Dr Dale Webb
A painful form of inflammatory arthritis, called axial SpA (AS), can take years to diagnose. Speedier diagnosis is urgently needed to help patients with the disease.
Imagine you began to develop severe back pain around the time of the 2012 London Olympics — but today it’s getting worse and no-one can tell you what’s wrong. Unbearable? Thousands of people who are waiting to be diagnosed with axial SpA (AS) are in exactly this situation.
Axial SpA (AS) or axial spondyloarthritis, to give the condition its full name, is a painful and progressive form of inflammatory arthritis, affects around 1 In 200 adults in the UK and, shockingly, takes an average of 8.5 years to diagnose. “To understand this condition, it’s important to stress what axial SpA (AS) is not,” notes Dr Dale Webb, CEO of NASS, a charity dedicated to transforming axial SpA (AS) care in the UK. “It’s not osteoarthritis, caused by wear and tear; and it’s also not mechanical back pain, caused by sports injuries or heavy lifting.”
If you have back pain that started before the age of 45, comes on slowly over time and is better when you’re exercising, then you could have axial SpA (AS) – so ask your GP for a referral to rheumatology.
Rather, axial SpA (AS) is a chronic inflammation of the joints caused by an overactive immune system which disproportionately affects young people: the average onset is just 24 and symptoms often start in mid to late teens. These can include pain, stiffness, fatigue and night sweats. It’s also linked to inflammation of the eye which, unless treated quickly, can lead to blindness.
And with 59% of people with axial SpA (AS) reporting mental health problems, it can have a significant impact on people’s ability to socialise, establish careers and even start families.
Quicker diagnosis to minimise disease progression
There’s currently no cure for axial SpA (AS), but early diagnosis would allow treatment to slow its progression, reduce levels of pain, stiffness and fatigue, and enable people to live well with the condition sooner. So why the delay? “Often, people don’t see their GP when symptoms first occur and, when they do, it’s sometimes assumed that it’s mechanical back pain,” says Dr Webb. “Patients may therefore be passed around the healthcare system to non-rheumatologists. Our message is: if you have back pain that started before the age of 45, comes on slowly over time and is better when you’re exercising, then you could have axial SpA (AS) – so ask your GP for a referral to rheumatology.”
To ensure that every patient is diagnosed within one year of symptoms first appearing, NASS is proposing the world’s first Gold Standard for the diagnosis of axial SpA (AS). With more awareness and understanding of axial SpA (AS) from patients and GPs, and with health commissioners developing more robust referral pathways, Dr Webb believes this target is achievable. “It is ambitious,” he concedes. “But if we’re going to reduce diagnosis times, the support of the whole NHS and Healthcare community is vital.”
The Gold Standard Time to Diagnosis programme is funded by UCB which has no editorial control over the content or output of the programme.