World Mental Health Day 2014 blog series: Week 1
Throughout October, we will post responses from individuals sharing a range of perspectives, experiences and insights on what the theme of 'living with schizophrenia' means to them.
Learning from innovation, wherever it happens Oct 3rd, 2014
Grace Ryan is the MHIN Knowledge Synthesis Officer, focused on collating key information and resources on innovations in global mental health
In this entry, she discusses her personal experiences of living with someone diagnosed with schizophrenia.
As a close family member of someone diagnosed with schizophrenia, I have been quite literally “Living with Schizophrenia” since the age of four. To me, living with schizophrenia means family trips to the counsellor’s office, to group homes, to the pharmacy, the laboratory, and at times the emergency psychiatric facility, the courtroom, the detention center. It means pleading and threatening and sometimes lying just to secure basic social services—health insurance, a disability stipend, safe housing.
Where I come from in the United States, living with schizophrenia means navigating countless bureaucratic institutions and procedures to meet essential human needs, and squandering your financial, social and emotional collateral in the process. I chose to work in global mental health, because I have seen firsthand how even the world’s best-resourced mental health systems fail people living with schizophrenia, and I believe in the creativity and compassion of these people to find better ways to care for themselves and their loved ones.
Recently, I’ve had the great privilege of working with the Butabika-East London Link on a proposal to support the recovery of people living with severe mental health problems like schizophrenia in Uganda. This program, which was pilot-tested in Kampala, aims to first define recovery from the perspectives of service users, and second to collaboratively develop a program of activities to help achieve recovery. Peer support work is one of the key activities, empowering service users to help each other and, in the process, help themselves.
Working on a proposal to build on early successes from the pilot, I find myself wishing this model were available in my hometown in California. Perhaps it would have changed what living with schizophrenia has meant for our family.
Addressing the challenges of living with schizophrenia does not mean exporting failed systems of care from one country to the next. It means learning together from innovation— wherever it happens— and privileging the perspectives of experts by experience to find a better way. This World Mental Health Day offers us an opportunity to reflect on progress made, share ideas and inspire each other. I look forward to hearing what our community has to say.
Prioritizing schizophrenia in Vietnam Oct 2nd, 2014
Dr Truong Le Van Ngoc, secretary, Non-Communicable Disease Programme, Department of Medical Services Administration, Ministry of Health, Vietnam.
Dr Ngoc is the Ministry of Health Officer in charge of the National Mental Health Program. Dr Ngoc manages and coordinates the development and implementation of the mental health policy, plan, and legislation as well as relevant research activities at the national level. She is also actively involved in the National Taskforce on Community Mental Health System Development in Vietnam.
1. The theme for World Mental Health Day this year is ‘Living with Schizophrenia’. Why is this theme important to you?
The population prevalence of mental disorders in Vietnam is 14.9% and of schizophrenia is 0.47%. In Vietnam, a great majority - up to 90% - of the families of people with chronic schizophrenia are poor. At this time, families rely on the ability to have their relatives admitted to the Social Protection Centres or Psychiatric Hospitals because it removes a considerable economic burden from the family. In addition, people with schizophrenia and their families experience widespread stigma. For example, there remains a prevailing general belief, even among health professionals and policy makers, that people with chronic schizophrenia are dangerous, to themselves, their families and society in general. It is common to hear mention of their propensity for property destruction, violence and even murder, and the high rate of suicide among people with chronic schizophrenia. Statements like “The number of patients who have mental disorders with dangerous behaviours is quite high” and “Many of them injure others, even kill others” are typical at all levels. This stigma and discrimination increases the burden of mental disorders and make it hard to access mental health services.
In Psychiatric Hospitals, almost all services provided for people with schizophrenia are drug therapy. The provision of social support and rehabilitation services for patients are very limited. In the Social Protection Centres, almost all services provided for them are “feeding by food” and “locking”. There is little concern from patients families. Many patients have lived in the centres or hospital for over 15 years, some even die in there. It is acknowledged that there is inadequate community-based treatment available for people with schizophrenia, as the physician staff at the local level are limited in quantity and don’t necessarily have the skills to provide treatment for mental illness.
The theme for World Mental Health Day this year of ‘Living with Schizophrenia’ is very important. It can improve awareness and real action of families, the community, professionals and management and policy makers for schizophrenia, especially in the area of developing social support and rehabilitation services for patients. Determining how to improve services and support to people living with schizophrenia will be a priority when we develop Vietnam’s national mental health strategy for 2015 to 2025, ‘Vision 2030’.
2. What are you doing, and what should others do to address the challenges of living with schizophrenia?
As a policy maker, I am participating in developing a national mental health strategy for Vietnam 2015 to 2025, ‘Vision 2030’, and schizophrenia is one priority in our strategy. Actions in this strategy aim to improve, in the long term, comprehensive mental health and social care services for people with schizophrenia. The strategy focuses on two goals: first, the health education communication activities implemented as part of this strategy will concentrate on improving knowledge at the population and policy level. We aim to involve people at all levels - from the community to policy makers - in participating in support for schizophrenia patients. Secondly, building capacity for health workers and social care staff needs to be implemented so they can provide quality health and social care services for patients.
The need for evidence based treatment Oct 1st, 2014
Alex Cohen, Senior Lecturer at the London School of Hygiene & Tropical Medicine, and Craig Morgan, Professor at the Institute of Psychiatry, share their thoughts on the need for evidence-based treatment for persons with schizophrenia in LMIC. Both are researchers on the INTREPID study, which seeks to understand the determinants of cross-cultural variations in the incidence and outcome of schizophrenia, that have not been pursued subsequently in rigorous and comparable cross-country studies.
Based on a series of studies conducted by the World Health Organization, it is commonly believed that outcomes for schizophrenia are better in developing compared with developed countries. Only a few months ago, an editorial in the British Journal of Psychiatry cited this belief and suggested that better outcomes might be due to the “multiplicity of treatment/healing options available in” low and middle income countries (LMIC). This is remarkable for at least three reasons. First, there is now evidence from studies in Brazil, India, Ethiopia, China, Nigeria and Indonesia that suggest outcomes in those settings are not as positive as often assumed. Second, several of these studies suggest that persons with schizophrenia in LMIC experience alarmingly high rates of mortality. Third, there is a distinct lack of evidence of the effectiveness of the treatment and healing options that are available in LMIC. To the contrary, we know that alternative healers often chain, shackle and/or beat the mentally ill persons who are in their care. Furthermore, because of a lack of options, families in many LMIC frequently resort to confining their ill members, sometimes for years at a time.
We do not make these observations to argue that persons with schizophrenia in high-income countries live in conditions that are ideal, or that biomedical interventions are remarkably effective. Both statements would, of course, be untrue. At the same time, we must not romanticize conditions in LMIC. Holding on to the notion of better outcomes may lead to the dangerous belief that it is not necessary to provide evidence-based care and treatment for persons with schizophrenia in LMIC because the nature of the environments in which they live and the traditional responses and remedies available in those settings will promote recovery. And there is another consideration: Even if better outcomes are associated with the sociocultural settings that have been typical of traditional societies in developing countries, those settings are rapidly disappearing in response to the fundamental sociocultural and socioeconomic changes that are being brought about by globalization. Thus, to improve the lives of individuals who experience severe mental illness, wherever they reside, we must rely on the best current evidence rather than wishful thinking and resist facile and ideological rejections of biomedical knowledge.
Images courtesy of Valentina Iemmi. Copyright © 2014 Valentina Iemmi. All rights reserved