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Nedim Pipic—Germany

Sharing personal stories counters schizophrenia stigma

For too long, stigma has accompanied serious mental illnesses like schizophrenia. People are starting to find power in their stories to educate, tackle misconceptions, and drive change, helping others to receive better levels of care.   

People with serious mental illness feel increasingly empowered to tell their stories to drive positive change. Photo: Boehringer Ingelheim International GmbH


The ongoing and emerging crises that we are living through—the covid-19 pandemic, the climate crisis, wars and political instability, and the cost-of-living crisis—have taken a toll on our collective mental health. Reassuringly, perhaps, governments around the world have committed to the UN 2015 Sustainable Development Goals (SDGs) to improve mental wellbeing and reduce suicide rates by 2030.


But in reality, this goal is not translating into action, with 25% of World Health Organization (WHO) member states still not having a standalone mental health plan and only 46% having updated their mental health plans since 2017.


The situation in serious mental illness is even worse. The tragic reality remains that people living with a serious mental illness like schizophrenia will die 10-20 years earlier than the general population.


As new research from an Economist Impact report, commissioned by Boehringer Ingelheim, unfortunately illustrates, the stigma attached to schizophrenia remains high across many countries and cultures and is a key area that needs addressing.


Stigma present in every culture

 

Stigma can have a significant daily life impact on a person with a serious mental illness, leading to social isolation, marginalisation, and discrimination. This can prevent them from seeking help, resulting in delayed treatment and poorer mental and physical health. The impact doesn’t stop at people with mental illness; it extends to their close family and friends, who often assume the role of unpaid carers.


"With an estimated 70% of people in desperate need of care lacking access to vital health services, there is a need for governments to expand the level and quality of mental health services to meet the growing demand."

At a broader level, commonly held misconceptions can affect public attitudes and political commitment to mental health, delaying improvements and keeping the issue in the shadows. With an estimated 70% of people in desperate need of care lacking access to vital health services, there is a need for governments to expand the level and quality of mental health services to meet the growing demand.


Given others have been unable to make clear headway, how then can we tackle stigma in serious mental health and provide better care for those who need it?


Start by changing attitudes 


Stigma can be found at the root of many other challenges. While anti-stigmatisation campaigns are not a new phenomenon, some countries and organisations are taking the lead with campaigns that educate and normalise mental health treatment seeking by placing people’s lived experiences at the centre of their efforts.


In Japan, for example, the Economist Impact report found that while awareness around mental health issues have generally improved, people in rural areas are more likely to have increased misconceptions and people still often lack insight into their condition, leading to more hospitalisations.


In response to these underlying issues, a grassroots movement created by people with schizophrenia called tōjisha-kenkyū (the science of the self) has emerged and is capturing attention. It encourages people to self-reflect on their own experiences of mental health as well as share this experience to create a collective of mental health knowledge.


In 2011, the Japanese government established a Commission on Policy for Persons with Disabilities, including an expert on tōjisha-kenkyū. Corporations, universities, and hospitals are in the early stages of implementing it as a means of identifying problems and fostering diversity. It is a win-win, helping individuals to cope with their health concerns and sharing their stories so that society can learn more about serious mental health issues.


Similarly, Denmark’s ONE OF US national anti-stigma program trains volunteers with mental health experience to act as ambassadors to share their lived experiences and address the misconceptions that fuel stigma. In 2021, it became the first anti-stigma program to be integrated into a country’s national health service. 


Movements and campaigns like these are needed across multiple audiences and geographies. Central to their success appears to be the real, heartfelt, and sometimes hard-to-hear stories from people living with serious mental illnesses like schizophrenia. 


Education is a powerful weapon


Over half of the world’s population live in a country where there is just one psychiatrist to serve every 200,000 people. While there is no agreed-upon ideal ratio, this level does not come close to meeting the current demand for mental health care.


A primary reason for this is that not enough people are entering the profession, and too many of those who choose to ultimately leave. For example, a 2023 survey found that one quarter of psychiatrists in China would not choose to be a psychiatrist again if they had a choice. Put simply, psychiatry has an image problem, with many people viewing the profession as dangerous owing to the perceived risk of violence from patients.


"One solution is to re-evaluate the medical curricula to help address misconceptions of psychiatry being dangerous."

One solution is to re-evaluate the medical curricula to help address misconceptions of psychiatry being dangerous, ensuring the workforce is well trained as they enter the profession. Continuous learning opportunities can keep knowledge up to date with the latest innovations. 


The American Psychiatric Association, for example, hosts an annual Mental Health Services Conference, bringing together mental health professionals and providing the opportunity to learn about new research. Critically, this conference and its training programs offer accreditation, meaning those attending receive appropriate professional recognition.


Personalised medicine is the future


Investing in innovation and better care promises to improve disease management and have positive knock-on effects on stigma. As such, we need to ensure there is support from the public, governments, and policymakers to create an enabling environment that supports innovation and access to the latest care. 


Take innovations in personalised medicine (tailoring care to a person’s life and context) and precision medicine (care that is biologically tailored to a person), which have had a transformative impact in other therapeutic areas of medicine. Both have the potential to support improved diagnosis and prognosis in schizophrenia, as well as predict treatment response and drug metabolism, helping to improve treatment efficacy. Currently, estimates suggest that as few as 1% of ideas in precision medicine are making the transition from research to practice.


"Estimates suggest that as few as 1% of ideas in precision medicine are making the transition from research to practice."

What is now critical is ensuring that this innovation translates into practice by creating an enabling environment with the support of policy, regulation, and reimbursement. This includes ensuring that psychiatry curricula and continuous learning opportunities are routinely updated to include the latest innovations. 


Empowering people to tell their stories


With almost 1 billion people currently impacted by mental health illnesses globally, there is no getting away from this global health pandemic that threatens us all.


The opportunity to have a meaningful impact on health is there, and the advent of medical innovations and in-depth education both offer hope. But while stigma persists in the collective psyche, we risk stalling the progress that is possible. 


From a grassroots movement in Japan to appointing ambassadors in Denmark, people with serious mental illnesses feel increasingly empowered to tell their stories to drive positive change. This might well be what turns the tide in the fight against stigma in mental health.

 

 

The opinions expressed are those of the author and do not necessarily reflect the position of Re:solve Global Health.


Nedim Pipic is head of central nervous system, retinopathies, and emerging areas at Boehringer Ingelheim, with a portfolio focused on addressing high unmet needs in serious mental health conditions. He is a medical doctor by training and holds a degree from the Medical University of Vienna.

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