feels to have a disease nobody has heard of, how it impacts your daily life and your relationships, how you can sometimes feel discounted and left to get on with it. This project shows what can be achieved when specialists take off the white coat and really engage with patients as equals.”