Services for people with ankylosing spondylitis in the UK--a survey of rheumatologists and patients

OBJECTIVE: . To investigate the services offered to patients with AS in the UK in 2010.

METHODS: Two thousand non-health-care professional members of the National Ankylosing Spondylitis Society (NASS) were sent a questionnaire asking about their experiences surrounding diagnosis, treatment and access to therapies (response rate 40%). A separate questionnaire was sent to a consultant rheumatologist in every acute NHS trust in the UK, asking about services offered to patients with AS (response rate 68%).

RESULTS: Overall, there was a mean diagnostic delay of 8.57 years. Almost one-third (32.2%) of patients were not reviewed in secondary care. Non-attendance was associated with increasing age and longer disease duration. Twenty per cent of patients were taking anti-TNF drugs, but 18.8% of departments reported that their ability to give anti-TNF therapy was restricted (64% reported primary-care trust rationing and 14% lack of staff). Almost all rheumatology departments had access to MRI, but 70.9% still used X-ray radiographs as their first-line investigation. A minority (5.6%) of patients reported they had never seen a physiotherapist, but less than one-third could self-refer for treatment during a flare.

CONCLUSION: This is the first study to explore the services available to people with AS in the UK. Almost one-third of patients are not seen in rheumatology departments and therefore may be under-treated. For those who are seen, access to anti-TNF drugs and other therapies remains an issue.