Despite widespread agreement on the best approach to diagnosing and managing Ankylosing Spondylitis (AS), many UK patients are not getting the specialist services they need. This is often because GPs confuse the symptoms with more common kinds of back pain.
Dr Helena Marzo-Ortega, from the University of Leeds and the Leeds Teaching Hospitals NHS Trust, and colleagues are now lobbying Parliament to improve access to essential tests – to confirm doctors’ suspicions of AS – as well as therapies that could limit disease damage and improve patients’ mobility.
“Many people can go for eight or ten years before their back pain is correctly diagnosed as AS,” Dr Marzo-Ortega said. “GPs are often unable to distinguish the signs of this inflammatory disorder from other more common kinds of spinal pain. This is why it is vital that people with suspected AS are referred to a specialist rheumatologist.”
Ankylosing Spondylitis affects between two and five adults in every 1000. Around 200,000 people in the UK are thought to have the condition – double the number of people with multiple sclerosis.
The condition begins with back pain and stiffness, which progressively gets worse as the disease progresses and can lead to the spine becoming deformed. The backbone will eventually fuse together completely in around 25% of cases, leading to substantial disability.
As the symptoms get worse, people with AS are forced to take more sick leave and – in some cases – to stop working altogether.
Key recommendations put forward by Dr Marzo-Ortega and colleagues in a report published by the National Ankylosing Spondylitis Society (NASS) include:
- using magnetic resonance imaging (MRI) and specialist blood tests to speed up the diagnosis of AS
- improving access to physiotherapy and water therapy services to help keep people with AS mobile
- providing more information to patients about new, effective treatments, such as ‘anti-TNF’ drugs and spinal surgery
“Everyone with AS should have access to appropriate therapies, whatever stage their disease is at,” said Dr Marzo-Ortega. “Patients should also be monitored closely even if they do not seem to be getting any worse. This condition can often progress very slowly and patients who seem okay can experience sudden ‘flare ups’ “.
The full report – Looking ahead: best practice for the care of people with ankylosing spondylitis (AS) – will be presented to MPs today at a special drop-in session at Parliament. The report was produced by an eight-strong working group of doctors, healthcare professionals and clinical researchers from across the UK.
“Many services for people with back pain are often staffed by health professional who have limited experience of inflammatory diseases, such as AS,” said Jane Skerrett, Director of NASS. “As a result, people with AS may be referred for inappropriate consultations and treatment, wasting NHS time and resources. The correct diagnosis will inevitably be delayed and opportunities to prevent irreversible damage may be missed.”
For further information:
Paula Gould, University of Leeds press office: Tel 0113 343 8059, email firstname.lastname@example.org