What does the report say?  

What prevents people with AS receiving the best care?

  1. 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. 
  2. 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. 
  3. X-rays, frequently used in diagnosis, do not always pick up AS early enough. Clinicians now believe that 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.
  4. 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 the right specialists as part of a multidisciplinary team.
  5. Patchy access to the best medical and surgical treatments. The last decade has seen much improvement in imaging - vital to improving the safety and effectiveness of surgery - and treatments that offer better symptom control and quality of life. Early access to these is critical.
  6. 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. GPs to consider AS as a possible diagnosis if you have symptoms of back pain and stiffness which are not improving
  2. GPs 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

Launching Looking Ahead

Looking Ahead was launched to the rheumatology community at the British Society for Rheumatology (BSR) conference in April 2010 with over 100 people attending the session.  The event opened with  speeches from Professor Deborah Bax, the then President of the BSR; LA contributor, Dr Andrew Keat and NASS member Paul Curry who spoke most eloquently about the problems he had experienced with delayed diagnosis.

Looking Ahead was given a public launch at a drop in session at the House of Commons on July 6, hosted by Andrew George, MP.  NASS trustees and members invited their MP to come along to the session to hear at first hand from their constituents about the problems of living with AS and about the findings of the Looking Ahead report. 

Dr Karl Gaffney, Looking Ahead contributor, with Elizabeth Truss MP

Oliver Heald, MP talking to Mike Dottridge, NASS member

 Paul Curry, NASS member with Roberta Blackman-Woods, MP and Hedley Hamilton, NASS Chairman and Lewisham Branch Chairman

 

Caroline Lucas, MP with Stephen Dean, NASS Trustee and Brighton Branch Chair

Early Day Motion (EDM)*

Andrew George, MP tabled an EDM, no. 313, now available for signature; check if your MP has signed it and if they have not done so send them an email suggesting they do. It is important to get the number of signatories as high as possible.  You can find your MP by entering your postcode at ‘find a representative' on the politics page of the BBC News website (www.bbc.co.uk/news/politics).  The text of the EDM is:

That this House supports the National Ankylosing Spondylitis Society (NASS) in its work for people with ankylosing spondylitis (AS), a form of inflammatory arthritis which affects around 200,000 people in the UK with symptoms usually starting in early adulthood; notes the NASS drive to raise awareness of this condition, which can have a major impact on quality of life and ability to work; is concerned that many people with AS in the UK do not receive optimum care because of delayed diagnosis and lack of access to appropriate expertise and therapies; welcomes the recent NASS report Looking Ahead, which highlights the barriers to people with AS receiving the best care; and calls on the Government to ensure access to the specialists and treatments necessary to achieve the best possible outcomes for people with AS.

What happens next with the Looking Ahead report?

Looking Ahead is a great start but it is only a start. None of the problems it identifies will be solved overnight but it gives a clear focus to what NASS as an organisation should be working towards and what our members are entitled to expect. 

Looking Ahead was originally aimed at 3 audiences: 

  • clinicians and health professionals
  • health commissioners
  • patients 

 NASS is working to promote the messages that Looking Ahead contains to these 3 audiences and to bring about a better future for our members and for everyone in the UK with AS.

Last updated: October 2011