Anti-stigma Campaigns aren’t just for the Public
By Ellen Nielsen
Spring 2010, Volume 13 no 3
" You are not making any sense. Go home and come back when you are able to make sense.”
These are the words one Calgary, Alberta–based lawyer heard from her family doctor, after she became incoherent and disoriented in court and a concerned colleague rushed her to the doctor. Despite her psychotic state, Dora Herceg did go home that day. She was later diagnosed with schizoaffective disorder, with bipolar and neurological aspects.
Most health care workers would be horrified to know a person in need of care was treated this way. After all, health care workers generally choose their professions because they care about people and want to make a difference.
It would be one thing if Herceg’s experience were an anomaly. Unfortunately, she, like many others with mental health issues, reports that she regularly experienced stigmatizing attitudes and behaviour on her journey through the health care system.
Stigma is a term once used to refer to a mark branded into the skin of slaves and criminals, so others would know to shun them, especially in public. It may no longer be acceptable to mark people for the purpose of stigmatizing them, but stigma still exists. Mental illness is one area where this mark remains.
It emerged clearly through the cross-country hearings of the Standing Senate Committee on Social Affairs, Science and Technology, as part of the federal government’s look at the status of mental health in Canada. The hearings constituted the most extensive public consultation process ever conducted in Canada on the subject. What was repeated over and over in the course of 130 hours of hearings, with more than 300 witnesses, was that stigma is the issue consumers identify as the biggest problem they face – more so than the illness itself. Consumers described how stigma affects the way they feel about themselves, how it discourages them from seeking treatment, and, consequently, how it affects the amount of time it takes them to recover – if at all.
Describing stigma is one thing, but acting on it is another. When the Mental Health Commission of Canada was formed out of the hearing recommendations, it was this need to act that prompted the development of its Opening Minds campaign, a 10-year anti-stigma / anti-discrimination initiative designed to change the attitudes and behaviours of Canadians towards those with mental illness. Although stigma pervades society, the campaign’s initial focus is on two groups – youth and health care professionals.
Health care workers have been targeted because it is on the front lines of health care that people seeking help have reported some of the most deeply felt stigma and discrimination. Research has found that people with mental illness often report feeling patronized, punished or humiliated in their contact with health care providers. Psychiatrist and stigma researcher Dr. Graham Thornicroft has found that they may be spoken to as if they were children, ignored in decision-making, and written off as incapable of responsibility. Health care workers also often view people with mental illness as difficult, less deserving of care, manipulative, attention-seeking, annoying and in control of their own behaviour – remember the advice Dora Herceg’s doctor gave her?
Despite strong evidence that recovery is much more common than people think (including for those with severe mental illness), some health care providers continue to believe that mental illness automatically consigns people to a slow and difficult downward slide. This profoundly affects hope and recovery in a population that needs support and understanding.
Stigma can translate into long wait times because mental health conditions are not considered serious. When Dora’s husband took her to the ER later on that day her doctor sent her home, they were shuttled into a quiet area to “wait it out.” It wasn’t until 12 hours later that Dora and her husband saw a second ER doctor, who realized Dora needed to be admitted right away.
Stigma also leads to a 70 per cent misdiagnosis rate. The doctor at the walk-in clinic Dora and her husband visited before going to the ER thought she was pregnant – as though that is how pregnant women behave! And stigma is implicated in the average 10-year delay from first seeking help to getting an accurate diagnosis.
Another manifestation of stigma is diagnostic overshadowing, a dismissal of other, physical conditions as “all in your head,” which means these issues go untreated. Thornicroft and other researchers have found that people with mental illness who seek treatment for physical problems often receive sub-standard levels of care, resulting in higher rates of infections; post-operative complications, including death; and longer stays in hospital.
Given the serious consequences of stigma and discrimination, it’s important to develop effective stigma-busting strategies. To this end, the MHCC last year sent a nation-wide invitation for programs already doing stigma-reducing work with its two initial target groups to get involved with Opening Minds. Of the almost 250 submissions from programs that target youth and health care workers, 18 were selected for the health worker component. Examples of these pilots are provided throughout this issue of CrossCurrents. The projects will be evaluated, and the findings will be used to create resources so the best programs can be replicated nationally. Opening Minds will also conduct a gap analysis to identify areas that still need to be addressed. The campaign will also target stigma in other groups and settings, including the workplace.
Opening Minds is also partnering with a “Mental Health Table” made up of national organizations representing professionals in the medical community, including the Canadian Medical Association, the College of Family Physicians of Canada, the Registered Psychiatric Nurses of Canada, the Canadian Psychological Association and the Canadian Psychiatric Association. Some of these professional organizations are also running their own stigma-busting campaigns targeting members of their respective professions (see sidebar).
Ultimately, the vision is to create a Canada where all citizens are supported in their efforts to be physically and mentally healthy, and where those in need of help are able to get it – and where those to whom they turn can provide it.
For more information about Opening Minds and to read Dora Herceg’s story, visit the Opening Minds web site.
Ellen Nielsen is a senior communications advisor to the Mental Health Commission of Canada.
What are you doing to fight stigma?
Leaders in high-profile mental health professions, for example, the Canadian Psychiatric Association, have spoken publicly about stigma and discrimination among their ranks. According to Dr. Manon Charbonneau, past-president of the Canadian Psychiatric Association, “Stigma is not solely the domain of others. As professionals we need to be conscious of our own stigma-prone behaviours or the internalized stigma we may perpetuate.” So what are the mental health professions doing to combat stigma and discrimination within their ranks?
Association of Faculties of Medicine of Canada. The AFMC has acknowledged at senior levels the potential for undergraduate and graduate education to combat stigma and discrimination toward people with mental illness in the medical professions.
Canadian Association of Occupational Therapists. At the 2008 annual conference of the Canadian Association of Occupational Therapists in Whitehorse, Yukon, Terry Krupa accepted the Muriel Driver Memorial Lectureship Award, which honours excellence in the profession. Her address to the audience focused on stigma towards people with mental illness among occupational therapists.
Canadian Medical Association. In 2008, the CMA passed motions aimed at ending discrimination in health care towards people with mental illness. These motions call for collaborative action between physicians and psychiatrists to ensure better access to mental health care and for improved funding for mental health services, which lags far behind other areas of health care.
Canadian Psychiatric Association. The Stigma Working Group of the CPA developed a survey of CPA members under the guidance of Dr. Heather Stuart, now the Mental Health Commission of Canada’s senior consultant for its Opening Minds campaign. In this Putting the Squeeze on Stigma campaign, psychiatrists were asked to describe the stigma they, their colleagues and clients have experienced, as well as to indicate what they thought should be priority areas for action by the Stigma Working Group. In a second survey, psychiatrists were asked to share their experience of what works to combat that stigma. The stories and suggested priorities will be compiled into a compendium on the CPA web site.
Canadian Psychological Association. In the 2009 winter edition of Psynopsis, a psychology newspaper published by the CPA, executive director Karen Cohen called on psychologists to confront stigma, and to begin by acknowledging its existence within their profession.
Mood Disorders Society of Canada. The MDSC has called upon all health care professionals to confront stigma and discrimination within their own ranks and to develop an action plan to deal with them. At the MDSC’s 2006 stigma research workshop, attendees identified stigma and discrimination as expressed by health and mental health professionals as their number one priority. Read the report, Stigma and Discrimination – As Expressed by Mental Health Professionals. Also read the progress report, Stigma Research and Anti-Stigma Programs: From the Point of View of People Who Live with Stigma and Discrimination Everyday.