Persistent inequalities exist in how individuals from minority ethnic groups access mental health care. A failure to investigate how these inequalities are experienced and what they mean to people with psychosis has privileged professional narratives and hindered our understanding of how they are sustained and what could be done to reduce them. The aim of this study was to investigate the long-term experience of living with psychosis and navigating mental health services within different ethnic groups.

Our approach was informed by work on narrative analysis and prioritised the meaning that mental health services held for participants. In-depth interviews with 17 black Caribbean, 15 white British and 3 non-British white people with psychosis as part of AESOP-10, a 10-year follow-up of an ethnically diverse cohort of individuals with first-episode psychosis in the UK. Thematic narrative analysis was used to examine experiences at the personal level within and then across the individual accounts.

Service users shared many defining experiences and narratives frequently returned to individuals' first contact with mental health services, first hospital admission, the experience of impatient wards, and the meaning of medication and diagnosis in their lives. We found that experiences of powerlessness punctuated the journey through mental health services and this appeared to dominate the accounts of black Caribbean, and to a lesser extent, white British participants. The findings reveal how negative expectations and experiences of mental health services are compounded over time, creating a vicious cycle of disempowerment and mistrust that manifests for many in resistance to – or at the best passive acceptance of – intervention by mental health services. High levels of need, coupled with alienation from services, contributed to negative patterns of service use among black Caribbean participants. White participants recounted substantial, though fewer, experiences of disempowerment and more instances of shared decision making that for some helped protect positive aspects of their lives.

Against a background of entrenched social and economic disempowerment, services were experienced as disempowering by many black Caribbean people, compounding and perpetuating a sense of alienation. Concerted efforts by services to more systematically target social needs and to share power through partnership working may reduce the mistrust that many with psychosis feel when entering services and in turn reduce persistent inequalities across ethnic groups.

A higher incidence of psychotic disorders has been consistently reported among black and other minority ethnic groups, particularly in northern Europe. It is unclear whether these rates have changed over time.

We identified all individuals with a first episode psychosis who presented to adult mental health services between 1 May 2010 and 30 April 2012 and who were resident in London boroughs of Lambeth and Southwark. We estimated age-and-gender standardised incidence rates overall and by ethnic group, then compared our findings to those reported in the Aetiology and Ethnicity of Schizophrenia and Other Psychoses (ÆSOP) study that we carried out in the same catchment area around 10 years earlier.

From 9109 clinical records we identified 558 patients with first episode psychosis. Compared with ÆSOP, the overall incidence rates of psychotic disorder in southeast London have increased from 49.4 (95% confidence interval (CI) 43.6–55.3) to 63.1 (95% CI 57.3–69.0) per 100 000 person-years at risk. However, the overall incidence rate ratios (IRR) were reduced in some ethnic groups: for example, IRR (95% CI) for the black Caribbean group reduced from 6.7 (5.4–8.3) to 2.8 (2.1–3.6) and the ‘mixed’ group from 2.7 (1.8–4.2) to 1.4 (0.9–2.1). In the black African group, there was a negligible difference from 4.1 (3.2–5.3) to 3.5 (2.8–4.5).

We found that incidence rates of psychosis have increased over time, and the IRR varied by the ethnic group. Future studies are needed to investigate more changes over time and determinants of change.