People shielding during Covid treated as 鈥渟econd class citizens鈥�, according to new study
People who shielded during the Covid pandemic say they have been treated like 鈥渟econd class citizens鈥� whose needs have been ignored.
As the next stage of the Covid Inquiry opens, charity Versus Arthritis and the University of 野狼社区 reveal evidence of the brutal toll shielding had on people鈥檚 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 鈥渟econd-class citizens鈥� after lockdowns lifted and shielding support was removed, including being discriminated against in the workplace.
Deborah Alsina MBE, Chief Executive of Versus Arthritis, says 鈥減eople 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.鈥�
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 野狼社区, initially felt protected by the shielding programme but say they were 鈥渢hrown to the wolves鈥� 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鈥� 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 鈥渢utting鈥� and 鈥渆yes rolling鈥� 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 鈥渆xcluded鈥� and disadvantaged, 鈥渕issing out on those important conversations鈥�.
Shielding impacted family relationships and often disrupted family members鈥� 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: 鈥淚s putting [my child] first sending them to school and letting them live a normal life [鈥? Or is putting them first protecting their mum so that there鈥檚 less risk that they one day don鈥檛 have a mum? Where do you draw the line, what鈥檚 more important?鈥� Another woman who faced the same dilemma ended up moving out of the family home.
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
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 鈥� where the immune system is weakened by another treatment or illness 鈥� and ultimately kidney failure. He is still shielding today. He said:
鈥淎t 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.
鈥淚 had to change my job to continue to work from home full time. To this day, the official guidance for vulnerable people is basically: 鈥楢void people who have covid infections.鈥� 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鈥檛 avoid people with Covid.鈥�
Lynn Laidlaw, a patient and member of the research team who also had to shield, said:
鈥淲e felt it was important to bring the existing, mainly data driven, research into shielding to life. Our research sought to understand people鈥檚 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 鈥榞oing to die anyway鈥�.
鈥淚t 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.鈥�
Deborah Alsina MBE, Chief Executive of Versus Arthritis, said:
鈥淭his 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.
鈥淲e 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 鈥� greater understanding and kindness towards those who shielded.鈥�
Dr Charlotte Sharp, lead researcher of the study at the University of 野狼社区 and consultant rheumatologist, said:
鈥淪hielding 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.
鈥淭he most harrowing time for many shielders who participated in our study was 鈥榝reedom day鈥�. Whilst the rest of society regained their freedom and went 鈥榖ack to normal鈥�, 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 鈥榠ncarceration day鈥�. We want the Covid Inquiry to learn lessons from the challenges faced by shielders to inform policy for future pandemics.鈥�