About the Gold Standard Time to Diagnosis

The National Axial Spondyloarthritis Society invites your input into an important new consultation that we have launched to help inform the development of a ‘Gold Standard Time to Diagnosis’ in axial spondyloarthritis (axial SpA), including ankylosing spondylitis (AS).

As you may be aware, axial SpA is a form of inflammatory arthritis that most commonly affects the spine. It is a painful and progressive long-term condition affecting approximately 220,000 people in the UK (1 in 200 adults), for which there is currently no cure. It currently takes on average 8 ½ years for someone living with axial SpA within the UK to be diagnosed, during which time people can experience significant amounts of pain, physical disability and anxiety. In short, those affected pay a heavy physical and psychological price for this delay.

Despite the current system pressures resulting from COVID-19, we think however that there is real scope for significantly reducing this delay in the coming years, ­and we ultimately believe that axial SpA can, and should, be diagnosed on average within a year from the onset of symptoms. Achieving this is within our gift and would have the effect of delivering transformative health and wellbeing improvements for all those affected by axial SpA. It would also support the NHS to become a world leader in axial SpA service delivery in the process.  

To help identify the key barriers and opportunities for achieving this vision, NASS and leading national axial SpA clinical experts have identified four key reasons for the delay in diagnosis, alongside the corresponding solutions to overcoming them. These high-level delays and solutions are included within ‘annex 1’ of this document, with more detailed tactical suggestions for delivering change provided within ‘annex 2’ of the Word document. Further detail and supporting rationales for all of these areas are included within the corresponding consultation proposal document that has also been shared with you.

As a next step, we are now seeking to engage a broad range of key stakeholders involved in the national and local organisation and delivery of axial SpA services on these proposals, as well as those living with the condition. Consultation questions are included overleaf, responses to which will help inform our scope and how we look to move forward in the months ahead. We know we will only be successful in this journey if we are to work collaboratively. We would therefore be hugely grateful for your time in responding to these questions, which should take around 10-15 minutes to complete.

For any further information, please contact goldstandard@nass.co.uk

Gold Standard Time to Diagnosis is led by National Axial Spondyloarthritis Society (NASS) in partnership with Norfolk & Norwich NHS Foundation Trust and RUH Bath NHS Foundation Trust.

The Gold Standard Time to Diagnosis programme is funded by UCB as sponsor of the project. UCB is a non-voting member of the project board and has no editorial control over the content or output of the programme.

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