key: cord-0733926-x2fwkp8o
authors: Sloan, Melanie; Gordon, Caroline; Lever, Elliott; Harwood, Rupert; Bosley, Michael A; Pilling, Mark; Brimicombe, James; Naughton, Felix; Blane, Moira; Walia, Chanpreet; D’Cruz, David
title: COVID-19 and shielding: Experiences of UK patients with lupus and related diseases
date: 2021-01-21
journal: Rheumatol Adv Pract
DOI: 10.1093/rap/rkab003
sha: cda69270de3ba09c95c5a0bfbbf5280d88752a75
doc_id: 733926
cord_uid: x2fwkp8o

OBJECTIVE: The UK’s shielding guidance for the ‘clinically extremely vulnerable’ (CEV) commenced on 23 March 2020 in response to the COVID-19 pandemic. The purpose of this study was to explore the impact of the pandemic and shielding on patients with lupus and related systemic autoimmune rheumatic diseases (SARDs). METHODS: This was a mixed-methods cohort study (N = 111) including pre-lockdown baseline surveys (March 2020), follow-up surveys (June 2020), and in-depth interviews during July 2020 (N = 25). RESULTS: Most participants had a high level of anxiety regarding their mortality risk from COVID-19 and supported the shielding concept. Shielding allocations and communications were perceived as inconsistently applied and delivered. Over half of those not classified as CEV reported feeling abandoned, at increased risk and with no support. Shielding communications increased feelings of being ‘cared about’, yet also increased fear, and the ‘vulnerable’ labelling was perceived by some to damage social- and self-identity. Over 80% of those classified as CEV stated that the classification and subsequent communications had changed their social-mixing behaviour. Despite many negative impacts of COVID-19 and shielding/lockdown being identified, including isolation, fear and reduced medical care, the during-pandemic quantitative data showed increases in most measures of well-being (which was low at both timepoints) from pre-lockdown, including reductions in the impact of fatigue and pain (Ps < 0.001). CONCLUSION: Shielding classifications and communications were generally positively viewed, although perceived as inconsistently delivered and anxiety-provoking. More frequent positively-framed communication and wellbeing support could benefit all SARD patients. Slower-paced ‘lockdown’ lifestyles may confer health/wellbeing benefits for some people with chronic diseases.

At its outset, COVID-19 was anticipated to have a significant impact on the wellbeing of patients with lupus and related systemic autoimmune rheumatic diseases (SARDs). These patients have complex multi-system disease, often with unpredictable flares and frequent use of immunosuppression, the main criteria for risk assessment and shielding classification in this group 1 .

The UK 'lockdown', commencing on 23 March 2020, was accompanied by more stringent Government guidance to those identified as 'clinically extremely vulnerable' (CEV), initially by NHS digital 2 and subsequently by hospital clinicians and General Practitioners (GPs) for further eligible patients. The identification process and shielding guidance/timescales differed for each UK devolved nation. The CEV were advised to 'shield' which included not leaving homes/gardens (except for medical appointments) and physically-distancing from other household members 3 . As a group, lupus patients and those with related conditions are likely to have been disproportionately affected by the negative impact of shielding on mental health (MH) 4 due to approximately one-third meeting shielding criteria 5 .

In addition, the adverse impact of other aspects of the pandemic on MH found in the UK population 6, 7 could also have disproportionately impacted patients with lupus and related diseases, partly due to some of the identified risk factors also being associated with SARDs, including:

• Having a pre-existing physical, or mental health 8 condition and/or multimorbidity 6 .

• Lower income and/or not having a job 9 , with pre-pandemic studies having found employment and income disadvantage among lupus and SARD patients 10,11,12 . • Reduced access during the pandemic to normal chronic illness care 13, 14, 15 . Our previous COVID-19 study found that the majority of this cohort of participants reported that disruptions to their medical care had adversely impacted their MH 14 .

However, while the published literature suggests the possibility of multiple negative impacts of the pandemic on SARD patients 4, 5, 13, 14 , this study aims to explore in-depth the nature and its magnitude (within the limits of the sample), particularly in relation to shielding.

Detailed methods, including the COREQ checklist 16 for qualitative research, is in Supplementary Data S1, available at Rheumatology Advances in Practice online.

This mixed-methods study integrates findings from: 1. Quantitative and qualitative data from a cohort of participants 14 who completed both pre-lockdown baseline (4-10 March 2020) and followup (10-21 June 2020) online surveys; 2. A content and qualitative analysis of COVID-19 posts on the LUPUS UK forum (March-August 2020); 3. In-depth interviews (July 2020).

The cohort was from a pre-existing longitudinal study 14 focusing on MH/ wellbeing, medical care and peer support (pre-registered -ISRCTN-14966097). Informed consent was taken before surveys and interviews. The online surveys were made available on the LUPUS UK forum and Lupus support UK Facebook group for study sign-up for any prospective participant meeting the inclusion criteria of: a diagnosis of lupus/other related SARD (as detailed on participants' clinic letters), 18 years or above, and resident in the UK. Survey responses were analysed and used to inform purposive (non-random selection of interviewees to ensure a wide range of socio-demographics and experiences/views) sampling.

Interviews explored participants' experiences of the shielding policy, communication, medical care, and perceived impacts on MH and behaviour. Interviews were conducted by MS predominantly by telephone. They lasted approximately one hour, were audio-recorded and transcribed verbatim.

Interviewing continued until thematic saturation 18 (no novel findings from subsequent interviews) was reached.

Integration of data sources occurred throughout, with the qualitative components analysed thematically 19 to further explore and explain quantitative results. Validity and reliability were enhanced by: MS coding all data (using Nvivo12), RH double-coding 25% of transcripts, EL and MAB reviewing qualitative data and independently generating proposed themes, confirming patients were in agreement with arising themes ("member checking") 20 , triangulation of multiple data sources and consideration of deviant cases 21 . Emerging themes were then agreed by the wider team, including patient representatives. Quantitative data were analysed using SPSS V26. Test diagnostics were examined and were all satisfactory. Paired t-tests were used for assessing change over time for continuous outcomes, and chi-squared or Fisher's exact test for categorical outcomes.

Survey respondents (N=111) and interviewees (N=25) encompassed a broad range of sociodemographic characteristics, although all but two participants were female ( Table 1) . 51% of survey participants reported being allocated to the shielding category. Any percentages/statistics reported are from the surveys.

Four key themes were identified: 1. Impact of COVID-19 on MH/wellbeing; 2. Inconsistency in riskclassification and communication; 3. The impact of the risk-classification and shielding on multiple domains; and 4. Lessons learnt from lockdown lifestyle for SARD management.

The primary outcome measure of wellbeing using changes in the total WEMBS (scale from 14 to 70 with higher scores representing better wellbeing) showed a small non-statistically significant improvement (P=0.084) from pre-lockdown (38.6) to during-pandemic (39.8) surveys, with no significant difference between shielders and non-shielders.

The three inter-personal WEMBS wellbeing measures (feeling useful, interested in other people, feeling close to others) all showed (non-significant, Ps >0.1) small reductions during lockdown.

Multiple participants discussed feeling isolated and depressed from reduced social-interaction, especially severe amongst those fully following shielding guidance and living alone: Dark moods…Loneliness. Hard living on my own. Very dark days (Ppt 67, 60s)

Many participants estimated their mortality risk from COVID-19 as very high and expressed great anxiety during interviews and in forum conversations. Anxiety was often discussed as being increased by official correspondence identifying vulnerability 'in black and white', or conversely through not having received specific or sufficient information: I felt afraid and quite panicked which led to a massive flare which lasted 6 weeks…I don't know if I will ever feel safe again (Ppt 132, 40s). Additional risk factors, such as being from a BAME group, also increased anxiety: Did make me worry more…. mainly because they still don't know for a fact why black people were dying so much…very scary and made me a lot more vigilant in being careful and safe (Ppt 136, 30s).

Less than 30% of survey respondents agreed they had felt medically supported during the pandemic.

Most reported cancellations of appointments and some received no communications or response to requests for help from rheumatology departments: Flaring badly…unable to get hold of my rheumatology team to help me…much more depressed than I was before the coronavirus outbreak. This is partly due to isolation from friends and family but also because I have felt very vulnerable due to my inability to get the medical support I have needed (Survey, 40s).

Most WEMBS measures were higher during-lockdown than pre-lockdown, with 3 significant improvements using the paired t-test: Feeling relaxed (Mean difference (MD) 0.279, 95%CI 0.103 to 0.455, P=0.002), energy to spare (MD 0.198, 95%CI 0.027 to 0.0370, P=0.024) and dealing with problems well (MD 0.243, 95%CI 0.055 to 0.432, P=0.012). Negative impacts on MH were found to have significantly lower scores (less impact) during lockdown as shown in Figure 1 . The largest changes were in reductions in the impact of being unable to be as physically active as desired (-0.752 95%CI -1.01 to -0.495. P<0.001), the impact of fatigue and pain on lives, and being made to feel lazy (Ps <0.001). These findings were explored during interviews, with participants surmising that a reduction in pressure of 'normal' life combined with the rest of society being similarly restricted reduced the negative impact on the chronically diseased: In terms of the parity, so everyone is locked in so...we haven't obviously met up, but then no-one has so we're all in the same boat, so I'm not missing out which is nice (Ppt 108, 30s)

The majority of participants felt they had coped better with lockdown than the general population, (66% of survey participants) partially explained as already having heavily constrained lives prepandemic, and/or greater resilience from living with a chronic disease: We are a group of people who know how to deal with this. More than most. We are all fighters who know our bodies better than anyone (Ppt 55, 40s). Figure 1 shows the changes to impacts on mental health from baseline (pre-lockdown -March 2020) to follow-up (June 2020).

Although some participants received prompt communication of their risk-group in late March 2020, there were often reports of long delays, and others reported receiving no information at all (22%) or conflicting information (10%). Qualitative findings were that many participants who felt they should have been classified as CEV were not. Figure 2 contains additional data on the varied reactions to shielding classification and text communications. Over 50% of those allocated to the shielding group agreed that the shielding allocation and communications had made them feel supported by government, and cared about by clinicians. However, 73.4% of shielders also agreed/strongly agreed that CEV classification and communications had increased worries about health: It made me feel like they actually knew I had serious health conditions and that they cared. [yet also]…Worried as it kind of makes you realise how vulnerable you really are and how dangerous… (Ppt 136, 30s).

A similar percentage (73.0%) reported feeling more worried about their health through not being allocated to shielding. Interviews identified that they felt at greater risk, yet without individual support or guidance in managing that risk. There was a statistically significant difference (Fisher's exact test, P=0.016) in the proportion of non-shielders (55.8%) who felt 'abandoned' compared to shielders (25.5%): I haven't felt supported by the government at all, either individually or as a key worker... As a high-risk group, I feel we were a forgotten grey area (Ppt 10, 60s).

Following the shielding classification, shielded participants received communications offering advice and support from a variety of sources, including clinicians, local council officials, volunteers, NHS and/or government. However, the quality and quantity of communication and support received varied. The majority of interviewees appreciated both the information and 'not being forgotten':

They [volunteer] cared…called me at least 4 times…They were really helpful and I felt like the person I was talking to genuinely cares and gave me all the information that was available…., the phone calls really made a difference (Ppt 136, 30s) Over 50% found individual government/NHS text messages supportive and a source of helpful information, although a minority felt they were too impersonal or uninformative. However, government briefings were widely criticised due to a lack of shielding information: I feel that as a group, shielders have been ignored in general during the three months of lock down and have not really been involved in any of the discussions about shielding (Forum, 60s).

Central Government's decisions and communications were generally considered by participants to be inconsistent and indecisive, leading to widespread distrust. Opinions on communications from the devolved governments, especially Scotland, were generally positive in terms of perceptions of clarity and transparency. The frequent Government reports highlighting that mortality was largely among those with 'underlying health conditions', was found to exacerbate social and medical insecurity in some: I think it began with [Prime minister's] assertion that only the elderly and those with underlying conditions would be adversely affected…By stating this, over and over again, he minimised this part of society. A huge group of people, who from the very top, didn't really matter, it was 'only' them, almost expendable (Ppt 29, 40s). Table 2 Being classified (or not) as CEV had wide-ranging effects on multiple domains of participants lives.

For many participants, the shielding classification provided medical and societal 'acknowledgement' and validation of the severity of their disease. However, the term 'clinically extremely vulnerable' was reported to sometimes have negative impacts on social and self-identity: I had lupus but it didn't stop me working, running, living my life. Then lockdown happened and I got all the shielding texts basically saying don't go out or you'll die…It feels like my whole identity and life has been pulled from underneath me, that I'm now a different person, an ill person, worse, whose illness impacts on those I love (Forum, 40s).

Conversely, many of those who did not receive the shielding classification, yet felt they met the criteria, expressed feelings of abandonment. For many, this was experienced as a further extension of the invalidation faced when struggling to obtain diagnosis, understanding, support and care. 

Participants generally reported greater local social inclusion and support during shielding/lockdown than pre-pandemic. There was a feeling of solidarity from the whole population being 'in the same boat' as the chronically diseased in their restricted lifestyles, and recognition of the seriousness of their diseases. However, there were also sometimes perceptions of social stigma, particularly feeling 'blamed' that lockdown restrictions for the whole population were only to protect the vulnerable:

It makes you feel like you're a burden on society, …message that has been sent out by the government, that we've all gone into lockdown to help shielded and the old people…We're made to feel othered, we are something else… incredibly isolating (Ppt 10, 60s)

The shielding classification led to support for working from home and obtaining provisions. The measures were generally very well-received, although one shielder felt her employer's insistence she work from home due to her classification was discriminatory.

The negative impact of not receiving a shielding classification was often considerable, particularly for keyworkers expected to work in high-risk healthcare/school environments, despite feeling at very high risk from COVID-19: I really felt it [classification] was unfair… I've never felt as scared to be potentially going into that [work] situation…I was in tears a lot… panic type symptoms … felt like I was alone… It's just been such a trauma and the lupus has been so bad from the stress (Ppt 47, 50s). Table 3 contains further views of the impact of shielding on identity, society and support.

Risk classification and communications were reported ( Figure 2 ) by 84% of shielders (strongly agree/agree) to have changed their behaviour in terms of social-mixing, compared to 52% of nonshielders (Fisher's Exact test on all 5 categories, P<0.001). Discussions during interviews revealed many participants were also balancing the risks/benefits themselves, with leaving the house for socially-distant exercise felt to be particularly important for their MH (Figure 3 ). However, more nonshielders (62%) reported leaving the house for exercise as opposed to 36% of shielders (Chi-squared test, P= 0.006).

Many non-shielders decided to shield, and 71% of those not allocated to the CEV group agreed they had made up their own minds regarding risk decisions, with the majority assessing themselves as higher risk than allocated: I'm taking no chances, I haven't gone through all those years just to let some virus kill me because some Doc decides I don't score enough points (Forum, 60s).

Distrust in Government was discussed as reducing adherence to guidance, particularly in relation to planned relaxing of shielding/lockdown. Most participants felt this was politically/ economically motivated and stated they would make their own decisions, usually involving maintaining greater socially-avoidant behaviour: Even if the government say things are alright, I'm going to do what's right for me…because they've not been truthful (Ppt 75, 40s).

In addition to the improvements in MH shown in Figure 1 , self-reported fatigue, pain and overall health scores all improved from pre-to -during lockdown measures, with overall health (out of 100) improving from 46.67 to 50.59 (3.92, 95%CI 0.24 to 7.60. P= 0.030). This was explored in interviews with some participants feeling pacing was easier and less guilt-inducing due to more home-based and/or online work and social lives: I don't need to physically return to work…offer to zoom…People now get that as a viable alternative so that's a good outcome for me. (Ppt 105, 50s) Many participants discussed improvements in their health due to the reduced pressure, from both themselves and society, to maintain a 'normal' life during lockdown: I am in a much better place both mentally and physically than before lockdown…I have been able to focus on me…If I don't feel like doing something…no guilt, shame, embarrassment (Ppt 111, 20s) However, other participants reported increased symptoms and flares of disease activity. The importance of outdoor exercise was also regularly highlighted, and several considered their health had worsened without the routine or purpose of work/socialising/exercising outside the home: My mobility has been hugely affected… very frustrated, angry and emotional… managed my disease better when I was leaving the house, it gave me some purpose. Staying at home has left me alone with my pain. (Ppt 132, 40s) 

The principle of shielding was very well-supported by the lupus and related SARD patients in this study. Many perceived it as a beneficent act of protection and care, providing information and practical support, and validation of the seriousness of their disease. However, the term 'vulnerable' was widely disliked. Some participants felt that being labelled 'vulnerable' subsumed all their other identities, exposed their disease-status more widely than preferred and/or classed them as a separate -sometimes perceived as of lesser value -entity to the 'normal' population. This sense of being 'othered' 22 was reported by participants to have been exacerbated by government briefings often failing to inform or acknowledge the CEV group; providing reassurance to the general public that most deaths were among those with underlying health conditions 23 ; and/or reports of the deprioritisation of people with such conditions in ICU 24 . This highlights the importance of communication strategies encouraging social cohesion and avoiding the implicit or accidental stigmatising of any 'vulnerable' group.

Whilst strongly worded messaging about COVID-19 risk engendered more socially-avoidant behaviours, it also greatly increased anxiety, which was reported by some to have precipitated disease flares. Fears were compounded by widespread distrust in central government, with perceptions of inconsistent messaging (although the devolved governments' pandemic communications were generally viewed favourably), and rapidly changing guidance, as reported in other studies 25 . Although generating anxiety can ensure higher compliance with safety measures in pandemics 26 , we agree with a recent call for encouraging adherence to behavioural guidance whilst also promoting wellbeing and 'minimising distress' 27 . This may be helped by more personalised riskassessments and more frequent, less negatively-framed messaging. Many participants perceived their mortality risk from COVID-19 as very high, when evolving understanding -rarely communicated to patients -was that it was much less than initially assumed and only marginally raised for most SARD patients 28, 29 . Although a recent study found a (slight) increased all-cause mortality rate in March-April 2020 for patients with SARDs and similar diseases compared to the general population 30 , it has not yet been ascertained how much of this increase is directly from COVID-19 or from the severe reduction and delays in medical care for lupus/SARDs, as reported in our previous study 14 14, 15 . Feelings of abandonment were highest in non-shielders, who often felt they should have been allocated to the shielding group. A study of patients with inflammatory bowel disease also found a discordance between self-and official COVID risk-assessment, especially regarding immunosuppression 34 .

Caution is required in research comparing officially allocated shielding/non-shielding groups (e.g.

Kips et al 35 ) as we found shielding allocation did not lead to two distinct groups due to participants often making their own decisions. Although socially-distant behaviour was reported to be greater in the government-allocated shielded group, most participants also balanced the risks and benefits themselves, particularly in terms of the improvements to MH from leaving the house for sociallydistant exercise 36 . The reduction in mobility and fitness reported by some shielding participants due to confinement to the house, was also found in studies of patients shielding due to other diseases 37 .

Many non-shielders independently attempted to follow the shielding guidance, yet were sometimes unable to without support with employment or provisions. This caused great stress and potentially increased risk of COVID-19, especially among some keyworkers who were expected to continue working. Being omitted from shielding classification/communication often reinforced medical insecurity, invalidation and the perception of lupus and related SARDs being widely misunderstood, generated from previous dismissive responses and misdiagnoses common in this patient group 12, 38, 39 .

Overall wellbeing as measured by the WEMBS (<40 at both time points) places this cohort in the bottom 15% of UK population samples for wellbeing 17 and points to the requirement for more wellbeing support for SARD patients regardless of the additional pandemic challenges. There was an unexpected slight improvement (non-significant) between pre-lockdown WEMBS scores in early March 2020 and June 2020, and statistically significant improvements to multiple other health and wellbeing measures including reductions in guilt, feeling a burden, and the impact of fatigue and pain on lives. Whilst not negating the need for urgent MH support for those most adversely impacted by the pandemic, it does raise questions as to why this improvement may have occurred.

Patients and the research team speculate that it may be due to the lockdown creating reduced pressure and greater opportunity to rest and pace activities without guilt, or fear of societal or selfcensure for being unable to participate fully in life. SARD patients may also have had greater resilience to potential adverse impacts on MH from lockdown/shielding due to having pre-adapted to a physically and socially constrained lifestyle, and more developed coping strategies than the general population. However, some situations that led to improvements are clearly not replicable in non-pandemic times, such as the reported reductions of sadness in missing out on 'normal' life due to the general population being in lockdown.

Limitations of this study include the fact diagnoses were self-reported. Very few male participants and under-representation of some ethnic groups, as is common in research in this patient group 40 reduces generalisabilty. Purposive sampling allowed for a more representative balance of ethnic groups for interviews, and other socio-demographic groups were well represented in both survey and interviews. All participants were initially recruited through online support groups and group members may differ in their experiences and behaviours compared to the wider lupus and SARD population. It is important to note that the findings of this study are only from the early stage of the pandemic, and views and wellbeing may well change as the pandemic progresses. Strengths include increased validation from triangulation from multiple data sources, member checking 20 and anomalous case analyses 21 .

In conclusion, there was a widespread fear of dying from COVID-19 and a high level of support for social-distancing measures including shielding. Classification and communications were perceived as inconsistent, and many SARD patients who felt that they were at high risk from COVID- 19 were not advised that they should shield. Although fear, isolation and the reduction in medical care were reported to have negatively impacted physical and mental health, some improvements occurred, likely from a reduced-paced lifestyle during lockdown. This highlights the importance of clinicians advising on modifications to busy pre-disease life-styles, self-management with pacing strategies, and flexible working for many with chronic diseases where fatigue is a major life-changing symptom.

At the time of writing, 'long COVID' clinics are being established for those experiencing ongoing symptoms including fatigue, cognitive dysfunction and pain. We strongly advocate for this type of support to be extended to patients with SARDs and other chronic diseases with similar debilitating symptoms, often experienced for many years with limited/no support to date.

Multiple SARD patients contributed to this research. A group of 5 highly engaged patient representatives, 3 of whom met the criteria for co-authorship on this paper, assisted with developing the research questions, designing surveys, and discussing and analysing data. With particular thanks to Lynn Holloway and Colette Barrere, expert patient team members, and to Paul Howard, CEO of LUPUS UK, for advice and valuable input, and to all the participants for their engagement and time in these studies despite considerable health challenges. All interested parties were involved throughout the research, including in reviewing the paper pre-publication. 

To be mentioned in briefing once every 3 months when you are the part of society most impacted by this, and whose lives have changed the most is poor. Even if they had nothing else to say, no new information, any sort of acknowledgement that we exist would have been welcomed.(Ppt 29, 40s) Pandemic communication as part of UK general population Confidence due to perceived consistency Nicola Sturgeon…she's been there every day throughout the whole pandemic and that's given me a real confidence…she takes questions and she properly answers them, she's just brilliant. I really feel we've had very good concise and clear messages (Ppt 47, 50s)

Because there's been so much to-ing and fro-ing with decisions, so are we wearing masks or not, are we in lockdown or not lockdown, there was just not really this is what we're doing and here are the reasons, and we're all going to stick to it. It was a bit wishy washy I think [so] not all that confident really so I guess that you're going to have to look after yourself and make the decisions for yourself (Ppt 108, 30s) Table 3 : Patient views on impact of shielding/ not shielding on identity, and the social and practical impact IDENTITY Discordance in self vs official view of risk, and dislike of disease being publicly known It's scary to see it in black and white that we are extremely vulnerable and high risk. I've had lupus for 30 years and I've never considered myself to be sick and vulnerable so receiving the letters and texts is quite difficult to deal with… In addition I feel cross that my condition has now been exposed to everyone. (Forum, 50s) Dislike of term 'vulnerable' and increased fear due to strongly worded risk messaging I don't have any help with anything and to then be told I'm extremely vulnerable and actually at risk of this and there's the likelihood that I'll die if I catch this. It's just scary...I hate that [vulnerable] term, it's a terrible way to put it…so they use such strong words because they want people to take it in and it to resonate with people (Ppt 80, 20s) SOCIAL Increased understanding of severity of disease I think when you have a chronic illness that isn't visible you can be regarded as a hypochondriac… If I was permanently in a wheelchair most people would realise there is a serious problem…the fact that I had to shield really brought it home to most of my family and friends. Nearly everyone telephoned to check on me. I had messages on our village Facebook page offering help. (ppt 124, 70s) Blamed for lockdown, 'cast aside' by wider society According to a large proportion of people, lockdown was introduced because of us…a constant refrain of 'keep the vulnerable (that word again) inside and let us get on with our lives.' This has made me so, so incredibly sad. I've worked hard to make sure I contribute to society... now I'm cast aside, seen as someone that needs to be locked away so as not to inconvenience everyone else. I find it hurtful that so many people see that as a logical and acceptable solution. It really upsets me (Ppt 29, 40s) Increased local community cohesion She [daughter] said she's going to remember lockdown as the year her neighbours became her family. It was such a small thing but the impact was huge. We all felt the community spirit. (Forum, 40s) SUPPORTemployment and provisions Difficulties and stress for those not meeting shielding criteria to obtain evidence for employers I think whatever criteria the government set out for these letters somehow skipped over SLE as an extremely complicated autoimmune disease itself…GP really wanted me to 'shield' for the 12 weeks as I'm very at risk but because the criteria didn't match she couldn't give me the letter. Obviously everyone knows to use their common sense and isolate at this time, but I needed this letter for work and really had to fight for it (Forum, 40s) Practical support for shopping, medications and evidence for employers appreciated I think I probably got more support as it shows how serious and dangerous my situation is…priority slots for my shopping to be delivered… medication delivered …got the free food boxes delivered from the government…I don't need to physically return to work. It now feels a lot easier (Ppt 136, 30s)

The food parcels were excellent considering what they had to do quickly and for the numbers needed (Survey, 40s)

The cheapest stuff…And that again that message from the government is, is that's what you're worth, we can furlough people at 80% of their salary, I'm not knocking that, we can pay for this and that, and we can give you all a Nando's voucher now, but you shielding people are just worth the world's worst toilet roll and an onion the size of your head (Ppt 10, 60s)

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