While I waited, my pain got worse and unbeknown to me my spine started to fuse, and irreversible damage was caused.
Why do we need a faster diagnosis?
A faster diagnosis will enable people to get the right care earlier and start living well with axial SpA (AS) sooner.
Axial SpA (AS) is a condition that affects young people. Symptoms typically start in late teens to early twenties, with the average age of onset being 24 and diagnosis at around the age of 32. There are currently 220,000 people in the UK living with this painful and progressive form of inflammatory arthritis.
While people wait for a diagnosis, many withdraw from socialising, and find it harder to establish careers, form relationships, and start families.
Watch this video to find out more.
We need your help
It is time to end the eight-and-a-half-year delay for thousands of people who are waiting to be diagnosed with axial SpA (AS). We cannot do this alone and need your help.
We are currently nearing the end of a 10-month consultation process on the components of delay and the solutions we collectively think are right. We had over 200 responses to our consultation document from organisations and individuals from across the UK and from there we have held an online workshop and 1:1 discussions with more axial SpA healthcare professionals, patients and policy makers. This has enabled us to drill down to the detailed strategy and solutions that we believe will reduce delay and deliver the one-year time to diagnosis.
Our consultation process culminates on May 7 2021. If you are interested in attending this online event, which is taking place 3-5pm, please email firstname.lastname@example.org with the subject header ‘Invitation request for 7 May meeting’. Please indicate if your attendance is in a personal capacity as a member of the public or a professional capacity and name the organisation you represent.
If you have any questions about the programme or the consultation please email email@example.com
The Gold Standard Time to Diagnosis programme is funded by UCB as sponsor of the project. UCB has no editorial control over the content or output of the programme.
About the Gold Standard Time to Diagnosis programme
The Gold Standard Time to Diagnosis programme is led by the National Axial Spondyloarthritis Society (NASS) in partnership with Norfolk & Norwich NHS Foundation Trust and RUH Bath NHS Foundation Trust and is funded by UCB.
UCB (www.ucbpharma.co.uk) is a global biopharmaceutical company focused on the discovery and development of innovative medicines and solutions to transform the lives of people living with severe diseases.
The Gold Standard Time to Diagnosis programme is funded by UCB a sponsor of the project. UCB has no editorial control over the content or output of the programme.