Today, the Rare Autoimmune Rheumatic Disease Alliance (RAIRDA) has launched a new report, revealing that individuals living with rare autoimmune rheumatic diseases (RAIRDs) experience stark variations in their care and treatment.
The report, developed in partnership with Ipsos, draws on survey responses from over 1,300 people across the UK and paints a concerning picture: nearly one in three respondents waited more than five years for a diagnosis, with the average wait time standing at two and a half years.
RAIRDs include serious and often life-limiting conditions such as Lupus, Sjögren’s, Vasculitis, Scleroderma, and Raynaud’s, where the body’s immune system attacks healthy tissue. These diseases can affect multiple organs at once and require specialist, coordinated care. Yet, even after diagnosis, many people still struggle with fragmented care and limited access to the right information and support.
Key findings from the report include:
- 86% of those who waited over five years for a diagnosis said it negatively impacted their ability to complete everyday tasks.
- 73% reported a negative effect on their mental health.
- 66% of working individuals said their condition impacted their ability to work effectively.
- Only 16% of respondents felt they had sufficient access to information and support.
- Just 26% had confidence in their GP’s understanding of their condition.
While some patients had more positive experiences, with a third (34%) diagnosed within a year of symptom onset and over half (56%) reporting that the different healthcare professionals caring for them worked well together. However, a third (34%) felt that their healthcare professionals did not work well together. Just over a quarter (26%) felt that they had confidence in their GP’s understanding of their condition, and only 16% felt that they had sufficient access to information and support.
RAIRDA is calling for urgent action. The report sets out a series of practical policy recommendations, including:
- The introduction of clear and measurable targets for timely referrals and treatment.
- A named care coordinator for every person with a RAIRD.
- Increased investment in research to improve diagnostic pathways.
As the first UK alliance bringing together patients and clinicians to improve the care of people with RAIRDs, RAIRDA is urging the Government and NHS bodies across the four nations to act on these findings and ensure no one is left waiting years for the care they need.