Objectives The Covid-19 pandemic necessitated a rapid global transition towards telemedicine; yet much remains unknown about telemedicine’s acceptability and safety in rheumatology. To help address this gap and inform practice, this study investigated rheumatology patient and clinician experiences and views of telemedicine. Methods Sequential mixed methodology combined analysis of surveys and in-depth interviews. Between and within-group differences in views of telemedicine were examined for patients and clinicians using t-tests. Results Surveys (Patients n = 1,340, Clinicians n = 111) and interviews (Patients n = 31, Clinicians n = 29) were completed between April 2021 and July 2021. The majority of patients were from the UK (96%) and had inflammatory arthritis (32%) or lupus (32%). Patients and clinicians rated telemedicine as worse than face-to-face consultations in almost all categories, although >60% found it more convenient. Building trusting medical relationships and assessment accuracy were great concerns (93% of clinicians and 86% of patients rated telemedicine as worse than face-to-face for assessment accuracy). Telemedicine was perceived to have increased misdiagnoses, inequalities and barriers to accessing care. Participants reported highly disparate telemedicine delivery and responsiveness from primary and secondary care. Although rheumatology clinicians highlighted the importance of a quick response to flaring patients, only 55% of patients were confident that their rheumatology department would respond within 48 hours. Conclusion Findings indicate a preference for face-to-face consultations. Some negative experiences may be due to the pandemic rather than telemedicine specifically, although the risk of greater diagnostic inaccuracies using telemedicine is unlikely to be fully resolved. Training, choice, careful patient selection, and further consultation with clinicians and patients is required to increase telemedicine’s acceptability and safety.

Objective To explore the impact of patient-physician interactions, pre- and post-diagnosis, on lupus and undifferentiated connective tissue disease (UCTD) patients’ psychological well-being, cognitions and healthcare-seeking behaviour. Methods Participants were purposively sampled from the 233 responses to a survey on patient experiences of medical support. Twenty-one semi-structured interviews were conducted and themes generated using thematic analysis. Results The study identified six principal themes: 1. The impact of the diagnostic journey; 2. The influence of key physician(s) on patient trust and security, with most participants reporting at least one positive medical relationship; 3. Disparities in patient-physician priorities, with patients desiring more support with Quality of Life (QoL) concerns; 4. Persisting insecurity and distrust, which was prevalent, and largely influenced by previous and anticipated disproportionate (often perceived as dismissive) physician responses to symptoms, and experiences of widespread inadequate physician knowledge of systemic autoimmune diseases; 5. Changes to healthcare-seeking behaviours, such as curtailing help-seeking or under-reporting symptoms; and 6. Empowerment, including shared medical decision making and knowledge acquisition, which can mitigate insecurity and improve care. Conclusion Negative medical interactions pre- and post- diagnosis can cause a loss of self-confidence and a loss of confidence and trust in the medical profession. This insecurity may persist even in subsequent positive medical relationships and should be addressed. Key physicians implementing empowering and security-inducing strategies, including being available in times of health crises and validating patient- reported symptoms, may lead to more trusting medical relationships and positive healthcare-seeking behaviour.

Objectives The aim was to explore patient experiences and views of their symptoms, delays in diagnosis, misdiagnoses and medical support, to identify common experiences, preferences and unmet needs. Methods Following a review of LUPUS UK’s online forum, a questionnaire was posted online during December 2018. This was an exploratory mixed methods study, with qualitative data analysed thematically and combined with descriptive and statistically analysed quantitative data. Results There were 233 eligible respondents. The mean time to diagnosis from first experiencing symptoms was 6 years 11 months. Seventy-six per cent reported at least one misdiagnosis for symptoms subsequently attributed to their systemic autoimmune rheumatic disease. Mental health/non-organic misdiagnoses constituted 47% of reported misdiagnoses and were indicated to have reduced trust in physicians and to have changed future health-care-seeking behaviour. Perceptions of physician knowledge and listening skills were highly correlated with patient ratings of trust. The symptom burden was high. Fatigue had the greatest impact on activities of daily living, yet the majority reported receiving no support or poor support in managing it. Assessing and treating patients holistically and with empathy was strongly felt to increase diagnostic accuracy and improve medical relationships. Conclusion Patient responses indicated that timely diagnosis could be facilitated if physicians had greater knowledge of lupus/related systemic autoimmune diseases and were more amenable to listening to and believing patient reports of their symptoms. Patient priorities included physicians viewing them holistically, with more emotional support and assistance in improving quality of life, especially in relation to fatigue.

Objective To explore the self-reported impact of the COVID-19 pandemic on changes to care and behaviour in UK patients with systemic autoimmune rheumatic diseases, to help ensure that patient experiences are considered in future pandemic planning. Methods This was a longitudinal mixed methods study, with a cohort completing baseline surveys in March 2020 and follow-up surveys in June 2020 (N = 111), combined with thematic analysis of the LUPUS UK forum and participant interviews (N = 28). Results Cancellations of routine care and difficulties accessing medical support contributed to some participants deteriorating physically, including reports of hospitalisations. The majority of participants reported that fear of COVID-19 and disruptions to their medical care had also adversely impacted their mental health. Feeling medically supported during the pandemic correlated with multiple measures of mental health and perceptions of care, including the Warwick-Edinburgh Mental Wellbeing Score (r = 0.44, p = 0.01). Five themes were identified: 1. Detrimental reduction in care; 2. Disparities in contact and communication, (medical security vs abandonment sub-theme); 3. Perceived and actual endangerment; 4. The ‘perfect storm’ of reduced clinician ability to help, and increased patient reticence to seek help; and 5. Identifying the patients most vulnerable to reduced medical care. Conclusion The diversion of resources away from chronic disease care was perceived by many participants to have caused adverse outcomes. Fear about increased vulnerability to COVID-19 was high, contributing to healthcare-avoidant behaviours. This study also highlights the influence of clinician accessibility and patients feeling medically supported on multiple measures of physical and mental health.

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.

'The dying of the light': the impact of the spending cuts, and cuts to employment law protections, on disability adjustments in British local authorities. AbstractAdjustments to working arrangements and the working environment have enabled organisations to recruit and retain valuable staff and helped disabled individuals to work and progress in their careers. The qualitative study reported in this paper indicates that generally good adjustments related practice across 33 British local authorities was beginning to deteriorate under the impact of government spending cuts; and was at further risk from the dismantling of legal protections. The findings have implications for local authorities, but also for national policy makers and those wishing to influence them.

even if it is true on site, the nature of the dusts involved and the quantities affecting the local population could well be different.Afacan's allusion to research into occupational exposures in the mining industry is irrelevant in the community setting and his reliance on occupational exposure standards is unwise. The numbers ofpeople employed in open cast mining is low, so it is unlikely to improve community health by bringing jobs and increased prosperity to the area. Chambers has eloquently expressed the feelings that the "spectre of open cast mining" brings to a community.'We would welcome a major epidemiological study to evaluate the size of the risk and the nature of the mechanisms involved, but in 1989 the Secretary of State for Wales felt that no such study was required.

Objective To better understand rheumatology patient and clinician pandemic-related experiences, medical relationships and behaviours in order to help identify the persisting impacts of the Covid-19 pandemic, and inform efforts to ameliorate the negative impacts and build-upon the positive ones. Methods Rheumatology patients and clinicians completed surveys (Patients N = 1,543, Clinicians N = 111) and interviews (Patients N = 41, Clinicians N = 32) between April 2021 and August 2021. A cohort (N = 139) of systemic autoimmune rheumatic disease patients was also followed-up from March 2020 to April 2021. Analyses used sequential mixed methods. Pre-specified outcome measures included the Warwick-Edinburgh Mental wellbeing score (WEMWBS), satisfaction with care, and healthcare-behaviours. Results We identified multiple ongoing pandemic-induced/increased barriers to receiving care. The percentage of patients agreeing they were medically supported reduced from 74.4% pre-pandemic to 39.7% during-pandemic. Ratings for medical support, medical-security and trust were significantly (p< 0.001) positively correlated with patient WEMWBS and healthcare-behaviours, and decreased during the pandemic. Healthcare-seeking was reduced, potentially long-term, including from patients feeling ‘abandoned’ by clinicians, and a ‘burden’ from Government messaging to protect the NHS. Blame and distrust were frequent, particularly between primary and secondary care, and towards the UK Government, whom <10% of clinicians felt had supported clinicians during the pandemic. Clinicians’ efforts were reported to be impeded by inefficient administration systems, and chronic understaffing, suggestive of the pandemic having exposed and exacerbated existing healthcare-system weaknesses. Conclusion Without concerted action—such as rebuilding trust, improved administrative systems, and more support for clinicians—barriers to care and negative impacts of the pandemic on trust, medical relationships, medical-security and patient help-seeking may persist longer-term. Trial registration This study is part of a pre-registered longitudinal multi-stage trial, the LISTEN study (ISRCTN-14966097), with later Covid-related additions registered in March 2021, including a pre-registered statistical analysis plan.