NASS in Parliament to celebrate and raise awareness

On 1 April we were delighted to hold afternoon tea in the Houses of Parliament, hosted by Mark Ferguson MP. We were there in the main to celebrate our Changemaker Award winners, health care professionals working to reduce the time to diagnosis in axial SpA but we were also pleased to launch phase two of the Act on Axial SpA campaign. We were joined by 160 members of the axial SpA community including health care professionals, fundraisers, volunteers and branch members to celebrate the achievements of phase one of the campaign and our Changemakers.

We are already seeing changes as a consequence of our collective efforts. Our public awareness campaign has reached 5 million people, resulting in 36,000 using our online symptom checker and starting their journey to diagnosis. Our geo-targeted campaign in Belfast reached 81% of 18-40 year olds, and 73% of those who completed the symptom checker met the threshold for referral to rheumatology. Aspiring to Excellence teams have generated data at local level showing improvements in the time to diagnosis. Crucially, the NASS patient survey suggests that, in 2024, the average time to diagnosis was 7.4 years.

Act on Axial SpA has created new momentum in the UK and a palpable sense of community working together. We are at a tipping point. Our long-term goal is to achieve a UK average time to diagnosis of 12 months. As we move forward, we are announcing two medium-term national improvement goals:

• A reduction in the average time UK time to diagnosis for axial SpA from 7.4 years in 2024 to 5 years by 2029.
• An improvement in the number of UK axial SpA patients diagnosed within one year of symptom onset, from 1 in 25 in 2024 to a minimum of 1 in 4 by 2029.

Thank you to everyone who has been involved in the work to reduce the time to diagnosis, our principal clinical collaborators, Prof. Karl Gaffney and Prof. Raj Sengupta and to the programme’s sponsor UCB, for your steadfast support.

Read about our Changemakers