Help break the stigma against mental illness! In January this year, on a cold winter’s day, a broad spectrum of Nordic colleagues met at the Pufendorf Institute, Lund University, in Sweden. We were psychiatrists, researchers in disciplines ranging from neuroscience to philosophy, patients and journalists. We met quietly to see if there was common ground. Our ambition was to analyze, debate and formulate the first steps in a strategy. The topic: the largest taboo in Nordic societies- the stigma against mental illness. Stigma in psychiatry is an issue of vital importance, to patients and psychiatrists alike, as stigma against patients may reduce their willingness to seek care (1) and reduce the success of rehabilitation efforts, along with an already reduced life quality. The questions are; how is this stigma being manifested? And what actions can we take against it? Nordic societies are well known for gender equality, human rights and strong welfare systems on the global arena. All of these are indeed achievements to be proud of. The dark secret, however, is that some groups are still left behind and treated with less than acceptable levels of humanity in society at large. We here refer specifically to those with mental disorders. At the Pufendorf Institute meeting we started sharing knowledge, and could see more clearly the structures underpinning the stigma against mental illness. The questions arising were very clear indeed. •
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• Public stigmatization: Large parts of the population do not want to either live near or work with people who have, or have had, mental illness (2). At the workplace there are less effective support mechanisms for those affected by mental disorders than is the case for those affected by somatic disorders. Nordic societies strive for social cohesion. Yet this has not yet reached those affected by mental illness. Why is this group left outside? Deadly diseases: Those with mental diseases live 10-15 years shorter than the average population, being more affected also by somatic diseases (overweight, cardiovascular and pulmonary disease etc.)(3), whereas they get care less frequently or of lower quality, than those with no mental health issues. Why do people with mental health issues get less qualified care for e.g. heart problems than others? Banalization of suffering: It was stated at the Pufendorf meeting that psychiatric diseases are seen as “banal” affections, where everybody is entitled to an opinion. There is a lack of respect for the disease, by lay people,
© 2014 Informa Healthcare
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journalists or even medical staff. “Pull yourself together!”, “Why don’t you go and get some exercise?”, “Can’t you stop taking that medicine?” are all examples of comments people affected by mental illness meet regularly from people with no privy information whatsoever into their condition. Why is it acceptable to banalize psychiatric problems and treatments, in a way that would never be OK if the problem was diabetes, cancer or Chronic Obstructive Pulmonary Disease? Wearing down of families: Next of kin spend 20 hours more per week and 14% of net income on having one family member with mental illness. The “collateral damage” is enormous, with few support structures. At school the lack of individual tailoring in teaching practices results in a lack of knowledge and competences from the initial school years. Why is a blind child looked after so much better by the health care and school system, than a child with psychiatric challenges? Political harassment: 20-30 % of the disease burden in total gets some 7-8% of the health budget. The old mental hospitals were closed in the 1980’s, with the promise of expanded care in homes and at out-patient units. Step one was concluded, but step two was never fully implemented. Society saved some 80% of all care costs as the hospitals closed - patients are now suffering from lack of proper follow up. Why is this form of illness underfunded, in relation to the disease burden, by approx 70%? Health care discrimination: Health care officials in Sweden, who are setting optimal medical prices on publicly provided health care systems, have decided that maximum medical costs for mentally ill patients, even if suicidal, can be about 1% of maximum costs for eg. cancer patients. Why is this specific form of death threatening human suffering worth 99% less than other death threatening suffering? Lack of knowledge, research and hope: 20-30% of the disease burden gets 7% of the total research budget in medical research, i.e. an underfunding again of some 70%, which leads to fewer mechanisms understood, and fewer drug discoveries, which perpetuates stigma and hopelessness. Why are these diseases less worthy of human discovery, understanding, hope and new drugs? Donor discrimination: Usually private donors will give money to areas that affect their families in private. But this logic does not apply to the area of psychiatry. There are very few private donations to psychiatric research, compared to somatic disease (4). Why are donors afraid to support the strong unmet needs in this specific area of medical research?
DOI: 10.3109/08039488.2014.910365
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Discrimination in media: A recent study showed that 40% of the times media talk about mentally ill people, the stories are connected to violence and crime. Those affected are either silenced (very little written at all) or depicted as “dangerous” ( 5, 6). Why do journalists in all Nordic countries treat those affected with less dignity than other vulnerable groups?
Meanwhile at the ranch, the problems are growing. In any given day, approx 40% of all people not at work, in education or training are at home because of mental health issues. The most prevalent affections are found among people suffering from depression, anxiety and Exhaustion Disorder. Among children Generalized Anxiety disorder (GAD) is growing, as is Attention Deficit Disorder (GAD) among young girls. Bipolar disease and schizophrenia strike people with a fist, and living with the autism spectrum is a life long struggle for those affected and their families. The cost for society is enormous and growing: annually, approx 70 billion SEK in Sweden and 55 billion DK in Denmark. We cannot run away from the problems. The word “stigma” is Greek, and means carrying an invisible mark. But in our opinion the stigma is not carried by those affected by disease,- instead it is carried by the Nordic societies at large, until we can embrace mental diseases with the same humanity, quality in care and sense of urgency when it comes to research, understanding and new cures as other large and complicated diseases. We therefore call on: •
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226
Politicians: Invest in research, health care and general care, to the level of the disease burden. This would mean an increase in budgets of approx 70% as a long term goal. Evidence shows society actually save money by early and improved care. Media: Treat those affected with the same degree of respect and dignity as other vulnerable groups. Include mental illness in antidiscrimination guidelines. The public: Learn more, ask more, be open to human differences-we are not all the same, but the value of each of us is the same. Put pressure on politicians, media and organizations, for equal treatments, research and human respect. Those affected and their families: Have hope! Your demands are moral, good and just. There will be change. Private donors: Dare to take the lead. All: Recognize that with mental illness comes artistic ability, creativity and abilities to cross boundaries. The human history of mental illnesses is a large coin, with a back and a front side-it is not all bad.
As often in life, Hollywood understands things in an intuitive way, before the rest of us do. In more and more films and TV-series, key roles are written as having mental health issues, as in “Homeland”, “Silver Linings “ or even in the Nordic “Bron”. This is part of the larger global trend of diversity, accepting non-sameness, increased knowledge and openness which have led to gays, HIV-affected and other formerly stigmatized groups coming out of the closet. In the area of cancer, increased research efforts, new medical treatments and increased life expectancy, has led to a dramatic new openness about the disease. This is inspiring to us, and shows that stigma can indeed be changed. In the Nordic states we have indeed achieved a lot in the psychiatric field, and psychiatrists are taking the battle for their patients forward, with passion and intelligence - now it’s time to stand up even stronger for our psychiatric patients assuring equal rights in society at large, and the end to the trivialization of their disease. The time has come for mental disease to come out of that old closet of non-deserved shame. And that time is NOW. Maria Borelius Science journalist, Author of “Bryt sista tabut-mental ohälsa ut ur garderoben” (Natur&Kultur) Anne Lindhardt Psychiatrist, Chairman Danish Mental Health Fund Denmark Martin Schalling Professor, Karolinska Institutet, Chairman Swedish Mental Health Fund, Sweden
References 1. Forsell Y. The pathway to meeting need for mental health services in Sweden. Psychiatr Serv. 2006;57(1):114–9. 2. Hansson L (2012), Lund University. “Psykisk ohälsa – attityder, kunskap, beteende. En jämförande befolkningsundersökning 2009–2011”. 3. Mortality and causes of death in schizophrenia in Stockholm county, Sweden. Osby U, Correia N, Brandt L, Ekbom A, Sparén P. Schizophr Res. 2000;45(1–2):21–8. 4. Borelius M (Natur & Kultur 2013) Bryt sista tabut-mental ohälsa ut ur garderoben. 5. Nawková L, et al. The Picture of Mental Health/Illness in the Printed Media in Three Central European Countries. Journal of Health Communication 2012;17(1):22–40. 6. Corrigan PW, Watson AC, Gracia G, et al. Newspaper Stories as Measures of Structual Stigma. Psychiatric Services 2005;56(5): ss. 551–556.
NORD J PSYCHIATRY·VOL 68 NO 4·2014
Copyright of Nordic Journal of Psychiatry is the property of Taylor & Francis Ltd 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.
Copyright of Nordic Journal of Psychiatry is the property of Taylor & Francis Ltd 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.
•
•
•
•
• Public stigmatization: Large parts of the population do not want to either live near or work with people who have, or have had, mental illness (2). At the workplace there are less effective support mechanisms for those affected by mental disorders than is the case for those affected by somatic disorders. Nordic societies strive for social cohesion. Yet this has not yet reached those affected by mental illness. Why is this group left outside? Deadly diseases: Those with mental diseases live 10-15 years shorter than the average population, being more affected also by somatic diseases (overweight, cardiovascular and pulmonary disease etc.)(3), whereas they get care less frequently or of lower quality, than those with no mental health issues. Why do people with mental health issues get less qualified care for e.g. heart problems than others? Banalization of suffering: It was stated at the Pufendorf meeting that psychiatric diseases are seen as “banal” affections, where everybody is entitled to an opinion. There is a lack of respect for the disease, by lay people,
© 2014 Informa Healthcare
•
•
journalists or even medical staff. “Pull yourself together!”, “Why don’t you go and get some exercise?”, “Can’t you stop taking that medicine?” are all examples of comments people affected by mental illness meet regularly from people with no privy information whatsoever into their condition. Why is it acceptable to banalize psychiatric problems and treatments, in a way that would never be OK if the problem was diabetes, cancer or Chronic Obstructive Pulmonary Disease? Wearing down of families: Next of kin spend 20 hours more per week and 14% of net income on having one family member with mental illness. The “collateral damage” is enormous, with few support structures. At school the lack of individual tailoring in teaching practices results in a lack of knowledge and competences from the initial school years. Why is a blind child looked after so much better by the health care and school system, than a child with psychiatric challenges? Political harassment: 20-30 % of the disease burden in total gets some 7-8% of the health budget. The old mental hospitals were closed in the 1980’s, with the promise of expanded care in homes and at out-patient units. Step one was concluded, but step two was never fully implemented. Society saved some 80% of all care costs as the hospitals closed - patients are now suffering from lack of proper follow up. Why is this form of illness underfunded, in relation to the disease burden, by approx 70%? Health care discrimination: Health care officials in Sweden, who are setting optimal medical prices on publicly provided health care systems, have decided that maximum medical costs for mentally ill patients, even if suicidal, can be about 1% of maximum costs for eg. cancer patients. Why is this specific form of death threatening human suffering worth 99% less than other death threatening suffering? Lack of knowledge, research and hope: 20-30% of the disease burden gets 7% of the total research budget in medical research, i.e. an underfunding again of some 70%, which leads to fewer mechanisms understood, and fewer drug discoveries, which perpetuates stigma and hopelessness. Why are these diseases less worthy of human discovery, understanding, hope and new drugs? Donor discrimination: Usually private donors will give money to areas that affect their families in private. But this logic does not apply to the area of psychiatry. There are very few private donations to psychiatric research, compared to somatic disease (4). Why are donors afraid to support the strong unmet needs in this specific area of medical research?
DOI: 10.3109/08039488.2014.910365
•
Discrimination in media: A recent study showed that 40% of the times media talk about mentally ill people, the stories are connected to violence and crime. Those affected are either silenced (very little written at all) or depicted as “dangerous” ( 5, 6). Why do journalists in all Nordic countries treat those affected with less dignity than other vulnerable groups?
Meanwhile at the ranch, the problems are growing. In any given day, approx 40% of all people not at work, in education or training are at home because of mental health issues. The most prevalent affections are found among people suffering from depression, anxiety and Exhaustion Disorder. Among children Generalized Anxiety disorder (GAD) is growing, as is Attention Deficit Disorder (GAD) among young girls. Bipolar disease and schizophrenia strike people with a fist, and living with the autism spectrum is a life long struggle for those affected and their families. The cost for society is enormous and growing: annually, approx 70 billion SEK in Sweden and 55 billion DK in Denmark. We cannot run away from the problems. The word “stigma” is Greek, and means carrying an invisible mark. But in our opinion the stigma is not carried by those affected by disease,- instead it is carried by the Nordic societies at large, until we can embrace mental diseases with the same humanity, quality in care and sense of urgency when it comes to research, understanding and new cures as other large and complicated diseases. We therefore call on: •
• •
• • •
226
Politicians: Invest in research, health care and general care, to the level of the disease burden. This would mean an increase in budgets of approx 70% as a long term goal. Evidence shows society actually save money by early and improved care. Media: Treat those affected with the same degree of respect and dignity as other vulnerable groups. Include mental illness in antidiscrimination guidelines. The public: Learn more, ask more, be open to human differences-we are not all the same, but the value of each of us is the same. Put pressure on politicians, media and organizations, for equal treatments, research and human respect. Those affected and their families: Have hope! Your demands are moral, good and just. There will be change. Private donors: Dare to take the lead. All: Recognize that with mental illness comes artistic ability, creativity and abilities to cross boundaries. The human history of mental illnesses is a large coin, with a back and a front side-it is not all bad.
As often in life, Hollywood understands things in an intuitive way, before the rest of us do. In more and more films and TV-series, key roles are written as having mental health issues, as in “Homeland”, “Silver Linings “ or even in the Nordic “Bron”. This is part of the larger global trend of diversity, accepting non-sameness, increased knowledge and openness which have led to gays, HIV-affected and other formerly stigmatized groups coming out of the closet. In the area of cancer, increased research efforts, new medical treatments and increased life expectancy, has led to a dramatic new openness about the disease. This is inspiring to us, and shows that stigma can indeed be changed. In the Nordic states we have indeed achieved a lot in the psychiatric field, and psychiatrists are taking the battle for their patients forward, with passion and intelligence - now it’s time to stand up even stronger for our psychiatric patients assuring equal rights in society at large, and the end to the trivialization of their disease. The time has come for mental disease to come out of that old closet of non-deserved shame. And that time is NOW. Maria Borelius Science journalist, Author of “Bryt sista tabut-mental ohälsa ut ur garderoben” (Natur&Kultur) Anne Lindhardt Psychiatrist, Chairman Danish Mental Health Fund Denmark Martin Schalling Professor, Karolinska Institutet, Chairman Swedish Mental Health Fund, Sweden
References 1. Forsell Y. The pathway to meeting need for mental health services in Sweden. Psychiatr Serv. 2006;57(1):114–9. 2. Hansson L (2012), Lund University. “Psykisk ohälsa – attityder, kunskap, beteende. En jämförande befolkningsundersökning 2009–2011”. 3. Mortality and causes of death in schizophrenia in Stockholm county, Sweden. Osby U, Correia N, Brandt L, Ekbom A, Sparén P. Schizophr Res. 2000;45(1–2):21–8. 4. Borelius M (Natur & Kultur 2013) Bryt sista tabut-mental ohälsa ut ur garderoben. 5. Nawková L, et al. The Picture of Mental Health/Illness in the Printed Media in Three Central European Countries. Journal of Health Communication 2012;17(1):22–40. 6. Corrigan PW, Watson AC, Gracia G, et al. Newspaper Stories as Measures of Structual Stigma. Psychiatric Services 2005;56(5): ss. 551–556.
NORD J PSYCHIATRY·VOL 68 NO 4·2014
Copyright of Nordic Journal of Psychiatry is the property of Taylor & Francis Ltd 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.
Copyright of Nordic Journal of Psychiatry is the property of Taylor & Francis Ltd 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.
