New research from NASS reveals what patients with axial SpA value during diagnosis, treatment and care


Today, NASS has released the findings of its latest research initiative in a report titled ‘What do patients value and need in the diagnosis, treatment and care of axial spondyloarthritis?’

The research, which was commissioned by NASS and carried out by Headstrong Thinking Limited, set out to understand the needs and values of people living with axial SpA in diagnosing and managing the condition and to assess the extent to which these are reflected in people’s experiences of services.

The results are striking:

  • Respondents reported feeling disbelieved by health care professionals when seeking a diagnosis
  • Some didn’t feel listened to or valued
  • Sometimes clinicians seemed to lack empathy and understanding of their pain and anxiety
  • A significant proportion had to pay privately to get their diagnosis
  • Respondents felt like there was a lack of joined up thinking about different specialisms
  • Once diagnosed, patients felt there was a lack of support and information available
  • Many reported not feeling involved in decisions about their care
  • Women, young people and those on a lower income were more likely to have a negative experience of care.

Reflecting on the findings Dr Dale Webb, CEO at NASS said: “This research provides a crucial insight into what patients actually value and need when they are navigating diagnosis and care.

“The results reflect anecdotal evidence that we’ve been hearing for years – patients are not happy with the treatment they currently receive and want better services from healthcare providers.

“Whilst we recognise that there are areas of good practice and acknowledge that the NHS is under considerable strain in the current climate, the overall message from the study is that people with axial SpA do not think they are receiving high quality care.

“We hope that these findings will influence the way that diagnosis and care is provided so that that every patient gets the best care, every time.”

More than 900 people with axial SpA responded to the research survey. Drawing on the findings, NASS has developed the first ever set of Patient Quality Standards which will be launched in Spring 2023. The charity will be pressing NICE, EULAR and ASAS to integrate them into their existing guidelines and standards as well as working with the 19 Aspiring to Excellence rheumatology departments and others to incorporate them into routine clinical practice.

Read the full report here.

Find out more about the Aspiring to Excellence programme here.

This research was funded by the Aspiring to Excellence programme which is led by NASS in partnership with BritSpA and the NHS Transformation Unit and sponsored by Abbvie, Biogen, Lilly, Novartis and UCB.


About the National Axial Spondyloarthritis Society (NASS)
At NASS we transform the diagnosis and care of people living with axial SpA. Axial SpA works silently. We don’t.