Patients with axial spondyloarthritis (axial SpA) are still receiving a poor standard of care and being systematically let down by the health care system, despite an investigation that called for urgent improvements in 2020, according to a new MP led national inquiry.
The findings from the inquiry, led by the All-Party Parliamentary Group on Axial Spondyloarthritis (APPG), are based on responses from 85 NHS Trusts and 36 Integrated Care Boards to a Freedom of Information (FOI) request.
The inquiry found that less than half of NHS Trusts have an ‘inflammatory back pain pathway’. As a result, GPs and other primary care professionals are not routinely referring patients direct to rheumatology for assessment and diagnosis. Low levels of awareness of axial SpA among GPs and other primary care professionals contribute to an average time to diagnosis in the UK of 8.5 years, and yet only 45% of NHS Trusts offer relevant training for GPs.
Rapid identification and treatment of axial SpA is essential. However, only 14% of patients receive a diagnosis within the recommended eight weeks from GP referral. Specialist assessment is essential, yet only 47% of patients have access to a specialist axial SpA clinic.
Many people living with axial SpA feel locked out of life. It’s common for people to experience psychological distress and 40% of patients report some depressive symptoms. People often report feelings of hopelessness, anxiety and isolation. However, only 1 in 5 rheumatology teams are able to refer directly to psychological support.
Commenting on the results of the inquiry, Dr Dale Webb, CEO at NASS said:
“It’s clear from the results of the national inquiry that people with axial SpA are being let down by the health care system. Many people fight for years to get the right diagnosis and, even then, they don’t get the care and support they need to thrive, rather than just survive with the condition. This needs to change, so that thousands of people living with debilitating pain, extreme exhaustion and fatigue get the support they deserve.”
Notes for editors
- 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.
- About the All Party Parliamentary Group on Axial Spondyloarthritis. In December 2018, the National Axial Spondyloarthritis Society (NASS) worked with parliamentarians to form the All-Party Parliamentary Group on Axial Spondyloarthritis to provide national oversight of the implementation of the NICE guidelines and Quality Standard for Spondyloarthritis. The APPG is chaired Tom Randall MP.
- About Axial SpA in England: Are services improving? The report is based on information gathered through a Freedom of Information Requests. In total 85 out of 125 trusts responded (68%) and 35 out of 40 (90%) Integrated Care Boards responded.