What is most concerning about the comments in this survey was the number of people who said they felt ‘abandoned’ by the health service and the rest of society in general. This came across in comments about people seeking guidance and information on their level of risk, seeking to raise issues such as a worsening of symptoms from their RAIRD and trying to understand how their care has been impacted by COVID-19.
This pandemic has caused severe disruption for people with these chronic conditions. But the crisis is also “chronic”, in the sense that many of these issues with care or support have their roots in problems which were present long before this crisis. If we do not get our response to these issues right, the consequences will be long-lasting.
Sue Farrington, Co-Chair, RAIRDA, Chief Executive, Scleroderma and Raynaud’s UK
From April 27th to May 15th 2020 we conducted an online survey of people with RAIRDs. We received over 1,300 responses from across the UK. This report is based on these survey responses and covers a range of issues which have affected people with RAIRDs during the COVID-19 pandemic from healthcare to employment and financial issues.
- 54% of respondents to the survey were currently shielding.
- 80% of people with these conditions had experienced a change in their care.
- 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.