Wikimedia Commons Representative image

In India, where even basic healthcare is out of reach for many, caring for or understanding mental illnesses is a secondary concern. Even in urban areas and metro cities, seeking help for mental illnesses is accompanied by a lot of social stigma. Dr Nirmala Srinivasan, Ashoka fellow and founder of the Families Alliance on Mental Illness, a crowdfunded advocacy and support group, says that there are huge gaps in India’s mental health care despite the milestone Mental Healthcare Act 2017. For the latest news and more, follow HuffPost India on Twitter, Facebook, and subscribe to our newsletter. While people are mostly unaware of how to help family members or even themselves, Dr Srinivasan says the government has much to do to bridge the gap created by the lack of information and publicity about government-run facilities. The government, she says, needs to think out of the box to meet the needs of those suffering and those taking care of them. To mark World Mental Health Day on October 10, Dr Srinivasan in an interview with Huffpost India spoke about what these gaps are, why the government needs to go out of its way to create awareness and why she felt that perhaps even the government feels the stigma surrounding mental illnesses. Edited excerpts: What is Families Alliance on Mental Illness (FACEMI)? What led you to set it up? SIGN UP FOR THE DAILY BRIEF FROM HUFFPOST INDIA Get our top news delivered to your inbox every morning, Monday to Friday. Newsletters may offer personalized content or advertisements. Privacy Policy Newsletter Please enter a valid email address Thank you for signing up! You should receive an email to confirm your subscription shortly. There was a problem processing your signup; please try again later Facebook

Twitter

Youtube

Snapchat

Flipboard CLOSE Families Alliance on Mental Illness started in 2013. I realised there were many gaps in the system, which does not give adequate support for families to handle the challenges of providing care. Then I thought I should have systems-level initiative set up, and that’s how I set up AFMI (Action for Mental Illness India) in 2003, when I got Ashoka fellowship. It is purely an advocacy organisation to get intervention which is more family friendly, intervention at the level of law and policy. There are four main thrust areas in the ACMI. FACEMI is the last lap of the advocacy initiative. We are a family advocacy group in addition to being a family support group. Probably, we are one of its kind in the country. Support is not just emotional support or information support, but giving them whatever other additional inputs required — in terms of reference to doctors and other things. In addition to that we make the government generate support.

What kind of support? I will give you an example — I am talking about Bangalore because I am based out of here, many families faced the problem of not getting an emergency ambulance for psychiatric patients. Families had to take trucks or tempos to take them to the hospital. A lot of families faced problems in getting the patients to the hospital. In the process, they used to give up. This also delayed treatment. This would give rise to a lot of other problems like patients running away, becoming wandering mentally ill. So I decided I should approach the government for an ambulance, I started my appeal with the Karnataka government. In 2005 I started, finally the ambulance materialised in 2008. Finally when it came through,we didn’t have the funds. So I got Hewlett-Packard to sponsor it for two years and then fund allocations started. Families were very happy. We got a Maruti van donated by the Rotary (Club) in Bangalore. The ambulance was fine till 2011-12. Then I started getting complaints that it was not available in the night and rarely available even during the day time. Finally, the whole campaign was that mental health should get integrated into general health and public health. Then I started a campaign for 108. I took it up with the state mental health authority. Why can’t 108 also handle mental illness cases? So this is what I mean by generating support. (Editor’s note: 108 is a toll free number for emergency services which is operational in 22 states in India. It was first rolled out in Karnataka and Andhra Pradesh) What are the other big gaps that you see that keep patients with mental illnesses from getting help? The entire field of psychiatric services is biased in favour of institutional and community care in India. Unfortunately, the largest section of care is provided by the family. And the family care model is least looked into. This inadequacy is characteristic of the new legislation we have — the Mental Healthcare Act 2017. You can broadly classify three types of care — institutional care, community care and family care. Institution and community are very well known because it is a legacy handed down by organisations like the WHO and other international bodies. In terms of resource allocation and policy people only talk about institutional care and community care. Family is a part of community care… If you talk about community care, it is polarised in terms of charity-based free services to wandering mentally ill or destitute and others. Community care is a western concept. On the contrary, 70% of those who need treatment are all managed in families. These are statistics from the National Sample Survey of the Ministry of Social Justice in 2002 (. So, when the family is a predominant care provider, the policies, schemes are not family centric.

Dr Nirmala Srinivasan Dr Nirmala Srinivasan

How much responsibility do you think lies with the family to make themselves aware of their rights, in terms of seeking healthcare for mental illnesses? You cannot bunch all affected families in India under one category. There are urban families, rural families. It has nothing to do with socio-economic status. Mental illness is an independent variable across families. So when you say families, it depends on which family. Let’s talk about urban families. Urban families are a typical example. This morning I got a call from the wife of a techie. She is a homemaker and he needs help, terribly. The wife is unable to move because she doesn’t know where to seek help. It has to be proved that he is mentally ill to seek help. Otherwise, there is a chance of violating his human rights even though she is the wife. This is a gap we find in the mental healthcare act — family centric interventions through legislation. The wife doesn’t know where to seek help. The first right that the act talks about (The Mental Healthcare Act 2017) is the right to access to mental health services, run or provided by the appropriate government. In Bangalore there are two types of mental health facilities — district mental health care facilities or under the municipal corporation. The wife can call them and they are likely to say bring the patient here. Such a facility is available and such a legislation is available, most people don’t know. There is a big gap — how can a person, who is in a family, exercise their right to access treatment? How much of a role does the government have to play to inform people of the rights that they have? The government is not able to appreciate this gap in service. So our latest campaign is ‘assisted home care’. Can you elaborate on ‘assisted home care’? I wanted to know how does a relapse happen. Usually a relapse or patient dropping out of treatment is blamed on families. Across the world it is very familiar for the patient to medicine after some time — either because of self-stigma or side effects. Families are not able to take them for follow up treatment. And all these things — 70% of people with mental illness not having access to treatment, drop outs and follow up care not happening, families losing interest, more than one person in the family with a mental illness — culminate into a treatment gap of 80% to 90% in India. Why is this? There is a writing on the wall. Your policy and schemes have to help families in whatever way possible. In urban, metro families ‘assisted home care’ is the best thing you can do. Urban families can afford to go to private psychiatrists and that this what is happening. Nobody wants to go to a municipal corporation or OPD psychiatric clinic. That is the place where you don’t get full comprehensive treatment, because many private clinics don’t have psychologists or social workers attached to them to work as a team. And according to WHO treatment comprises of not just hospitalisation and medication, but also therapy, counselling, treating the patient and getting the patient rehabilitated into a daily routine and later on into the community. Private psychiatrists don’t have the time, they only write the prescriptions and they monitor the patient when the patient comes back. It is only the government that can provide comprehensive care. What do you think stops people from going to psychiatrists in government facilities? There is not enough publicity. Even a person like me who is a mental health advocate, I did not know about the availability of services and DMHP (District Mental Health Programme) in urban Bangalore. One is lack of information and second is indifference and apathy — where families just give up.

There isn’t any publicity given to mental illnesses. Sometimes I wonder if the government is also feeling the stigma of mental illnesses.