Health-care access and experiences of people with a learning disability from an ethnic minority background: service user and informal carer perspectives

Purpose The purpose of this study was to explore health-care access, experiences and barriers among people with learning disabilities from ethnic minority backgrounds and their informal carers within an NHS mental health trust in the East of England. The evaluation aimed to understand experiences of health-care access, and to generate practical, service-user- and carer-informed priorities for improving equity, coordination and reasonable adjustments across the local pathways. Design/methodology/approach Multi-method service evaluation. .An easy-read questionnaire was mailed to 64 eligible service users, where 13 responded (descriptive analysis). A focus group with six carers was conducted online and transcripts were analysed using reflexive thematic analysis. The design sought feedback on service use, satisfaction and reasonable adjustments, alongside carer experiences of access, information, coordination and support. Findings “Not knowing where to find help” was the most frequent barrier, alongside language barriers, stigma and insufficient reasonable adjustments. Carers reported high weekly caregiving hours and limited respite; coordination and signposting were inconsistent, with fewer than half of survey respondents (46.15%) reporting yearly specialist input. While 69.2% of people with learning disabilities had an annual GP health check and many felt involved in their care, information gaps undermined satisfaction. Desired adjustments included earlier/later appointments and easy-read materials. Carers advocated for stronger multidisciplinary working. Research limitations/implications As this evaluation did not set out to isolate the role of ethnicity, findings reflect general experiences of health-care access rather than providing an in-depth account of how ethnicity specifically shapes these experiences. Originality/value This evaluation contributes empirical evidence to the limited research on health-care access for people with learning disabilities from ethnic minority backgrounds and their carers, bringing together both service user and carer perspectives. It highlights actionable levers, such as clearer signposting, proactive communication, staff training in learning disability and better multidisciplinary coordination – to reduce avoidable burden on families and carers and improve equitable access, experiences and outcomes for people with learning disabilities.