This article follows the webinar organized by the Lancet Citizens’ Commission on Reimagining India’s Health System, co-hosted by the Population Foundation of India, Sangath, and the Association for Socially Applicable Research (ASAR) commemorating World Mental Health Day 2022.
World Mental Health Day is marked every year on October 10. This year's theme was ‘Making mental health and well-being a global priority for all’. The pandemic has brought mental health crises into the spotlight. The world, however, was experiencing a mental health crisis well before the pandemic. It was reflected in many ways like substance use disorders, self-harm, and the substantial unmet need for care for people with mental illnesses. This calls for deepening the value and commitment we give to mental health as individuals, communities, in the health system, and at the level of policymakers. We must match this value with more commitment, engagement, and investment by all stakeholders across sectors.
The panel represented four stakeholders from diverse backgrounds concerned with mental health - lived experience, research, policy-making, and philanthropy. They discussed how goals of valuing, promoting, and protecting the mental health of all should be achieved.
The panel consisted of the following:
Shubrata Prakash, an Indian Revenue Service officer. Drawing from real-life experience and meticulous research, Shubrata shared her expert knowledge on what it means to live with depression, and how to identify your particular strain and overcome your sense of hopelessness through her book, ‘The D-word - A Survivor’s Guide to Depression.’
Raj Mariwala, the director of the Mariwala Health Initiative(MHI). MHI is an organization that is working towards a community-based nationwide mental health ecosystem improving mental healthcare accessibility for the most marginalized. Raj also serves on the boards of the global mental health action network, the lancet commission on stigma and discrimination, and Parcham- a non-profit that serves adolescent girls through sports.
Pattie Gonsalves, a mental health researcher with a background in psychology and global health. She brings specific expertise in engaging young people with lived experience through program development, research, and advocacy. She serves as a director in Sangath, an Indian mental health research non-profit where she directs research projects and digital innovations supported by a range of founders. Pattie founded the ‘It’s okay to talk’ national public engagement campaign which was recognized by Facebook as one of the leading international youth mental health projects.
Andrea Bruni, an experienced mental health professional with more than 15 years of experience in global health. He’s the regional advisor for mental health for WHO’s South East Asian regional organization.
The discussion started with Shubrata sharing her views on mental health. According to her, the very reason that we have to lay stress on the theme today that mental health needs to be made a priority comes from the fact that mental health is not given equal importance as physical health. The divide between mental and physical health is itself artificial since well-being is important no matter what form it comes in.
Shubrata, who lives with depression, anxiety, and ADHD, said that mental health in our society is only paid attention to when there is a lack of it, it is conspicuous by absence. When people begin to fall on the illness end of the spectrum, that is when they feel something is wrong with them, and only then do they seek any form of help. While severe mental illnesses are categorized by society as madness, common mental illnesses like depression or anxiety disorder are considered moral failings, weaknesses of character, or a choice that people make when they cannot cope with the challenges of life. She shared her story of how she went through five years of depression without being diagnosed.
Having been diagnosed and treated for a congenital heart condition, which took immense physical and mental strength to overcome, Shubrata faced the challenges of life with immense strength and courage. She didn’t believe depression was an illness and lacked mental health-related awareness. It was only after she was diagnosed with depression herself did she start looking at mental health from a completely different lens. While she was trying to survive depression and find ways to help herself get better she faced stigma that hampered her recovery.
She recounted some of the hurdles in her journey of healing. She was not screened for postpartum depression despite having symptoms of depression after giving birth to her child. Whilst screening is the first step to getting diagnosed, what comes next is harder. Not everyone who gets diagnosed can access care. She, herself being a part of a privileged group of people, found effective therapy expensive and hard to come by since some therapists and psychiatrists themselves made stigmatizing remarks. While we do have efficient psychiatrists and therapists, not everyone in the medical fraternity is as well acquainted with mental illnesses as they should be.
Before concluding her talk Shubrata expressed what solutions she would like to see be implemented as a person with lived experience. She suggested that there should be safe spaces created not only by people with lived experiences or psychiatrists and psychologists but by everyone in society. People could then be candid about their mental health struggles in such spaces.
Our mental health need not be perfect all the time and even when it isn’t, there must be no shame in seeking any form of help, whatever works best for you, whether it is antidepressants or therapy, she expressed. She ended with a message of hope for a better tomorrow. A world where there will be no stigma attached to talking about mental health and where there will be enough space to talk about neurodiversity and include people living with autism or ADHD and where mental well-being will be accessible to all.
Raj Mariwala then shared her approach based on the work that their organization does. According to her, there are structural and systemic barriers that decisively affect an individual’s well-being which further influences how that individual accesses both healthcare and support.
Raj’s talk focused mainly on how mental health is inaccessible to marginalized communities including people from the LGBTQ+ and Dalit communities even though they are the ones more susceptible to mental illness because of the discrimination and oppression they face She pointed out the interrelationships between homelessness, poverty, and mental illnesses and showed the vicious cycle of how homelessness makes a person more susceptible to mental illness while mental illness pushes an individual towards homelessness as well. There have been examples throughout history of how discrimination has perpetuated inequality in healthcare in general but mental healthcare in particular. Access to mental healthcare cannot be addressed in exclusion to other factors like economic, social inclusion and political, and as long as we focus on building just for the center we will never reach the margins.
Continuing with the discussion, Pattie touched upon the demographic of adolescents and young people around the world. 1 in 6 people around the world is aged between 10 to 19 years. The vast majority of young people, which is over 90%, live in Low and Middle-Income Countries (LMICs). Youth mental health problems contribute largely to the global burden of disease. Mental health problems, like depression, anxiety, and self-harm, collectively are the major cause of disability in this age group. In India, suicide is the number one cause of death among young people.
She continued to talk about key challenges in addressing young people’s mental health. The treatment gap is extremely high for youth being close to 99% in LMICs like India. Most mental health illnesses remain undiagnosed and untreated leading to a higher number of disabilities in adulthood. Most research on 10 to 24-year-olds comes from high-income countries where the conditions are completely different from those of LMICs like India. There is an increasing need to address cultural, financial, and professional challenges to improve the uptake of services.
According to her, there are several barriers along the way - limited awareness, the stigma associated with seeking health, poor follow-up, and inappropriate post-treatment rehabilitation. It is important to understand what making mental health a priority for ‘all’ really means. Mental health in young adults cannot be treated exclusively as a health condition and it needs to incorporate factors of caste, class, gender, sexuality, ability, religion, race, and age as being marginalized on even one of these grounds can have a profound effect on one’s mental health. Everyone can intervene in encouraging better mental health in our society right from an individual level to an organizational level. She shared a few of their learnings while working in the field of mental health.
Stigma continues to still be a big barrier.
Young people want to be involved but do not have the resources or training.
Context really matters, the interactions of social, economic, demographic, cultural, and health-related factors really matter, and being culturally congruent in our approach matters.
Representation is crucial as voices shape perception and action. So, it’s important to keep a check on which voices are being heard and shared.
Lastly, prioritizing evidence and accountability is important.
She concluded by sharing some recommendations from their work on how we can reach everyone.
Involving diverse youth is important right from the start of a program giving them every role from advisory roles to action roles.
Building safe spaces for dialogue and discussion that continue to promote people’s lived experiences.
Ensuring awareness and literacy building should be made a part of programs because without building engagement it might be hard to have an uptake of a program.
Early interventions by targeting young people in schools, colleges, community settings, and online might prove effective in propagating better mental health in youth.
Leveraging context-specific technologies with respect to training mental health workers as well as delivering interventions plays a key role in improving reach and accessibility.
Finally, training, advocacy, and leadership building for young people are important.
Andrea shared his presentation next which he started by sharing some data from the Southeast Asia region of the world. Roughly 260 million people live with a mental health disorder which translates to 1 in 7 people in the region. Mental health problems thus account for huge morbidity. More than 200,000 people die by suicide and several more attempt suicide. Since the huge morbidity is not tackled, the treatment gap is 75-95% in our region.
Stigma and discrimination are widespread in the region and are more pronounced towards people with severe mental health illnesses. People with severe mental health illnesses die earlier than the general population. To add to this adversity, climate change, and public health emergencies, like the COVID-19 pandemic, adversely impact the mental health of people.
However, a lot of progress has been made by various countries in this region, on many levels, starting from leadership and governance where many countries have produced mental health policies, legislations, and plans. Even beyond leadership and governance, many countries have achieved good results in terms of services provided. Nepal has been successful in reducing the treatment gap through the integration of mental health into primary healthcare through a WHO program. Thailand has strengthened its community initiatives in health settings such as primary healthcare but also in non-health settings. Srilanka’s ban on pesticides led to a drop in mortality due to suicides. Many countries have done mental health surveys to spread awareness about mental health.
The recent mental health report published by WHO, titled ‘Transforming Mental Health For All’ describes all the transitions required in our region in mental health. It describes the changes required to transform mental health by changing the existing state of mental health services in our region - increased investment and targeted investment, its integration into primary healthcare, promotion of community-based mental health services, and strengthening community engagement through active and meaningful participation of people with lived experience. Finally, it suggests integrating mental health and psychosocial support in mental health policies to tackle mental health problems in case of emergencies and disasters.
According to Andrea, the Paro declaration signed in Bhutan by member states represents a new foundation for mental health services in our region. It represents increased commitment to reduction in the mental health treatment gap.
Link to the video: https://www.youtube.com/watch?v=7DhXQsqZ4KU
The panelists took up questions from the audience following the presentations.
Question: Diagnosis in any other area of medicine doesn’t necessarily work as well in the area of mental health. What is the utility of diagnosis in mental health and does care need to be contingent on a diagnosis?
Answer:
Shubrata Prakash: On one hand, I believe labels are for jars and bottles but at the same time, it is important to know what you are dealing with so a diagnosis helps. If I hadn’t been told that I had depression, I would have never looked for ways to understand it and help myself through it and read personal accounts of other people who had gone through something similar. When it comes to mental disorders what we also need to keep in mind is that there are no blood tests or x-rays that aid in diagnosis. It’s just our thoughts and behavior which get distorted due to which we don’t recognize ourselves and become different people. In that case, it helps to have a name for the symptoms to help with care options for the people experiencing them.
Andrea Bruni: I agree with what has been said. There are some negative implications of having a diagnosis but at least from a public health perspective, we need to work with a diagnosis. It however comes with its own set of complexities when we need to define exactly what is mental health, what are the various mental health conditions, what is a mental disorder, and what is a psychosocial disability. Very often diagnoses are just a list of symptoms or dignified syndromes. We must stay away from stigmatizing these categories and discriminating against them and we need to think of mental health conditions on a continuum.
Dr. Vikram Patel: Care is not contingent on a diagnosis. A diagnosis has a utility but it cannot be the window through which care is offered. This is one of the biggest reasons for unmet needs because if care is only triggered by a diagnosis and the diagnosis is so difficult and expensive to access it simply means that care will not happen as a result.
Question: Focusing only on the biomedical aspect of an individual’s mental illness and ignoring the social determinants might only cure the person’s illness temporarily and have a poor long-term outcome. If we have to make mental health available for everyone we are going to have to grapple with social issues as well. How do we practically do that?
Answer:
Raj Mariwala: It is very important for mental health itself to recognize its role in these marginalizations and inequalities. For example, India repealed section 377 three or four years ago and it had a judgment in 2012 on trans rights. Despite these policy changes we know what’s happening in a reality where LGBTQIA+ individuals are forced to undergo conversion treatments and more. How much is the mental health curriculum learning from lived experience? In the end, we cannot look at mental health as separate from people’s contexts. If we want to address inequality in mental health we must look at how to address social determinants in therapy rooms as well as outside therapy rooms, outside randomized controlled trials, in policies, in public and private institutions like schools, workplaces, and mental health advocacy itself. So even though this is a massive issue, in mental health we cannot shut ourselves out of these.
Andrea Bruni: It is very clear that mental health goes well beyond the health domain in general. However, there is scope for mental health within the health sector to mainstream and coordinate actions in the integration of mental health in other domains.
Pattie Gonsalves: One of the ways is to really talk more about it to make it visible. Even though we talk about vulnerable people, we don’t know what it feels like to be marginalized or abused, or discriminated against. That’s why it is important for lived experiences to be shared and heard in safe spaces because they shape policies and programs which would not be shaped if those voices are not heard.
Dr. Vikram Patel: Integration of mental health care and social care is the most important because social problems almost coexist as a rule with mental health problems. It is important to focus on what is tractable rather than getting overwhelmed by huge words like policy and gender. For example, interpersonal violence, and loneliness are determinants that can have some practical strategies for, something you can actually do something about.
Question: Individuals with mental illnesses are often thought to have compromised decision-making capacities. To what extent are we going to address stigma and discrimination while we also have a system in which the only situation where a health problem can lead you to be judicially incarcerated for an indefinite period of time is when you have a mental illness? How do we separate stigma and discrimination from the coercion that many people with mental illness experience and that most people associate with mental healthcare? How do we address that?
Answer
Andrea Bruni: The CRPD (convention on the rights of people with disability) clearly says that a disability in general, mental, intellectual, or sensoria, never presents any ground for discrimination. This convention is signed by a majority of countries worldwide. What’s left is to translate this into practice and implement the contents of the CRPD on a national and sub-national level.
Dr. Vikram Patel: In India, we have the mental health act which is attempting to find that kind of balance between the rights of people with mental illness, their dignity, and their freedom of choice but also recognizing that in certain circumstances their rights to care might precede all other rights. It’s a very delicate balancing game and it’s something that needs to be dealt with on a case-by-case basis rather than a one size fits all approach.
Question: What do you think within the south Asian context might be the most powerful strategies to address stigma and discrimination?
Answer:
Shubrata Prakash: To some extent, mass media campaigns do help in addressing stigma and discrimination but they have a flip side also. Society often talks about depression being a western concept and it being a first-world problem, celebrities are thought to have a different lifestyle which is not moral which is why they end up having depression. The concept of victim blaming has been present in society for both physical and mental illnesses alike. In this case, what might help deal with stigma is if people whom we see in our everyday lives share their lived experiences about mental disorders and normalize it for others.
Pattie Gonsalves: Some of the things that anyone can do even if you are not a professional or specialist:
Learn more about mental health, more importantly from trusted sources and not from just social media sources like WhatsApp.
Learn how to ask if someone is okay and how to check up on someone’s mental health. Be compassionate in understanding that people might be struggling and that you may not completely understand what that difficulty is. Take it a step forward by reading about it from organizations that have training that last just a couple of hours but gives you a lot of confidence in talking to and supporting someone who is struggling with their mental health.
Dr. Vikram Patel: Hearing lived experiences can definitely help in tackling the stigma surrounding mental health. But the voices cannot be from just one class of society. We need diversity and especially need to hear from those who have been oppressed and marginalized. Those voices don’t always get heard. The voices from rural India and low-income communities need to be represented. We need to take active efforts in making sure that we hear from non-English speaking, non-middle class people coming from small towns and villages and speaking in local languages.
Raj Mariwala: Stigma with respect to mental health needs to be addressed on an individual level but what would be more effective is to address stigma on a social level. We need to challenge that’s present in every aspect of life around us and include mental health as one of those issues which would make our efforts more successful.
Question: In our aspiration for universal health coverage what is the role that faith-based or alternative medical practitioners can play when it comes to realizing mental health and well-being for all?
Answer:
Pattie Gonsalves: Faith-based and spiritual practices might be very important and helpful to a lot of people but we need to understand that they cannot be replacements for care. Religious institutions are an excellent point for signposting people for normalizing the idea of mental health problems and mental illnesses. Faith-based leaders can learn more about mental health and can be trained in first aid. It is essential for faith-based institutions to know where to signpost people rather than engaging in practices that might be more harmful.
Shubrata Prakash: While faith-based healers can be thought supportive behaviors, we need to be cautious with how much people rely on them. It can complement therapy but never be a substitute.
Question: All countries that signed the Paro declaration have committed to increasing the investment in mental health. If you were in charge of what the investment should be used for, what is the single most important thing that you would back in making mental health and well-being a priority for all?
Answer:
Raj Mariwala: Policies that help in connecting linkages for persons with mental illnesses and social support networks.
Pattie Gonsalves: Preventive and promotive services at school and primary care level
Andrea Bruni: To establish community-based mental health networks which include strengthening centers in the communities, psychiatric units in general hospitals but also in primary healthcare. Downsizing psychiatric hospitals and asylums through the process of deinstitutionalization makes sense from a public health perspective to reduce the treatment gap but also human rights and also tackle stigma from the health sector.
Shubrata Prakash: Mobilizing the community to spread awareness, and fight the stigma and discrimination. The community has to be the very base of all mental healthcare services.
To summarize, it is important to remind ourselves that mental well-being is equally important as our physical well-being. Talking about mental health should not just be limited to some days of the year and nor should it be a responsibility entrusted to professionals. Taking small steps like initiating conversations about mental health with friends and family can go a long way in destigmatizing mental illness. People sharing their lived experiences could encourage others around them to seek help for themselves and their loved ones. We still have a long way to go with respect to providing quality, accessible mental healthcare to all. With active participation from the community, more advocacy for equity, and policies around mental health we can slowly but surely hope to make this dream a reality.
About the Author
Divya Shrinivas is an MBBS intern at Government Medical College, Ambajogai. Apart from being a research intern at ASAR, she is a coordinator at Mukti- an NGO that helps people overcome substance use disorders. Her key interests are maternal and child health and hopes to work in the field of preventive pediatrics in the future. In her free time, she can be found reading fiction and non-fiction and watching wildlife documentaries.