COVID-19 has had a huge impact on people with rare autoimmune rheumatic diseases. Over the next few weeks, we’ll be featuring the stories of people with RAIRDs on our website, showing the dramatic impact the pandemic has had on different areas of people’s lives.
Sarah lives in Hampshire and has been diagnosed with a form of vasculitis. For Sarah, her autoimmune condition caused strokes as well as permanent organ and nerve damage. The immunosuppressant medication she takes to control her vasculitis, combined with issues with her respiratory system from the disease, mean she is ‘extremely clinically vulnerable’ to COVID-19. Before the second lockdown began, and the government formally recognised the need to allow people who were extremely clinically vulnerable to be furloughed, Sarah was forced to leave her job due to her concerns about the virus
“I had a role tutoring English in a secondary school. It involved a lot of moving around in busy corridors and teaching pupils from different classes or bubbles.”
“When I went to my doctor with my concerns all they could say to me was: ‘I don’t think this is the right job for you right now.’ Whilst the school tried to do everything they could and were supportive, after a few weeks back at work in September it was just clear that there was still a risk. With cases on the rise, and with a few cases in the school, I made the decision to leave my job.”
“I’m lucky that I’ve got a bit of savings to live on for a short time. However, I’m worried about whether I’ll be able to claim any other financial support like universal credit due to the fact I technically chose to leave my job.”
“Everything people who are at higher risk from COVID-19 have heard since March has told them to take this virus extremely seriously. For example, my GP was told to ask me whether I would like to be resuscitated if I got COVID-19 and became seriously ill. I’m 38 and to be discussing end of life care like that was really shocking. The fact people like me who’ve had to have that kind of conversation were being told they need to go into work, when cases were rising so dramatically, or lose their income was really shocking.”
People with RAIRDs had a 54% increased risk of COVID-19 infection and more than twice the risk of COVID-19-related death compared to the general populationSource
(Wincup, C., Amarnani, R. and Giles, I., 2021. O22 Evaluating the impact of COVID-19 on patient access to rheumatology services, medication and future care: a nationwide study of more than 2,000 patients. Rheumatology, 60(Supplement_1)
Whilst the furlough scheme is now available to people who are clinically extremely vulnerable and cannot work from home, in order to access it employees need to have been in work on October 30th meaning that, Sarah, and anyone like her who was forced to leave work before this date will not be able to receive furlough payments.
Additionally, if someone is clinically extremely vulnerable and in work, employers have the choice to place someone on SSP (statutory sick pay) instead of furloughing them. The level of financial support available under SSP is much lower than under the furlough scheme.
During the first lockdown, a small but significant number of people with RAIRDs who were ‘extremely clinically vulnerable’ were placed on SSP rather than being furloughed (See the ‘Employment and Income’ section of our Chronic Crisis report for more details). RAIRDA is concerned if employers could continue to choose to be people on SSP rather than furlough them. The low level of SSP payments will mean that this is, at best, unfair on those who are vulnerable to COVID-19 and could, at worst, force people to choose between their health and their livelihoods.
If you would like to have your own experiences featured in future posts on our website please email firstname.lastname@example.org.