The Rare Autoimmune Rheumatic Disease Alliance (RAIRDA) has released the results of a major UK-wide survey, Rare Care Matters, highlighting long-standing issues in the diagnosis, treatment, and support of people living with rare autoimmune rheumatic diseases (RAIRDs), such as Sjögren’s, Lupus, Scleroderma, Raynaud’s, and Vasculitis
The survey, completed by over 1,300 people across the UK, reveals:
- 1 in 3 patients waited over five years for a diagnosis
- 86% said the wait negatively impacted their daily lives
- 73% reported worsening mental health
- Only 16% felt they had enough access to information and support
- Just 26% had confidence in their GP’s understanding of their condition
Even after diagnosis, many respondents described disjointed and inconsistent care.
As a proud member of RAIRDA, we at Sjögren’s UK support the urgent call for change. The report outlines several key recommendations, including faster referrals, dedicated care coordinators, and more investment in research to improve the experiences of the estimated 170,000 people living with RAIRDs in the UK.
Widespread Media Coverage
This vital issue is gaining national attention. The story has been featured in over 30 media outlets, including The Independent, Metro (print), Yahoo, and The National.
Bridget, RAIRDA’s Vice Chair, was also interviewed on Greatest Hits Radio London, and the piece was broadcast on Tuesday evening.
You can read more media coverage here:
We’re proud to be part of the RAIRDA alliance and will continue working to improve recognition, support, and care for those affected by Sjögren’s and other rare autoimmune conditions.
The full report can be found on RAIRDA’s page: https://rairda.org/rare-care-matters-the-struggle-to-access-diagnosis-and-care-for-rare-autoimmune-rheumatic-disease-patients/
