‘Stigma in seeking help remains’

Interview with Dr Nimesh Desai, Director, Institute of Human Behaviour and Allied Sciences.

Published : Aug 31, 2016 12:30 IST

Dr Nimesh Desai.

Dr Nimesh Desai.

A STRONG advocate of the public health system, Dr Nimesh Desai, a psychiatrist by training, believes poverty, homelessness and violence, and refugees and disaster-affected people must be given as much attention as the health issues of the affluent classes in order to evolve a truly public health model for the treatment of mental illness. Institute of Human Behaviour and Allied Sciences (IHBAS) is a refuge of sorts for low-income groups. Its 250-bedded facility in New Delhi is almost always full and no one is turned away.

Dr Desai spoke to Frontline on the Mental Health Care Bill. Excerpts:

The overall state of health services in the country is dismal. We do not have a right to general health, but we have a new Mental Health Care Bill.

The Bill was long overdue. Twenty years of implementation of the 1987 Mental Health Act had brought some problems out in the open. The Bill is necessary because India signed and ratified the CRPD [United Nations Convention on the Rights of Persons with Disabilities], which takes a fundamentally different approach. It is also creditable that the enactment is happening at a rapid pace, which shows decreasing stigma and increasing acceptance about mental health issues among parliamentarians and policymakers. But there are very few debates.

To our dismay, with all due respect to the Upper House, we did hear comments like “paagal” and “paagalkhana”. It is unfortunate, but it reflects a certain reality. The negative side is that old-style values and stigma still prevail and there is a tendency to brush away anything to do with mental illness. That social reality will also affect the adequacy of the level of implementation of this progressive legislation. Guaranteeing the right to mental health care is most progressive, but we will have to wait and see how it translates into action. You are right that we don’t have a right to health care but [are in the process of having] a right to mental health care. What is a little more important is the set of rules. Once the legislation is enacted, then the framing of rules will be crucial.

There are concerns about the extent to which a mentally ill person will be able to exercise autonomy when it comes to issues like advance directive.

The world is getting influenced by the idea of the individual being supreme. That being the basic premise of the CRPD and the new Bill, it may seem to contradict the collectivism that is prevalent in South Asia and East Asia. The debate of individualism and collectivism is currently settled in law in favour of the individual. But social practices and mindsets are still grounded in collectivism. How this gap will be bridged needs to be seen.

The law is appropriate in being enacted the way it is. The fact is that society, law and science believed in mental illness and the soundness of the mind in black-or-white terms. That old value system across fields of knowledge has changed. The rights-based approach questions this binary approach. It is difficult for society to understand and for all health care professionals to change their mindset. That some people may have a steadily improving capacity is something we should accept. I empathise with how many of our colleagues in medicine and psychiatry have difficulty grasping these concepts. I have myself journeyed over the last 10 years and have learnt from rights activists.

The issue that it is not dichotomous is also the way science has advanced.

Yet, we do take pride in saying that 90 per cent of mental illnesses are treatable and people can recover. The difficulty that law, society and mental health professionals have is that we are still working with the model of “present-absent”, but the incapacity may not be 100 per cent.

If we agree to the shades of grey, the principles of autonomy will require that even during the period of treatment and recovery we cannot presume incapacity of the person undergoing treatment. There is supported decision-making and assisted decision-making. I am nearly convinced that even at the peak of illness both kinds of decision-making have to be tried. In both medicine and psychiatry, the approach used to be paternalistic, not collaborative. For the last 20-30 years, both at the AIIMS and the IHBAS, I have tried the collaborative approach. Individuals and families in South Asia do not like the collaborative approach. They say and insist: “Doctor, how do we know? You are the doctor, you should know best.” Advance directive is a progressive idea. On the face of it, it may not look like a practical idea. But we need to try it out. While there should be a penalty for defaulters, good practices should not be penalised under the pretext of the law.

There is a feeling among psychiatrists that the collaborative exercise was not there in the run-up to the Bill.

The Rajya Sabha Parliamentary Committee had many sittings. While the multi-stakeholder reality of the 21st century is acceptable, one of the largest and most sensitive groups that has worked for mental illness is psychiatrists. Do we want to make the mistake of making them feel that their opinion is not important? I am no authority to decide how it happened, but as an observer involved in the process I feel saddened by it.

The Bill and its proponents advocate a collaborative approach; one wonders whether the same has been followed in the run-up to the Bill. What amuses me is that most stakeholder groups are unhappy with the current draft. How can one have a Bill with which most people are unhappy? Now that it is done, let us see what can be done in the rules. ECT [electroconvulsive therapy] is life-saving and can be retained, but direct ECT being restricted in children should not cause so much heartburning. Special permission can be sought from the court. We use ECT sparingly, never direct ECT, and it is very rarely used in children.

How do you view the state of mental health services and the overall scenario?

It is difficult to generalise as geographically we are diverse. Parts of the south are strong in mental health services and human resources and research, whereas in northern and eastern India these services are weak in the public sector, which is what the masses utilise. It is also not bad in parts of western India. But the private sector doesn’t cater to the masses. And the public health system in mental health is rather poor.

The second issue is whether mental health problems are on the rise. There is reason to believe that they are. Not so much the psychotic conditions like schizophrenia and bipolar disorders but common disorders and neuroses such as depression, emotional problems, drug abuse and alcoholism, as they are related to socio-economic factors. There seems to be increasing awareness, acceptance and help-seeking. Hospital data do not convey much. There is an important gender difference. Evidence would suggest that in men it is violence and alcoholism, while in women it is depression and hysteria; conservative estimates put 8-10 per cent of the population as having diagnosable mental health problems that require treatment. It is not only the availability of psychiatrists but other mental health personnel like clinical psychologists and counsellors… these services are concentrated in a few States.

But it is a huge myth to believe that mental health services and health in general need to be taken only to rural areas, which presupposes that urban health is being taken care of. We conducted studies between 2004 and 2009 in Delhi, Lucknow and Chennai. They showed that the treatment gap was as much as 77 per cent, which meant that only one in four people with mental illness reached any facility. Stigma in help-seeking remains. There is no reason to believe it will be drastically different elsewhere.

Why is there such a shortfall in human resources in mental health?

There is growing recognition that mental health services are required. The crucial part is the human resource. The mechanism to generate the human resource is not succeeding. The NMHP [National Mental Health Programme] focussed on generating human resource, especially in the 10th and 11th Plans, but it ran into the problem of not having enough people to train people. The regulators, the MCI [Medical Council of India] and the RCI [Rehabilitation Council of India], could not increase the number of seats in colleges. Is the American or the European system of mental health necessarily a good one? What has happened is an over-psychiatrising of society. The pharmaceutical industry is always willing to give medicines. We have a difficult situation; we want to encourage people to come forward and yet not overdo it. In urban areas, we might be having a risk of overdoing it; the public might be already accessing it. The field of medical education has been rather tardy and unwilling to take this up as a major challenge.

Do you not think the government should prioritise this?

The issue is the gap between allocation and expenditure. It may be so for many programmes. The allocations are made with principles of flexibility, but the implementing agencies, hospitals, programmes and State governments are not able to utilise the funds. This is a quixotic situation. On the one hand, the funding agencies question why they are not able to spend, on the other the flexibility to utilise doesn’t exist. In public service, one definite sin is wrongful expenditure but equally culpable is non-utilisation. If one is innovative, then the person is accused of overspending. The accounting and monitoring mechanisms have not kept pace with modern needs.

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