We are really excited to let you know about a new research project we’re running with the University of Leeds, and funded by NIHR, the National Institute for Health and Care Research. The project is to explore the reasons for the imbalance in PMR diagnosis between the north and south of England. We’ll be doing this by working with grassroots communities in Leeds, with a focus on underserved groups that are not well represented in current research.
Globally, PMR occurs most commonly in Northern European countries, with more cases diagnosed the further you get from the equator. However, data from GP records shows that in the UK, PMR is much more commonly diagnosed in the south of England than in the north, even when you factor in that people in the south tend to live longer. (The risk of developing PMR increases with age) .
In 2021, the University of Leeds ran an online patient involvement project called PMR Voices. Through PMRGCAuk they contacted people who had lived experience of PMR. These patients were relatively lucky: they had a diagnosis, they had access to support and information and they were all familiar with Zoom. But even these patients, who were confident, articulate and technologically aware, said that they had ‘to push and push’ to get a diagnosis.
So, what are the barriers to diagnosis and why might they be more prevalent in the north of England? There is more deprivation in the north and this is associated with inequality of access of healthcare – for many varied reasons – which could be a factor in people getting a diagnosis in what we know is already a hard-to-diagnose condition.
Our actions and goals
Lucas Coutin joins PMRGCAuk as Northern Outreach Lead, to investigate the barriers to health in communities around Leeds over the next 18 months, whilst also spreading awareness of PMR.
The project focuses on public engagement via community groups and patient ambassadors, and we will be led by those groups and working with them to co-design our outputs.
It’s hoped our findings will be relevant to people living with PMR, carers and clinicians. As well as feeding back directly to our participants, we want to disseminate any findings as broadly as possible. We hope that after evaluating the work, we will be able to develop parallel initiatives across other areas of the UK.
This project is funded by the NIHR Public Partnerships Project Development Grant (NIHR205184). The views expressed are those of the author(s) and not necessarily those of the NIHR or the Department of Health and Social Care.