As COVID-19 cases, hospitalisations, and sadly deaths, begin to rise we know that many people with rare autoimmune rheumatic diseases (RAIRDs), such as lupus, scleroderma, Sjögren’s syndrome and vasculitis will be concerned about the continuing care for their condition.
The consequences of disruption of care for these conditions can be serious and much of the care patients need cannot be done remotely. For example, for some people, physical monitoring tests are the only way to detect organ damage and potential disease progression.
Despite new connective tissue and vasculitis patients being regarded as a priority in NHS guidelines, the first wave of COVID-19 saw widespread disruption to peoples’ care as many clinicians were deployed to treat those seriously ill with COVID-19. 80% of people with RAIRDs had already experienced a change or disruption to their care by mid-May 2020 and 1 in 3 of these people already felt it had impacted their ability to manage their condition. Some told us they had appointments moved back by over a year, were still waiting for test results or to start treatment, or that they were reluctant to ask for help to manage a flare. When asked to comment in their own words about the issues that mattered to them, it was deeply alarming that many said they felt “abandoned”. Over summer we have continued to hear from people who are struggling to access the support they need.
The line between essential and non-essential care and support is also hard to draw with these conditions – damage can be asymptomatic before it becomes irreversible and if escalating flares are not dealt with early, people can become critically ill.
So far, we understand that clinicians and health service leaders are determined that services will not be disrupted during any future rise in cases to the extent they were during the spring, nor do they want patients to be discouraged from seeking help due to their concerns about COVID-19. In some areas, there are plans to keep some hospitals COVID-free whilst in others, rigid infection control will prevent transmission in hospitals.
We welcome this and hope the health service will be supported to achieve this continuity of care in the coming months. Clear communication with patients about when and how they should seek help, ensuring COVID-19 hospitalisations remain low, and giving clinicians the support they need to run services effectively will all be crucial.
We understand there is a recognition in government and the health sector that shielding was an extremely difficult process and there is no sign of a return of nation-wide advice to shield yet.
If cases continue to rise, it is important that there is support for those people who are at high risk and wish to shield, such as access to the job retention scheme for those who cannot work from home and clear directives for employers. It is also important that patients have as complete an understanding of their risk as possible so they can take the steps they feel are appropriate to protect themselves.
Data from Public Health England on where cases are concentrated may also help patients make judgements about what activities they feel comfortable undertaking at the current time.