NASS launches the first Act on Axial SpA Impact Report

Back to listing

18 October 2022 

NASS launches the first Act on Axial SpA Impact Report 

The National Axial Spondyloarthritis Society (NASS) launched the first report on the impact of the Act on Axial SpA programme at a meeting of the All Party Parliamentary Group on Axial Spondyloarthritis on 18 October 2022. 

The ground-breaking programme was launched in June 2021 and aims to establish a Gold Standard time to diagnosis of axial SpA to one year. The current UK average time to diagnosis of the condition is 8.5 years. 

The report details the key results from the programme in its first 16 months, detailing how NASS has built a burning platform for driving down the diagnosis time of axial SpA, influenced politicians and key decision makers and increased awareness of the condition among the general public and health care professionals. 

A major focus during year one was public awareness and we: 

  • Developed a new brand and narrative that connects with people aged 18 to 41, who haven’t previously heard of the condition 
  • Increased public awareness through a media and social media campaign, that have a combined reach of over 125 million 
  • Developed a website that has been visited nearly 62,000 times and a symptom checker that has been used by over 5,000 people 
  • Launched a piece of research that reveals the full economic cost and the personal cost of the 8.5-year delay to diagnosis. 

We started working with GPs and secondary care providers to increase their awareness of axial SpA and the guidelines on diagnosing the condition, including: 

  • Recruiting our first 12 Champions in Primary Care, who will act as a catalyst for change, to help ensure that patients who present with suspected axial SpA are identified earlier and urgently referred to rheumatology 
  • Appointing clinicians who work in gastroenterology, ophthalmology, radiology and dermatology to review axial SpA awareness, education and services 
  • Surveying all UK hospitals to understand their referral process for patients with symptoms of axial SpA. 

We also built political pressures and started to create a social movement for change by: 

  • Making the case in parliament with the launch of the All-Party Parliamentary Group for Axial SpA 
  • Highlighting axial SpA in the House of Commons House Magazine 
  • Meeting with the Minister for Health to discuss further Government support to reduce the delay to diagnosis 
  • Working with hospital rheumatology teams to improve services 
  • Sharing our work at UK and international conferences and meetings. 

Commenting on the results of the Act on Axial SpA campaign, Dr Dale Webb said: 

“We are immensely proud of what we have achieved in the past 16 months. General public awareness of axial SpA is extremely low, but we have begun to build a burning platform to end the delay and started to break down barriers.  

“We’re extremely grateful to everyone who has supported us over the past 16 months, including those who have helped us build political pressure for change, people with axial SpA who have stepped forward to tell their story of a delay to diagnosis and the health care professionals who have joined our campaign. 

There is more to do, but I’m confident that we’ve already started to build a social movement for change.” 

Click here to read the report : Driving down diagnostic delay in axial SpA

 

Notes for editors

  1. 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.

2  About Act on Axial SpA.

The Act on Axial SpA campaign aims to drive down the 8.5 year delay to diagnosis of axial spondyloarthritis by introducing the world’s first Gold Standard diagnosis time of just one year.

  • The campaign is led by NASS in partnership with Norfolk & Norwich NHS Foundation Trust and RUH Bath NHS Foundation Trust and funded by UCB (www.ucbpharma.co.uk).

Click here to read the report: Driving down diagnostic delay in axial SpA

 

Notes for editors

  1. 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.

2  About Act on Axial SpA.

The Act on Axial SpA campaign aims to drive down the 8.5 year delay to diagnosis of axial spondyloarthritis by introducing the world’s first Gold Standard diagnosis time of just one year.

  • The campaign is led by NASS in partnership with Norfolk & Norwich NHS Foundation Trust and RUH Bath NHS Foundation Trust and funded by UCB (www.ucbpharma.co.uk).