Axial Spondyloarthritis

Jerome Mayhew Excerpts

Thursday 17th September 2020 Commons Chamber

[Tom Randall]

My hon. Friend neatly explains the consequences of delayed diagnosis. A recent systematic review of the available literature found that, overall, patients with a delayed diagnosis of AS had worse clinical outcomes, including higher disease activity, worse physical function and more structural damage compared with patients who had an earlier diagnosis. Those with a delayed diagnosis also had higher healthcare costs and a greater likelihood of work disability, as well as a worse quality of life, including a greater likelihood of depression. Those are the consequences of not giving a prompt diagnosis.

We spoke earlier about the National Axial Spondyloarthritis Society, or NASS, which has identified four factors that contribute to delay: a lack of awareness among the public that AS might be the cause of their chronic pain; GPs failing to recognise the features of AS; referral to non-rheumatologists who might not promptly recognise AS; and failure by rheumatology and radiology teams to optimally request or interpret investigations. AS cannot be cured, but reducing the eight-and-a-half-year average delay in diagnosis will lead to better outcomes for those living with the condition.

The all-party group for axial spondyloarthritis, of which I am a vice-chair, suggests three steps that would help to reduce the delay in diagnosis. The first is the adoption of a local inflammatory back pain pathway to support swift referral from primary care directly to rheumatology. Low levels of referral to rheumatology from primary care represent one of the key barriers to achieving an early diagnosis of AS, and a national audit by the APPG found that 79% of clinical commissioning groups do not have a specified inflammatory back pain pathway in place, despite NICE guidelines recommending that.

[Jerome Mayhew (Broadland) (Con)]

My hon. Friend makes reference to the NICE guidelines and the quality standard on spondyloarthritis not being implemented by 79% of clinical commissioning groups. Does he agree that that simply relates to primary carers referring directly to rheumatology departments, which is not a cost issue but one of professional education?

[Tom Randall]

My hon. Friend is absolutely right, and that neatly leads me on to the APPG’s second proposal. I appreciate that the NHS is rather busy at the moment with public health messaging of one kind or another, but awareness of AS remains low and support for an awareness campaign would help to significantly raise the visibility of the condition not only among the public, but for example among GPs.

Thirdly, the APPG suggests encouraging the routine adoption of minimum service specifications across the NHS to help to reassure patients, particularly in the context of covid-19 and the difficulties many patients face in accessing key services during the recent lockdown. I would welcome any opportunity to meet Ministers separately to discuss those proposals in detail, if that were possible.

I will leave the last word to Zoë Clark, who addressed the APPG’s last physical meeting in January. She told attendees how, after getting AS symptoms aged 20, incorrect diagnoses and the impact of her condition left her socially isolated and unable to live independently, at a time when she was trying to complete a demanding four-year master’s degree in osteopathy. She said that living with undiagnosed AS was a frightening time and she ended up having to largely sacrifice her social life, due to the difficulties of balancing her degree with the pain and fatigue she regularly experienced.

No one should have to wait eight and a half years to find out what is wrong with them. I hope that we can begin to put that right.