On 22 June 2021, the National Axial Spondyloarthritis Society (NASS) launched the Act on Axial SpA campaign.
It currently takes an average of 8.5 years to diagnose axial SpA. This is too long, and NASS aims to drive this down this down by introducing the world’s first Gold Standard Time to Diagnosis of just one year.
Axial spondyloarthritis is an inflammatory disease of the spine and joints. Inflammation where muscles attach to the bones, causes extreme pain. If left untreated, it can permanently fuse bones together.
1 in 200 people in the UK live with axial SpA, more than multiple sclerosis and Parkinson’s combined. Symptoms start in late teens or early 20s. The average age of onset is 24 years old.
To achieve a Gold Standard Time to Diagnosis, NASS is rolling out programme which will see the charity work closely with people living with axial SpA, primary and community care, secondary care, professional bodies, commissioners, parliamentarians and policy makers, to focus and streamline efforts to reduce the time to diagnosis.
As a first step NASS has launched a public awareness campaign, Act on Axial SpA, which calls for people under the age of 40 experiencing persistent back pain to check their symptoms and make an appointment with their GP if they’re concerned.
A new website was also launched, www.actonaxialspa.com. The site includes information for the public and healthcare professionals. It is the biggest resource of its kind and includes articles, videos and advice from some of the leading experts on the diagnosis of axial spondyloarthritis.
Dr Dale Webb, CEO at NASS said: “Eight-and-a-half years is far too long for someone to wait for a diagnosis. During this time, patients are putting their lives on hold. Careers and family plans are frozen, and people often experience mental health issues as they wait for answers. Axial SpA is a complicated and multifaceted condition. Symptoms vary from person to person but with the right levels of awareness and efficient referral pathways in place, we can transform the patient experience and ensure diagnoses are delivered in a timely fashion.”
The Gold Standard Time to Diagnosis programme is led by NASS in partnership with Norfolk & Norwich NHS Foundation Trust and RUH Bath NHS Foundation Trust.
The campaign is funded by UCB, a global biopharmaceutical company.
David Lock, head of immunology and bone at UCB said: “This ambitious initiative aims to achieve a seismic shift in outcomes for people living with axSpA in the UK and we are proud to be working with NASS to help make the Gold Standard a reality.”
Healthcare professionals who want to learn more about axial SpA can visit actonaxialspa.com to access guidance and information on peers and patients. The full implementation plan from NASS can be found here.