The European Brain Council (EBC) is very pleased to launch the Rethinking Schizophrenia: Beyond the Voices policy report, calling to improve the lives of people living with schizophrenia across Europe. It challenges the status quo and refreshes the European policy debate on people living with schizophrenia, recognises the essential role of social support and encourages multi-stakeholder-driven policy. 

About schizophrenia

Identified as a leading cause of disability worldwide with a peak age of 20.5 years and half the cases originating before age 25 (Solmi et al., 2022), schizophrenia is a complex psychiatric condition estimated to affect 24 million people globally and 0.3-1.5% of Europeans. Despite the substantial progress in treatment, schizophrenia has still a huge societal burden, largely because of the delayed recognition, prevention and intervention (Fusar-Poli et al., 2021) with an excessively long duration of untreated disorder – 43 weeks worldwide (Salazar de Pablo, 2023). It heavily impacts every aspect of life, including relationships, education, and employment. The needs of Europeans living with schizophrenia can be summarised in three broad themes.

Prevention, early detection, and effective treatment

Education of healthcare professionals is essential to facilitate the recognition of subtle signs, early detection, and effective treatment of schizophrenia across Europe. During the interviews, people living with schizophrenia highlighted the sometimes long and winding road to diagnosis, and the related hardships of living with a condition that you cannot name, leading to a loss of self-recognition. General practitioners should be the first contact point to access a quality care pathway and work with colleagues to ensure an interdisciplinary, coordinated approach to schizophrenia.

Trust and communication are crucial to build a successful therapeutic alliance. People living with schizophrenia need their clinicians to be honest about the disorder, potential symptoms, and care options, and involve them in treatment decisions including innovative and complementary interventions combatting symptoms and limiting side effects.

A holistic approach to schizophrenia care and management

There is a need to rethink the current approach to schizophrenia care and management by integrating psychosocial and lifestyle solutions. People living with schizophrenia shared during the interviews that they can benefit from a number of psychosocial interventions, including wandering in nature, writing and painting. For people with schizophrenia to stay stable over time, it is crucial to accompany them through their care journey and thus ensure the continuity of care despite treatment changes and unexpected medication side effects.

Human rights for people living with schizophrenia

Schizophrenia is surrounded by stigma and false myths. This report challenges them with real facts: people with schizophrenia do not have a dual personality, rather than; they are generally not dangerous to themselves or others, and they can get better. They can work, function and live independently.

People fear what they do not know. By offering insight into the lives of individuals living with schizophrenia and the ripple effects on families, social dynamics, and work life, the report advocates for fostering less discriminatory and more inclusive environments, spanning schools and workplaces.