UK health and social care use during and after the pandemic: A qualitative study of the experiences of disabled people from minoritised ethnic groups

The COVID-19 pandemic acted as a “super-catalyst” in accelerating the United Kingdom transition to remote health and social care, while exposing and deepening existing inequities. The 18-month mixed-methods longitudinal CICADA study explored this from the perspective of disabled individuals from minoritised ethnic groups (including undocumented migrants and asylum seekers) during and after the pandemic. Since our aim was to inform improvements, we used an asset and strengths-based approach underpinned by the embodiment model of disability and intersectional theory. Here we report on findings from 271 semi-structured interviews with disabled individuals from minoritised ethnic groups, follow-on workshops with interviewees in April and September 2022, and 4 key informant interviews.

Findings revealed widespread dissatisfaction. Many found the shift to remote care inaccessible and disempowering. Challenges included difficulties in securing appointments, disrupted patient-clinician relationships, little regard for holistic care or comorbidities, and systemic exclusions due to intersecting and discriminating factors of language, accent, disability and complex needs, digital precarity, and undocumented status. Often, service management of expectations would have improved experiences. The increased burden from health and social care support-seeking counter-intuitively worsened once pandemic restrictions eased and led many to give up; others bypassed general practice or raised complaints, or relied on self-management, traditional remedies or informal support networks. Many resorted to costly and unaffordable private care, often specifically from within their communities, and often having never registered with the National Health Service. There is an urgent need for a more inclusive, tailored approach to health and social care that considers intersecting disadvantages of race, disability, citizenship and socioeconomic status, facilitates community connections and empowerment, and provides support for self-care, alternative care and education. By foregrounding community voices, this research offers valuable insights for policymakers and providers aiming to address disparities and improve health and social care outcomes for marginalized populations.