Between the beginning of the COVID-19 pandemic and September 2021, 4.1 million people in the UK were asked to ‘shield’, including those with autoimmune conditions such as rheumatoid arthritis. Shielding recommendations included staying at home, avoiding all face-to-face contact with those outside shielders’ households, and limiting interactions within households. Here, Dr Charlotte Sharp and Lynn Laidlaw discuss recent research that shielding experiences throughout the pandemic impacted people’s ability to manage their health conditions – and explore how policy should incorporate the lessons of the pandemic.

• Immunocompromised people’s experiences of shielding throughout the pandemic have added an additional emotional and organisational work to the management of their illness and personal lives.
• There is a broad perception that people were asked to manage their condition alone without the support from healthcare professionals and without proper information.
• Health policymakers, the NHS, and other relevant public health bodies should ensure accurate data collection and management, efficient communication with patients, and physical and mental health care provisions for shielding communities.

COVID-19 affected every aspect of everyday life, including the impact of repeated ‘lockdowns’ in the UK. But for 4.1 million people in the UK, the lockdown was an ongoing, rather than intermittent, experience. Those deemed at the highest risk from coronavirus – including those with autoimmune conditions such as rheumatoid arthritis – were asked to ‘shield’ for their own protection. With the exception of two months in the autumn of 2020, shielders were asked to remain in their accommodation and avoid face-to-face contact with those outside their household for over a year.

Now a new report led by shielders, alongside researchers based at The University of Manchester and funded by Versus Arthritis, details the stories of people who lived through shielding, the impact on their physical and mental health, and how the lessons learned from this pandemic can inform planning for the next. 48 participants gave their time to this study, through focus groups, interviews, and creative materials.

Highlighted in the report are four primary ways in which shielders were affected:

• the emotional impact of shielding
• the difficulties in managing their health
• the day-to-day impact of accessing supplies, and the impact on home and work life
• and the effect on self-identity and place within society after isolating for so long, alongside the feeling of abandonment when formal shielding ended.

Managing shielders’ health

Insights from the research show that people who were shielding saw an increase in the amount of work required to manage their illness. This is partly due to notification mismanagement when it came to informing people that they needed to shield, with some being “bombarded” with information, and others experiencing delays in receiving advice which was sometimes inconsistent.

Access to healthcare services was also impacted by shielding. Indeed, the onus of responsibility to care for this complex patient group was felt to have shifted from a predominantly secondary care model, to one much more dependent upon primary care. Importantly, many research participants reported having difficulty accessing the ‘third primary dose’ of the vaccine, for example, because their GPs didn’t know they were eligible. Many also felt they didn’t have the information to make an informed choice about how to behave, and lacked clear guidance to inform their decision-making. There was a perception that the buck was being passed between different services; this difficulty in obtaining the vaccine led to additional work for shielders.

Emotional work

There was profound emotional impact from being identified as clinically extremely vulnerable, asked to shield, and then to manage personal risk in the context of significant uncertainty when the various lockdowns ended and ‘freedom day’ was announced. Although emotions occurred at different paces for different people, key emotions experienced included fear, abandonment, guilt, and a feeling of being out of control. While shielders lived with their conditions daily, being asked to shield was, for some, a sudden and shocking realisation that their conditions could be life threatening in the context of COVID. For some, this has led to a long-term change in their perception of their health.

Participants reported being fearful of being labelled as clinically vulnerable, and what this might mean for their care if they became very unwell with COVID-19. As time passed, however, fear turned to anger and frustration for many. People expressed their anger towards government for problems with identifying who needed to shield and the mechanics of shielding. Participants with children also expressed feeling distressed at viewing their child as a potential risk to their health and expressed concern about the impact on their relationship. Some participants with children lived separately to their family to ensure their children could return to school without endangering their own health.

Many participants also reported experiencing mental health problems such as anxiety and depression for the first time in their lives, which represented additional impact on shielders’ emotional work.

When did shielding ‘end’?

Officially, the advice to shield paused in April 2021, and the shielding programme ended in September of the same year. In reality, individuals took their own approaches to shielding, with many making individual risk assessments of each activity. Participants struggled conceptually with the abrupt end to formal shielding because it was regarded as arbitrary. For example, one participant mentions that the end of shielding should’ve been “more phased out”.

Policy recommendations

The findings from this research serve as an important resource to advise policymakers, healthcare professionals and the wider health systems across the UK on how to serve shielding communities better. We have identified three key areas of policymaking which would benefit from the lessons learned in this work:

Future preparedness

The UK Health Security Agency and public health bodies across the UK with responsibility for pandemic preparedness should develop an impact assessment framework for shielding, based on the four areas of impact outlined in this report. In preparation for future pandemics, NHS bodies across the UK must ensure that data collection and sharing are maintained and improved in order to generate the Shielded Patient List. NHS Bodies across the UK should also work towards embedding processes to ensure more effective communication between providers and patients.

Public engagement

People with lived experience of shielding should be involved in designing approaches and content for people who are shielding as well as wider pandemic planning processes. Integrated Care Systems and Health Boards should map any pandemic-related resources and support and ensure effective signposting to patients.

Mitigating the consequences of shielding

Future mental health plans released by government health departments across the UK need to address the mental health needs of people who were required to shield, with funding allocated to support those with unmet needs resulting from the pandemic.

The Department for Work and Pensions should ensure that there is adequate employment protection, and enforceable workplace adjustments, for immunocompromised or immunosuppressed people.

Lastly, NHS bodies across the UK need to make greater provisions to ensure that people required to shield can continue to access the essential health services they need, both in-person and online. Some of the participants in this research reported no delay in treatment, but others described experiencing “stripped back” consultations, while others said the lack of in-person appointments with their GP meant it wasn’t recognised “how actually unwell I was”.

It is acknowledged that COVID-19 took the world by surprise, even though a global pandemic had been predicted as a realistic threat for some time. The initial lack of detailed guidance and coordinated support for shielders must therefore be seen in the context of policymakers rapidly reacting to developing events and scientific advice. However, the long-term effects of shielding could have been mitigated by better planning and preparedness, and this report can contribute to providing a better experience from those most at-risk from future pandemics.

Our report marks only the beginning of understanding the impact of shielding, and the experiences we have collected can already start to aid policymakers in mitigating the worst effects in future pandemics. The voices of COVID have spoken – now they must be heard.