The personal impact of schizophrenia is poorly described in the scientific literature. The European Psychiatric Services: Inputs Linked to Outcome Domains and Needs (EPSILON) study compared representative treated prevalence cohorts of patients with schizophrenia in five European countries, to assess unmet needs, impact on caregivers, quality of life, satisfaction with services, symptoms and disability. Of the 404 patients, 79% undertook no work of any kind, and 65% were single. Low quality of life was associated with: anxiety, depression, psychotic symptoms, more previous psychiatric admissions, alcohol abuse, having no reliable friends nor daily contact with family, being unemployed, and having few leisure activities. The most frequently occurring unmet needs among the patients were: daytime activities, company and intimate relationships, psychotic symptoms, psychological distress, and information. The most common worries of relatives were about the patient's health, and their own future, safety and financial position. Psychiatric services were therefore largely ineffective in managing the personal impact of schizophrenia, especially upon work, home and family life. Research, clinical practice and disability policy developments need to address a wider range of consequences of the disorder than symptoms alone.