The research team from NIHR Leeds BRC, which is hosted by Leeds Teaching Hospitals, led on the recently published PMR-PARADOX project in 2025. The study partnered with charity partners, local patient groups, and researchers to address the inequality of care and support observed as a North-South divide between patients living with PMR.
PMR is a condition which causes severe pain in older people. It is the most common form of joint inflammation amongst people aged over 65 and affects around 2.4% of women and 1.7% of men overall.
Fewer people are diagnosed with the condition in the North of England compared to the South, and there are also fewer support groups in the North, leading to under-recognition of the condition in Northern England.
The study was also supported by the Patient and Public Involvement and Engagement team from the NIHR Leeds Clinical Research Facility, who helped facilitate the project and ensure patient perspectives were central to the study.
PMR-PARADOX linked patients with professionals via the PMRGCAuk charity who launched a patient-led video series to help start conversations that would identify and address barriers to accessing care and support.
The project found patients with PMR were often not diagnosed quickly, were not receiving appropriate support, and health advice was frequently not communicated in an accessible way by medical professionals to patients.
This meant many people were not having their painful symptoms addressed and the impact of this often increased the chance of being isolated due to their health, opening the doors to further risk of harm.
PMR-PARADOX used local expertise to move away from the usual ways that doctors and patients talk to each other, to create a safe-space forum setting where patients and professionals could talk to each other and appreciate each other’s perspectives.
Dr Sarah Mackie, co-Lead for a Musculoskeletal Disease workstream at the NIHR Leeds BRC, Honorary Consultant Rheumatologist at Leeds Teaching Hospitals and Associate Clinical Professor at the University of Leeds led the PMR-PARADOX study.
She said: “There is still a North-South divide in patient experience of PMR. In the North, it just seems that bit harder for patients to get diagnosed. Part of this is because people in the North on average have a larger number of medical conditions and this can make it hard to recognise PMR symptoms amongst all the other things. This means they wait longer in pain before they can get treatment. Many patients also say that once treated they don’t get enough ongoing support from their doctors.”
“In our partnership, we aimed to create the conditions where patients and professionals could listen to each other, working together to come up with ways of making it easier for patients to get good care.”
The team are now looking for ways to build on the partnership’s success to further increase awareness, challenge misinformation, and improve education and support for clinicians caring for people with PMR.