[Unknown type: UNSPECIFIED]
Abstract
Background and aim: Long Covid is a health condition that continues to be challenging in terms of obtaining care and support, even in the fourth year following its emergence. This study, which forms part of the STIMULATE-ICP study in England, explores the barriers and facilitators people with Long Covid face when trying to access care, as well as experiences in relation to stigma, discrimination, and inequitable treatment.
Methods: the study was co-designed with people with lived experience of Long Covid. People attending three post-covid services in England were invited to participate by clinic staff. Twenty-three participants were interviewed about their experiences in relation to barriers and facilitators of accessing adequate care, including experiences of being treated unfairly. Interviews were analysed thematically.
Findings: participants experienced difficulties in accessing and receiving appropriate support from primary and secondary care but generally care and support improved once participants were under the care of a Long Covid service. Positive interactions with clinicians who were knowledgeable and supportive helped to foster good patient experiences when accessing Long Covid care. Inequalities in accessing care were reported in the form of experiences of gender and race discrimination. People with previous and existing conditions reported further stigmatisation. Financial barriers to care existed and there were also difficulties faced by those who got infected with COVID-19 early in the pandemic. The impact of Long Covid on mental health was evident, as was the stigma related to mental health and the inadequacy of mental health service provision for people with Long Covid.
Some participants who worked within the National Health Service (NHS) perceived their professional position as a facilitator to accessing Long Covid care. However, some NHS employees also reported the negative impact of Long Covid on their work, the lack of employment support available, mistreatment from colleagues, and dismissal of professional knowledge.
Conclusion: our findings highlight a range of barriers to accessing adequate Long Covid care, with women, ethnic minorities and people with co-occurring conditions experiencing intersectional stigma. We recommend a move towards a healthcare system that is sensitive to intersectional disparities in access to care and is mindful of how stigma can reinforce these inequalities. This would speak to removing barriers to care and foster a more positive experience for people living with Long Covid already disadvantaged by structural and systemic discrimination.
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