The Rare Autoimmune Rheumatic Diseases Alliance (RAIRDA) conducted an online survey of people with RAIRDs (including lupus) from April 27th to May 15th 2020. We received over 1,300 responses from across the UK.

“Chronic Crisis: The Impact of COVID-19 on people with rare autoimmune rheumatic diseases” is a report based on these survey responses and covers a range of issues which have affected people with these conditions during the COVID-19 pandemic; from healthcare to employment and financial issues.

Key findings

• 54% of respondents to the survey were currently shielding.
• 80% of people with these conditions had experienced a change in their care and treatment.
• 37% of these people said that their ability to manage their condition had been affected as a result. Virtual or telephone appointments can be helpful, but on their own they are insufficient to give all these patients the care they need.
• 33% of people with RAIRDs say the pandemic has adversely impacted their household finances compared to 23% of the general public.
• 34% of people with RAIRDs said that advice from the health service or the government was “unclear and contradictory”.
• Some people raised concerns about accessing healthcare due to not wanting to add to the burden on the NHS or fears of infection with COVID-19. However, many more commented that they felt ‘abandoned’ due to a lack of clear information about their level of risk or the way their treatment plan had been changed.

 

When COVID-19 does recede as a public health concern, these conditions will still be with us. The testimony of people with RAIRDs in this report shows the need to improve the way these people are cared for and communicated to.

READ FULL REPORT HERE