Spotlight On: National Axial Spondyloarthritis Society (NASS)

As part of WPP's ongoing Patient Partnership Programme the team were joined last month, by Dr Dale Webb, CEO of NASS, (National Axial Spondylorathritis Society) to speak about the incredible work that they are doing to improve the many lives of those with axial SpA. WPP were also joined by Poppy Hocken, Paul Curry and Jackie Harris, trustees of NASS, who shared their personal stories and experiences of the condition.

What is axial spondyloarthritis?

Unlike osteoarthritis or mechanical back pain caused by injury, axial spondyloarthritis (axial SpA) is a form of inflammatory arthritis that affects 1 in 200 adults in the UK – that’s 220,000 people in the UK alone. The inflammation is followed by wearing away of the bone, and when healing takes place, new bone develops, which then restricts movement up to the point where the spine can fuse.

Life for people with axial SpA

The main symptom is back pain, which is often worst in the morning and reduces with exercise. Axial SpA can also cause fatigue, uveitis (eye inflammation that can lead to blindness), psoriasis and irritable bowel syndrome. A shocking 59% also report experiencing mental health problems.

What are the symptoms?

Symptoms come on slowly, which makes it difficult to diagnose. On average, it currently takes 8.5 years to get a diagnosis from the onset of symptoms, by which time irreversible damage to the spine may have occurred. Not only does this delay treatment, but it can be incredibly frustrating and disheartening for people suffering with axial SpA for many years without explanation. The average age of onset is 24, meaning that delayed diagnosis can prevent young people from socialising, establishing careers and starting families.

Given axial SpA is so common, why does it take so long to reach diagnosis?

There are four key reasons why diagnosis takes so long:

1. The patient doesn’t realise it could be axial SpA – 40% of people wait more than a year before consulting a healthcare professional

2. The person goes into primary care, but the practitioner doesn’t realise it could be axial SpA,

3. misdiagnosing as mechanical or psychosomatic pain

4. The person is referred from primary care, but the referral is not always direct to rheumatology – instead often referred to pain clinic, MSK or spinal triage, who don’t realise it could be inflammatory arthritis

5. Rheumatology can take up to six months to diagnose axial SpA, as there is no single clinical, laboratory, pathological or radiological feature for diagnosis


What is NASS’s solution to reducing delays in diagnosis?

The Gold Standard Time to Diagnose programme is an initiative framed around these four delays and solutions, providing provides a national implementation plan. The solutions are:

1. National awareness campaigns to help people realise they might have axial SpA

2. Ensure adequate local training of primary care physicians and create a community of primary care clinical champions to raise visibility

3. Ensure direct referral into rheumatology by creating inflammatory back pain pathways and providing training to other secondary care services

4. Timely diagnosis within rheumatology by ensuring imaging protocols and radiology training are in place


How are NASS making a difference day-to-day?

90 branches across the UK offer regular guided physiotherapy and hydrotherapy – estimated to save over £2 million to the NHS each year.

NASS offers information and support to those with axial SpA, and digital offerings have increased significantly this year due to the pandemic. Resources include:

• ‘My AS, My Life’, a self-management portal with guidance and resources

• Members forum

• Helpline

• PIP support – helped to leverage £900,000 of state benefits for people with axial SpA through advocacy support


NASS also work to raise public awareness of axial SpA, aware that they need reach beyond their own networks to raise awareness to people who may have symptoms but have not heard of axial SpA.

What is NASS doing to put axial SpA on the political agenda?

NASS set up the APPG (an all-party parliamentary group) for Axial Spondyloarthritis to give a national oversight of the NICE guidelines to ensure that the guidance is being implemented. The APPG found that, in most CCGs (clinical commissioning groups), there are huge deficits for people with axial SpA regarding: referral pathways to rheumatology, appropriate mental health support and available musculoskeletal physiotherapists. 

Impact of Covid-19

The inquiry into the impact of Covid-19 on people with axial SpA revealed that physicians believed that there was an overreaction in closing down rheumatology clinics in first wave, and the importance of continuing these practices throughout the second wave.

Tom Randall is an MP with axial SpA. He was able to secure adjournment debate on axial SpA for early diagnosis and convinced the minister to agree to a national public awareness campaign post-Covid. 

To learn more, please see the NASS website and follow them on social.