Sagarika Ghose: Hi there. We are focusing in this show on a subject that concerns us all, mental illness. Currently 130 million Indians are diagnosed with some form of mental illness, including depression, bipolarity and schizophrenia, 90 per cent of these cases remain untreated. The government has come up with new Mental Health Bill 2012. But activists say that the bill doesn’t protect the rights of the mentally ill. Mental illness is growing in India, will the new mental health care bill help us deal with this challenge. Joining us Harsh Mander, social activist, someone who has written extensively on this new mental health care bill and someone who approves of this particular bill. Dr Nimesh Desai, psychiatrist and director the Department of Psychiatry and the Medical Superintendent at the Institute of Human Behaviour and Allied Sciences. Joining us Vandana Gopikumar founder of the Banyan, it is a group that extends mental healthcare to the poor. Akhileshwar Sahay founder of Whole Mind India foundation, you have been adviser to the Delhi metro rail and you are someone who has suffered from bipolar disorder. Javed Abidi convener of disabled group, someone who is a critic of the new mental health care bill. Let’s kick it off with you Dr Desai, the scale of India’s mental problem, 130 million Indians diagnosed with some mental disorder, 90 per cent of them remaining untreated. Does this new mental bill address India’s mental health problem?
Dr Nimesh Desai: I would say briefly as you quoted quite correctly the number of people requiring treatment and those who do not get treatment. The bill attempts to do that and I think we will have to wait and see how well it does that. While the concerns of the Human rights activists and our lawyer friend about protecting the rights of the people with mental illness adequately and doing whatever we want to do correctly is.. The urgency is also about getting people into treatment, necessarily not hospitalisation but getting people to treatment, and getting treatment to people who need it. Organizations like Banyan, and a number of organizations which are actively engaged with getting treatment to people. And that balance of getting treatment to people and protecting the rights while doing so is a very delicate one. And so the need is possibly for a more continuing dialogue to ensure that we get the treatment and help to those who need it, specially the homeless mentally ill, on the streets, and the homebound mentally ill. We are talking about people with illness and how have various degrees of capacity to consent for treatment. We are not talking about depression, anxiety.
Sagarika Ghose: That is a very important point, getting the healthcare even to those who necessarily give their consent. I’m sure it is a very controversial issue though, and I am sure Javed will point to that. But let me put it to Harsh Mander, you have written that the mental healthcare bill 2012 is an exceptional state led attempt to correct many of the historical wrongs with personal with mental health illness have long been subjected to. Why do you believe this bill is such a step forward?
Harsh Mander: You know the way we have treated persons with mental illness in reality and through law is really shocking, I mean, right up to 1987 it was called the lunacy act. And I have seen even up to 1990s, in mental hospitals patients were chained, you know, given electric shock treatment, without consent, with out anesthesia. People were abandoned for many years. I think what is important about this bill is that it protects, it treats with dignity people with mental illness, and I think that is very important. It tries to reverse this whole history of very savage abuse and prejudice and stigma. The most law has been against the person with mental illness; even up to the constitution it is debarring the right of the person with mental illness, so I think there is a reversal there. I will just make two quick points about my concerns…
Sagarika Ghose: Harsh just a minute, let me get Javed to respond to the point that the bill addressed the right of the mentally ill, and actually provides them a kind of dignity which hasn’t been provided before. Now, I know, you have a lot of objections about that bill, why don’t you voice them. We will put them to Harsh and then we will let him come on the reservations as well.
Javed Abidi: Well number of issues that we need to get straight. The first is that in 1995 the nation passed the disabilities act of 1995 where the nation said, for the first time said, that people with mental illness are as much as people with disabilities as anyone else. In spite of that the issue continues to remain under the Health Ministry, in spite of that the Ministry of Social Justice has not taken cognizance of the issue.
Sagarika Ghose: Let’s address the substance of the issue on the bill and the mentally ill people. Because if we get into the bureaucrats then it can be long procedure. How do you feel that this bill doesn’t protect the right of the mentally ill?
Javed Abidi: How it doesn’t protect the rights of the people with mentally illness is that it gives them rights with the left hand and takes them away with the right hand. The issue of legal capacity is still not very clear in this particular bill.
Sagarika Ghose: The involuntary admission, that someone can be admitted to a mental institute without their consent.
Javed Abidi: Without their consent and the bill supposedly talks about advanced directives, but then it also says that the advance directive can be taken away by a family member or a psychiatrist.
Sagarika Ghose: This could be misused by a family member, it could be misused by a psychiatrist.
Javed Abidi: Obviously, and then the point is that what is the point of having and advanced directive. I mean, have you ever head such a think that I will make a will and in my wisdom I don’t leave anything for my brother or sister…
Sagarika Ghose: You make a declaration tat in the event of a mental illness this is how I would like to be treated.
Javed Abidi: This is how I would like to be treated or this is how I would not like to be treated. Now that is my legal capacity. If I don’t have the right to make that decision and if in spite of my advance directive, that advance directive can be taken away by a mental health professional by making an appeal to so called mental health authority.
Sagarika Ghose: Right and just to bring you to the other point I know you have been raising is bias towards the private sector.
Javed Abidi: Absolutely, and let me very quickly concise that in less than one minute. We are talking in post CRPD era. The entire world is talking about de-institutionalisation, all the nations are struggling with that. And we are prompting institutionalisation, in last 10 years more than 500 institutions have come up.
Sagarika Ghose: So are you saying we don’t need institutions?
Javed Abidi: No, we certainly don’t need institutions.
Sagarika Ghose: But we need mental healthcare facilities.
Javed Abidi: We need mental healthcare facilities, more than that we need community based…
Sagarika Ghose: Right, all your objections in fact have been made into a kind of chart. The activist have objected to the fact that involuntary admissions are provided under this bill. It provides for a prior declaration of part of an individual on how they would like to be treated if they become mentally ill. It is bias towards the private sector. It doesn’t completely ban electric shocks. It promotes medicines and not therapy, and it is bias towards psychiatrists, and against patients. And it also maintains status quo on mental asylums. These are the king of broad problems that activist have pointed out in this bill. Now you are someone, Akhileshwar Sahay, who has suffered from the bipolar disorder, do you believe that at the end of the day it is family and it is people around a mentally ill person, who are the most important.
Akhileshwar Sahay: See, Sagarika, let me be very upfront. If I’m sitting here with you , it is because of my wife. For me doctor, family, therapist, exercise, everything is important. But two things for me as a patient are very important, if I have to be productive, ‘A’ my families support, ‘B’ my doctor. Because for bipolar, schizophrenia these are certain developing diseases where not taking medicines is an invitation to lunatism and death.
Sagarika Ghose: So you must take medicines otherwise you will become a lunatic or you will kill yourself.
Akhileshwar Sahay: I have seen my friends, particularly younger friends who say they can manage without medicines. They try it they land in trouble; they land in the same institutes that we are talking about.
Sagarika Ghose: Let me just get in Vandana, Vandana, you know, the point Akhileshwar is making is that the end of the day the mentally ill person, someone who is suffering bipolarity, someone suffering from schizophrenia the most important person is the family. Now, illustrate to us the limits of law, you can have so many enlightened legislations, at the end of the day if there is no awareness there is no family support there is very little that the law can do.
Vandana Gopikumar: Well, Sagarika, over the past 20 years, I have catered to the needs of about 6000 people with mental health issues, both homeless and people with low socio-economic groups. Now the one thing I have heard from every single family is that, you know, the reason I haven’t sought treatment earlier because there was no one that offered medicines. So in our country out of 640 districts we have only 123 covered by the district medical health programme. I think the most important thing that this legation aims to do, is to fix that. Especially in a mental health context, you know, with a single lens. Rights is a lot broader, if you look at access to care, access to healthcare. I think in our country where significant proportion of people live below poverty line this will be the single most bone that it offers Indian citizens.
Sagarika Ghose: So what you are saying is that it provides for more mental healthcare facilities across the board. And the question of rights should not come here…
Vandana Gopikumar: It should be continuing care not just medical care, it should be social care, access to employment. It mandates living in the community. And it says in the exceptional circumstances where admission into an institution is inevitable in the best interest of the person, then well let’s try and facilitate it.
Sagarika Ghose: Vandana let me just get Javed quickly to respond to this.
Javed Abidi: No first of all nobody is saying that every single word or every single paragraph in this bill is all wrong. There are certain parts which are extremely good, which are progressive. So far what ever Akhileshwar has said and what ever Vandana has said I don’t seem to have a disagreement.
Sagarika Ghose: Then what exactly is your disagreement then?
Javed Abidi: The disagreement is… my question to Akhileshwar would be that when he talks of his wife, or when he talks of his family who logically would be his nominated representative…
Sagarika Ghose: Does he want to give them that kind of power that they can commit him to a mental institution without his consent.
Javed Abidi: No, Sagarika, you see, he will have to trust someone. And logically in his case that will be his wife that is not my question or objection. My question as his well-wisher is that tomorrow god forbid you don’t want a situation where some psychiatrist or a social worker can come and take away that right from his wife. So Akhileshwar in his wisdom makes her the nominated person and then tomorrow because of a disagreement with a psychiatrist or with someone, somebody takes away that right.
Sagarika Ghose: And then the mentally ill person is at the mercy of whoever exercises that right. Dr Nimesh Desai you heard Javed Abidi saying that this bill is actually very dangerous because someone could use the rights of the primary care giver and then take away the rights of the mentally ill person and send that mentally ill person without consent to a place where he or she may not want to go.
Dr Nimesh Desai: I agree with him about the potential danger for sure, I also agree with Javed Abidi about the finer details but important ones about the advance directives, specially the right of the establishment to withdraw advance directive or to change it. So there needs to be a little more emphases, little more minute study on that. About the social justice being more relevant… what I want to say our friend Javed and to the audience is two or three positive things. One, I hope, Javed, will agree, in the last 10 or 12 years there have been a few or more than a few very good successful ethically monitored, legally approved out reach models, non-institutional, about getting access to care. That has happened and let’s build on that… the other thing I want to talk about is what Vandana said…
Javed Abidi: Again to that extent I would agree with Dr Desai, but is it not a fact that in the last one decade alone more than 400 such private establishments have come up across the urban landscape of India. And not all of them are good success stories.
Sagarika Ghose: There is a dangerous aspect of profiteering by the private sector and the in fact abusing the rights of these mentally ill patients. So you want to quickly come in.
Akhileshwar Sahay: Yes, Sagarika, in 1946 India had only 10,000 psychiatric beds, with all the government, private sector taken together. So all government, private, NGO sector taken together in last 60 years we have only doubled the beds, from 10,000 to 20,000.
Sagarika Ghose: So there is still not enough care.
Javed Abidi: So why are you talking about beds, why are you not talking about community healthcare? Now this bill says you not be chained, but in the next instant it says you will be restrained.
Sagarika Ghose: Let me get in a word from you, the fact is are we looking at mental health in a patient doctor framework. We need to look at it in family, community…
Akhileshwar Sahay: Then if we re telling that, that means we are not reading the act. This act says that institutionalisation is the last resort. And two things which are there in this act, to me it is as revolutionary as the RTI act. One the same advance directive, I can choose my nominee. Number two, if it is taken away I have mental health commission, and it is time bound. Within 21 days mental health commission has to give its verdict.
Sagarika Ghose: Let me put to Harsh Mander, is there a danger that this bill lead to profiteering. Large number of these mental health institutions coming up; the mentally ill who can be always cared by perhaps by family, perhaps by community, for them being forcibly or their right being taken away, moved to these facilities simply to makeup these bottom lines…
Harsh Mander: That is the one concern that I really share. You know this bill talks about the right of every person and mental health to affordable care from the public system. I think it has to be free care by the public system… but the whole thing about involuntary care, there are moments in mental illness when you need to be given treatment, you know this absolutist position that nobody should ever have the right to decide if you refuse treatment, in such moments when you need to be taken care of.
Sagarika Ghose: Let me bring in Vandana, Vandana respond to the broader point the fact is that the mentally ill can’t be a reason for a rise of an industry.
Vandana Gopikumar: If you read the legislation carefully, you will see very clearly what is mandated is care in the community, in fact there are regulations and bodies the ones Akhileshwar referred to, that makes sure that people have right to appeal in case there is a wrong doing.
Javed Abidi: How much the establishment of these so called mental health facilities is being promoted and how is it is being given to the private sector. It says you can apply on a piece of paper, without inspection you will be given registration, provisional registration. Within 10 days…
Sagarika Ghose: The government is promoting mental health facilities, it is promoting medicines, it is promoting an industry.
Javed Abidi: Without inspection. And if you are caught the only penalty is Rs 50,000. So, I mean, any person or nay organization can setup a so called mental institution without any inspection, without any registration.
Sagarika Ghose: I’m going to give you the last word, someone who has suffered fro mental illness, your last word on this bill.
Akhileshwar Sahay: The bigger issue for me is accessibility to medicare, rehabilitation…
Sagarika Ghose: The mental transformation that this bill makes in not stigmatizing, not discriminating against the mentally ill. The numbers of mentally ill are rising; the stress is causing mental illness to rise. This is very important that mentally we all have a transformation of how we view the mentally ill… but does this bill address their rights, some believe it is a industry and some believe they provide facility. Thank you very much indeed, Harsh Mander, Dr Nimesh Desai,