Sitting with a motley group of people – motley because the group featured a celebrated film actor, media representatives with varying levels of understanding of the subject in focus, an ex-corporate honcho, a young and enthusiastic non-profit team from the city, an equally enthusiastic non-profit team from the village, village community members, community health workers, patients with mental illness and their caregivers, another non-profit that takes care of caregivers – in a village (Chinna Ekkadu, Thiruvallur) about three hours from Tamil Nadu’s capital Chennai, on a pleasant-enough day punctuated by rain, various facets of mental health started taking centre-stage, keeping us in thrall, because we didn’t know any better.
What did we know about the ways in which certain societal superstitions, misgivings and expectations aggravated the frail mind to such an extent that it caused a descent into a sort of mental darkness, a state of disconnect from reality? Consider, for example, the expectation of a boy child from a woman giving birth. A woman giving birth to two girls in succession may very often find herself in a most vulnerable situation, one where she faces neglect, barbs, a form of ostracism even. What does that do to the mind of a person who may already be experiencing postpartum depression?
What did we know about families getting trapped in a cycle of poverty because the primary earning member lost their bearings and needed constant care and vigil, which meant that another member of the family would be engaging as caregiver, unpaid and very often in the shadows?
Do we know that caregivers themselves become vulnerable to mental afflictions if caregiving is a protracted engagement? Or that roughly 70% of caregivers are women?
Do we know anything much about the social isolation that caregivers and those being cared for face?
That day, as these various aspects floated around in that room (a room with windows without panes, some without grills) in the middle of a small field in the village, there were pauses every once in a while, with the whirring of the lone portable fan as the only accompaniment. Not uncomfortable pauses, just a moment to take in these other realities.
Mental health for everyone everywhere
World Mental Health Day was just a couple of days away and to mark the day, there would be reminders galore about the imperative to give mental health the attention, priority and resources that it needs—that it has always needed. Just as well.
As LiveLoveLaugh (LLL) Foundation forges ahead in another rural setting, with crucial partnerships in place, there is a sense of things coming together – stakeholders, resources, experiences and real stories of real people.
These stories were recounted by the individuals living them out – no high pitch, no drama, none of the self-consciousness one might expect when in the presence of a person who, on the face of it, would seem to be so distant from their existence as to be almost unreal. One is talking about Deepika Padukone, of course.
In any case, most of us know about – and acknowledge – Deepika’s role in getting urban India to talk about depression, anxiety and overall mental health. CauseBecause had done an in-depth feature on this and LLL’s work back in 2020, just as we were coming out of the first nationwide lockdown. Of course, by now we also realise that in many ways the Covid-19 pandemic made mental health a priority for all, as much as physical health.
The Foundation’s CEO Anisha Padukone, in her interaction with CauseBecause around that time, had said: ‘Crises and traumatic events such as the pandemic often give rise to or aggravate mental illness. The unprecedented Covid-19 pandemic has created several disruptions in people’s lives — from their work schedules going haywire to having to redefine spaces within the house, dealing with uncertainty about the future, finances and their health, and so on. Most people are feeling a great sense of stress or anxiety. The pandemic-induced lockdown was a scenario that none of us were prepared for.’
In all of this, it is easy to lose sight of the situation in rural India, where the majority of India’s population lives. What facilities and expertise are available to those in the rural for diagnosis and treatment of mental illnesses? As it is, there is no uniformity in the quality of healthcare available there, be it infrastructure, qualified medical functionaries, or access to basic medicines. Yes, we have the National Rural Health Mission and the primary health centres (PHCs) and community health centres, with ASHAs, anganwadi workers and auxiliary nurse midwives serving as crucial interface between the village community and the public health system. Yet, while the ratio of general physicians to the population may be somewhat improving, the same cannot be said for the mental health scenario – some estimates put it at 0.75 psychiatrists per 100,000 people in India. Combine this with the fact that the majority of the psychiatrists and psychologists are in urban India.
Not only is the rural population at a disadvantage when it comes to accessing professional care and counselling, very often their economic condition also goes on a downward spiral when a family member gets afflicted with mental illness. The stigma attached to mental illness only serves to heighten the sense of isolation. One only had to listen to an old father in the Thiruvallur gathering recounting all the times his daughter was sent back in an autorickshaw by her in-laws, to get a sense of how things pan out.
LiveLoveLaugh Foundation conceptualised its rural programme in 2016 to support this vulnerable section of the population. Mental illness, like any other form of illness, can affect anyone irrespective of age, gender or socioeconomic categories, and it is important to enable access to mental healthcare among deprived communities.
Under the programme, the Foundation provides free psychiatric treatment and group care for people with mental illness (PWMIs) as well as their families. In addition to facilitating vocational training for caregivers, the programme ensures that rural communities know about and make use of applicable government schemes. All these aspects are being addressed through local and relevant partnerships including with the community, each bringing their core competency to make a cohesive whole.
All programme components are focused at strengthening the mental health ecosystem. The idea is to gradually get mental health embedded into the primary healthcare system – which really is the only way to make sure that diagnosis, treatment and care does not remain out of reach for the vast majority. The systematic decentralisation of mental healthcare to community settings has long been recommended by World Health Organization (WHO) as well.
A community coming together
For projects to be sustainable, there must be community participation. Such participation can help develop skills and build
competencies and capacities within the community.
In Thiruvallur, LLL Foundation’s programme is an attempt to create an integrated model of mental healthcare delivery, keeping both the cared-for and the caregiver at the front and centre, with the community as a whole rooting for them. Thus, we have here Vasantham Federation of Differently Abled, a grassroots organisation; Carers Worldwide, for support to caregivers; and ASHAs and Integrated Child Development Services (ICDS) workers, all integral to meeting the goals of the programme.
A. Livingston, president of Vasantham Federation, informs: ‘We have identified around 500 persons with mental illnesses as well as 480 caregivers across 6 blocks in the district. After identifying persons with mental illnesses, our role is to ensure that they get access to psychiatric treatment at hospitals in their district, and medicines at PHCs, apply for their Unique Disability ID card, and create awareness about the prevention and treatment of mental illnesses.’
To be sure, there are bottlenecks that need to be overcome – for example, supply and availability of medicines are not adequate. Also, before becoming eligible for the disability card, which entitles the cardholder to a monthly allowance (Rs 500 or Rs 1,200, depending on degree of disability), one needs to be undergoing treatment for at least six months, which can be an uphill task without access to a doctor. (Is this amount sufficient, one may ask and rightly so, especially considering that a mentally ill person may not even be working at all – the stigma and the discrimination are factors here. Attitudes towards mental disorders are often predicated on harmful stereotypes and dangerous misconceptions, and can add up to denial of basic human rights to the afflicted person. Hence, the focus on awareness is key.)
Anna Chandy, trustee, LLL Foundation, says that partnering with a local, grassroots organisation and community stakeholders will help the programme make true impact, not the least because they will imbue it with a better understanding of the demographic and the micro-culture there. Involving the local community is also the only way to ensure that a community-centric programme such as this becomes self-sustaining/sustainable. ‘We are looking at supporting the community for about five to seven years, and empowering them to take it forward,’ Anisha informs.
Until now, 12 caregiver support groups have been set up and this may go up to 50. It must be mentioned here that the programme also has a vocational training component to assist caregivers with finding suitable work.
Emphasising that it’s the ‘quality of impact’ that they are pursuing, Deepika says that instead of reinventing the wheel, they are seeking to leverage the strengths of local organisations and empower them. For scaling up the Foundation’s rural programme overall, they are looking to collaborate with governments.
Tamil Nadu is the third state where the Foundation’s rural programme has been rolled out, the other two being Karnataka (Davangere and Gulbarga districts ) and Odisha (Lakshmipur and Koraput districts).
The WHO’s Mental Health Atlas in its latest edition has underlined a worldwide failure to provide people with the mental health services they need, at a time when the Covid-19 pandemic has put the spotlight on a growing need for mental health support. The Atlas, which includes data from 171 countries, provides a clear indication that the increased attention given to mental health in recent years has yet to result in a scale-up of quality mental services that is aligned with needs.
It is clear that organisations such as LiveLoveLaugh are closing a critical gap in the overall healthcare system and their work needs not just the occasional acknowledgement or appreciation, but also honest participation from all stakeholders. In particular, the community-centric model that the Foundation has curated should be understood and replicated by other entities working in this space, if they are not doing that already. It is equally important to remember that stigma and discrimination continue to be a barrier to social inclusion and access to the right care; we can all play our part in increasing awareness and understanding among people.
In the course of the many interactions with the Thiruvallur community on that eventful day, what came out most emphatically was the human spirit – raw, indefatigable, stoic, dignified, with an abundance of kindness. And a lot of calm talking. It was not the calm from before the storm – it was the calm and dignity that one can lay claim to only after the storm. It was the calm of resilience.
Much of the talks at the village in Thiruvallur kept going back to partnerships, whether with communities, organisations or governments—or even with the media, to help spread awareness and information. Should be that way too, because partnerships can make change happen faster, by building on experiences and resources, and eventually building consensus.
There is a reason why Goal 17 of the UN Sustainable Development Goals (SDGs) is all about partnerships across the spectrum, mobilising all available resources, sharing knowledge, building capacity, and improving implementation.
With regard to mental health, a partnership that is yet to be explored optimally is with companies. Consider something as basic as the awareness aspect of it – corporates can easily step in and make mental-health awareness a part of their CSR, not just in terms of funding but also implementation. After all, there are plenty of causes, including healthcare, for which they routinely run awareness programmes. Starting with their own employees and the communities around their operational areas, they can go on to partner with organisations working in this domain to educate people on this critical health issue. Their reach, human resources and deep CSR pockets can bridge the gap between intention and implementation for many NGOs.
Capacity building of existing resources is another area that can benefit from strategic partnerships. For example, several companies operate mobile medical vans in the rural and they can help build skills and core competencies of the doctors in the team, in identification and treatment of common mental disorders.
Complementing existing programmes is another way to make a larger, holistic impact. For example, a CSR programme with a skills-training component can look at supporting LLL’s (or any other entity doing similar work) vocational training for caregivers, and ultimately also help them with getting gainful employment, whether in their own organisation or other organisations with whom they may have tie-ups. Considering that a majority of caregivers are women, they can be also made beneficiaries of a company’s women-empowerment programme.
Basically there are lots of ways collaborations and partnerships can be done, and this will go a long way in not just supporting those afflicted with mental illnesses, but also rehabilitating their families who may be struggling to cope.
Last but not the least, the sector needs committed awareness efforts from the government, aided by a well-informed mental-health policy, and higher budget allocation (currently mental health gets 0.8 per cent of the total health budget).
In its latest report launched on this World Mental Health Day, the Lancet Commission on Ending Stigma and Discrimination in Mental Health calls for immediate action from governments, international organisations, employers, healthcare providers and media organisations, along with active contributions from people with lived experience, to work together to eliminate mental health stigma and discrimination. Commission Co-Chair Professor Sir Graham Thornicroft from King’s College London says that ‘many people with lived experience of mental health conditions describe stigma as “worse than the condition itself”.’
Despite the high incidence of mental health conditions around the world, mental health-related stigma and discrimination is also widespread, leading to exclusion of individuals from society and the denial of basic human rights, such as job and education opportunities and access to healthcare, including mental healthcare. The Commission makes eight radical, practical and evidence-based recommendations for action to liberate millions of people around the world from the social isolation, discrimination and violations of human rights caused by stigma.