On 22 June 2021 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. Our full implementation plan can be found here.
For more information or to organise interviews please contact Fiona MacAulay, Communications Manager at NASS on 07957356220 or firstname.lastname@example.org
Notes for editors.
About the National Axial Spondyloarthritis Society (NASS)
At NASS, we transform the diagnosis and care of people living with axial SpA. It’s an invisible and misdiagnosed condition. Often leaving people feeling powerless, in increasing pain and extreme exhaustion.
We campaign policy makers for early diagnosis and better services. We work with the NHS to get axial SpA identified and diagnosed quickly.
We’re determined that everyone receives effective care. We make sure people with axial SpA get the latest information and the support they need to tackle living with the condition. And we build an active community, online and through our local branches across the UK. We are with them all the way.
Axial SpA may work silently. We don’t.
About the Act on Axial SpA campaign
The Act on Axial Spa campaign is part of the Gold Standard Time to Diagnosis programme. It is the first programme in the world to call for a Gold Standard time to diagnosis of axial spondyloarthritis. It aims to reduce the average time for diagnosis from eight-and-a-half years to just one.
Over the next four years, we will 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 to no more than one year from symptom onset.
We will also run a campaign to improve public awareness of the condition and its signs and symptoms, encouraging people with persistent lower back pain to find out if they could be living with axial SpA.
About the programme partners
The Gold Standard Time to Diagnosis programme is led by the National Axial Spondyloarthritis Society (NASS) in partnership with Norfolk & Norwich NHS Foundation Trust and RUH Bath NHS Foundation Trust.
The campaign is funded by UCB (www.ucbpharma.co.uk), a global biopharmaceutical company focused on the discovery and development of innovative medicines and solutions to transform the lives of people living with severe diseases.