Ethnic minorities experience stigma and discrimination in accessing long COVID care

New research has found that the stigma of COVID-19, racism, and discrimination in health care have impacted the ability of ethnic minority patients to access health care for long COVID symptoms.

The study, by researchers at the University of Southampton and collaborators across the country, found additional barriers included feeling unworthy of receiving care, not having enough information about long COVID, and a lack of awareness of health care options for coping with the chronic condition.

The research is published in the British Journal of General Practice.

There are an estimated 1.9 million people living with long COVID in the U.K., according to the Office for National Statistics. The prevalence of long COVID in minority ethnic groups is mixed, though research suggests people from these groups are less likely to seek health care.

People from ethnic minority backgrounds living with long COVID symptoms frequently have poor experiences of health care, the research has found. This is despite minorities being one of the groups in the U.K. most exposed to acute COVID-19 infection.

Previous negative experiences of health care can lead to a loss of trust in the NHS, which negatively affects access to long COVID support, and deepens health inequalities.

The study—by researchers from the University of Westminster, the University of Southampton, Keele University and Queen Mary University of London—reveals that empathy, validation and fairness from health care professionals in recognition of symptoms are key to gaining the trust of minority ethnic patients.

Study co-author Nisreen Alwan, Professor of Public Health from the University of Southampton who was made an MBE in 2021 for services to medicine and public health during the pandemics, said, "Clinicians and service providers must become aware of the complex nature of long COVID including patient feelings of self-doubt, experiences of stigma, dismissal and isolation that can add to the health inequalities that affect minority ethnic groups in the U.K."

Dr. Nina Smyth from the University of Westminster, which led the study, said, "Our study sheds light on the lack of trust in health care that people from ethnic minority backgrounds endure, even in 2024. Acknowledging long COVID suffering with empathy while validating symptoms will go a long way to restoring trust in health care."

Professor Damien Ridge from the University of Westminster said, "We were struck by the lack of warmth and understanding minority ethnic patients were reporting. Professionals could improve things by consciously being alert to the need to be more welcoming and open to long COVID patients."

Professor Carolyn Chew-Graham from Keele University said, "Our work has important messages for clinicians in primary and specialist care, highlighting the need to recognize the impact consultations can have on future consulting behavior, particularly in some ethnic groups.

"This work follows our contribution to the development of the Supporting Long COVID Care tool which encourages people to consider long COVID as a cause for their symptoms and to seek help."

Dr. Dipesh Gopal of Queen Mary University of London said, "This research shines a spotlight on the need for clinicians to validate patient experiences, even if illnesses are not completely understood in the case of long COVID. Having the time to care during a consultation to validate an experience can shape a person's life experience with health and health care services. Policymakers should note that this is challenging during current NHS pressures."

A patient advisor group was involved in all stages of the research. One patient advisor and GP, Ashish Chaudhry, from Lower Broughton Health Center, Salford, said, "It is key that voices from those affected by the pandemic are heard. While the pandemic is over, the suffering and the legacy of patient interactions with health care remain. Hopefully this study will raise awareness among health care professionals of some of the challenges patients face and enable compassionate care."