A program to dramatically cut the length of time to diagnosis for people with axial spondyloarthritis has been launched in the UK.
The aim is to set a ‘gold standard’ for referral pathways to slash the current average 8.5-year delay in diagnosis to a year through raising awareness among GPs and other health professionals as well as putting in place a faster pathway for referral to rheumatology.
Work is also planned on education around education, the promotion of imaging protocols and the take up of innovative virtual imaging services through the programme being run by the National Axial Spondyloarthritis Society.
Rheumatologists and other healthcare professionals are being asked to take part in a consultation to feed into the first draft of the gold standard which will be published later this year.
Professor Karl Gaffney, Consultant Rheumatologist at Norfolk & Norwich NHS Foundation Trust said it could be incredibly frustrating when a patient finally makes it to their clinic after years of getting stuck not being able to find out what the problem was.
“And it’s even more frustrating for the patient. It’s very sad when you’re sitting with a patient and you’re hearing the same story time and time again where there’s been so many missed opportunities here. People’s lives have been turned inside out.”
One of the most important aspects of the program is getting established referral pathways in place, he said.
“We need rheumatologists to be proactive in their areas to set out if you have a patient with x, y, z, this patient should have the following investigations and that patient needs to be referred to rheumatology.”
He added that those protocols need to be shared among physiotherapists, eye clinics and other areas where patient often get stuck without a diagnosis.
“We have set up a specialist dedicated clinic so when people want to refer to rheumatology there is an axial SpA clinic and a referral form where GPs are prompted to answer specific questions.
“That process isn’t established at most hospitals for axial SpA, most don’t have dedicated clinics or specialist teams so there are many different barriers or problems.”
The gold standard will be launched in December 2020 and rolled out from next year.