People who shielded during the Covid pandemic say they have been treated like “second class citizens” whose needs have been ignored.
As the next stage of the Covid Inquiry opens, charity Versus Arthritis and the University of Manchester reveal evidence of the brutal toll shielding had on people’s lives, including some who were forced to stop living with their children and others who lost their jobs.
Covid Shielding Voices, funded by Versus Arthritis, reveals how shielders felt that society treated them like “second-class citizens” after lockdowns lifted and shielding support was removed, including being discriminated against in the workplace.
Deborah Alsina MBE, Chief Executive of Versus Arthritis, says “people should not be punished for having a health condition. There is a profound opportunity for the Covid Inquiry to learn from the experiences of those who shielded and to understand what went wrong.”
The charity is asking the Inquiry to acknowledge the serious failings by Government on shielding and that more can be done to protect vulnerable groups now and in the future.
4.1 million people across the UK were identified as clinically extremely vulnerable (CEV) to Covid-19 and were asked to shield during the pandemic. People with conditions like rheumatoid arthritis were among this group because their condition and the medicines they are prescribed can weaken the immune system.
Participants in the study, led by patients and researchers at The University of Manchester, initially felt protected by the shielding programme but say they were “thrown to the wolves” when it suddenly ended on 15th September 2021, citing the lack of support to protect them as the rest of society opened up.
Patients and researchers worked together to analyse the experiences of people with autoimmune arthritis and rheumatic conditions who shielded, and to show what lessons can be learned from their stories for future pandemic planning.
Participants’ experiences are varied, covering the impact on home and work life; difficulties in accessing healthcare; the effect on self-identity and place within society after isolating for so long; and the feeling of abandonment when formal shielding ended.
The study found many examples of people being discriminated against at work due to their need to follow shielding guidance. Some say they have been met with “tutting” and “eyes rolling” for following occupational health advice, such as avoiding work areas, while others were made redundant from their jobs. Those who were supported to work from home have felt “excluded” and disadvantaged, “missing out on those important conversations”.
Shielding impacted family relationships and often disrupted family members’ ability to attend school and work, leading to extraordinary personal sacrifices. One mother explains how she contemplated whether sending her child to school was more important than her own survival: “Is putting [my child] first sending them to school and letting them live a normal life […]? Or is putting them first protecting their mum so that there’s less risk that they one day don’t have a mum? Where do you draw the line, what’s more important?” Another woman who faced the same dilemma ended up moving out of the family home.
Versus Arthritis supported thousands of people with conditions like rheumatoid arthritis who shielded throughout the pandemic, including Professor Martin Eve, 37, who lives with his wife in Kent. Martin has rheumatoid arthritis (RA), which caused him to develop secondary immunodeficiency – where the immune system is weakened by another treatment or illness – and ultimately kidney failure. He is still shielding today. He said:
“At times, shielding has been extremely depressing. At other times, reassuring. I was very grateful it was there, as it meant I was safe. I could do most of my job from home too at that point. It was when the support evaporated, and it became our own personal responsibility to avoid catching Covid, that things became much harder.
“I had to change my job to continue to work from home full time. To this day, the official guidance for vulnerable people is basically: ‘Avoid people who have covid infections.’ But the Government withdrew everything that would help us do that. The subtext is that you will have to just avoid society if you can’t avoid people with Covid.”
Lynn Laidlaw, a patient and member of the research team who also had to shield, said:
“We felt it was important to bring the existing, mainly data driven, research into shielding to life. Our research sought to understand people’s experiences and the impact of shielding by talking to them about their experiences. It highlighted the importance of personal context, including employment and family situations, pushing back against the narrative that everyone who shielded is similar and were ‘going to die anyway’.
“It highlighted the work involved in managing shielding, alongside the work of living with long term, chronic conditions. The participants in this research wanted, and deserved, to be treated as individuals by society, and to receive medical advice and care that understood their personal situation.”
Deborah Alsina MBE, Chief Executive of Versus Arthritis, said:
“This timely report is a stark reminder of the impact Covid-19 had not only on people with autoimmune arthritis and rheumatic conditions, but everyone who shielded. The findings show that people in this group are not being met with the empathy they deserve.
“We want the Covid Inquiry to acknowledge the serious failings by Government on the shielding programme and the manner in which it ended. Learning from these mistakes and from the experiences laid out in our report will enable all of us to do more to protect vulnerable groups now and in the future, starting with the absolute basics – greater understanding and kindness towards those who shielded.”
Dr Charlotte Sharp, lead researcher of the study at the University of Manchester and consultant rheumatologist, said:
“Shielding was a necessary and hugely important intervention to protect people who were more vulnerable to COVID-19 than the healthy population. Participants told us their frustration about how shielding was initiated, including a lack of clarity on who should be included, and wide variation in communications about the need to shield. People had difficulty accessing food and medicines making them have to choose between staying safe and getting these basic supplies.
“The most harrowing time for many shielders who participated in our study was ‘freedom day’. Whilst the rest of society regained their freedom and went ‘back to normal’, shielders were no longer protected by measures such as social distancing and mask-wearing. To stay safe their freedom was more curtailed than previously, leading some to describe this as ‘incarceration day’. We want the Covid Inquiry to learn lessons from the challenges faced by shielders to inform policy for future pandemics.”
