Ankylosing spondylitis (AS) patients and experts met with Delyn MP, David Hanson this week to discuss the barriers to AS patients receiving the best care for the painful and disabling spinal condition.
The patients were in Westminster for the launch of the National Ankylosing Spondylitis Society’s (NASS) report Looking Ahead which highlights the problems people with AS face due to delayed diagnosis and a lack of access to appropriate expertise and therapies.
Ankylosing spondylitis affects approximately 200,000 people in the UK[i]. Minimising the effects of disease progression and complications requires early recognition, careful long term monitoring and prompt appropriate treatment. Many people with AS have symptoms for years before the diagnosis is made. Current evidence indicates an average delay of 8 years between symptom onset and diagnosis[ii].
Early diagnosis and treatment can make a huge difference. People with AS whose condition is picked up early and managed well can be active, work normally and have a good quality of life. So it is vitally important that patients aren’t afraid to report symptoms like back pain to their GP, to go back to their doctor if their symptoms don’t improve, and to ask questions at every step in their patient journey.
Jane Skerrett, Director of the National Ankylosing Spondylitis Society (NASS) said:
“There are some centres of excellence for the treatment of AS in the UK. NASS as an organisation and patients as individuals value them and the staff who run them highly. But the number of these centres in the NHS is limited and too few patients receive optimum care as a result. This has a huge impact not only on individuals and their families but also on society. It is time for this to change, particularly since we now have the knowledge and tools to do things better.”
David Hanson MP said:
“Around 300 people in our area are living with ankylosing spondylitis. I have no doubt that more can be done to improve the services that they are receiving. Ensuring access to the appropriate specialists and treatments would mean that more patients are helped to manage their condition.”
[i] Department of Health: The Musculoskeletal Services Framework 2006
[ii] Feldtkeller E, Khan MA, van der Heijde D, van der Linden S, Braun J. Age at disease onset and diagnosis delay in HLA-B27 negative vs. positive patients with ankylosing spondylitis. Rheumatol Int 2003;23:61-6.