Cover Story

Towards a sane society

Print edition : September 16, 2016

KRISHNAGIRI, TAMILNADU, 21/01/2015: A mentally challenged destitute man saunters about with chain anklets tied to his limbs for the last six months, at Chinthgampalli near Krishnagiri. Photo: N. Bashkaran Photo: N. BASHKARAN

At the Berhampore Mental Hospital, about 200 km north of Kolkata. An undated photograph received from Anjali Mental Health Rights Organisation on August 18. Photographs taken by activists of patients kept naked at the hospital produced an outcry around the middle of August. Photo: AFP/ANJALI MENTAL HEALTH RIGHTS

After the fire that killed 26 mentally ill persons at Erwadi in Tamil Nadu in 2001. Photo: AFP

A poor family has been chaining mentally chalneged Lingaraju (13) in a cattle shed for the past six years at Makali village in Channapatna taluk in Ramanagaram district - Mandya Ramanagaram Karnataka 06_March_2016. Photo: THE HINDU archives

Will the Mental Health Care Bill passed by the Rajya Sabha, which brings to centre stage the rights of patients diagnosed with mental disorders, serve the purpose of making positive changes to the mental health care infrastructure?

THE following is the testimony of a 54-year-old mother diagnosed with anxiety. The verbatim testimony was taken with her consent. The identities of the places and people she refers to, and those of her doctor and counsellor, have been kept confidential. She was divorced within one year of her marriage. Her family supported her treatment, initially in the public health system, and then by private health care providers. The family brought up her daughter, who is a bright, intelligent 26-year-old woman.

In X my mental health you know was, like, serious. I used to burst out tempers and was often living, like, secluded. I found people in the house very busy, like, and was shy in conversing with them. I did not feel like telling my problems as I did not know how to start and what, where to start. I felt life quite depressing and had no interest in anything. When Papa used to admonish me, I used to feel very down. I took also less interest in eating. I used to like to talk to my neighbour downstairs. Besides I liked to do house chores little bit. I did not also like to confide in my neighbour too. On the whole it was little okay not as serious as of now. I used to like going out to temples and fairs. I also liked doing embroidery, which I learnt, but I never liked to converse with people. Though I liked the company of friends and people. Now I feel I am better, if not fully okay. I was not taking medicines when I was at X, only tranquilisers. I used to get some sleep and at times no sleep. At X that is what I said. I used to lose tempers and some of the family, like Y, used to abuse me and with all these I felt very insulted and low in my moods. Papa also was not that agreeable to me and he was that dominating kind of person whom I could not easily cope with. Even he used to lose his tempers.

I started taking medicines after I came to this house under Dr Z. I then began to feel some change. Before that I was taking medicines in a public mental health facility and was a little okay. After I started taking these medicines prescribed by Dr Z, I began to sense a little change. But brother’s aloof behaviour and Papa’s rude behaviour affected me very much. Still I was in the depressed state, and to overcome this I used to sing songs loudly. I was again feeling some complex in me. Papa’s remarks and comments used to always depress me a lot. I looked to my daughter for comfort, but she too was a little wild. All these made me so down. Even the servant I could not cope with much. Papa’s comments and taunts at the servant made me feel so depressed.

I went to work and felt little better. After some time I felt again down and felt like leaving the work. I used to feel better and happy when friends used to visit. But I could not stand eldest brother’s tempers and his fussing over things. Daughter would also show her tempers and I used to react on that. In fact I beat her so badly that I regret over it till now. Then I decided not to go near her as I felt very insecure. The counsellor came as a godsend. When I used to tell her my troubles, I used to get relieved a lot. Every time, I used to feel that it was my mistake. I should have adjusted to all their tempers. I used to feel that the counsellor only would be able to solve my problems regarding daughter and Papa. But now I feel that I am better off with daughter and not that ok with Papa. But with Papa I am not still comfortable as he continues to taunt the new servant who is clever and skips work.

Now presently I am doing the tasks of the counsellor which she has told me to do daily. Like breathing exercises and cognitive work. I am not much comfortable in doing the house chores too. I often feel exhausted. Altogether the medicines of mine cost 1,200. The counsellor’s fee is 1,500 and doctor’s, is 600. Now when I go for walks and do my exercises I feel a little changed and when I do some shopping too. I feel the counsellor has had some effect on me, the change of my behaviour to daughter and Papa. With ex-husband I am just okay and not that comfortable. I am okay in his coming here but often I feel tired at the time of his arrival.

But now I do not fight with daughter so much and with Papa too. With papa it is not ruled out, but I am better than before. Sometimes I have second thoughts about going back to ex-husband.

Postscript: Her ex-husband, who left her within a year of their marriage, wants now to remarry her. Her counsellor is against it and so is a section of the family. She herself is in two minds.

The testimony of an upper middle class, educated woman supported by her family is perhaps not the ideal case study to understand the dimension of the state of mental health care in India. But it is symptomatic of the largely understated problem of mental health and mental health care. It reflects the confusion in the minds of patients and their struggle to cope with a world that has problems in understanding them. In fact, there are huge numbers of people crying out for help, a help that never comes or comes very late. These are the people who never even reach a decent mental health facility for a range of reasons, socio-economic ones being foremost among them. The problem gets compounded in an unequal society where access to decent health care is a privilege and not a right.

Mental illness is a hugely stigmatised area, not only for the direct sufferers but also for caregivers and medical professionals. Mental disorders are on the rise globally. And other than the standard classificatory systems that are used for the diagnosis of mental disorders like anxiety, depression and schizophrenia, there is evidence that poverty, insecurity, social change and changing lifestyles are all contributing factors. The prevalence of suicides, estimated at the rate of 11.4 in a population of one lakh, is a cause of concern. In India, National Crime Records Bureau (NCRB) statistics (Suicides in India 2014) report an increase of 22.7 per cent in reported suicides compared with the previous decade. Family problems and ill health are the commonly assumed reasons for suicides, and family problems may well include severe economic distress. Costs incurred in health care, in the absence of affordable and accessible treatment, put a severe economic burden on families and individuals, leading people to take drastic measures. Gender inequalities also affect access to treatment.

The Mental Health Care Bill, 2013, which was passed by the Rajya Sabha, brings the rights of patients diagnosed with mental disorders centre stage, has certain progressive features and places on the state a range of responsibilities to fulfil its stated mandate to the United Nations Convention on the Rights of Persons with Disabilities (CPRD), which India signed in 2007. To harmonise the extant laws with the CPRD, the Rights to Persons with Disabilities Bill was introduced in the Rajya Sabha in 2015 and the Mental Health Care Bill in 2013. The Mental Health Care Bill’s provisions include decriminalising of suicide; the right to access good quality mental health care and services run and funded by the government; protection from inhuman and degrading treatment; free legal services; access to medical records; advance directives that confer the right to the mentally ill the kind of treatment they prefer; abolition of direct electroconvulsive therapy treatment; registration of mental health establishments, including those run by the government; setting up of oversight bodies to ensure that there is monitoring and redress of violations; and so on. The Bill has drawn a fair share of criticism from various quarters for excluding some of the crucial stakeholders such as organisations of psychiatrists and also the manner in which it was debated and rushed through the Rajya Sabha without so much as a detailed debate on the 134 amendments that were moved. This prompted some members to suggest that a new Bill be drafted in view of the large number of amendments.

The present state of mental health services is a matter for concern. There has been no dearth of policies and legislation on mental health. India was among the first among low-income countries to have a National Mental Health Programme (NMHP) in 1982 that pushed for the integration of mental health care in primary health care. It envisaged a decentralised architecture with a District Mental Health Programme (DMHP) that would ensure the provision of community-based mental health services at the primary health centre. It was a centrally funded programme. The NMHP did not take off because of reductions in Central funding, which was, curiously, an outcome of underutilisation. The DMHP was initiated only in 1996.

The 2013 legislation seeks to replace the Mental Health Act of 1987, which indicates that the intentions of the state have been noble at least on paper. A National Mental Health Policy was released in October 2014, addressing the entire gamut of mental health issues: it included provision of funds and support to families of mentally ill people. It also mentioned an action plan 365, which is not in the public domain. The government is yet to unfurl a national health policy. This piecemeal approach to health care, mental health and the rights of the disabled is problematic.

V. Muralidharan, secretary of the National Platform for the Rights of the Disabled, told Frontline that the Bill was progressive in that it laid down clear responsibilities for the state and expanded access to treatment. “Apart from providing everyone the right to access mental health care as well as treatment from mental health services run or funded by the government, the Bill also provides for the supply of all notified essential medicines free of cost to those with mental illness, through the government,” he said.

The welcome aspects of the Bill, he said, included decriminalising suicide, providing insurance coverage to mentally ill persons, and the use of electroconvulsive therapy only with the help of muscle relaxants and anaesthesia. The Bill, he said, stipulated the provision of mental health services at the district level. “As of today, even States with good district hospitals do not offer regular psychiatric outpatient services, leave alone inpatient facilities,” Muralidharan said. The clause “Advance Directive” allows a person to decide the manner in which he/she should be treated. He said that the right to appoint a person as the nominated representative was progressive but in a country like India its implementation would pose problems. More importantly, adequate budgetary support was needed. “This has been one of the major reasons for our failure in the first place. The total expenditure on health as a percentage of gross domestic product is a mere 4.16 per cent. From this, just over 1 per cent is kept for mental health. The situation in the States is no better,” added Muralidharan.

The subject of mental health has been under judicial scrutiny for at least three decades. There was a public interest petition in 1979, the earliest of its kind, highlighting the plight of undertrial prisoners in Bihar ( Hussainara Khatoon vs the State of Bihar) and another one on the inhuman treatment of inmates at a protection home in Agra ( Upendra Baxi vs State of UP and Ors). In 1993 ( Sheila Barse vs Union of India and Ors), the Supreme Court observed that the admission of mentally ill persons in jails was illegal and unconstitutional. More recent examples include the case of inmates being kept naked at the Berhampore Mental Hospital in West Bengal.

Glaring gaps

A June 2016 report by a Technical Committee on Mental Health, constituted by the National Human Rights Commission (NHRC), brings forth the glaring gaps in mental health care in the country. The NHRC, which has been monitoring mental hospitals in Agra, Ranchi and Gwalior since 1997 following an apex court directive, has, in collaboration with institutes for mental health, been reviewing mental hospitals and the need for enhancing, human resources used in mental health services, monitoring mentally ill persons in prisons and formulating guidelines on reporting deaths in mental hospitals. In 2001, following the accident at Erwadi in Tamil Nadu where 26 mentally ill persons who were chained at a dargah were burnt to death in a fire, the focus shifted again to the lack of mental health facilities in the public sector. The Supreme Court took suo motu notice and directed the government to identify registered and unregistered facilities and set up a mental health hospital in every State and Union Territory. The NHRC filed a petition to apprise the apex court of the lacunae in the mental health care system, seeking directions for State governments to take remedial action. In March 2015, it constituted a technical committee comprising professors of psychiatry from the National Institute of Mental Health and Neurosciences, the Institute of Mental Health and Hospital, Agra, and the Institute of Human Behaviour and Allied Sciences (IHBAS). The committee’s brief was to examine mental health infrastructure in all States and Union Territories and give specific suggestions and guide the NHRC and the apex court about the status of implementation of the NMHP and the DMHP.

The NHRC technical committee found that many States did not even have information on the parameters relating to mental health. The prevalence of mental illness was calculated at 7 per cent of the current population—8,04,86,483 people of the total population of 114,95,21,188. According to government affidavits received by the NHRC, the number of inpatient beds in India was well below the global average and far below the averages of high-income countries. The committee also found a reduction in the number of psychiatric beds, a consequence of downsizing of government psychiatric facilities, which even led to the closure of some of them. Given the increase in the population between 2002 and 2015, the increase in the number of beds was insignificant, the report stated.

“We do not seem to have learned adequately from the Erwadi incident,” said the NHRC technical committee.

Most States and Union Territories had a government psychiatric facility, barring Sikkim, Andaman and Nicobar Islands and Lakshwadweep. A relatively greater private sector presence was seen in Maharashtra, Gujarat, Tamil Nadu, Karnataka and Delhi. In Maharashtra, which has reported a high number of suicides in recent years, there were 103 private psychiatric hospitals compared with five in the government sector. Schizophrenia was the most common disorder, followed by bipolar mood disorder and alcohol and other drug abuse. The committee also found that rehabilitation facilities in the government sector were scarce. There were inadequate numbers of trained counsellors in jails and protection homes for women, children and the elderly.

There was an equally glaring lack of psychiatrists across States. At the time of Independence, there were 100 psychiatrists; in 2002, a national survey conducted by the Directorate of General Health Services showed that there were 2,219 psychiatrists across the States. At the rate of one psychiatrist for one lakh people, the deficit at that time stood at 7,477. The technical committee calculated, taking into account the increase in departments of psychiatry and annual figures of postgraduates in psychiatry, that there would be around 6,220 psychiatrists in 2015. Interestingly, the majority of them were in the private sector, out of the common man’s reach. A good number of psychiatrists were found in the government sector only in Chandigarh and Delhi.

The situation had much to do with courses offered in medical colleges. Only 165 out of 412 medical colleges in the country had a postgraduate course in psychiatry. These shortages are linked to lack of teachers and beds. The Medical Council of India mandates that every college should have a department of psychiatry.

Dr Nimesh Desai, director of the IHBAS and a member of the NHRC technical committee, told Frontline that there was a stigma attached to the profession, and fewer people opted to become psychiatrists. “It is a vicious cycle. There are no teachers, no departments, hence, no psychiatrists,” he said. For instance, in Kerala, only 14 of the 29 medical colleges had a psychiatry department; in Madhya Pradesh, seven out of 14; in Maharashtra, only 15 out of the 48. Punjab had 41 medical colleges but no training in psychiatry for undergraduates; Rajasthan had begun M.D. programmes in many private medical colleges; Tamil Nadu had no substantive courses for training psychiatric social workers. Uttar Pradesh had departments of psychiatry in 28 of the 36 medical colleges.

At the emergency ward in the IHBAS, Frontline tried to talk to a few relatives of patients. Assurances of confidentiality notwithstanding, they refused to share any details. One of them, the parent of a 30-year-old woman patient, said: “We have not even told our close relatives. How can we tell you? It is such a matter of shame for our family. I can tell you this much that we are satisfied with the treatment here.” The doctor on duty also said that he could not share any details about the treatment or the disorder without the family’s consent. “At IHBAS, we follow an open ward system. All patients can move around freely. If anyone is brought here with their hands tied, etc., the first thing we do is to remove those restraints,” he said, adding that no one was turned away from the institute at any point.

He added that even if the families of some patients sought treatment at a private facility, sustaining the treatment was a challenge because of the cost. Substance abuse was a major problem at all ages, he said. It was seen that generally people sought medical treatment after they had resorted to some form of quackery. “ Upari hawa ka chakkar hai” (some unidentifiable external force in the air) was the belief that people acted on before seeking medical treatment. There were cases where guardians pleaded with the doctor to give some medicine to enhance the “intelligence” of their mentally challenged wards.

Not enough human resources

Other mental health professionals, apart from psychiatrists, were also inadequate in number, the committee observed. There was not a single clinical psychologist in some States like Haryana and Union Territories like Andaman & Nicobar Islands, Lakshwadweep and Daman and Diu. Chhattisgarh and Madhya Pradesh had just one each. Likewise, the number of psychiatric social workers was far below the desired number. Only 14 of the 47 government psychiatric institutions had dedicated beds for children, 15 had specialised inpatient services for the elderly. While de-addiction services were available in 22 hospitals, only the IHBAS, the Institute of Psychiatry and Human Behaviour (Goa) and the Psychiatric Disease Hospital (Jammu) were able to give specifics of the number of emergencies in the last year. In 13 of the 47 hospitals, the medical superintendent was not a psychiatrist, which was in contravention of established recommendations. In Haryana, the only psychiatric hospital, at Rohtak, which was a new facility, did not have the post of medical superintendent. Even at NIMHANS, one of the oldest and most respectable institutions in the country, the medical superintendent was not a psychiatrist. The committee noted that “very few States have an idea about the number of children with intellectual disabilities, number of children, adolescents and elderly with mental disorders, number of persons in institutional settings like prisons, correctional homes, children’s homes, destitute homes with mental disorders. These groups have special needs and to plan services, it is necessary to know what the service need is.”

Yogesh Jain, from the Jan Swasthya Aayog, a collective of health professionals and workers, said that the health care problems of rural India with tribal populations were not even mapped. “The quality of health care is indicated in what the providers prescribe in the form of tests, drugs, interventions and in the quality of documentation. Access to health care has improved under the National Health Mission [NHM], but the quality has not. Fifty per cent of the districts in Chhattisgarh do not have a blood bank. Our own data show that mental health problems are on the rise. Chhattisgarh is among the States with a high rate of suicide; alcoholism is on the rise, too. In a State with a population of 32 million, there are only two mental hospitals. Care for major psychiatric illnesses is poor and non-existent for anxiety and depression,” he told Frontline.

The votaries of public health often quote Rudolph Virchow, a 19th century pioneer in medicine and pathology who was also a public health activist, as having said that “medicine is a social science and politics is nothing but medicine on a large scale”. A piece of legislation alone will not bring about the changes required in the infrastructure of mental health care. A strong understanding of why more and more people are suffering from mental distress is required.

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