Campaigning nationally

We are a small team at NASS, but we do work  across a number of areas to try to influence the diagnosis, treatment and care of axial SpA, ensuring that we get a seat at the table whenever possible as key stakeholders.

England

Influencing national policy

In 2025 we were delighted to work with NHS England’s Getting it Right First Time programme as they agreed to co-badge the Axial Spondyloarthritis Playbook: improving time to diagnosis and improving patient experience.

Our Parliamentary work in 2025/2026

In 2025 we held meetings with several MPs to discuss the time to diagnosis, and emphasising the Act on Axial SpA campaign as a blueprint for diagnosis, not just of axial SpA. We have now developed this into a briefing document for any MP to understand the issues around diagnosis and the campaign and will be seeking opportunities to speak to MPs at our Changemaker Award ceremony which takes place in Parliament.

Forming and working with the APPG

NASS has had a steady presence in Parliament over the years, with the most recent success being the formation of the All-Party Parliamentary Group for Axial Spondyloarthritis (APPG). The group was co-chaired by Tom Randall MP and Lord Campbell-Savours, who both live with axial SpA (AS). Tom Randall also hosted an adjournment debate in parliament in September to discuss the delay to diagnosis.

Debates, questions and campaigns

In September 2020, Tom Randall led an adjournment debate on the delay to diagnosis which led to a promise of a meeting with the Health Minister. After several delays due to COVID and other political events, we were able to meet in June 2022 with Gillian Keegan MP.

Tom also led a Westminster Hall debate on the time to diagnosis in axial SpA, and later spoke at a similar debate on Work and MSK.

Tom was also able to ask a question in the House of Commons Health Questions on the issue of hydrotherapy pools reopening, securing another meeting with a minister. This then kick started the formation of the Aquatic Physiotherapy and Hydrotherapy Alliance.

Other campaigns and successes over the years include the 2013 launch of ‘AS it is’ campaign, calling for a Clinical Guideline and Quality Standard to be produced by the National Institute of Health and Care Excellence (NICE).

An adjournment debate in the Houses of Parliament called by Huw Irranca Davies (former MP) and subsequent meeting with the health minister at the time led to the publication of the NICE Guideline for Spondyloarthritis in 2017, and the corresponding Quality Standard in 2018.

Scotland

Working with Scottish Government

NASS works to ensure that we have a say in any relevant consultations in Scotland. The most recent was the Long Term Conditions Strategy consultation which began in 2024. A draft was published in 2026 but this work has been put on hold as they seek more input from patient groups such as NASS.

Campaigning for better services

We were delighted to join forces with other patient groups to look at services for people with immune mediated inflammatory diseases (IMID) in Scotland. You can read a summary of the findings, next steps and the full report published in 2026, and presented at two rheumatology conferences here.

Special thanks to the National Rheumatoid Arthritis Society for leading on the project, and charity partners Crohn’s & Colitis UK, Lupus UK, and the Psoriasis Association.

A Parliamentary Presence

We are pleased to be members of the Cross Party Group for Arthritis and Musculoskeletal Conditions, chaired by Pam Duncan-Glancy. Members of the NASS team attend and present regularly, and we are also fortunate to have several of our members in Scotland attend as well to make the case for axial SpA.

Wales

Since the formation of the Musculoskeletal (MSK) Strategic Network, we have been pleased to input into the MSK Framework, MSK Community Service Specification and Quality Statement. We have also been on the working groups for the Spondyloarthritis and Low Back Pain Pathways, which decide on who should be referred on from the GP to rheumatology for suspected axial SpA.

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