Salford professor invited to House of Commons to launch findings of national inquiry

Axial SpA is an inflammatory arthritis condition, where the main symptom is back pain. Access to early diagnosis and treatment is crucial as Axial SpA is a systemic condition which can lead to disability in daily activities and work and mortality due to an increased cardiovascular risk. Approximately 1 in 200 of the adult population in the United Kingdom have Axial SpA. 

Findings from the new inquiry show that patients with the condition 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.

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.

Yeliz, (pictured below) whose research interest in Axial SpA is also fuelled by her lived experience, has written a foreword for the launch of the report ‘About Axial SpA in England: Are services improving?’.

Yeliz said: "I was delighted to be invited to introduce this report inquiring into the NHS Services in England for Axial SpA, written in partnership with the All-Party Parliamentary Group in Axial SpA and the National Axial Spondyloarthritis Society (NASS). I have experienced the negative consequences of delayed diagnosis and access to treatment for this condition at first hand, despite my privileged clinical and academic background in rheumatology. This report shows that many people are not as fortunate, and we need to act urgently to change this.

"The APPG calls upon all Integrated Care Boards in England to implement the recommendations in this report to help to improve time to diagnosis, treatment and care for people with Axial SpA. The British Society for Rheumatology is in full support of these recommendations, and campaigns for Parliamentary intervention to improve homecare medicine delivery service and to address rheumatology workforce crisis by increasing the number of consultants, specialist nurses, specialist physiotherapists, occupational therapists, podiatrists, clinical psychologists, MSK radiologists and pharmacists working in rheumatology to achieve this."

Recommendations in brief:

1. All Integrated Care Boards (ICB) should adopt the Best MSK Health Collaborative and Getting it Right First Time (GIRFT) in Rheumatology axial SpA pathway as part of local MSK improvement planning.
2. Education programmes should be in place locally for primary care practitioners to recognise the signs and symptoms of inflammatory back pain.
3. Local services should optimise resources, including diagnostic testing, at the point of referral and ensure that patients see the appropriate clinician at their first appointment to ensure the 8-week target of referral to treatment is met.
4. Specialist physiotherapy needs to be recognised by ICB planning as a key component of a multidisciplinary team (MDT) approach in both the diagnosis and management of axial SpA within rheumatology, to help manage resource and give the best possible outcomes for patients.
5. Trusts should have access to specialist axial SpA services and support within their ICB to help diagnose and manage complex cases.