Rethinking Schizophrenia

A landmark engagement project led by lived experience

Rethinking Schizophrenia is the largest engagement in a decade with people directly affected by schizophrenia. Co-produced by Rethink Mental Illness and funded by Boehringer Ingelheim Limited, the project was led by 46 Experts by Experience (EbEs) - 20 people living with schizophrenia and 26 family members, friends, and carers.

6 EbEs helped shape the format of engagement sessions by designing the questions we asked people. This co-production group were also involved in reviewing the report in draft stage, ensuring our entire process was grounded by the voice of lived experience.

“Thriving is about your freedom, happiness, relationships, and things you look forward to.” - Expert by Experience

Through group discussions and one-to-one engagement sessions, we explored factors affecting the wellbeing and quality-of-life for people living with schizophrenia. The result is a powerful report that centres lived experience to reframe policy and practice from just managing symptoms to enabling people to live meaningful, fulfilling lives.

Click here to download the executive summary

Click here to download the full report

What people shared

The report identifies nine key themes that emerged from the lived experiences shared:

Quality of Life

People want support that enables them to thrive - not just survive - with hope, structure, and meaningful relationships.

Identity and Intersectionality

Factors like age, gender, race, neurodiversity and culture shape each person’s experience of care.

Family and Carer Involvement

Carers play a vital role in recovery, yet they are often excluded from care plans and left unsupported.

Physical Health

Mental and physical health are deeply connected, yet are too often treated separately.

Mental Health Services

People need consistent, accessible, person-centred care supported by long-term relationships with professionals.

Having Purpose

Employment, education, and volunteering are key to a sense of self-worth and recovery.

Life Circumstances

Access to safe housing, income, and social security are foundational to wellbeing.

Stigma

Misconceptions continue to shape experiences, both within mental health services and in the wider community.

Thriving

Recovery is holistic. People need communities, connection, and long-term, joined-up support to truly thrive.

What Needs to Change

This report calls on government and system leaders to:

Refocus services to prioritise quality of life, and move beyond symptom management.
Tackle inequalities through culturally competent, inclusive, and intersectional care, with a specific focus on the rollout of NHS’ Patient Carer Race Equality Framework (PCREF) and implementing the Black Mental Health Manifesto.
Ensure carers and families are involved as a key part of care planning and ensure they receive adequate support.
Integrate considerations for physical health into mental health care, recognising their interconnection. Invest in mental health services, social care, and housing to enable meaningful recovery.
Improve access to opportunities that support people’s recovery, such as education, volunteering, and employment.
Challenge public and professional perceptions of schizophrenia perpetuated by stigma.
Provide personalised opportunities to people living with schizophrenia that enables them to thrive, not just survive.

A Call to Action

Since the 2012 Schizophrenia Commission report, some progress has been made, but too many people are still being let down. This latest report offers a blueprint for change, grounded in real experience.

Let’s work together to rethink what it means to live well with schizophrenia and build a future that’s shaped by the people who know it best.

Click here to download the executive summary

Click here to download the full report

This project has been commissioned by Boehringer Ingelheim Limited to support Rethink Mental Illness’s work in understanding more about the experiences of those living with schizophrenia. For more details, about this project, please visit www.rethink.org/campaigns-and-policy/policy-and-influencing/rethinking-schizophrenia/rethinking-schizophrenia-disclaimer/