New research shows that the UK is paying an unnecessarily high price for the delays in diagnosing axial spondyloarthritis (axial SpA including Ankylosing Spondylitis or AS).

Axial SpA is a painful form of inflammatory arthritis that affects 1 in 200 UK adults. It starts young, with people often experiencing symptoms from their mid-teens to early 20s.

Currently, people wait an average of 8.5 years for a diagnosis and the research shows that:

• This delay costs the economy an estimated £18.7 billion per year
• A patient aged 26 who waits 8.5 years for a diagnosis is likely to lose around £187,000
• By driving down the average diagnosis time to one year, the UK economy could save £167,000 per person.

The study has been commissioned by the National Axial Spondyloarthritis Society (NASS) and released for World Arthritis Day.

Axial SpA is an incurable and painful form of inflammatory arthritis, that affects the spine and joints. It causes extreme pain, exhaustion and fatigue. If left untreated it can lead to spinal fusion.

The ground-breaking economic modelling undertaken by the University of East Anglia has revealed the staggering cost to the UK economy.

It also shows that individuals pay a high price both in lost income, as full-time work becomes impossible, and in out-of-pocket health care costs, including paying for private health care appointments to look for answers.

Watch Maeve’s story as she shares her experience of being driven into financial insecurity while waiting for a diagnosis of axial SpA.

Commenting on the research, Dr Dale Webb, CEO at NASS said:

“These costs are startling and unnecessary. The cost of a delayed diagnosis is greater than the cost of earlier treatment and the economic argument for ending the delay is clear.

The human cost of a delayed diagnosis is also great. As people wait many are locked out of work, education, and family and social lives. All this takes a significant toll on people’s mental health.

Ending the delay would also slow down or stop the progression of axial SpA sooner, enabling more people to take a full role in life and avoid the worst outcomes such as spinal fusion.”

Shabir Aziz, from Sheffield, faced a 15-year delay to diagnosis. As a graduate, he expected to establish a well-paid professional career. Instead, he was left unable to work and relying on benefits for 20 years, while he waited for an axial SpA diagnosis.

According to Shabir,

“I was often in trouble for being absent from work – I didn’t have a definitive diagnosis to explain or justify my pain and fatigue, so managers had very little sympathy. I landed my dream job, but I had to leave within a year because I was taking too much time off sick.

When it became clear that work was going to be impossible, I started applying for financial support, but I was turned down on multiple occasions because I didn’t have a diagnosis that could explain why I was unable to work.

Mentally, I really struggled too. I became socially withdrawn and lost friends. It also impacted my marriage, my wife became my carer and took the brunt of my ups and downs.

Now, aged 51, with the right diagnosis and medication, I feel like I’ve got my life back and hoping to get back into work soon.”

Commenting Prof RJ Fordham. Chair in Health Economics, University of East Anglia said:

“Our modelling suggests the cost of delayed diagnosis of axial spondyloarthritis is substantial. Most of the burden of these costs fall on the individual with the condition, with younger people paying a higher price. It’s clear from the modelling that earlier diagnosis and treatment of the condition is better not just for the individual but for the economy as a whole.”

The Act on Axial SpA campaign was launched in June 2021 and is designed to introduce a Gold Standard Time to diagnosis of one year by tackling the four main causes of a delayed diagnosis:

• Lack of public awareness, fewer than 9 in 10 people had heard of the condition and most cannot recognise its symptoms
• Delayed recognition and referrals to rheumatology, with GPs and first contact practitioners sometimes missing the key signs and symptoms or referring people to the wrong place
• Delayed diagnosis in secondary care, with specialists outside rheumatology not realising a patient’s symptoms could be axial SpA
• Delayed diagnosis within rheumatology as a result of not having the right investigations and tests.

For more information about the campaign go to www.actonaxialspa.com

Click here to read the full technical research report.

For more information on the research, an interview with one of our experts or case studies please contact:

• Liz Marshall, 07796697593 or lizmarshall@nass.co.uk
• Fiona MacAulay, 07957 356220 or fionamacaulay@nass.co.uk

Notes for Editors

1      About the National Axial Spondyloarthritis Society (NASS). At NASS we transform the diagnosis and care of people living with axial SpA. Axial SpA works silently. We don’t.

2      About Act on Axial SpA. The Act on Axial SpA campaign aims to drive down the 8.5 year delay to diagnosis of axial spondyloarthritis by introducing the world’s first Gold Standard diagnosis time of just one year. The campaign is led by NASS in partnership with Norfolk & Norwich NHS Foundation Trust and RUH Bath NHS Foundation Trust and funded by UCB.

3      About the research. The research was commissioned by NASS and carried out by the University of East Anglia. To develop the model, a mixed methods approach was taken that included semi-structured interviews with key stakeholders (12 clinicians, 4 people living with axial SpA) to understand the experiences and impacts of delayed diagnosis and the costs incurred, survey data and data sets of anonymised patient information. Stakeholders also assisted in validation of the model.