International Review of Psychiatry, October 2014; 26(5): 544–550
‘Nothing about us, without us’ – A user/survivor perspective of global mental health
PREMILA TRIVEDI Mental health service user/survivor
Abstract Surprisingly little has been published directly from user/survivors in the burgeoning (and sometimes contentious) field of global mental health (GMH). This is important both ethically and practically if GMH is to benefit from the experiential expertise that user/survivors can bring, especially when they come from those lower or middle income countries (LMICs) where GMH programmes are targeted. Whether user/survivors from higher income countries (HICs) (whose experiential expertise has usually been developed in cultural/social/health/ economic/political contexts which are very different to those in LMICs) could also provide useful input to GMH is less clear. In this article I consider this directly from my perspective as a user/survivor in a HIC. I discuss how, in spite of contextual differences, there appear to be striking resonances between GMH in LMICs and mental health in HICs, particularly areas of concerns, e.g. diagnosis, treatment and cultural difference. I illustrate this using aspects of my own personal experience in a reflexive narrative way, and suggest that such narrative-illustrations could provide useful input in GMH. I also touch on other ways in which HIC user/survivors might become involved in GMH. I conclude by stressing that, however HIC user/survivors become involved in GMH, they must do so ethically, ensuring that those in LMICs always remain at the forefront.
Introduction ‘There can be no mental health without embracing our expertise. We have always remained the untapped resource in mental health care. We must be involved and consulted in raising awareness, service delivery, monitoring and finding solutions to the barriers faced by users and survivors of psychiatry and people with psychosocial disabilities … We know where we want to go’. (Keynote speech delivered by Robinah Nakanwagi Alambuya, Chairperson of the Pan African Network of People with Psychosocial Disabilities (PANUSP) at the launch of the World Health Organization’s QualityRights Toolkit, New York, 28 June (WHO, 2012). Interest in global mental health (GMH) has increased very rapidly over the last decade, with a growing literature from both proponents and critics of GMH and its agenda. Remarkably though, there appears to be very little explicitly from those who should surely be at the very centre of the debate (United Nations Convention on the Rights of Persons with Disabilities, 2006), i.e. those with lived experience of mental health problems (or user/survivors as many of us choose to call ourselves) (McLaughlin,
2009). With one in four of the human population recognized as having mental disorders (WHO, 2001), it is quite likely that some of those in the field of GMH will have or have had personal experience of this. However, explicitly owning and using this is likely to produce a very different kind of output in GMH, one which prioritizes the individual user/survivor and their needs, presents their experiences and reflections as valid, demonstrates and values their experiential expertise, and positions them as part of the solution rather than simply the problem/burden (Kessler et al., 2009), aspects which can very easily get overlooked when considering mental health in a global context. The dearth of user/survivor input in GMH may be due to many factors, not least unequal power relations at both local and global levels. Certainly there is no shortage of people whose voices could be heard, with over 450 million people reported to have mental disorders globally (WHO, 2001), the vast majority living in LMICs where the unmet need is said to be at crisis point and GMH is targeting its interventions. In many of these countries user/survivors are coming together to raise awareness and address
Correspondence: c/o Rachel Tribe, School of Psychology, University of East London, Water Lane, London E15 4LZ, UK. E-mail: [email protected] (Received 12 August 2014 ; accepted 12 August 2014 ) ISSN 0954–0261 print/ISSN 1369–1627 online © 2014 Institute of Psychiatry DOI: 10.3109/09540261.2014.955087
‘Nothing about us, without us’ – A user/survivor perspective of global mental health issues re mental health (Kleintjes et al., 2013; PANUSP, 2013; Sunkel, 2012; Szymczynska & Pinfold, 2013; Wallcraft et al., 2011). But their voices and actions are too often marginalized due to systems of oppression that intersect and position them low down in hierarchies of power and privilege, both at local and global levels (Tew, 2005). User/survivors in HICs may be in a relatively more privileged position, but the relevance of their experiential expertise in GMH is questionable. In this article I have considered this explicitly from my perspective as a user/survivor, born and living in a HIC (the UK), but with my cultural roots firmly in a LMIC (India). I have particularly focused on those issues in GMH that are relevant to me and have attempted to illustrate each by presenting aspects of my personal experience in a reflexive narrative way (Hamkins, 2013; Lewis, 2014). Such narrative approaches can provide ‘individuality, distinctiveness and context’, ‘cognitive and emotional meaning’ and ‘moral weight and existential significance’ to mental health research, complementing more scientific evidence with each having the potential to ‘leaven, challenge, sharpen and enrich the other and highlight the other’s blind spots’ (Roberts, 2000, p434, p433). In something like GMH, this may prove to be particularly important.
Initial thoughts on GMH and its agenda Perhaps I should reveal right from the start that I am very new to GMH. While this may seem an obvious drawback in terms of writing an article on GMH, I firmly believe coming to a topic with fresh eyes can often provide insights in new and/or different ways, as well as reminding people within the field how their work may be being perceived at a grass-roots level. My initial exploration into GMH shocked me by revealing stark facts about the enormous burden of mental disorder on a global level and the huge unmet need, massive treatment gap and abuse of human rights in LMICs (Becker & Kleinman, 2013; Bhugra & Mastrogianni, 2004; Collins et al., 2011; Okpaku, 2014; Patel & Prince, 2010; WHO, 2010), The GMH agenda (WHO, 2008, 2010) with its focus on addressing these crucial issues, seemed to me to be brilliant. It was all very worthy, with HICs committing themselves to providing expertise, funds and resources to address the global crisis in mental health, notably by scaling up both the identification of those with mental disorders and the provision of evidencebased treatments, specifically in LMICs where unmet needs are reported to be at crisis point. My interest in GMH was immediately aroused, partly because of my Indian roots and family history of mental health problems, and partly because I had formerly been a
545
bio-medical researcher into children’s liver disease and understood about the importance of scientific, evidence-based medicine. From this latter perspective I particularly liked the predominantly biomedical approach in GMH, especially the idea of a clear, universal understanding of mental health and its disorders, with specific diagnoses and successful evidence-based treatments that were applicable all over the world. For someone like me (who has received at least six psychiatric diagnoses and been subjected to a myriad of treatments while moving around mental health services in a very small geographical area of the UK) this idea of a universal approach to mental health was beguilingly attractive. A very clear approach to mental distress, all the chaos, confusion and complexity neatly packaged up into aetiology, diagnosis and treatment, just like liver disease, diabetes, heart disease or any other medical condition that affects people worldwide. But was mental health really the same, and could it all really be so simple? If mental health services in a tiny part of the UK could not agree on my diagnosis and treatment, then how on earth could the world, with its vast diversity in terms of cultural beliefs and values, social, political and economic environments? In exploring further, I came across similar and other concerns re GMH, with critics specifically questioning the evidence base of GMH (Summerfield, 2008), its focus on a largely bio-medical model of mental health (Fernando, 2014), the validity of psychiatric diagnosis and its applicability across cultures, (Fernando, 2014; Thomas et al., 2007), the risks of medicalizing natural human responses to life events, (Clark, 2014; Watters, 2012), the predominance of medication as first-line treatment for mental distress and the influence of economically powerful pharmaceutical companies (Bemme & D’souza, 2012; Fernando, 2011; Summerfield; 2012). All seemed frighteningly familiar; not in terms of GMH but rather in terms of the UK, where user/survivors have for decades been raising these as concerns that seriously need to be addressed on their own doorstep. So why would the proponents of GMH want to export to LMICs concepts and systems of mental healthcare which they know user/survivors (and many others) in their own country had serious concerns about? What are the ethics of GMH and the motives behind the whole GMH agenda? Whose interests is it really meant to serve? Most alarming of all, is there any truth in the assertion that GMH is neo-colonialist and imperialistic (Horton, 2013; Mills, 2014)? I could feel myself getting caught up in a confusing world of conspiracy theories, but then as a user/survivor living in a country that has built its power through colonization but with my roots firmly in a former colony, was this not something I needed to think about carefully? Had I been wrong
546
P. Trivedi
to assume that GMH was simply a worthy, well-intentioned, humanitarian response to a global crisis on a grand scale? By this time my head was spinning and I felt I needed to ground myself back in a more manageable place. So I shifted my focus from the global to the individual (since this is what so often is left out when discussing GMH), in particular in terms of culture and cultural differences.
Different cultural understandings of mental health (narrative part 1) As someone born into a very traditional Indian family and brought up in the heart of London, I know a fair bit about cultures coming together and trying to negotiate life within two very different cultures. And I guess that was what I had to do on my very first contact with mental health services, although at the time I was totally unaware that this was what I was doing. I was in a high state of mental disturbance and staff in mental health services responded to me (although on reflection it was more to my mental distress than me as a whole person) by hospitalizing me, diagnosing me, giving biomedical explanations for my mental state and prescribing treatments that I am sure they believed were ‘in my best interests’. At the same time, my Hindu family (shocked at this very different me but solid in their Hindu beliefs) offered me karmic explanations for my mental distress and the weird things I was experiencing, fed me special foods and potions, performed pujas and other holy rituals for me and made personal sacrificial commitments, all in an attempt to aid my redemption and release me from my suffering. It is odd now looking back, because I do not recall there being any overt conflict between these two approaches and I do not think I preferred one to the other (or maybe I was so out of it I was incapable of caring)? So the two very different approaches jogged along side by side unproblematically for a while, maybe because my care team knew nothing about my family’s beliefs, understandings and actions, while my family knew very little about those of my care team, but (inculcated with the idea that ‘West is best’, especially in terms of doctors and medicine) had no hesitation in handing me over to them and trusting them. That was then, but now many years later, I wonder which response (if either) was more relevant/ important to me? The medicalized approach was certainly immediate and dealt with my increasingly unbearable symptoms by zonking me with high dose anti-psychotics and removing me from what I saw as a very threatening environment at the time (Anonymous, 1999). The family approach was more complex, with its particular power dynamics, its confusing networks of social and other relationships and
its focus on traditional beliefs and superstitions (Trivedi, 2007). Maybe there was even some synergy between the two approaches, which in those early days I seemed to sign up to in roughly equal measure. But then as time passed, that balance changed and I leaned more and more towards mental health services, maybe because (with the Mental Health Act and sectioning) they were harder to avoid! Relevance to GMH Many issues have been raised about the importance of culture and cultural difference in GMH (for overview see Fernando, 2014). Does my experience and narrative illustrate some of these issues? For example: • The importance of considering beliefs and understandings about mental health when assessing individuals, not only in terms of themselves but also their significant others • What can happen when two different cultures come together re mental health • How (surprisingly) they can sometimes unwittingly work together (Incayawar et al., 2009) • How, with time, one culture may supersede the other, with long-term consequences for both the individual and families
Diagnosis and treatment – medicalizing life – masking strengths and capabilities (narrative part 2) In many ways, handing myself over to services did seem to work for me at the time, maybe because it suited me to be able to give up any responsibility for myself, hear all my troubling feelings and behaviours described simply as symptoms of mental illness, get assigned a clear-cut psychiatric diagnosis and be prescribed quick-fix answers to my mental health problems (usually high dose anti-psychotic medication). Even the not insignificant side effects I experienced from medication seemed to serve a purpose, convincing me that there must definitely be something medically wrong with me because of the deadness in my head, the heaviness and stiffness in my body and the feelings of unreality and detachment that distanced me from me and the rest of the world. Having a family history of ‘mental illness’ added weight to my conviction that I was ill, although my actual diagnosis at that time was different from that of other family members. However, maybe precise diagnosis is not so important anyway, because mine changed several times, in particular when I was moved to a consultant psychiatrist who seemed to have different beliefs, values and cultural understandings of mental health from my previous one.
‘Nothing about us, without us’ – A user/survivor perspective of global mental health Often with my change in diagnosis came a change in medication and my progress (or not) was inevitably attributed to the meds I was taking. However, I think on reflection that it was much more to do with how I was being treated, the values and understandings of individuals in my new team and their ‘natural’ skill in being able to use these to reach me in times of madness. With all this, I increasingly came to accept that I had a ‘severe mental illness’, would be on medication for life, must avoid any stress and other ‘triggers for relapse’ and live without hope for any kind of fulfilling future. I do not think it ever occurred to me that that I was losing contact with any internal or external (including family) resources I may have once had for coping/dealing with life and my distress in more useful ways. Relevance to GMH The validity of psychiatric diagnosis, treatments (particularly medication) and the automatic medicalization of responses to life events have all been questioned in GMH (Clark, 2014; Fernando, 2014, Summerfield, 2008). Does my experience and narrative illustrate some of these concerns and the impact they can have on the individual and those around them? For example: • How the same individual can be assigned different diagnosis, which may be as much to do with the beliefs and understandings of the practitioner as with formal diagnostic criteria • How, for some individuals, receiving a diagnosis can lead to disempowerment and identification as a psychiatric patient, assigning every difficulty in their life to their illness, giving up responsibility and becoming a revolving door case, never recognizing the loss and disempowerment that inevitably accompanies this • How the emphasis on medication can suggest that this is a quick-fix answer that can rid individuals of difficult feelings and experiences, without realizing how much this robs them of their own capacity and capabilities • How everyday life can come to be seen through the lens of psychiatric illness, without recognizing that difficult feelings in response to the ups and downs of everyday life are human, valid and, crucially, if endured/addressed will enable them to increase their resilience for future challenges
547
community. From my new base within a western mental health system I began to feel my Indian-ness increasingly, and how it did not fit in with this new world I was now inhabiting. I began to recognize my over-dependence on my family, their dysfunctionality, the oddness of their cultural traditions and practices and the incongruity of their religious beliefs. It became easy for me to blame them for how I was, mentally, and see that the only way to save myself was to distance myself from them; which is precisely what I did, with very infrequent contact for several years. It was only when my eldest sister died that any meaningful connection was resumed. It was only then that I realized, at a very basic gut level, how important my family and its culture were to me. For example, as we came together to carry out Hindu funeral rituals for my sister I began to see the significance of many of the traditional sacraments and pujas that I had once dismissed as alien and scary. Now they seemed to resonate with something indefinable that lay deep in my soul (Trivedi, 2007), with certain rituals clearly stressing to me that I was an integral part of my family, and they of me. I knew then that I somehow had to find positive ways of being with them, to accept that being interdependent was OK and recognize the resources they provided to me – and the challenges they might sometimes pose. Relevance to GMH With the focus in GMH primarily at a global level, there seems to be little room for attention to individuals, their personal histories and their important relationships. Yet in mental health, these factors are known to be crucial in terms of understanding and responding to mental health problems (Bracken et al., 2012). Does my experience and narrative illustrate the importance of this? For example: • How taking on a new identity (e.g. that of psychiatric patient) can impact on other identities and may destabilize some which are of crucial importance to mental well-being, for some individuals • How sense of self can be disrupted and leave individuals vulnerable not only in terms of mental health but also in everyday life • How we can end up isolated and detached from our family and other roots
Finding a way forward (narrative part 4) Identity, sense of self and family relations (narrative part 3) With my move towards mental health services I found myself drifting away from my family and
Luckily, by the time I realized the importance of my Indian-ness and family, I had managed to get myself into individual psychotherapy so had opportunities to explore this huge turn-around in my thinking with
548
P. Trivedi
a very skilled, patient (but sometimes tough) therapist who really enabled me to get in touch with myself and understand why I so often felt and behaved the way I did. Also, at this time, I was with a mental health team who seemed to ‘get’ what I was trying to do, provided me (at my request) with low-level support and (on my terms) medical intervention in times of crisis. Also, I was actively involved with a vibrant black service user/survivor group (Jones, 2008) who unquestioningly accepted me in all my many moods and guises and enabled me to share and test out my thinking and feelings about my relationship to my Indian culture within the context of shared and different experiences. It was also in this group that I discovered that, unlike a lot of other user/survivors, stigma and discrimination on the grounds of my mental health status was nowhere near as important to me as that which I faced on the basis of my skin colour. It confused me at the time and I still cannot quite work out why that is – except maybe because my skin colour is something I have had from the day I was born and cannnot be taken off or hidden, while I can sometimes hide my mental health background pretty well. Or maybe it is because I believe the overt personal racism I experienced as a child in the 1950s– 1960s has, at least in part, resulted in my confused sense of self, my mental instability and the spiral of oppression I have often found myself in (Trivedi, 2002). Maybe that is why I feel the need to tackle racism rather than mental health stigma, because even if the latter were removed, the former would still exist to do its damage in terms of mental health. Relevance to GMH There are many ways to move forward and recover from mental health problems, even if these persist. Does my experience and narrative illustrate this? For example: • The importance of having opportunities to honestly acknowledge and explore our feelings and experiences, without feeling pressurized to eliminate them and quickly move on • The importance of having back-up to cope when feelings and experiences become overwhelming and need to be damped down • The importance of having spaces where we can, with others, untangle the complexities of our lives and discover who we are/want to be
Conclusion I started this article knowing little about GMH except that it was becoming an increasingly important
field in mental health, but rarely mentioned user/ survivors except in the context of ‘burden’ or ‘grand challenge’. I have ended up knowing much more about GMH but still not entirely clear why there appears to be such a dearth of input directly from user/survivors. Some in the field have explained it to me in the following way. In LMICs, where GMH programmes are targeted and local user/survivor involvement is obviously important, the infrastructure and resources to enable and support this are simply not available. In HICs, where the infrastructure and resources are more likely to exist, user/survivors experiences are often considered to be irrelevant because they have occurred in cultural, social, medical, economic and political contexts which are very different from those in GMH targeted LMICs. Exploring the latter argument in this article, I suggest that in spite of contextual differences there may well be resonances between user/survivors in LMICs and those in HICs, particularly if there are common cultural features and/or common issues of concern. From the narratives I have presented and reflected on here, I believe that they do illustrate some of these resonances (to some extent at least), although others with more experience of GMH are obviously in a better position to make a judgement on this. But in order to come up with some conclusion, I suggest that user/survivors from HIC should not be dismissed out of hand in GMH, since they may be able to usefully input in various ways, for example: • By supplying feedback on GMH, its core values, beliefs and agenda from a HIC user/survivor perspective • By bringing experiential knowledge, insights, understandings and ideas to GMH (when appropriate and relevant) • By offering lived mental health experiences which could be used both by proponents and critics of GMH to help them confirm or refute the validity of their theories • By reminding those in GMH of the crucial importance of always considering the individual in their particular local circumstances in mental health, something which can very easily get lost when studying mental health at a global level • By enabling user/survivors to be seen not simply as a problem (a ‘global burden’, or a ‘grand challenge’ in GMH) but rather as part of the solution • By showing user/survivors as people who may have mental health difficulties but who also have capabilities, roles and responsibilities that can become obscured once they are regarded as psychiatric patients
‘Nothing about us, without us’ – A user/survivor perspective of global mental health But while acknowledging what user/survivors in HICs could bring to GMH in terms of their personal experience, it is essential that they do so within ethical frameworks that prioritize at all times the self-defined needs, concerns, experiences and interests of user/survivors in LMICs. Maybe part of this is HIC user/survivors finding other ways of inputting into GMH and supporting LMIC user/survivors, including: • Building solidarity and generating mutual respect with user/survivors in LMICs • Sharing experiences and identifying similarities within diversity, and using these to support one another in their aims • Communicating up-to-date information on GMH and its programmes, and other issues in mental health, e.g. recovery, peer support • Mutually learning from one another’s understandings and experiences of mental health Finally, having recently attended an evidencegathering session of the UK All Party Parliamentary Groups on Global Mental Health (Roland, 2014), I was extremely dismayed to hear absolutely no mention of user/survivor involvement nor of user/ survivors’ experiential expertise, creativity, resilience and capability and how this could be used to address a global problem that they are seen to be an integral part of. So maybe this is one area where user/survivors in HICs could be helpful, in reminding their governments of the complex issues surrounding the globalization of something as many-faceted as mental health when they are considering their international development policy and funding. If user/ survivors in HICs can do this, then they will have made a very valuable and ethical contribution to GMH. Whether they can also contribute in other ways as suggested in this article needs further exploration. Declaration of interest: The author reports no conflicts of interest. The author alone is responsible for the content and writing of the paper.
References Anonymous. (1999). Unanswered questions – A user’s perspective. In K. Bhui & D. Olajide (Eds), Mental Health Service Provision for a Multi-Ethnic Society. London: Saunders, pp. 11–20. Becker, A.E., & Kleinman, A. (2013). Mental Health and the Global Agenda. New England Journal of Medicine, 369, 66–73. Bemme, D., & D’souza, N. (2012). Global mental health and its discontents. Retrieved from http://somatosphere.net/2012/07/ global-mental-health-and-its-discontents.html Bhugra, D., & Mastrogianni, A. (2004). Globalisation and mental disorders: Overview with relation to depression. British Journal of Psychiatry, 184, 10–20.
549
Bracken, P., Thomas, P., Timimi, S., Asen, E., Behr, G., Beuster, C., ... Yeomans, D. (2012). Psychiatry beyond the current paradigm. British Journal of Psychiatry, 201, 430–434. Clark, J. (2014). Medicalization of global health 1: Has the global health agenda become too medicalized? Global Health Action, 7, 7–23. Collins, P.Y., Patel, V., Joestl, S.S., March, D., Insel, T.R., Daar, A.S., Stein, D.J & Walport, M. (2011). Grand challenges in global mental health. Nature, 475(7354), 27–30. Fernando, S. (2011). A ‘global’ mental health program or markets for Big Pharma? Open Mind. p. 22. Fernando, S. (2014). Mental Health Worldwide: Culture, Globalization and Development. London: Palgrave Macmillan. Hamkins, S. (2013). What is narrative psychiatry? In In The Art of Narrative Psychiatry: Stories of Strength and Meaning. pp. 3–24USA: OUP. Horton, R. (2013). Is global health neocolonialist? Lancet, 382(9906), 1690. Incayawar. R, Quillian. W.F. & Luce, H.R.. (2009). Future partnerships in global mental health. In M. Incayawar, R. Wintrob, L. Bouchard & G. Barfocci (Eds), Psychiatrists and Traditional Healers: Unwitting Partners in Global Mental Health. p. 251–260. Wiley. Jones. R. (2008). A movement led by black service users in South London. In S. Fernando & F. Keating (Eds), Mental Health in a Multi-Ethnic Society. London: Routledge, pp. 226–231. Kessler, R.C., Aguilar-Gaxiola, S., Alonso, J., Chatterji, S., Lee, S., Ormel, J., Ustan, T.B. & Wang, P.S.. (2009). The global burden of mental disorders: an update from the WHO World Mental Health (WMH) surveys. Epidemiology Psichiatr Society, 18, 23–33. Kleintjes, S., Lund, C. & Swartz, L. (2013). Organising for self-advocacy in mental health: Experiences from seven African countries. African Journal Psychiatry, 16, 187–195. Lewis, B. (2014). Taking a narrative turn in psychiatry. Lancet, 383(9911), 22–23. McLaughlin, H. (2009). What’s in a name: ‘Client’, ‘patient’, ‘customer’, consumer’, ‘expert by experience’, ‘service user’ – What’s next? British Journal of Social Work, 39, 1101–1117. Mills, C. (2014). Decolonizing Global Mental Health: The Psychiatrization of the Majority World. Hove: Routledge. Okpaku, S.O. (2014). Essentials of Global Mental Health. Cambridge: Cambridge University Press. Patel, V. & Prince, M.. (2010). Global mental health: A new global health field comes of age. Journal of the American Medical Association, 303, 1976–1977. PANUSP (2013). Remarks on the WHO Mental Health Action Plan 2013–2020. Retrieved from http://www.panusp.org/wpcontent/uploads/2013/10/1-PANUSP-REMARKS-TO-WHOACTION-PLAN-1.doc Roberts, G.A. (2000). Narrative and severe mental illness: What place do stories have in an evidence-based world? Advances in Psychiatric Treatment, 6, 432–441. Roland, J., All Party Parliamentary Groups on Global Health. (2014). Patient Empowerment: For Better Quality, More Sustainable Health Services Globally. London: Kings Fund. Summerfield, D. (2008). How scientifically valid is the knowledge base of global mental health? British Medical Journal, 337, 992–994. Summerfield, D. (2012). Afterword – Against global mental health. Transcultural Psychiatry, 49, 519–530. Sunkel, C. (2012). Empowerment and partnership in mental health. Lancet, 379(9812), 201–202. Szymczynska, P., & Pinfold, V. (2013). Driving Change: Experiences of Non-Governmental Organizations in the Provision of Mental Health Services Across the World. A Report Prepared for the World
550
P. Trivedi
Innovation Summit for Health 2013. Retrieved from http://www. mind.org.uk/media/704808/6474-driving-change-report_ 190214.pdf Tew, J.. (2005). Power relations, social order and mental distress. In J. Tew (Eds). Social Perspectives in Mental Health: Developing Social Models to Understand and Work with Mental Distress. pp. 71–89. London: Jessica Kingsley. Thomas, P., Bracken, P., & Yasmeen, S. (2007). Explanatory models for mental illness: Limitations and dangers in a global context. Pakistani Journal of Neurological Science, 2(3), 176–181. Trivedi, P. (2002). Racism, social exclusion and mental health. In K. Bhui (Ed.), Racism and Mental Health. London: Jessica Kingsley, pp. 71–82. Trivedi, P. (2007). Aum Shanti Shanti. In M.E. Coyte, P.M. Gilbert & V. Nicholls. (Eds), Spirituality, Values and Mental Health. London: Jessica Kingsley, pp. 67. United Nations Convention on the Rights of Persons with Disabilities. (2006). Article 29: Participation in political and public life. Available at: http://www.un.org/disabilities/convention/ conventionfull.shtml (retrieved 10 July 2014).
Wallcraft, J., Amering, M., Friedn, J., Davar, B., Froggat, D., Jafri, H. & Javed, A. (2011). Partnerships for better mental health worldwide: WPA recommendations on best practices in working with service users and family carers. World Psychiatry, 10(3), 229–236. WHO. (2001). World Health Report 2001 – Mental Health: New Understanding, New Hope. Geneva: World Health Organization. World Health Organization. (2008). Mental Health Gap Action Programme (mhGAP): Scaling up Care for Mental, Neurological and Substance Abuse Disorders. WHO, Geneva. World Health Organization. (2010). mhGAP intervention guide for mental, neurological and substance use disorders in non-specialized health settings: mental health Gap Action Programme (mhGAP). WHO, Geneva. WHO. (2012). QualityRights Toolkit: Assessing and Improving Quality and Human Rights in Mental Health and Social Care Facilities. Geneva: World Health Organization. Watters, E. (2010). Crazy Like Us: The Globalization of the Western Mind. London: Robinson.
Copyright of International Review of Psychiatry is the property of Routledge and its content may not be copied or emailed to multiple sites or posted to a listserv without the copyright holder's express written permission. However, users may print, download, or email articles for individual use.
‘Nothing about us, without us’ – A user/survivor perspective of global mental health
PREMILA TRIVEDI Mental health service user/survivor
Abstract Surprisingly little has been published directly from user/survivors in the burgeoning (and sometimes contentious) field of global mental health (GMH). This is important both ethically and practically if GMH is to benefit from the experiential expertise that user/survivors can bring, especially when they come from those lower or middle income countries (LMICs) where GMH programmes are targeted. Whether user/survivors from higher income countries (HICs) (whose experiential expertise has usually been developed in cultural/social/health/ economic/political contexts which are very different to those in LMICs) could also provide useful input to GMH is less clear. In this article I consider this directly from my perspective as a user/survivor in a HIC. I discuss how, in spite of contextual differences, there appear to be striking resonances between GMH in LMICs and mental health in HICs, particularly areas of concerns, e.g. diagnosis, treatment and cultural difference. I illustrate this using aspects of my own personal experience in a reflexive narrative way, and suggest that such narrative-illustrations could provide useful input in GMH. I also touch on other ways in which HIC user/survivors might become involved in GMH. I conclude by stressing that, however HIC user/survivors become involved in GMH, they must do so ethically, ensuring that those in LMICs always remain at the forefront.
Introduction ‘There can be no mental health without embracing our expertise. We have always remained the untapped resource in mental health care. We must be involved and consulted in raising awareness, service delivery, monitoring and finding solutions to the barriers faced by users and survivors of psychiatry and people with psychosocial disabilities … We know where we want to go’. (Keynote speech delivered by Robinah Nakanwagi Alambuya, Chairperson of the Pan African Network of People with Psychosocial Disabilities (PANUSP) at the launch of the World Health Organization’s QualityRights Toolkit, New York, 28 June (WHO, 2012). Interest in global mental health (GMH) has increased very rapidly over the last decade, with a growing literature from both proponents and critics of GMH and its agenda. Remarkably though, there appears to be very little explicitly from those who should surely be at the very centre of the debate (United Nations Convention on the Rights of Persons with Disabilities, 2006), i.e. those with lived experience of mental health problems (or user/survivors as many of us choose to call ourselves) (McLaughlin,
2009). With one in four of the human population recognized as having mental disorders (WHO, 2001), it is quite likely that some of those in the field of GMH will have or have had personal experience of this. However, explicitly owning and using this is likely to produce a very different kind of output in GMH, one which prioritizes the individual user/survivor and their needs, presents their experiences and reflections as valid, demonstrates and values their experiential expertise, and positions them as part of the solution rather than simply the problem/burden (Kessler et al., 2009), aspects which can very easily get overlooked when considering mental health in a global context. The dearth of user/survivor input in GMH may be due to many factors, not least unequal power relations at both local and global levels. Certainly there is no shortage of people whose voices could be heard, with over 450 million people reported to have mental disorders globally (WHO, 2001), the vast majority living in LMICs where the unmet need is said to be at crisis point and GMH is targeting its interventions. In many of these countries user/survivors are coming together to raise awareness and address
Correspondence: c/o Rachel Tribe, School of Psychology, University of East London, Water Lane, London E15 4LZ, UK. E-mail: [email protected] (Received 12 August 2014 ; accepted 12 August 2014 ) ISSN 0954–0261 print/ISSN 1369–1627 online © 2014 Institute of Psychiatry DOI: 10.3109/09540261.2014.955087
‘Nothing about us, without us’ – A user/survivor perspective of global mental health issues re mental health (Kleintjes et al., 2013; PANUSP, 2013; Sunkel, 2012; Szymczynska & Pinfold, 2013; Wallcraft et al., 2011). But their voices and actions are too often marginalized due to systems of oppression that intersect and position them low down in hierarchies of power and privilege, both at local and global levels (Tew, 2005). User/survivors in HICs may be in a relatively more privileged position, but the relevance of their experiential expertise in GMH is questionable. In this article I have considered this explicitly from my perspective as a user/survivor, born and living in a HIC (the UK), but with my cultural roots firmly in a LMIC (India). I have particularly focused on those issues in GMH that are relevant to me and have attempted to illustrate each by presenting aspects of my personal experience in a reflexive narrative way (Hamkins, 2013; Lewis, 2014). Such narrative approaches can provide ‘individuality, distinctiveness and context’, ‘cognitive and emotional meaning’ and ‘moral weight and existential significance’ to mental health research, complementing more scientific evidence with each having the potential to ‘leaven, challenge, sharpen and enrich the other and highlight the other’s blind spots’ (Roberts, 2000, p434, p433). In something like GMH, this may prove to be particularly important.
Initial thoughts on GMH and its agenda Perhaps I should reveal right from the start that I am very new to GMH. While this may seem an obvious drawback in terms of writing an article on GMH, I firmly believe coming to a topic with fresh eyes can often provide insights in new and/or different ways, as well as reminding people within the field how their work may be being perceived at a grass-roots level. My initial exploration into GMH shocked me by revealing stark facts about the enormous burden of mental disorder on a global level and the huge unmet need, massive treatment gap and abuse of human rights in LMICs (Becker & Kleinman, 2013; Bhugra & Mastrogianni, 2004; Collins et al., 2011; Okpaku, 2014; Patel & Prince, 2010; WHO, 2010), The GMH agenda (WHO, 2008, 2010) with its focus on addressing these crucial issues, seemed to me to be brilliant. It was all very worthy, with HICs committing themselves to providing expertise, funds and resources to address the global crisis in mental health, notably by scaling up both the identification of those with mental disorders and the provision of evidencebased treatments, specifically in LMICs where unmet needs are reported to be at crisis point. My interest in GMH was immediately aroused, partly because of my Indian roots and family history of mental health problems, and partly because I had formerly been a
545
bio-medical researcher into children’s liver disease and understood about the importance of scientific, evidence-based medicine. From this latter perspective I particularly liked the predominantly biomedical approach in GMH, especially the idea of a clear, universal understanding of mental health and its disorders, with specific diagnoses and successful evidence-based treatments that were applicable all over the world. For someone like me (who has received at least six psychiatric diagnoses and been subjected to a myriad of treatments while moving around mental health services in a very small geographical area of the UK) this idea of a universal approach to mental health was beguilingly attractive. A very clear approach to mental distress, all the chaos, confusion and complexity neatly packaged up into aetiology, diagnosis and treatment, just like liver disease, diabetes, heart disease or any other medical condition that affects people worldwide. But was mental health really the same, and could it all really be so simple? If mental health services in a tiny part of the UK could not agree on my diagnosis and treatment, then how on earth could the world, with its vast diversity in terms of cultural beliefs and values, social, political and economic environments? In exploring further, I came across similar and other concerns re GMH, with critics specifically questioning the evidence base of GMH (Summerfield, 2008), its focus on a largely bio-medical model of mental health (Fernando, 2014), the validity of psychiatric diagnosis and its applicability across cultures, (Fernando, 2014; Thomas et al., 2007), the risks of medicalizing natural human responses to life events, (Clark, 2014; Watters, 2012), the predominance of medication as first-line treatment for mental distress and the influence of economically powerful pharmaceutical companies (Bemme & D’souza, 2012; Fernando, 2011; Summerfield; 2012). All seemed frighteningly familiar; not in terms of GMH but rather in terms of the UK, where user/survivors have for decades been raising these as concerns that seriously need to be addressed on their own doorstep. So why would the proponents of GMH want to export to LMICs concepts and systems of mental healthcare which they know user/survivors (and many others) in their own country had serious concerns about? What are the ethics of GMH and the motives behind the whole GMH agenda? Whose interests is it really meant to serve? Most alarming of all, is there any truth in the assertion that GMH is neo-colonialist and imperialistic (Horton, 2013; Mills, 2014)? I could feel myself getting caught up in a confusing world of conspiracy theories, but then as a user/survivor living in a country that has built its power through colonization but with my roots firmly in a former colony, was this not something I needed to think about carefully? Had I been wrong
546
P. Trivedi
to assume that GMH was simply a worthy, well-intentioned, humanitarian response to a global crisis on a grand scale? By this time my head was spinning and I felt I needed to ground myself back in a more manageable place. So I shifted my focus from the global to the individual (since this is what so often is left out when discussing GMH), in particular in terms of culture and cultural differences.
Different cultural understandings of mental health (narrative part 1) As someone born into a very traditional Indian family and brought up in the heart of London, I know a fair bit about cultures coming together and trying to negotiate life within two very different cultures. And I guess that was what I had to do on my very first contact with mental health services, although at the time I was totally unaware that this was what I was doing. I was in a high state of mental disturbance and staff in mental health services responded to me (although on reflection it was more to my mental distress than me as a whole person) by hospitalizing me, diagnosing me, giving biomedical explanations for my mental state and prescribing treatments that I am sure they believed were ‘in my best interests’. At the same time, my Hindu family (shocked at this very different me but solid in their Hindu beliefs) offered me karmic explanations for my mental distress and the weird things I was experiencing, fed me special foods and potions, performed pujas and other holy rituals for me and made personal sacrificial commitments, all in an attempt to aid my redemption and release me from my suffering. It is odd now looking back, because I do not recall there being any overt conflict between these two approaches and I do not think I preferred one to the other (or maybe I was so out of it I was incapable of caring)? So the two very different approaches jogged along side by side unproblematically for a while, maybe because my care team knew nothing about my family’s beliefs, understandings and actions, while my family knew very little about those of my care team, but (inculcated with the idea that ‘West is best’, especially in terms of doctors and medicine) had no hesitation in handing me over to them and trusting them. That was then, but now many years later, I wonder which response (if either) was more relevant/ important to me? The medicalized approach was certainly immediate and dealt with my increasingly unbearable symptoms by zonking me with high dose anti-psychotics and removing me from what I saw as a very threatening environment at the time (Anonymous, 1999). The family approach was more complex, with its particular power dynamics, its confusing networks of social and other relationships and
its focus on traditional beliefs and superstitions (Trivedi, 2007). Maybe there was even some synergy between the two approaches, which in those early days I seemed to sign up to in roughly equal measure. But then as time passed, that balance changed and I leaned more and more towards mental health services, maybe because (with the Mental Health Act and sectioning) they were harder to avoid! Relevance to GMH Many issues have been raised about the importance of culture and cultural difference in GMH (for overview see Fernando, 2014). Does my experience and narrative illustrate some of these issues? For example: • The importance of considering beliefs and understandings about mental health when assessing individuals, not only in terms of themselves but also their significant others • What can happen when two different cultures come together re mental health • How (surprisingly) they can sometimes unwittingly work together (Incayawar et al., 2009) • How, with time, one culture may supersede the other, with long-term consequences for both the individual and families
Diagnosis and treatment – medicalizing life – masking strengths and capabilities (narrative part 2) In many ways, handing myself over to services did seem to work for me at the time, maybe because it suited me to be able to give up any responsibility for myself, hear all my troubling feelings and behaviours described simply as symptoms of mental illness, get assigned a clear-cut psychiatric diagnosis and be prescribed quick-fix answers to my mental health problems (usually high dose anti-psychotic medication). Even the not insignificant side effects I experienced from medication seemed to serve a purpose, convincing me that there must definitely be something medically wrong with me because of the deadness in my head, the heaviness and stiffness in my body and the feelings of unreality and detachment that distanced me from me and the rest of the world. Having a family history of ‘mental illness’ added weight to my conviction that I was ill, although my actual diagnosis at that time was different from that of other family members. However, maybe precise diagnosis is not so important anyway, because mine changed several times, in particular when I was moved to a consultant psychiatrist who seemed to have different beliefs, values and cultural understandings of mental health from my previous one.
‘Nothing about us, without us’ – A user/survivor perspective of global mental health Often with my change in diagnosis came a change in medication and my progress (or not) was inevitably attributed to the meds I was taking. However, I think on reflection that it was much more to do with how I was being treated, the values and understandings of individuals in my new team and their ‘natural’ skill in being able to use these to reach me in times of madness. With all this, I increasingly came to accept that I had a ‘severe mental illness’, would be on medication for life, must avoid any stress and other ‘triggers for relapse’ and live without hope for any kind of fulfilling future. I do not think it ever occurred to me that that I was losing contact with any internal or external (including family) resources I may have once had for coping/dealing with life and my distress in more useful ways. Relevance to GMH The validity of psychiatric diagnosis, treatments (particularly medication) and the automatic medicalization of responses to life events have all been questioned in GMH (Clark, 2014; Fernando, 2014, Summerfield, 2008). Does my experience and narrative illustrate some of these concerns and the impact they can have on the individual and those around them? For example: • How the same individual can be assigned different diagnosis, which may be as much to do with the beliefs and understandings of the practitioner as with formal diagnostic criteria • How, for some individuals, receiving a diagnosis can lead to disempowerment and identification as a psychiatric patient, assigning every difficulty in their life to their illness, giving up responsibility and becoming a revolving door case, never recognizing the loss and disempowerment that inevitably accompanies this • How the emphasis on medication can suggest that this is a quick-fix answer that can rid individuals of difficult feelings and experiences, without realizing how much this robs them of their own capacity and capabilities • How everyday life can come to be seen through the lens of psychiatric illness, without recognizing that difficult feelings in response to the ups and downs of everyday life are human, valid and, crucially, if endured/addressed will enable them to increase their resilience for future challenges
547
community. From my new base within a western mental health system I began to feel my Indian-ness increasingly, and how it did not fit in with this new world I was now inhabiting. I began to recognize my over-dependence on my family, their dysfunctionality, the oddness of their cultural traditions and practices and the incongruity of their religious beliefs. It became easy for me to blame them for how I was, mentally, and see that the only way to save myself was to distance myself from them; which is precisely what I did, with very infrequent contact for several years. It was only when my eldest sister died that any meaningful connection was resumed. It was only then that I realized, at a very basic gut level, how important my family and its culture were to me. For example, as we came together to carry out Hindu funeral rituals for my sister I began to see the significance of many of the traditional sacraments and pujas that I had once dismissed as alien and scary. Now they seemed to resonate with something indefinable that lay deep in my soul (Trivedi, 2007), with certain rituals clearly stressing to me that I was an integral part of my family, and they of me. I knew then that I somehow had to find positive ways of being with them, to accept that being interdependent was OK and recognize the resources they provided to me – and the challenges they might sometimes pose. Relevance to GMH With the focus in GMH primarily at a global level, there seems to be little room for attention to individuals, their personal histories and their important relationships. Yet in mental health, these factors are known to be crucial in terms of understanding and responding to mental health problems (Bracken et al., 2012). Does my experience and narrative illustrate the importance of this? For example: • How taking on a new identity (e.g. that of psychiatric patient) can impact on other identities and may destabilize some which are of crucial importance to mental well-being, for some individuals • How sense of self can be disrupted and leave individuals vulnerable not only in terms of mental health but also in everyday life • How we can end up isolated and detached from our family and other roots
Finding a way forward (narrative part 4) Identity, sense of self and family relations (narrative part 3) With my move towards mental health services I found myself drifting away from my family and
Luckily, by the time I realized the importance of my Indian-ness and family, I had managed to get myself into individual psychotherapy so had opportunities to explore this huge turn-around in my thinking with
548
P. Trivedi
a very skilled, patient (but sometimes tough) therapist who really enabled me to get in touch with myself and understand why I so often felt and behaved the way I did. Also, at this time, I was with a mental health team who seemed to ‘get’ what I was trying to do, provided me (at my request) with low-level support and (on my terms) medical intervention in times of crisis. Also, I was actively involved with a vibrant black service user/survivor group (Jones, 2008) who unquestioningly accepted me in all my many moods and guises and enabled me to share and test out my thinking and feelings about my relationship to my Indian culture within the context of shared and different experiences. It was also in this group that I discovered that, unlike a lot of other user/survivors, stigma and discrimination on the grounds of my mental health status was nowhere near as important to me as that which I faced on the basis of my skin colour. It confused me at the time and I still cannot quite work out why that is – except maybe because my skin colour is something I have had from the day I was born and cannnot be taken off or hidden, while I can sometimes hide my mental health background pretty well. Or maybe it is because I believe the overt personal racism I experienced as a child in the 1950s– 1960s has, at least in part, resulted in my confused sense of self, my mental instability and the spiral of oppression I have often found myself in (Trivedi, 2002). Maybe that is why I feel the need to tackle racism rather than mental health stigma, because even if the latter were removed, the former would still exist to do its damage in terms of mental health. Relevance to GMH There are many ways to move forward and recover from mental health problems, even if these persist. Does my experience and narrative illustrate this? For example: • The importance of having opportunities to honestly acknowledge and explore our feelings and experiences, without feeling pressurized to eliminate them and quickly move on • The importance of having back-up to cope when feelings and experiences become overwhelming and need to be damped down • The importance of having spaces where we can, with others, untangle the complexities of our lives and discover who we are/want to be
Conclusion I started this article knowing little about GMH except that it was becoming an increasingly important
field in mental health, but rarely mentioned user/ survivors except in the context of ‘burden’ or ‘grand challenge’. I have ended up knowing much more about GMH but still not entirely clear why there appears to be such a dearth of input directly from user/survivors. Some in the field have explained it to me in the following way. In LMICs, where GMH programmes are targeted and local user/survivor involvement is obviously important, the infrastructure and resources to enable and support this are simply not available. In HICs, where the infrastructure and resources are more likely to exist, user/survivors experiences are often considered to be irrelevant because they have occurred in cultural, social, medical, economic and political contexts which are very different from those in GMH targeted LMICs. Exploring the latter argument in this article, I suggest that in spite of contextual differences there may well be resonances between user/survivors in LMICs and those in HICs, particularly if there are common cultural features and/or common issues of concern. From the narratives I have presented and reflected on here, I believe that they do illustrate some of these resonances (to some extent at least), although others with more experience of GMH are obviously in a better position to make a judgement on this. But in order to come up with some conclusion, I suggest that user/survivors from HIC should not be dismissed out of hand in GMH, since they may be able to usefully input in various ways, for example: • By supplying feedback on GMH, its core values, beliefs and agenda from a HIC user/survivor perspective • By bringing experiential knowledge, insights, understandings and ideas to GMH (when appropriate and relevant) • By offering lived mental health experiences which could be used both by proponents and critics of GMH to help them confirm or refute the validity of their theories • By reminding those in GMH of the crucial importance of always considering the individual in their particular local circumstances in mental health, something which can very easily get lost when studying mental health at a global level • By enabling user/survivors to be seen not simply as a problem (a ‘global burden’, or a ‘grand challenge’ in GMH) but rather as part of the solution • By showing user/survivors as people who may have mental health difficulties but who also have capabilities, roles and responsibilities that can become obscured once they are regarded as psychiatric patients
‘Nothing about us, without us’ – A user/survivor perspective of global mental health But while acknowledging what user/survivors in HICs could bring to GMH in terms of their personal experience, it is essential that they do so within ethical frameworks that prioritize at all times the self-defined needs, concerns, experiences and interests of user/survivors in LMICs. Maybe part of this is HIC user/survivors finding other ways of inputting into GMH and supporting LMIC user/survivors, including: • Building solidarity and generating mutual respect with user/survivors in LMICs • Sharing experiences and identifying similarities within diversity, and using these to support one another in their aims • Communicating up-to-date information on GMH and its programmes, and other issues in mental health, e.g. recovery, peer support • Mutually learning from one another’s understandings and experiences of mental health Finally, having recently attended an evidencegathering session of the UK All Party Parliamentary Groups on Global Mental Health (Roland, 2014), I was extremely dismayed to hear absolutely no mention of user/survivor involvement nor of user/ survivors’ experiential expertise, creativity, resilience and capability and how this could be used to address a global problem that they are seen to be an integral part of. So maybe this is one area where user/survivors in HICs could be helpful, in reminding their governments of the complex issues surrounding the globalization of something as many-faceted as mental health when they are considering their international development policy and funding. If user/ survivors in HICs can do this, then they will have made a very valuable and ethical contribution to GMH. Whether they can also contribute in other ways as suggested in this article needs further exploration. Declaration of interest: The author reports no conflicts of interest. The author alone is responsible for the content and writing of the paper.
References Anonymous. (1999). Unanswered questions – A user’s perspective. In K. Bhui & D. Olajide (Eds), Mental Health Service Provision for a Multi-Ethnic Society. London: Saunders, pp. 11–20. Becker, A.E., & Kleinman, A. (2013). Mental Health and the Global Agenda. New England Journal of Medicine, 369, 66–73. Bemme, D., & D’souza, N. (2012). Global mental health and its discontents. Retrieved from http://somatosphere.net/2012/07/ global-mental-health-and-its-discontents.html Bhugra, D., & Mastrogianni, A. (2004). Globalisation and mental disorders: Overview with relation to depression. British Journal of Psychiatry, 184, 10–20.
549
Bracken, P., Thomas, P., Timimi, S., Asen, E., Behr, G., Beuster, C., ... Yeomans, D. (2012). Psychiatry beyond the current paradigm. British Journal of Psychiatry, 201, 430–434. Clark, J. (2014). Medicalization of global health 1: Has the global health agenda become too medicalized? Global Health Action, 7, 7–23. Collins, P.Y., Patel, V., Joestl, S.S., March, D., Insel, T.R., Daar, A.S., Stein, D.J & Walport, M. (2011). Grand challenges in global mental health. Nature, 475(7354), 27–30. Fernando, S. (2011). A ‘global’ mental health program or markets for Big Pharma? Open Mind. p. 22. Fernando, S. (2014). Mental Health Worldwide: Culture, Globalization and Development. London: Palgrave Macmillan. Hamkins, S. (2013). What is narrative psychiatry? In In The Art of Narrative Psychiatry: Stories of Strength and Meaning. pp. 3–24USA: OUP. Horton, R. (2013). Is global health neocolonialist? Lancet, 382(9906), 1690. Incayawar. R, Quillian. W.F. & Luce, H.R.. (2009). Future partnerships in global mental health. In M. Incayawar, R. Wintrob, L. Bouchard & G. Barfocci (Eds), Psychiatrists and Traditional Healers: Unwitting Partners in Global Mental Health. p. 251–260. Wiley. Jones. R. (2008). A movement led by black service users in South London. In S. Fernando & F. Keating (Eds), Mental Health in a Multi-Ethnic Society. London: Routledge, pp. 226–231. Kessler, R.C., Aguilar-Gaxiola, S., Alonso, J., Chatterji, S., Lee, S., Ormel, J., Ustan, T.B. & Wang, P.S.. (2009). The global burden of mental disorders: an update from the WHO World Mental Health (WMH) surveys. Epidemiology Psichiatr Society, 18, 23–33. Kleintjes, S., Lund, C. & Swartz, L. (2013). Organising for self-advocacy in mental health: Experiences from seven African countries. African Journal Psychiatry, 16, 187–195. Lewis, B. (2014). Taking a narrative turn in psychiatry. Lancet, 383(9911), 22–23. McLaughlin, H. (2009). What’s in a name: ‘Client’, ‘patient’, ‘customer’, consumer’, ‘expert by experience’, ‘service user’ – What’s next? British Journal of Social Work, 39, 1101–1117. Mills, C. (2014). Decolonizing Global Mental Health: The Psychiatrization of the Majority World. Hove: Routledge. Okpaku, S.O. (2014). Essentials of Global Mental Health. Cambridge: Cambridge University Press. Patel, V. & Prince, M.. (2010). Global mental health: A new global health field comes of age. Journal of the American Medical Association, 303, 1976–1977. PANUSP (2013). Remarks on the WHO Mental Health Action Plan 2013–2020. Retrieved from http://www.panusp.org/wpcontent/uploads/2013/10/1-PANUSP-REMARKS-TO-WHOACTION-PLAN-1.doc Roberts, G.A. (2000). Narrative and severe mental illness: What place do stories have in an evidence-based world? Advances in Psychiatric Treatment, 6, 432–441. Roland, J., All Party Parliamentary Groups on Global Health. (2014). Patient Empowerment: For Better Quality, More Sustainable Health Services Globally. London: Kings Fund. Summerfield, D. (2008). How scientifically valid is the knowledge base of global mental health? British Medical Journal, 337, 992–994. Summerfield, D. (2012). Afterword – Against global mental health. Transcultural Psychiatry, 49, 519–530. Sunkel, C. (2012). Empowerment and partnership in mental health. Lancet, 379(9812), 201–202. Szymczynska, P., & Pinfold, V. (2013). Driving Change: Experiences of Non-Governmental Organizations in the Provision of Mental Health Services Across the World. A Report Prepared for the World
550
P. Trivedi
Innovation Summit for Health 2013. Retrieved from http://www. mind.org.uk/media/704808/6474-driving-change-report_ 190214.pdf Tew, J.. (2005). Power relations, social order and mental distress. In J. Tew (Eds). Social Perspectives in Mental Health: Developing Social Models to Understand and Work with Mental Distress. pp. 71–89. London: Jessica Kingsley. Thomas, P., Bracken, P., & Yasmeen, S. (2007). Explanatory models for mental illness: Limitations and dangers in a global context. Pakistani Journal of Neurological Science, 2(3), 176–181. Trivedi, P. (2002). Racism, social exclusion and mental health. In K. Bhui (Ed.), Racism and Mental Health. London: Jessica Kingsley, pp. 71–82. Trivedi, P. (2007). Aum Shanti Shanti. In M.E. Coyte, P.M. Gilbert & V. Nicholls. (Eds), Spirituality, Values and Mental Health. London: Jessica Kingsley, pp. 67. United Nations Convention on the Rights of Persons with Disabilities. (2006). Article 29: Participation in political and public life. Available at: http://www.un.org/disabilities/convention/ conventionfull.shtml (retrieved 10 July 2014).
Wallcraft, J., Amering, M., Friedn, J., Davar, B., Froggat, D., Jafri, H. & Javed, A. (2011). Partnerships for better mental health worldwide: WPA recommendations on best practices in working with service users and family carers. World Psychiatry, 10(3), 229–236. WHO. (2001). World Health Report 2001 – Mental Health: New Understanding, New Hope. Geneva: World Health Organization. World Health Organization. (2008). Mental Health Gap Action Programme (mhGAP): Scaling up Care for Mental, Neurological and Substance Abuse Disorders. WHO, Geneva. World Health Organization. (2010). mhGAP intervention guide for mental, neurological and substance use disorders in non-specialized health settings: mental health Gap Action Programme (mhGAP). WHO, Geneva. WHO. (2012). QualityRights Toolkit: Assessing and Improving Quality and Human Rights in Mental Health and Social Care Facilities. Geneva: World Health Organization. Watters, E. (2010). Crazy Like Us: The Globalization of the Western Mind. London: Robinson.
Copyright of International Review of Psychiatry is the property of Routledge and its content may not be copied or emailed to multiple sites or posted to a listserv without the copyright holder's express written permission. However, users may print, download, or email articles for individual use.
