Our History - Celebrating 50 Years!
Our History
In the 1970s, medical understanding about axial SpA (then called ankylosing spondylitis), was low and there was a lack of understanding about how it should be managed.
In 1976, a small group of patients, rheumatologists and physiotherapists formed NASS, aiming to provide vital support for anyone affected by axial SpA in the UK. Fifty years on, we are still the only charity in the UK dedicated to the axial SpA community. And it has only been possible because of the vital role played by our members, supporters and volunteers.
History Features
In 1976 at the Royal National Hospital for Rheumatic Diseases (RNHRD) in Bath, NASS was founded by a group of rheumatologists and patients including Dr Allan St John Dixon, Mike Tanfield and John Coates.
Our first AS News was published and we held our very first Members Day in 1978.
The first NASS Director, Fergus Rogers, joined in 1980 and soon became a commanding figure. Some of you may remember his friendly smile and characteristic bow tie. Fergus worked tirelessly to raise the profile of the condition and highlight peoples’ needs. He is remembered fondly by many NASS members for his immeasurable care and support.
In 1982 we produced our first guidebook which was distributed to rheumatology departments around the UK.
Read more about How It All Began
Fergus Rogers continued to travel the length and breadth of the UK, making contact with rheumatology departments and local people living with axial SpA to help open local branches offering regular physio-led exercise sessions.
We produced our first exercise cassette with the help of Jane Barefoot and Dr Anthony Clarke – Fight Back for people living with axial SpA. It was swiftly followed by our first VHS tape.
By the early 90s, NASS was taking a leading role in shaping the future landscape of axial SpA both in the UK and worldwide.
In 1992, our branches and members funded a two-day International Scientific Meeting in London, ‘HLA-B27 – 20 Years On’, organised by Dr Andrei Calin and Dr Allan Ebringer. It brought together specialists with an interest in axial SpA from a whole range of countries, showcasing 27 presentations.
The 90s and early 00s brought many breakthroughs in management, treatment and research, and NASS were dedicated to sharing this with every patient.
With the help of NASS member Ken Burrell, we produced our first website, helping us to disseminate information much more efficiently to a wider population.
With the discovery of anti-TNF therapy, NASS drove research and lobbied for NICE to approve access to people with axial SpA. In 2007, NICE approved the use of anti-TNFs for axial SpA, changing lives of many people.
The other major development was the use of magnetic resonance imaging (MRI) to visualise the inflammatory changes in the sacroiliac joint and the spine, leading to identifying more non-radiographic cases of axial SpA and reducing delay to diagnosis.
NASS also worked closely with the University of Oxford to identify the genes involved with axial SpA. NASS members provided blood and saliva samples to move the research forward.
By 2006 we were entering a new era of modern technology and mass communication. NASS embraced the new technologies, helping us reach more people than ever. We produced a new website with extensive information and support for anyone living with axial SpA. We also reached out through social media via Facebook and Twitter to raise even more awareness.
Our NASS Helpline was launched to provide individual support.
2010 saw the launch of our Back to Action guide to exercising safely in the gym. This was followed by an app version in 2011, and Back to Action Part 2 a couple of years later.
In 2010, we also released the Looking Ahead Guide to Best Practice. This was an extensive piece of work by a group of clinicians working in axial SpA who highlighted the problems of axial SpA management and highlighted solutions. It was influential in moving the management of axial SpA forward.
One problem highlighted in Looking Ahead was lack of GP awareness of axial SpA. We launched our GP Awareness campaign and it reached over 20,000 healthcare professionals.
To further develop solutions, NASS launched the ‘AS It Is’ campaign in Parliament in November 2013, prompting the National Institute for Health and Care Excellence (NICE) to announce in January 2014 that it would develop a dedicated Clinical Guideline for Spondyloarthritis, including Ankylosing Spondylitis (AS).
In 2017, NICE published the first national clinical guideline for spondyloarthritis, swiftly followed by a Quality Standard. In late 2018, we launched our Every Patient, Every Time campaign in Parliament, to generate momentum about how to ensure the NICE guideline was implemented across the UK.
In 2019, in collaboration with Parliamentarians, we established the All Party Parliamentary Group on axial SpA. Its remit was to have oversight of the implementation of the NICE guideline. Over a series of 11 meetings we commissioned two national inquires about the implementation of the guidance, commissioned one inquiry into Covid and axial SpA, and brought to light the lived experience of people with this condition, as well as case studies of best practice. It led to a debate in the chamber of the House of Commons on delayed diagnosis, as well as other debates and Parliamentary questions.
In 2019 we launched Aspiring to Excellence – the largest healthcare quality improvement programme in axial SpA ever undertaken in the UK. Over 5 years, we – together with our technical partner, the NHS Transformation Unit – supported 23 rheumatology departments to develop initiatives to reduce the time to diagnosis and improve patient care.
In 2020, we launched Act on Axial SpA – the largest programme anywhere in the world that is working to reduce the time to diagnosis in axial SpA. Since that time, our public awareness campaign has been viewed by 7 million people and 51,000 people have completed our online symptom checker. We have provided training to almost 2,000 healthcare professionals, created clinical champions in primary care and provided peer-to-peer support. We established a time to diagnosis survey, working with more than 50 rheumatology departments. The data show that the average UK time to diagnosis has now reduced to 7.5 years.
In 2020, the Covid pandemic arrived. We responded quickly. That year we ran 36 Facebook Live sessions to help people stay connected to each other and to NASS, and then curated the video recordings and produced My AS, My Life, a new self-management resource. We also secured funding from the Postcode Lottery to offer online physiotherapy sessions.
In 2021 and 2022, we built from this, continuing with our live-streamed webinars. We established a regional self-management programme in collaboration with local rheumatology departments, and have since worked with 48 NHS teams to support over 1600 people with axial SpA.
In 2023, we launched a new online learning programme for people recently diagnosed, called Your SpAce, providing bite-sized videos and downloadable resources. We also started our monthly online peer support meetups, with over 1200 people attending so far.
In 2024, we secured funding from The National Lottery to extend our work in England, Northern Ireland and Wales, supporting over 360 people. Our online self-management videos have now been viewed over 500,000 times.
In 2025, NHS England formally adopted our Axial Spondyloarthritis Playbook, helping us to spread good practice across the NHS.
In 2026, we will launch a new programme which will help us identify how best to support those people whose axial SpA is difficult to manage. We will review current practice, draw together insights from patients and clinicians, and turn expert opinion into real-world solutions and life-changing support for those who need it most.
Celebrating 50 Years
