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OP63 ‘You can be in hell and they still refuse to help’: Racially and ethnically minoritised people with Long COVID reflect on poor care and support experiences*
  1. Nina Smyth1,
  2. Patrycia Gaszczyk1,
  3. Nisreen A Alwan2,3,4,
  4. Carolyn A Chew-Graham5,
  5. Rebecca Band4,6,
  6. Dipesh Gopal7,
  7. Tom Kingstone5,8,
  8. Alexa Wright9,
  9. Damien Ridge1
  1. 1School of Social Sciences, University of Westminster, London, UK
  2. 2School of Primary Care, Population Sciences and Medical Education, University of Southampton, Southampton, UK
  3. 3NIHR Southampton Biomedical Research Centre, University Hospital Southampton NHS Foundation Trust, Southampton , UK
  4. 4NIHR Applied Research Collaboration Wessex, University Hospital Southampton NHS Foundation Trust, Southampton, UK
  5. 5School of Medicine, Faculty of Medicine and Health Sciences, Keele University, Newcastle, Staffordshire, UK
  6. 6School of Health Sciences, Faculty of Environmental and Life Sciences, University of Southampton, Southampton, UK
  7. 7Wolfson Institute of Population Health, Queen Mary University of London, London, UK
  8. 8Research and Innovation Department, Midlands Partnership NHS Foundation Trust, Stafford, UK
  9. 9School of Humanities, University of Westminster, London, UK


Background Around 2 million people in the UK experience Long Covid – a patient-preferred term – ongoing, multiple symptoms following SARSCoV2 infection. Racially and ethnically minoritised communities experience higher morbidity and mortality following acute COVID-19, but how such groups experience Long Covid is not known. We explored experiences of Long Covid in racially and ethnically minoritised people in the UK, including healthcare experiences, and the extent to which the offered care matched perceived needs.

Methods We used purposive sampling to recruit 29 minoritised participants from multiple sources, achieving a good balance of genders, ethnicities, ages, and socioeconomic categories. Ethical approval was granted by the University of Westminster ethics committee (ETH2122–1074). Semi-structured interviews, reflexivity and constant comparison analysis was employed for data collection. Interview transcripts were analysed via inductive thematic analysis. We set up a Patient Advisory Group (PAG), with individuals from minoritised backgrounds who live with Long Covid or who care for someone living with Long Covid to input on study design, participant recruitment and interpretation of findings.

Results Racism in healthcare was highlighted throughout the narratives, with participants believing they were treated with less empathy and more harshly than their white counterparts. This created a sense of a lack of safety in consultations. Most of our participants described struggling to get help from primary care, as well as experiencing trivialisation and ‘gaslighting’. Nevertheless, some participants reported recognition and proactive support (e.g., especially from racially minoritised practitioners), or if they had better understanding of how to navigate the healthcare systems (e.g., as healthcare practitioners themselves). Participant narratives elaborated on the perceived power they believe GPs wielded over them including limiting referrals and prescriptions, but especially in terms of whether their suffering was legitimised or dismissed. Those with resources frequently fought to access care to meet their needs or had advocates. Others researched their own treatment plans through self-management and private care, for example. Findings have been discussed with members of our PAG. Their reflections and experiences resonated with participant narratives. Patient advisory reflections and experiences are being incorporated into ongoing analysis.

Conclusion Our findings suggested recognition of suffering is frequently withheld, yet this legitimisation would, in itself, go a long way to ease the suffering of racially and ethnically minoritised people living with Long Covid. There is a need to raise awareness of such inequalities and to focus on better relationships with racially minoritised patients.

  • Long Covid
  • inequalities
  • racism

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