Rethinking Schizophrenia

Rethinking Schizophrenia is a research-driven project offering tangible policy changes 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 and encourages multi-stakeholder-driven policy. The project falls under #BeyondTheVoices campaign.

About Schizophrenia

Schizophrenia is a complex mental health condition identified as one of the 15 leading causes of disability globally. While an estimated 24 million people live with schizophrenia, approximately 7–8 individuals out of 1000 will be diagnosed in their lifetime. In Europe, schizophrenia affects 0.3–1.5% of the population. Despite the low prevalence, schizophrenia has a huge societal burden: often diagnosed between late adolescence and early adulthood, with later onset in women, it impacts every aspect of life, including relationships, education, and employment. Despite the substantial progress in the treatment, people with schizophrenia have a life expectancy 10-20 years below that of the general population. Associated with unemployment and early retirement, psychiatric comorbidities, and premature death, schizophrenia has the highest median societal cost per patient of all mental illnesses.

Phase One – Beyond the Voices of Schizophrenia

Despite improvements and innovation in recent years, people living with schizophrenia face variations in access to optimal treatment and care. There is a lot about schizophrenia that is not fully understood and the high-quality care and support needed by people living with this condition is often unavailable.

There is a clear need to rethink the management of schizophrenia and redesign the care pathways to ensure optimal treatment and care for all people living with schizophrenia in Europe. Based around patient testimonies, the aim of the project was to highlight the need to optimise the way we manage schizophrenia by building a strong, coherent, evidence-based policy narrative which speaks to the current priorities in schizophrenia and draws from the current policy landscape in Europe.

The Rethinking Schizophrenia project falls under the Rethinking the management of brain disorders series, research-driven projects offering policy recommendations to make tangible changes with the aim to improve the lives of people living with brain disorders, neurological and mental alike, across Europe.

Beyond the Voices:
Policy Report

Rethinking Schizophrenia Policy Report

Phase Two – Optimising Schizophrenia Care Pathways in Europe

The second phase of the project, Rethinking the Schizophrenia Care Pathway, co-created by the European Brain Council (EBC) and the European Psychiatric Association (EPA), aimed to examine health gains and societal impacts resulting from optimal healthcare interventions in comparison with current care or inadequate treatment and convert data evidence to policy recommendations on how to improve the care pathways.

With a typical onset during late adolescence or early adulthood, schizophrenia requires lifelong treatment, combining pharmacological and non-pharmacological approaches. Early symptom recognition and timely interventions can greatly enhance functional recovery, however recent reports have identified significant gaps in access to timely assessment and shared decision-making, compounded by the unprecedented demand for mental healthcare among young people. Such high demands create challenges for health care services in delivering not only timely and evidence-based care but also safe and person-centered, as recommended by the World Health Organization. There is a need to improve prevention and care of young individuals with first episode psychosis (the onset of schizophrenia) to safely and effectively transition between various types of care tailored according to individual needs.

Rethinking-Schizo_Phase2_Report-Final

To address these issues, the Rethinking Schizophrenia project conducted an analysis of patient care pathways across nine European countries (Belgium, Denmark, France, Germany, Hungary, Italy, Poland, Spain, and the UK). This second part of the project aimed to put forward an in-depth patient care pathway analysis in order to define specific strategies to advance the prevention and treatment of schizophrenia. Results highlight the urgent need for a more coordinated and multidisciplinary care approach to schizophrenia care, which fed into concise policy recommendations of the study paper.

Three key priorities are highlighted for enhancing schizophrenia care:
• Early assessment and intervention
• Continuity of care and shared decision-making
• A recovery approach in the treatment journey

Furthermore, as part of the European College of Neuropsychopharmacology 2025 Congress in Amsterdam, the project was presented during a poster session titled ‘Innovative Approaches to Early Psychosis Care‘.


Phase Three – Country Profiles

The third phase Country Profiles (2025-2026) will examine the ways how to introduce policy changes guided by these recommendations at the European and country levels, bringing a brain health approach to schizophrenia prevention and care. Bringing together experts, policymakers and patient voices at national level, phase 3 assesses how individual countries can turn policy recommendations into actionable solutions. This phase will spotlight country-specific profiles for Poland, Denmark and Germany, starting with a roundtable in Warsaw (Poland) on June 5th – during the Polish EU Presidency.

Poland

On 5 June 2025, the European Brain Council (EBC) and the Mental Health Power Foundation organised a roundtable titled “Beyond Mental Health – A Brain Health Approach to Schizophrenia Prevention and Care” in Warsaw. Held under the patronage of the Polish Presidency of the Council of the European Union and the Polish Psychiatric Association, this high-level roundtable gathered key stakeholders from healthcare, education, social policy, research and patient organisations. The event provided an opportunity to discuss innovative strategies for improved schizophrenia prevention and care in Poland, within a broader European brain health framework.

Rethinking Schizophrenia in Poland Schizophrenia and Brain Health-Final

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Key Policy Recommendations

Poland is undergoing a critical reform of its mental health system, aiming to transition from hospital-based care to a modern, community-oriented model. This transformation aligns with EBC’s call to rethink schizophrenia care through the lens of brain health – prioritising early detection, integrated care, cross-sector coordination, and youth-focused prevention.

  • Train general practitioners (GPs), educators, paediatricians, etc., and strengthen primary care integration (training initiatives like mhGAP);
  • Introduce practical early diagnostic tools;
  • Expand psychoeducation tools and resources for both families and caregivers.

  • Expand MHCs to national coverage;
  • Introduce shared electronic records (EHRs) and care coordinators;
  • Ensure seamless child-to-adult care transitions by establishing integrated care pathways.

  • Boost housing, employment, and social reintegration programmes;
  • Expand support for caregivers

  • Scale up awareness campaigns targeting youth and schools;
  • Embed mental health education in curricula.

  • Support interdisciplinary training;
  • Fund more schizophrenia research, especially for those under 18 years-of-age;
  • Promote more clinical trials and pharmacovigilance initiatives for paediatric mental health treatments;
  • Develop a national mental health information platform in Poland for the public.

In December 2025, the Rethinking Schizophrenia Country Profiles continues in Denmark through a webinar titled ‘A Comprehensive, High-Quality Approach to the Treatment of Schizophrenia in Adolescents and Young Adult’. The webinar, set to take place online on 8 December 2025 (16:00-17:30 CET), will discuss and present country-specific findings, illustrating barriers and best practices in implementing comprehensive care pathways in Denmark. Experts will discuss youth-focused key policy recommendations, including early detection programs, access to innovative pharmacological and psychosocial treatments, integrated care models and digital health solutions. Registration is free and open to anyone. An update on the project will be shared thereafter.

Experts involved in the project

  “Rethinking Schizophrenia is a very valuable initiative. It helps us better understand the journeys of people living with schizophrenia and their families – not only within psychiatric care, but also in the context of everyday life: work, education, and family relationships. We continuously gain new insights, particularly regarding children and adolescents affected by schizophrenia, which allows us to see their world from a different and more informed perspective.”

prof. Agata Szulc , President, Polish Psychiatry Association

“In the context of early-onset schizophrenia, in order to deliver effective support and mitigate stigmatization, priority should be given to prevention implemented within a broad and integrated framework that encompasses health care professionals, the education system, social services, and is reinforced by educational campaigns involving non-governmental organizations.”

Prof. Małgorzata Janas -Kozik , Plenipotentiary of MoH for Reform of Children and Adolescent Psychiatry

“Respect the adolescent patient’s autonomy and deliver care through a shared decision-making (SDM) model, which improves adherence and strengthens the therapeutic alliance; by treating schooling and employment as therapeutic components, we pursue not only symptom remission but also sustained engagement in education and work.”

Dr. Aleksandra Lewandowska, National Consultant of Children and Adolescent Psychiatry
“All schizophrenia patients deserve stigma-free lives regardless of their social status. EU representatives must unite for accessible and science-based care. We can beat schizophrenia together.”
MEP Tomàš Zdechovský, Member of the European Parliament, EPP, Czech Republic
“After the diagnosis of my son’s illness, I needed to respect the changes he was going through and be very patient. I chose hope and understanding.”
Bénédicte Chenu, Patient Advocate, Collectif Schizophrénies
“Nothing is impossible, even if everything is so fragile.”
Florent Babillote, Patient Advocate, Positive Minders

“I see sounds in colours, so I can speak to my paintings.”

Anastasia Benzahi, Patient Advocate, Positive Minders

“For 43 years I thought mental illness was a concept I would never have to deal with. But you know what? I’m stronger and more solid than I’ve ever been, having dived to the very depths of it.”

Péter Kéri, President, GAMIAN-Europe
“Mentally ill children need strong parents: neither sacrificing yourself nor controlling your child is helpful. Support your child to become as self-reliant as possible. You don’t live forever.”
Janine Berg-Peer, Patient Advocate, European Federation of Associations of Families of People with Mental Illness (EUFAMI)

“Schizophrenia is my unwanted travel companion for life. Humour helps me tolerate the side effects of neuroleptics and ensures a better quality of life on this journey.”

Cordt Winkler, Clinical Product Developer, Recovery Cat

“Schizophrenia is as the world of deafness. There is a lot of unutterable pain and many things which are left unsaid in schizophrenia.”

Matthieu de Vilmorin, Former President, Schizo-Oui

Project Endorsers

This project is supported with a grant from Boehringer Ingelheim. The company has no involvement in the research nor in the drafting of the report. All outputs are non-promotional and not specific to any particular treatment or therapy.