Urgent improvements are needed in the care available for patients with axial spondyloarthritis, a painful and debilitating form of inflammatory arthritis, according to a new report that reveals gaps in care provision across England.

The findings from an All-Party Parliamentary Group (APPG) inquiry revealed poor symptom recognition in primary care can result in slow or non-referral to rheumatology and only 21% of Clinical Commissioning Groups (CCGs) have a specific inflammatory back pain pathway in place. Without one, rapid referral to specialist care for those with signs and symptoms of axial spondyloarthritis is unlikely.

Approximately one in 200 of the adult population (around 220,000 people) in the UK have axial spondyloarthritis and the average age of onset is just 24 years. This includes the more commonly known condition ankylosing spondylitis.

The report also found that patients wait on average 8.5 years for an accurate diagnosis and early diagnosis is crucial to achieve an optimal treatment response and prevent structural damage in the spine causing severe disability.

Ankylosing spondylitis is under-prioritised by the healthcare system 

Launched today by APPG Chair, Derek Thomas MP, the report is based on results from Freedom of Information requests answered by 191 Clinical Commissioning Groups (CCGs) and 99 provider Trusts undertaken in 2019.

Despite being associated with significantly increased risk of poor mental health compared with other musculoskeletal conditions, the enquiry discovered that only 25% of CCGs provide patients with direct access to psychological services. 

In addition, a fifth of areas in England still do not offer specialist physiotherapy for those with the condition, despite these services being critical in helping individuals manage flare-ups and the chronic stiffness and joint pain that is synonymous with the condition.

Lord Campbell-Savours, Co-Chair of the APPG who led the inquiry and lives with the condition, said:“As someone who has personally endured half a life time of painful and debilitating symptoms, I am greatly supportive of the need to help patients effectively manage their condition and improve their day to day lives. AS has been under-prioritised by the healthcare system for far too long, with many having to wait over 8 years before being correctly diagnosed. We call for commissioners and providers across the country to do more to improve the speed of diagnosis and quality of care available for those with AS.”

Enquiry recommendations for ankylosing spondylitis

The APPG report says the enquiry has shone a spotlight on an area that has unfortunately been overlooked and under-prioritised for many years. It recommends:

  • All CCGs should have a clear and simple inflammatory back pain pathway to ensure swift referral directly to rheumatology following the NICE Guideline for Spondyloarthritis
  • Continuous Professional Development (CPD) education about axial SpA should be available via CCG intranets as a minimum. Ideally, rheumatology departments should be running annual educational sessions with Primary Care Networks
  • The importance of rheumatology physiotherapy including hydrotherapy should be promoted within NHS trusts, with all trusts providing access to a specialist rheumatology physiotherapist
  • All newly diagnosed patients should receive an individualised, structured exercise programme and, as a minimum, an annual appointment for key measurements to be taken
  • Providers should encourage multi-disciplinary working, including patients in any service development ensuring that secondary care clinicians are able to access direct referrals to mental health services

Dr Dale Webb, National Axial Spondyloarthritis Society (NASS) CEO, said: “We hear many candid and shocking accounts from those living with AS which reflect the findings of this inquiry. People with AS deserve better and so much more needs to be done to ensure that those living with this painful and debilitating condition receive the vital care and support they are entitled to. That is why we are working with local services and clinicians to raise awareness of AS and spread best practice via our groundbreaking healthcare improvement programmes.”