The Impact of COVID-19 on People With Rare Autoimmune Rheumatic Diseases As part of the Rare Autoimmune Rheumatic Disease Alliance (RAIRDA), SRUK works with Lupus UK, Vasculitis UK and The British Sjogren’s Syndrome Association, to campaign for improved care for people living with rare autoimmune rheumatic diseases (RAIRDs); as well as to raise the profile of these conditions, influence policy and guide future research. The COVID-19 pandemic has caused severe disruption for people living with RAIRDs. Findings from RAIRDA’s 2018 report, Reduce, Improve, Empower demonstrated that even before this public health crisis, a large proportion of affected people felt that the existing healthcare system did not always provide them with sufficient support, and that there was often a lack of knowledge at primary care level. Based on this awareness, and to better understand the impact of shielding, the disruption to care provision and the potential effect on our community’s employment and income, we conducted an online survey of people with RAIRDs in the spring of 2020. We received over 1,300 responses, including 325 from people living with Scleroderma. Alongside multiple-choice answers, there were a multitude of comments on the issues that people felt were especially important to them, that articulated their experiences over the last few months. The report, entitled Chronic Crisis - The impact of COVID-19 on people with rare autoimmune rheumatic diseases, was published in June, and the key findings included: • 54% of respondents were shielding at the time • 80% had experienced a change in their care and treatment • 37% said that their ability to manage their condition had been affected • 33% of people with RAIRDs said that the pandemic had adversely impacted upon their household finances, compared to 23% of the general public • 34% said that advice from the health service or the Government was ‘unclear and contradictory’ The data and comments from the respondents illustrate that for some people living with RAIRDs, medical care already felt disjointed and uncoordinated, and that this has been further exacerbated by the effects of the pandemic. This is particularly evidenced by the number of individuals who feel that there has been a lack of clarity in the communication of health protection advice.
Shielding letters did not arrive until May for some people, having a knock-on effect on working arrangements. Many respondents also expressed their concerns around the psychological impact of shielding and the potential harm to mental health. What is perhaps most concerning is the number of people who feel ‘abandoned’ by the health service, as a result of the lack of accessible information about how vulnerable they are, and of any changes to their treatment plans. The latter is critical, since although certain changes to the provision of healthcare for people with RAIRDs were necessary to minimise potential exposure to COVID-19, extended delays in treatment pathways can lead to additional complications. Routine monitoring is needed to assess disease activity, which may go undetected and rapidly worsen if not treated in a timely manner. 80% of respondents experienced a change in their care, with over one-third reporting that this impacted upon their ability to manage their condition. This shows a very different picture to the Office for National Statistics report on all shielding patients collected during late May, which states that fewer than one-third have experienced changes to their care. Based on the findings of this survey, we have made a number of recommendations in the final report. These include utilising the same public health messages across the NHS and within all healthcare settings to avoid confusion, as well as providing consistent support for shielding groups as lockdown eases, especially with regard to mental health, since many people still have concerns and may be feeling the effects of prolonged isolation. To read the full report, please visit: rairdaorg.files.wordpress. com/2020/06/rairda-survey-report-22.06.2020updated.pdf. The timing of the report led to Sue Farrington, CEO of SRUK and Co-Chair of RAIRDA, being quoted in The Guardian about changes in shielding guidance. Sue was also interviewed on BBC News 24 with Sara McAreavey, who was recently diagnosed with Scleroderma – discussing the impact of the updated guidance for people shielding in England. The data from the survey has been included in submissions to the following committees: UK Parliament Health and Social Care Committee; UK Parliament Business Energy and Industrial Strategy Committee and the Welsh Parliament Health, Social Care and Sport Committee. SRUK will continue to work with RAIRDA to champion Scleroderma and the needs of the RAIRDs community, throughout the COVID-19 crisis and beyond.
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