The World Mental Health Day has been observed since 1992 at the initiative of the World Federation for Mental Health with a particular theme every year. The theme for 2026 is ‘Lived Experiences Heard: Real Voices, Real Change’. It gives an opportunity to meaningfully engage with people with lived experience (PWLE) of mental health conditions. The theme also recognises their knowledge as a vital form of expertise and calls for their voices to shape the policies, services and decisions that affect their lives.
Lived experience is what someone has experienced personally, especially when it gives the individual knowledge or understanding that people who have only heard or learnt about such experiences do not have. In mental health, it is the unique knowledge and expertise gained from personally going through challenges or distress.
Lived experience offers an understanding of mental health conditions that textbooks and the existing literature data cannot capture. PWLE bring knowledge that cannot be gained from professional training or research alone. Personal stories should be treated as valuable insights to improve peer-led approaches and community support. Their expertise is essential to helping mental health systems to identify barriers that others may overlook. Lived experience takes many different forms—one person cannot speak for everyone.
It inspires hope by showing others that recovery and growth are possible through shared human connection. It improves care by helping design services and policies that reflect what people actually need during recovery. It helps ensure that policies, services and programmes respond to people’s actual needs and circumstances.
PWLE are often asked to share their stories but excluded from decision-making. No doubt, they are heard but the meaningful engagement extends beyond simply being heard or sharing testimonies. When PWLE are meaningfully engaged, mental health systems are likely to become more person-centred, rights-based and responsive.
However, the meaningful engagement is still not standard practice in many countries. A survey conducted by the WHO Mental Health Atlas in 2024 shows that only 37 percent of the countries reported having included PWLE in training delivered to primary healthcare workers. About 45 percent reported having ongoing collaboration with PWLE and family or caregiver advocacy groups in the planning, delivery or monitoring of mental health promotion, prevention, treatment and rehabilitation services. About 59 percent countries have mental health legislation developed in consultation with PWLE and 80 percent have a mental health policy or plan developed in consultation with PWLE.
Only 9 percent of the responding countries have fully transitioned from institution-based mental healthcare to community-based models, 53 percent remain in the early stages of this transition and 49 percent of reported psychiatric hospital admissions are involuntary.
De-institutionalisation means developing quality services and practical support within communities so that people can live with dignity, exercise choice, and remain connected to their families and communities.
Mental health institutions traditionally isolate patients and are too often associated with poor care, coercion and human rights abuses. One important priority for PWLE is the shift away from long-stay psychiatric institutions towards community-based, person-centred care. De-institutionalisation requires a carefully planned shift in funding, services and support so that people can live in their communities. Reflecting this priority, WHO is going to launch practical guidance on it. Lived experience can help make mental health programmes more relevant in this process.
PWLE are being increasingly heard, but there is still much work to do. Policies and services are stronger when they are designed, delivered and evaluated with people who use them. Most people with lived experience understand what is required for their recovery.
Like other forms of expertise, lived experience expertise helps guide decisions from the beginning and throughout—from planning policies and services to putting them into practice and assessing whether they work.
Historically, the state overlooked the opportunities to commit public policy and public resources to mental healthcare and the society turned the back on its mentally ill. Millions of people with mental health conditions remain isolated in institutions rather than receiving the support they need to live and participate in society.
PWLE want to live with dignity, freedom and support. They want rights-based, person-centred care, rather than custodial systems. We must listen to people who have experienced institutional care and involve them at every stage of de-institutionalisation.
Using the WHO Framework for meaningful engagement, governments, health systems and organisations should embed people with lived experience as equal partners across mental health policy development, service design, implementation and evaluation. Health systems should build services based on direct feedback and real needs, rather than clinical assumptions alone.
We must walk alongside individuals in the mental health system to provide empathy and practical guidance, raise public awareness and push for better laws and funding. Scientists should be helped to choose relevant topics, design studies, and interpret real-world results. On this World Mental Health Day, let us move from listening to action—and build mental health systems with PWLE, not merely for them.
Dr R C Jiloha | Former Director and Professor, department of psychiatry, Maulana Azad Medical College and G B Pant Hospital, Delhi
(Views are personal)