Low awareness and recognition of AS
AS has a low profile among both the medical profession and the public and because back pain can have a number of causes it is easy for AS to go undiagnosed.
The way people with AS are referred
GPs may focus on trying to manage people with lower back pain and not consider referring on to appropriate specialists such as rheumatologists.
X-rays do not always pick up AS early enough
MRI scanning is a better option since this can pick up the early joint damage due to AS before this is evident on an x-ray. X-ray changes due to AS may take many years to show up.
Lack of access to the right specialists
Experts in other forms of spinal pain are not necessarily specifically skilled in treating inflammatory back pain and associated conditions. For the best outcomes it is vital that people with AS are managed by rheumatologists as part of a multidisciplinary team.
Patchy access to the best medical and surgical treatments
The last decade has seen much improvement in treatments that offer better symptom control and quality of life. Early access to these is critical.
Lack of long-term follow-up and management
For the right decisions to be made at the right time, people with AS need long-term monitoring by appropriate experts and/or ready access to advice or treatment when necessary.
Recommendations for the standards of care every AS patient should expect
1. GP to consider AS as a possible diagnosis if you have symptoms of back pain and stiffness which are not improving
2. GP to refer you to a rheumatologist as soon they suspect AS
3. An MRI scan to establish the reason for your pain and stiffness rather than x-ray, since MRI is more sensitive to early joint changes
4. Access to appropriate specialists including a rheumatologist, physiotherapist and specialist nurse
5. Information and open discussion with your specialists about the full range of therapies available - such as anti-TNF therapy - and which treatments will be best for you and why
6. Access to expert surgical assessment and treatment for people with severe spinal deformity who may wish to have surgery to correct this
7. Regular follow up and ready access to expert reassessment to include monitoring for bone health/osteoporosis and cardiovascular risk among others
8. Information on and access to sources of support including physiotherapy, financial advice and psychosocial services
If you would like more information please download the Looking Ahead report.