‘You can be in hell and they still refuse to help’: Racially and ethnically minoritised patients with Long Covid highlight poor experiences of primary care

Conference:

SAPC ASM 2023 - Brighton

Talk Code:

5E.4

Presenter:

Tom Kingstone

Co-authors:

Nisreen A. Alwan, Rebecca Band, Carolyn A. Chew-Graham, Patrycia Gaszczyk, Dipesh Gopal, Tom Kingstone, Alexa Wright, Damien Ridge

Author institutions:

University of Southampton; University of Southampton; Keele University; University of Westminster, Queen Mary University of London, Keele University, University of Westminster, University of Westminster

Problem

Around 2 million people in the UK experience Long Covid – a patient-preferred term - ongoing, multiple symptoms following a COVID-19 infection. Racially and ethnically minoritised communities experience higher morbidity and mortality following acute COVID-19 infections, but how such groups experience Long Covid is not known.

Approach

We explored experiences of Long Covid in racially and ethnically minoritised people, including healthcare experiences, and the extent to which the offered care matched perceived needs. 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, made up of individuals from minoritised backgrounds who live with Long Covid or who care for someone living with Long Covid. They have been involved in study design, participant recruitment and interpretation of results They will be invited to contribute to dissemination activities (e.g., advising on activities and/or participating in our dissemination of findings) to raise awareness of minoritised experiences of Long Covid.

Findings

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 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.

Participant narratives have been shared with members of our patient advisory group. Their reflections and experiences resonated with participant narratives resonated. Patient advisory reflections and experiences will be incorporated into ongoing analysis.

Consequences

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 patients living with Long Covid. Raising awareness of such inequalities and the need to focus on better relationships with racially minoritised patients would be a first step to solve the immediate concerns of participants.

Submitted by:

Nina Smyth

Funding acknowledgement:

National Institute for Health and Care Research - Research for Patient Benefit programme We would like to include some of our patient advisors as co-authors if this abstract is accepted.