DISCUSSION

Legislating the Right to Care for Mental Illness

Vikram Patel

et me begin with an overview of some headline facts about mental health conditions in India, based on a substantial body of evidence ranging from the narratives of lives affected by mental health conditions to epidemiological investigations of the burden and impact to health systems analyses of mental healthcare. Even at the most conservative estimate of the prevalence of any mental health condition, at least 50 million people living in India are
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affected (Ganguli 2000; Reddy and Chandrashekar 1998). The Need for Care Those readers who may be surprised by this gure need to consider the incredible diversity of conditions across the life course that are captured by this rubric, from autism, intellectual disability and attention-decit hyperactivity disorder in childhood, to depression, anxiety, schizophrenia, bipolar disorder and
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substance use in adulthood, through to dementia in old age. Surely, there is hardly a family in this country that is unaffected by at least one of these conditions. The impact of these conditions on the lives of people, both, those directly affected and those who live with them, is staggering. Mental health conditions often run a chronic or relapsing course and are associated with profound suffering for the affected individuals and their families. These are associated with poor physical health (for example, depression in mothers contributes to an increased risk of child stunting and undernutrition) and with mortality, most notably through suicide (Patel, DeSouza and Rodrigues 2003). Suicide is now a leading cause of death among young people in India (Patel et al
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2012). This is not surprising, given the fact that most mental health conditions strike people in their youth, precisely at the time when they need to complete their education, get a job and nd a partner to share their life with (Kessler et al 2005). A substantial proportion of children with mental health conditions simply drop out of school, permanently blighting their future opportunities (Kieling et al 2011). The toll of alcohol-related death and disability, and its social impact, for example, through domestic violence, is rising inexorably. Poverty and mental ill health are intimately related, with the circumstances associated with poverty increasing the risk of mental health conditions, and the latter fuelling the slide into poverty due to healthcare costs and lost productivity (Lund et al 2010). People affected by mental health conditions must hide their illness to avoid discrimination, which they can experience in all aspects of their lives, even in healthcare settings where they receive poorer quality care (Thornicroft et al 2009). This is one of the reasons why people with mental health conditions live shorter lives. But, most tragic of all are the frank human rights abuses, from eviction, to chaining, and to violence, endured by people in their homes, in mental hospitals and in traditional healing centres (Murthy and Sekar 2008). It is no surprise that a substantial proportion of the homeless in Indias cities are affected by a mental health condition. The Response to This Need In addition to this well-documented evidence, there is another starker fact: the vast majority of affected people and their families do not have their mental health condition recognised and do not receive evidence-based care. By evidencebased care, I mean a wide range of diagnostic, drug, psychological and social interventions, which, when combined together and tailored to the needs of individuals (packages of care) (Patel and Thornicroft 2009), can simply transform lives. There are at least two major reasons for this abysmal situation: the rst is the grave shortage of mental healthcare resources, from mental health specialists to mental health beds; and
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the second is the chronic neglect to mental health by the health sector and political leadership of the country. Consider the resource crunch. India has about 4,000 psychiatrists (and even fewer of other types of mental health professionals) for its 1.2 billion people. The number of in-patient beds is a paltry 30,000, the vast majority of which are located in colonial-era mental hospitals, where apart from the fact that they are too remote for the majority of people, they are also associated with custodial care and human rights abuses. The proportion of the national health budget allocated to mental health hovers around 1%. These gures place India at the bottom of the table on mental health resources among the league of nations (WHO 2011). Next, consider the neglect to mental healthcare by the state. Apart from the very low investment in mental healthcare, there has been the dismal performance of the agship District Mental Health Programme (DMHP), currently supposed to be implemented in 123 districts. Several evaluations of the DMHP indicate that the programme is, to a large extent, ineffective in practice (Jain and Jadhav 2008; Haq, Singh and Das 2008; Murthy 2011; Goel 2011; Murthy and Sekar 2008). Some of the reasons for this unsatisfactory state of affairs are: the top-down, one size ts all approach to ser vice

delivery that cannot accommodate diverse ground realities, poor governance and accountability, a narrow biomedical perspective, weak managerial and technical oversight, the inability to ll mental health specialist posts, lack of community and civil society engagement, and unrealistic expectations from poorly motivated and overburdened primary healthcare personnel. In a nutshell, the DMHP has totally failed in achieving its core mission to provide a communityoriented, comprehensive, mental healthcare system. All of this can, and must, change. And, there are several signs that this is happening, from the growing evidence base on how ordinary people in the community can be empowered to deliver psychosocial interventions (Dias et al 2008; Patel et al 2011; Chatterjee et al 2009), to the leadership and political will in the Ministry of Health and Family Welfare to reform all aspects of the mental health system and to back this with resources. Three new national instruments, which are aimed to be the backbone of this radical new vision for mental health in India, are in various stages of development: a draft DMHP for the Twelfth Plan;1 the rst national mental health policy; and, most pertinent to this article, a radical new legislation for mental healthcare, the draft Mental Health Care Bill or MHCB (MoHFW 2012).

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September 8, 2012

Revisiting Communalism and Fundamentalism in India

by

Surya Prakash Upadhyay, Rowena Robinson This comprehensive review of the literature on communalism and its virulent offshoot, fundamentalism in India considers the various perspectives from which the issue has sought to be understood, from precolonial and colonial times to the post-Independence period. The writings indicate that communalism is an outcome of the competitive aspirations of domination and counter-domination that began in colonial times. Cynical distortions of the democratic process and the politicisation of religion in the early decades of Independence intensified it. In recent years, economic liberalisation, the growth of opportunities and a multiplying middle class have further aggravated it. More alarmingly, since the 1980s, Hindu communalism has morphed into fundamentalism, with the Sangh parivar and its cultural politics of Hindutva playing ominous roles. For copies write to: Circulation Manager, Economic and Political Weekly, 320-321, A to Z Industrial Estate, Ganpatrao Kadam Marg, Lower Parel, Mumbai 400 013. email: circulation@epw.in
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In my view, the latter is potentially the cornerstone for the reforms, simply due to the fact that the draft MHCB enshrines access to healthcare as a right and an entitlement, and holds the government accountable for service delivery. This is in keeping with the spirit of the Indian Constitution and the Convention on the Rights of Persons with Disabilities (CRPD), which aspire to treat all persons with dignity in an environment that emphasises social justice and equity. If the draft MHCB is passed by Parliament, it will act as a legal entitlement to ensure that the vast majority of people with mental health conditions have the right to receive care close to their homes, through the established district-level healthcare system. Concerns about the Bill Davars article, Legal Frameworks for and against People with Psychosocial Disabilities (EPW, 29 December 2012), examines the legal framework for (and against) people with psychosocial disabilities, and admirably charts the history of earlier legislations up until the landmark CRPD. I am in total agreement with her observations about the punitive nature of earlier legislations and the transformative scope of the CRPD. However, I disagree with some of her core concerns and critiques related to the draft MHCB, in large part due to two fundamental differences in our interpretations. My rst disagreement is with Davars conation of disability associated with a mental health condition (psychosocial disabilities), with the condition itself. Throughout her article, these terms are used interchangeably, as if they mean the same thing. Of course, this is not at all the case; as Davar herself acknowledges, mental health conditions have disabling consequences, but they equally have consequences that are the core symptoms of the condition (which we may refer to as the illness component). Consider an analogy from the physical health domain. Diabetes is an illness whose symptoms include fatigue and excessive urination; the illness component of diabetes requires a healthcare response comprising medication and behavioural interventions. A subset of people with diabetes develop disabilities, for example,
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due to visual impairment or the loss of a limb. Yet, no one would conceivably argue that, therefore, all persons with diabetes also have a physical disability. Furthermore, disability is often directly the consequence of the illness (typically the case for depression, the most common of all mental health conditions), and healthcare interventions that promote recovery from the illness can, in turn, help reduce or even remove the disability. An equivalent example from the physical disability space would be a person with a cataract who has a disability (due to impaired vision), but this disability can be reversed by the surgical treatment of the cataract. Indeed, there is now rich evidence demonstrating that the effective treatment of mental health conditions can greatly improve social functioning and economic well-being of affected people (Lund et al 2011; De Silva et al forthcoming). While the CRPD is an outstanding and irreplaceable response to the disability associated with mental health conditions, it does not address at all the entitlement to healthcare for the illness component (indeed, it explicitly eschews a biomedical perspective, for all the right reasons). Thus, people with mental health conditions need attention, including legislation, to address both their healthcare needs as well as any disability contingent to their condition. A second difference in our perspectives relates to the issue of capacity to make a voluntary decision to receive healthcare interventions. Informed consent is a cornerstone of healthcare legislation; in short, no one can be coerced into receiving healthcare intervention against their wishes. But, there are rare, and important, exceptions to this covenant, i e, when the persons capacity to make informed decisions is impaired and the consequences of this impairment can threaten their life or well-being. In such situations, it is the duty of the state to ensure that such individuals receive the care that can preserve their well-being and sometimes save them. Let me consider two examples of situations in which such impairment may occur. First, and the most obvious, is when a person is unconscious; in such situations,
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emergency medical care, including surgical procedures, can be carried out as they are deemed life-saving. Second, when a person suffers from certain types of brain dysfunction that impair capacity, for example in dementia, the person may be prescribed medicines or admitted to a hospital for management of health conditions, despite their inability to give informed consent. Indeed, in both these examples, several other rights of the affected persons, for example, to make a will or manage a bank account, are compromised and are handed over to a legally appointed guardian. In the case of mental health conditions, there are a few, relatively uncommon circumstances that mirror the second example, notably people with severe intellectual disabilities, dementia and psychotic disorders. In addition, the very nature of the mental health condition may precipitate actions by the person that can endanger their lives and well-being, for example, through self-neglect or self-harm. To provide a perspective on the rarity of these circumstances, my rough estimate is that such individuals comprise less than 5% of the total number of people with a mental health condition in the community. What do we do then? Do we just abandon them because they are not in a position to make a choice? All of us, with or without a disability, may experience periods in our lives when we temporarily lack capacity to make decisions. Would we not depend heavily on a responsive medical system to facilitate our care? Why should those with a mental illness be denied this option? Paradoxically, if we reject the possibility of care when capacity is impaired, we will relegate the most severely ill to the fringes, reinforce their state of incapacity and disability, and potentially increase the probability of their premature death. Protecting the Rights of People with Mental Health Conditions Davars contention that the CRPDs principle on autonomy is in contradiction to the draft MHCB, conates the principle of autonomy for people with disabilities with that of right to healthcare for people with health conditions. Several countries in the world, including those that have
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been at the forefront of supported decisionmaking and protecting the legal capacity of persons with disabilities, such as Australia and Canada, have entered a reservation with respect to persons with mental health conditions. Australia, for example, declares its understanding that the CRPD allows for compulsory assistance or treatment of persons, including measures taken for the treatment of mental disability, where such treatment is necessary, as a last resort and subject to safeguards. A related landmark move that the draft MHCB proposes is to foster a climate of reforms both within mental hospitals and in the community by setting up a Mental Health Review Commission that will regulate admission and discharge, deal with violation of rights, and thus prohibit the pervasive culture of exploitation, neglect and frank abuse of human rights. If a person needs admission to a hospital, then voluntary treatment is the norm. Only in exceptional circumstances, for example, when a person with mental illness is not in a position to make a choice or is at grave danger of harming themselves, then this right to choice is temporarily exercised by another person on their behalf. As soon as the person with the mental health condition recovers the capacity to make choices, the right reverts back to them. Even in such exceptional circumstances, the person has the right to appeal to the Mental Health Review Commission. The proposed composition of this quasi-judicial review tribunal, which includes people with mental health conditions, activists, mental health specialists and a judge drawn from local communities, is a radical goal that greatly reduces the possibility of abuse of the rights of persons with a mental health condition. Yet, I totally agree with concerns about the potential for misuse of rules on involuntary treatment and the subjectivity inherent in assessment of capacity. There is a substantial literature on the circumstances in which involuntary medical treatment can be provided and how capacity should be assessed and the rights of persons safeguarded. The guidelines laid down in the draft MHCB are consistent with this literature and
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with the standards set in similar legislations in other CRPD compliant countries. Indeed, the draft MHCB seems to strike a reasonable balance between a persons right to choose and a persons right to receive care. Davars (2012: 130) assertion that the draft MHCB is a total sell-out to the burgeoning private asylum business is incorrect. Not only does the draft MHCB enshrine public provision of mental healthcare, but, in fact, puts into place stringent regulations for all mental healthcare facilities, irrespective of the sector (as outlined above). Apart from the right to access mental healthcare, the draft MHCB provides for protection of a host of other rights, for example, that persons with mental health conditions have the right to live in the community and that
[L]ong term care in a mental health establishment for treatment of mental illness shall be used only in exceptional circumstances, for as short a duration as possible, and only as a last resort when appropriate community based treatment has been tried and shown to have failed (MoHFW 2012: Chapter V, Section 18(5)(c)).

Critics of the draft MHCB contest the case that persons with mental health conditions need separate legislation for healthcare, and that this could be subsumed under existing legislations. However, the CRPD is an international convention and in all countries needs to be reected in domestic legislation. In short, the CRPD is not an alternative to domestic legislation. Indeed, nearly twothirds of countries in the world have mental health laws, including the vast majority of progressive, democratic nations that have signed the CRPD. There is, at present, no other legislation that addresses healthcare, and the Right to Health Bill has not made any progress since its initial drafting several years ago. Surely, then, the draft MHCB is a llip that we should celebrate, as it is intended to address this gap for a group of people whose healthcare needs have been historically neglected. The MHCB may even act as a facilitator to propel the Right to Health Bill! Conclusions Drafting a new legislation that involves the expression of rights of people, and in particular, people who are vulnerable or marginalised in one way or another, is a sensitive process that needs to be participatory and transparent. The process of drafting the MHCB has involved extensive consultations, over two years, with a broad range of stakeholders, including those who are usually not involved in such consultations, such as the homeless and the rural poor. The provisions on access to care for homeless persons were included based on this feedback. Based on feedback at the regional and national consultations, the draft MHCB now includes a series of progressive clauses, including a provision that persons who attempt suicide will not be liable to any police investigation or prosecution, and will have the right to condentiality of mental healthcare information. Beyond the narrow domain of treatment, the MHCB puts the onus of responsibility for the implementation of programmes for promotion of mental health and prevention of mental illness and suicide, on the state, which is also required to ensure that adequate numbers of
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The draft MHCB is pro-choice and mandates the provision of a range of facilities (including supported homes and community-based rehabilitation) and support to people in their own homes to help them achieve full and effective participation in the community. The emphasis on public provision is a key legal foundation to the massive expansion of the DMHP proposed in the Twelfth Plan. And, it must be emphasised here that what India needs is not less inpatient beds, but many more than we currently have, and that these should be located in communitybased supported homes, general hospitals or small mental health specialist centres, rather than in mental hospitals. This is especially true of the vast sections of our population, particularly in rural areas, who, as Davar correctly points out, have no access to mental healthcare at present. It is counter-intuitive that having emphasised this point, Davar (2012: 130) expresses concern that the draft MHCB is only relevant to the middle and upper classes in urban areas, especially non-resident Indians.
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mental health professionals are available, and to achieve international norms in 10 years. Persons with mental health conditions are represented in all decisionmaking authorities, including the Central and State Mental Health Authorities and the Mental Health Review Commission. Notwithstanding this history, there may be, as with any draft legislation, areas that merit further revision or review, and one would hope that the parliamentary debates, when the MHCB is nally tabled, will address some of these. Once enacted, the checks and balances in the MHCB will need periodic review to ensure they are being implemented with the highest regard to the rights to autonomy and dignity of people with mental health conditions. One particular example might be the rules governing involuntary treatment. But to reject a potentially landmark legislation, which will replace an archaic and universally disliked one, because one is unhappy with specic clauses is to throw the baby out with the bathwater and to condemn the millions of people affected by mental health conditions to the unacceptable status quo. In the end, I believe that in its spirit and content, the draft MHCB is a major advance from the current legislation and will greatly enhance the right of persons with mental health conditions in our country to access humane and evidence-based care.
Vikram Patel (vikram.patel@lshtm.ac.uk) is Professor of International Mental Health and Wellcome Trust Senior Research Fellow at the London School of Hygiene and Tropical Medicine. He is also with Sangath and the Public Health Foundation of India.

De Silva, M, S Cooper, H Li, C Lund and V Patel (forthcoming): Impact of Psychosocial Interventions on the Social Functioning of People with Depression and Schizophrenia in Low and Middle Income Countries: A Systematic Review and Meta-analysis, British Journal of Psychiatry, in press. Dias, A, M E Dewey, J DSouza, R Dhume, D D Motghare, K S Shaji et al (2008): The Effectiveness of a Home Care Program for Supporting Caregivers of Persons with Dementia in Developing Countries: A Randomised Controlled Trial from Goa, India, PLoS ONE, 3(6): e2333, doi:10.1371/journal.pone.0002333. Ganguli, H (2000): Epidemiological Findings on Prevalence of Mental Disorders in India, Indian Journal of Psychiatry, 42(1): 14-20. Goel, D S (2011): Why Mental Health Services in Low- and Middle-Income Countries Are Underresourced, Underperforming: An Indian Perspective, The National Medical Journal of India, 24(2): 94-97. Haq, M Z U, D Singh and B Das (2008): National Mental Health Programme In India: An Update, Indian Journal of Social Psychiatry, 24(1-2): 22-29. Jain, S and S Jadhav (2008): A Cultural Critique of Community Psychiatry in India, International Journal of Health Services, 38(3): 561-84. Kessler, R, P Berglund, O Demler, R Jin, K Merikangas and E E Walters (2005): Lifetime Prevalence and Age-of-Onset Distributions of DSM-IV Disorders in the National Comorbidity Survey Replication, Archives of General Psychiatry, 62(6): 593-602. Kieling, C, H Baker-Henningham, M Belfer, G Conti, I Ertem, O Omigbodun et al (2011): Child and Adolescent Mental Health Worldwide: Evidence for Action, The Lancet, 378(9801): 1515-25. Lund, C, A Breen, A J Flisher, R Kakuma, J Corrigall, J A Joska et al (2010): Poverty and Common Mental Disorders in Low and Middle Income Countries: A Systematic Review, Social Science and Medicine, 71(3): 517-28. Lund, C, M De Silva, S Plagerson, S Cooper, D Chisholm, J Das et al (2011): Poverty and Mental Disorders: Breaking the Cycle in Lowincome and Middle-income Countries, The Lancet, 378(9801): 1502-14.

MoHFW (2012): Draft Mental Health Care Bill, Ministry of Health and Family Welfare, Government of India, viewed on 8 February 2012, http://mohfw.nic.in/index1.php?lang=1&level =3&sublinkid=1384&lid=1319 Murthy, P and K Sekar (2008): A Decade After the NHRC Quality Assurance Initiative: Current Status of Government Psychiatric Hospitals in India in D Nagaraja and P Murthy (ed.), Mental Health and Human Rights (New Delhi/Bangalore: National Human Rights Commission and National Institute of Mental Health and Neuro Sciences), 101-42. Murthy, R S (2011): Mental Health Initiatives in India (1947-2010), The National Medical Journal of India, 24(2): 98-107. Patel, V and G Thornicroft (2009): Packages of Care for Mental, Neurological, and Substance Use Disorders in Low- and Middle-Income Countries: PLoS Medicine Series, PLoS Medicine, 6(10): e1000160, doi: 10.1371/journal. pmed.1000160 Patel, V, C Ramasundarahettige, L Vijayakumar, J Thakur, V Gajalakshmi, G Gururaj et al (2012): Suicide Mortality in India: A Nationally Representative Survey, The Lancet, 379(9834): 2343-51. Patel, V, H A Weiss, N Chowdhary, S Naik, S Pednekar, S Chatterjee et al (2011): Lay Health Worker Led Intervention for Depressive and Anxiety Disorders in India: Impact on Clinical and Disability Outcomes over 12 Months, The British Journal of Psychiatry, 199(6): 459-66. Patel, V, N DeSouza and M Rodrigues (2003): Postnatal Depression and Infant Growth and Development in Low Income Countries: A Cohort Study from Goa, India, Archives of Disease in Childhood, 88(1): 34-37. Reddy, V M and C R Chandrashekar (1998): Prevalence of Mental and Behavioural Disorders in India: A Meta-analysis, Indian Journal of Psychiatry, 40(2): 149-57. Thornicroft, G, E Brohan, D Rose, N Sartorius and M Leese (2009): Global Pattern of Experienced and Anticipated Discrimination Against People with Schizophrenia: A Cross-sectional Survey, The Lancet, 373(9661): 408-15. WHO (2011): Mental Health Atlas 2011 (Geneva: World Health Organisation).

STATEMENT about ownership and other particulars of newspaper ECONOMIC AND POLITICAL WEEKLY as required to be published in the rst issue of every year after the last day of February. FORM IV (See Rule 8) 1 Place of publication: 2 Periodicity of its publication: 3 Printers name: Whether citizen of India: Address: 4 Publishers name: Whether citizen of India: Address: 5 Editors name: Whether citizen of India: Address: 6 Name and address of individuals who own the newspaper and partners or shareholders holding more than one per cent of the total capital: Mumbai Weekly K Vijayakumar for Sameeksha Trust Yes 504, G-2 Sphene, Moraj Residency, Sector 16, Sanpada, Navi Mumbai - 400 705 K Vijayakumar for Sameeksha Trust Yes As above C Rammanohar Reddy Yes Flat 2001, Daffodil, Neelkanth Gardens, Bhaktakavi Shivjibhai Devshi Road, Govandi (E), Mumbai 400 088 Sameeksha Trust, 320-321, A to Z Industrial Estate Ganpatrao Kadam Marg Lower Parel, Mumbai 400 013

Note
[I am grateful to Akhileshwar Sahay and Soumitra Pathare for their contributions to and comments on an earlier draft (not published) of this article. I am supported by a Wellcome Trust Senior Research Fellowship in Clinical Science.] 1 See XIIth Plan District Mental Health Programme, http://mhpolicy.les.wordpress.com/ 2012/07/nal-dmhp-design-xii-plan2.pdf

References
Chatterjee, S, A Pillai, S Jain, A Cohen and V Patel (2009): Outcomes of People with Psychotic Disorders in a Community-based Rehabilitation Programme in Rural India, The British Journal of Psychiatry, 195(5): 433-39. Davar, B (2012): Legal Frameworks for and against People with Psychosocial Disabilities, Economic & Political Weekly, 47(52): 123-31.
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I, K Vijayakumar, hereby declare that the particulars given above are true to the best of my knowledge and belief. Mumbai March 1, 2013 (K Vijayakumar) Signature of Publisher

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