On 11 August, 2021, The Guardian newspaper published a story titled ‘Life waiting for vital NHS treatment: ‘the pain and anguish are too much’ .

The story shed light on the long waiting lists faced by people seeking treatment for various conditions as a result of the backlog caused by the Covid-19 pandemic. For many in the NASS community, the pain and anguish of waiting for answers is all too familiar. So we have written the following response to the Editor of The Guardian:

As lockdown restrictions ease and the vaccination programme is rolled out, a curtain has been lifted revealing a plethora of delays and waiting lists for patients living with various health conditions. Yesterday’s article about Life waiting for vital NHS treatment, featured Daniel, who has recently been diagnosed with ankylosing spondylitis (now known as axial spondyloarthritis).

The article highlighted how painful waiting for treatment can be. Sadly, an excruciating wait for diagnosis and treatment of axial spondyloarthritis
(axial SpA) is not exclusive to the post-covid world. In fact, on average people in the UK wait 8.5 years to receive a diagnosis of axial SpA.

Axial SpA is an inflammatory disease of the spine and joints. Inflammation where muscles attach to the bones, causes extreme pain. If left untreated, it can permanently fuse bones together.

The progressive nature of this condition is one of the many reasons patients require swift diagnosis and treatment. It truly is a race against the clock. While people wait their lives are put on hold. Family plans, careers and other aspirations are frozen, and patients often experience mental health issues as they wait for answers.

Axial SpA is a complicated and multifaceted condition. Symptoms vary from person to person but with the right levels of awareness and efficient referral pathways in place, we can transform the patient experience and ensure diagnoses are delivered in a timely fashion.

1 in 200 people in the UK live with axial SpA, more than multiple sclerosis and Parkinson’s combined. Symptoms start in late teens or early 20s. The average age of onset is 24 years old. Symptoms start slowly and build over time. Generally, people will experience persistent pain (longer than 3 months) in the lower back which improves with movement but worsens overnight. However, other inflammatory conditions such as uveitis, irritable bowel syndrome and psoriasis are also associated with axial SpA.

To reduce diagnosis timelines, we need to raise public awareness around the symptoms of axial SpA. We need people to recognise the signs and take action immediately. As a charity, the National Axial Spondyloarthritis Society (NASS) are working with people living with axial SpA, primary and community care, secondary care, professional bodies, commissioners, Parliamentarians and policy makers, to focus and streamline efforts to reduce the time to diagnosis from an average 8.5 years to a Gold Standard of one year.

If you are under the age of 40 and experiencing persistent back pain, check your symptoms at actonaxialspa.com and make an appointment with your GP if concerned.

Whether a person is at the stage of diagnosis or treatment it is crucial to remember that time is of the essence. With the right diagnosis and treatment, people can live very well with axial SpA.

END

Letter from:

Dr Dale Webb, CEO at the National Axial Spondyloarthritis Society
172 King Street
Hammersmith
London
W6 0QU

For any further information please contact Fiona MacAulay, Communications Manager at NASS at: fionamacaulay@nass.co.uk