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Welcome to the twelfth meeting of the Standing Committee on the Status of Women. Today we are talking about eating disorders amongst girls and women.
I would like to let committee members know that we have agreed to change how we organize our meetings with witnesses. Going forward, we will have witnesses from four organizations for a period of two hours, which will give us more time for questions and encourage discussion. It was not possible to implement this change for today's meeting because the videoconference rooms and the witnesses were not available, but we will start doing things this way as of February 24, 2014.
I would also like to update everyone on our witnesses. The invitation process is going well. Only two organizations, the Mental Health Commission of Canada and the Canadian Institute for Health Information, have refused our invitation, and that is because they are not available. Nevertheless, these organizations have chosen to present briefs to the committee, which could contribute to our study.
In our first hour today, we will hear from Noelle Martin, president and professor at Brescia University College, which is affiliated with Western University, and Joanna Anderson, executive director of Sheena's Place.
Thank you for being here today. You each have 10 minutes for your presentation.
We will start with Noelle Martin.
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Madam Chair and members of the committee, thank you for the invitation to be part of your meeting today. It is truly an honour.
My name is Noelle Martin. I am a private practice dietitian and also a part-time professor at Brescia University College at Western University in London.
In my private practice, I have worked with individuals across the lifespan. However, more recently I have worked solely with university-age clients. I have had an interest in eating disorders for over 20 years, but my direct work as a dietitian with individuals with eating disorders has been done over the past seven years. I feel that I have learned as much from my clients as I have from reading research articles and books, attending conferences, and touring treatment facilities.
In the world of eating disorders, we often talk about “the voice of ED”. ED is the voice that tells a person with anorexia nervosa that they would be a better person if they could just cut their food intake down a little lower or if they could have a flatter stomach. The problem is that ED is never satisfied; it is never enough, to the point of death. Anorexia nervosa has the highest mortality rate of any mental illness. It is estimated that 10% of those diagnosed with anorexia nervosa will die within 10 years of diagnosis.
For a person with bulimia nervosa, ED is the voice that punishes them for giving in to eating after a time of restriction, resulting in a purge that's usually through vomiting or exercise. There are endorphins released when we vomit or when we exercise. For a person with bulimia nervosa, there is a—quote, unquote—stuff-and-release phase. The binge phase is the stuff, and the vomit or the exercise is the release. As endorphins are released in the brain, the individual feels calmer, and for a moment, everything is okay. Eventually, the binge phase may disappear and the purge phase is used over and over again, because the brain needs more and more endorphins released as it is desensitized to the original amounts.
When looking at the prevention of eating disorders, we're looking to never let the voice of ED be heard. In treatment, we try to empower the client to have a stronger voice than ED.
As you may have heard from previous witnesses, the cause of eating disorders is multifactorial. Eating disorders are mental illnesses related to one's relationship with body, food, and others. We know that there's often a genetic link that I think of as a ticking time bomb. Then, we have social, cultural, and environmental factors that may cause the gene to be expressed. For example, it could be a comment from a parent, friend, coach, or teacher that triggers a new thought in one's mind. It could be an article in a magazine, a commercial, or the content of a movie or a show. It can be obvious, or it can be very subtle.
We cannot pinpoint just one thing that is the cause for eating disorders. Because of this, we need to look at prevention strategies that target a variety of areas.
We can use our learning and attitudes about other illnesses when looking at eating disorders, from prevention, to causation, to treatment.
For example, if we only targeted cigarette smoking in cancer prevention, we would only be increasing awareness that smoking may lead to cancer. Instead, we see programs to raise awareness around many possible causations, as well as possible prevention strategies. We need the same for eating disorders. In this light, a diagnosis of cancer cannot always be blamed on the same factor, or on one factor alone, similar to what I have just described with eating disorders.
Thirdly, when a person is diagnosed with cancer, people do not say that “it's all in your head” or to “just get rid of it”, as we sometimes hear with the diagnosis of eating disorders. Rather, they're encouraged to pursue treatment and are offered support. We need the same response and attitude for those who are diagnosed with eating disorders.
With respect to treatment, it is a patient's choice for all illnesses—or at least most—as to what route they will take. Eating disorders are included in this.
If one is diagnosed with cancer, one may be given treatment options such as surgery, chemotherapy, radiation, etc. The person is usually motivated to try to beat the disease if possible. For a client with an eating disorder, this choice is hard. It is difficult to realize that the disease is killing them, because at first it gives them such a sense of control. The loss of control that follows can give them a sense of despair, leaving them unsure about where to turn or what they can do.
The voice of ED is so loud at times that it governs all of their decisions, including whether to choose a path that will lead to a longer and healthier life. It is a heartbreaking battle to watch. In light of the analogy mentioned above and the multifactorial causes of eating disorders, when we look at prevention of eating disorders we need the spectrum to be open beyond reaching those who may develop an eating disorder. Educating parents, coaches, and teachers is essential.
For example, education about ways of how to talk to children in a positive manner with respect to normal growth patterns, the normality of differences between all bodies, and the importance of nourishing our bodies respectfully.... Further to this, as a society we need to focus on getting a better relationship with food and with ourselves. Simple things like not looking at food as good or bad, but rather choosing healthy food more often and treats in moderation.... Phrases such as, “I was so bad today, I had a brownie,” leave the impression that we are a good or a bad person based on what we eat. This is not a positive message for ourselves or our upcoming generation. Because we have such an extreme focus on the rejection of obesity in Canada we very unfortunately have girls and women of healthy body weights who think they need to lose weight.
We need messages about obesity balanced with messages that support healthy body weights and that eating is a necessity for good health. I would love to see campaigns to eradicate what I call “fat talk”. Fat talk would be a statement such as, “I feel fat today.” Fat is not in fact a feeling. When one says that they feel fat they are truly saying that they have a negative emotion inside. We should be asking, what is the true feeling? Fear? Sadness? Anger? Frustration? Then we can get at what is underneath. If we are able to get more in touch with our emotions then we can see a reduction in all mental illnesses, including eating disorders.
Finally, we need to target the upcoming generation directly with similar messages that we are asking parents, coaches, and teachers to deliver regarding usual growth patterns and embracing different body sizes as acceptable. In addition we need to deglamorize fad diets. It appears that more young people understand the dangers of smoking and driving after drinking. There are also deadly dangers in fad diets as they can lead to the development of disordered eating and eating disorders. Therefore attention is needed.
I could speak for hours about my thoughts on this topic and I am truly grateful for your time this afternoon. I am also very excited about the attention that is being given to this topic by your committee. It is valuable and life-saving work. I would be pleased to answer any questions you may have about what I have said or offer any clarifications in the area of disordered eating and eating disorders.
Thank you.
Good afternoon. I'm grateful for the opportunity to speak with you about this important issue.
My name is Joanna Anderson. I'm a clinical social worker specializing in the treatment of eating disorders, and the executive director of Sheena's Place, a non-profit organization in Toronto that provides resources and support for individuals impacted by eating disorders. I commend you on acknowledging that eating disorders are an urgent and widespread problem in Canada.
Today I would like to speak to you about the reality of eating disorders, a reality of which I am painfully aware each day. In 2013 Sheena's Place was the first call for hundreds of individuals seeking help, resources, and support services for themselves or their loved ones: students, clients, or patients. A total of 1,100 people registered for one of our free professionally facilitated support groups, and approximately 22,000 unique individuals went to our website for information and resources regarding eating disorders.
Yet we know that this is only a fraction of the population that desperately needs support. Approximately 170,000 women and 75,000 men in Toronto alone will develop anorexia, bulimia, or binge-eating disorder in their lifetimes.
Through my work at specialized eating disorder units at Toronto General Hospital and the Hospital for Sick Children, and as clinical and now executive director of Sheena's Place, this is what I know about eating disorders.
Number one, eating disorders are egregiously misunderstood. Eating disorders are not diets gone wrong, endemic amongst young affluent women. Eating disorders affect women and men, adolescents and the elderly, and can develop at any point across the lifespan. At Sheena's Place, 33% of our clients are over the age of 40, and 36% of our clients have struggled with their eating disorder for more than 20 years. Without early intervention, this is an entrenched, long-standing illness. The research data tells us that 30% of females aged 10 to 14 and 80% of 18-year-olds report dieting to lose weight despite having a healthy body weight. The stigma and widespread misunderstanding associated with eating disorders prevent those who suffer from accessing treatment and support.
Two, the current mainstream approach within our schools, government, and health institutions is profoundly misguided. Individuals with eating disorders do not need to be educated on nutrition. Lifestyle approaches simply do not address the problem at hand.
I'd like to give you an example. When I worked at SickKids hospital, I worked with a young 13-year-old boy who was hospitalized after someone had come into his class to educate them about healthy eating. In that talk it had been said that fat was bad, that fat should be cut out of diets. Within six weeks this child was in a tertiary health care centre on a heart monitor after he had lost so much weight as a result of receiving that message.
The lesson here is that eating disorders are the product of deeply entrenched genetic, biological, psychological, social, and societal determinants. Nutritional education is not the answer.
Three, life with an eating disorder is one full of suffering for the individuals, their families, and their social networks. A woman in one of our support groups described eating disorders as involving relentless pain, self-loathing, isolation, sadness, hunger, disgust, and self-contempt. Our clients tell us that this is the first thing they think about when they wake up in the morning and the last thing they think about before they go to bed.
Eating disorders are debilitating. Many of our clients rely on parents, partners, or disability and employment insurance for income. Many are unable to work, and have been in and out of hospital for years. Eating disorders have profound physical and psychosocial consequences. Only 44% of our clients at Sheena's Place support themselves through income.
Four, Sheena's Place fills a gap in services. Eating disorders are grossly under-resourced, and the Canadian system we currently have is not working. Individuals suffering from this debilitating illness are not able to access appropriate treatment in a timely manner. Individuals, families, teachers, and often physicians are unaware of the diagnostic criteria, treatment options, or resources available to them.
Among our clients, 60% are not currently receiving other treatment or services, and 40% have never previously received any treatment or services. Despite the lack of treatment services accessed by our clients, we know that we serve a highly clinical population. In fact, 17% of our clients have been diagnosed with anorexia, 24% with bulimia nervosa, and 30% with binge-eating disorder. An astonishing 88% of our clients suffer from one or more co-morbid conditions, the most common of which are depression, anxiety, and trauma-related disorders.
For many people, Sheena's Place is the only place offering accessible services. We provide tangible help to individuals for whom resources are scarce to none, yet we fundraise year-round to keep our doors open and maintain an invaluable source of free and immediate help for individuals affected by eating disorders. We know that when we offer treatment modalities that work, groups fill up and have wait lists within hours of registration opening. We know that the only alternatives to this are expensive private treatments, thousands of dollars on individual therapy that many of our clients cannot afford, or waiting many months for one of the few publicly funded spots available.
In the absence of a national strategy, individuals with eating disorders are essentially left to fend for themselves. Of the minority of our clients who are currently receiving other services, 82% are paying for private sector individual therapy. What we know is that early identification and treatment is highly predictive of better prognosis. Waiting times have a significant impact on people's ability to recover. A young woman in Ontario has recently turned to crowd-funding $60,000 to pay for life-saving treatment for her eating disorder. Her story is a stark reminder of the fact that our clients often cannot wait 18 months for treatment.
We help people navigate the patchwork of public and private services available. We frequently hear from our clients that it takes years to learn that landscape of eating disorder treatment. The informal patchwork, of which we are a part, lacks infrastructure, funding, and coordination. Financial support for organizations like ours would help build a centralized database of resources informing people of the treatment and support systems available to them. It would also foster collaborations between organizations working in the field.
A letter from one of our clients speaks to the difficulties and failures of our current eating disorder system. This is a mom of a young 10-year-old boy who attends our mothers' support group. She said:
My weekly support group is 90 minutes, in seven days, where I feel heard, understood and not alone. I feel the hope of the other mothers and am bolstered by their bravery and inspired by their resourcefulness and intelligence. I get real concrete advice and information about a disease that is a moving target in a healthcare system that is strained and sometimes difficult to navigate.
We are proud of the services we offer, yet we are keenly aware of the harsh reality that our ability to fill the gap in eating disorder services is best likened to a drop in the ocean. It is clear that we need a national registry for eating disorder patients so we can track their outcomes. We need a nationally funded research strategy, adequate training, and knowledge translation. We also need a national awareness campaign.
At Sheena's Place we work to reduce stigma, raise awareness, and educate individuals about the resources and services available to them. We are the first call for media organizations as well as concerned teachers, parents, and social service workers. We are asked on a daily basis to speak to high schools, universities, and publicly funded organizations about eating disorders and weight preoccupation. As a small organization with no public funding, we cannot keep up with these demands. We desperately need a national media campaign to inform the public that eating disorders are a grave mental health issue. We need to change the flawed premise that underlies current coverage of healthy bodies and disordered eating.
We also need financial support for resource and support centres like ours. At Sheena's Place we strive to give meaningful help and information at all stages of recovery. We know that with treatment, our clients can recover. We know that our services are invaluable and save lives, but we lack the necessary resources to expand and build upon our current services. Yet at this point, this is the state of the nation.
Eating disorders are extremely dangerous mental health disorders that are downplayed and misunderstood, and our social and health care services are inadequate at treating them. With secure funding initiatives, Sheena's Place could expand innovative programs that prevent eating disorders before they happen, provide support services to underserved and isolated populations, and help our clients navigate and dismantle the systematic discrimination faced by individuals with eating disorders.
I commend you for beginning this process and I'm grateful to participate in the conversation. I'll happily take any questions you may have.
Thank you.
Thank you, Madam Chair and members of the committee. I very much appreciate this opportunity to speak to you today about the matter of eating disorders. It's a subject that I have devoted the first five years of my professional career to.
I speak to you today principally from the perspective of a clinician. I spend most of my working hours engaged in the treatment of eating disorders. On any given day, I meet with patients of all ages who are suffering with these often severe and complex conditions. I also meet with worried, desperate parents. I meet with exhausted spouses. I meet with the siblings and children of those who are struggling to recover from or simply to cope with eating disorder symptoms. I deal with a lot of fear and anger, as well as confusion and denial.
As you have heard in your inquiry thus far, eating disorders are amongst the most lethal of all mental health conditions. They affect young women, significantly distorting what could otherwise be a normal developmental trajectory through adolescence, thereby establishing the conditions for further mental illness throughout their lives. These conditions are almost never present without significant co-morbid symptoms, principally those of depression and anxiety, but self-harm, substance abuse, and other impulse control problems are also often present.
What is less measurable here, and by far more meaningful to the individual, is the extent of the suffering these diseases exact on patients and their families—the broader toll on society. From my unique, and I would say, privileged vantage point, I can tell you that the suffering created by eating disorders is immense.
Through my affiliation with the University of Calgary, I provide education and mentorship to medical students and resident physicians at various levels of training. In my lectures, I generally begin by explaining what eating disorders are not. They are not the result of personal choice, they are not glamorous, they are not minor, they are not phases, and they are not the result of bad parenting, etc.
I often feel like I'm starting at a deficit. I'm working against a powerful media force, and in some cases, an already rigid set of societal beliefs about what eating disorders are and what people with eating disorders are like. Without excessive digression, I will point out what is obvious.
We live in a time and place where female beauty is often equated to power. Sadly, the belief is that to be beautiful is to be thin, so to the fresh eager ears of medical students, it's often difficult for them to truly appreciate what is so bad about the pursuit or attainment of thinness.
I believe that this is where some of the issues in treatment begin, at the beginning. All stakeholders, and in particular, all physicians need to understand what eating disorders are. They need to be taught how to diagnose these conditions and generally how to manage them until people can access comprehensive specialized treatment centres.
Beyond this, they need to be prepared to deliver a diagnosis that the patient may not like or may deny. In other words, they need to be prepared for the discomfort that is often required in treating a patient who is often unable to be compliant or who may not have the investment in the diagnosis. They need also some preparation in how to talk to parents and partners about the condition, because without this alliance a physician's power is reduced to the few moments they spend with a patient in their office.
Knowledge of eating disorder management must extend beyond the realm of family physicians, pediatricians, and psychiatrists. Almost all practising physicians will encounter individuals with eating disorders. Making the diagnosis and taking timely, appropriate next steps is crucial and can be life-saving.
To strengthen my argument about the need for better management of eating disorder patients by all physicians, regardless of specialty, I will provide you with the following vignette, which literally took place only yesterday.
I received a call from an experienced internist who was concerned about a patient she had recently seen. It was an 18-year-old woman who had experienced unexplained weight loss over the preceding two years. Her medical status was so severe that she had a BMI of 13 and was in renal failure. After a comprehensive assessment, the internist felt confident that the individual had a diagnosis of anorexia nervosa. When she attempted to share her views with the patient and her mother, both rejected the diagnosis and became angry at the mere suggestion of it.
Worried and conflicted about what to do next, the internist placed a call to the two other specialists who had seen the patient and to the GP who made the referral. None of these individuals had considered the diagnosis of anorexia. Instead, multiple expensive and invasive tests had been done to find the elusive cause of her weight loss.
She spoke to one of her colleagues whose response was not to be too hasty in making the diagnosis of anorexia. Instead, the plan was to pursue rare and highly unlikely malabsorption syndromes, what we call “zebras" in the medical world. The physician's response to the possibility that the condition was anorexia nervosa was revealing. He said, "Let's give her a chance. It still might be something else".
The internist was calling me because she had no idea how to proceed. She knew what the diagnosis was, but no one—not the patient, not the parent, not the other physicians involved—wanted to call it what it was, not the rare zebra, but the unfortunately common horse, anorexia nervosa, with a prevalence in young woman of between 5% and 10%. This exemplifies how physicians may deny or fail to see eating disorder diagnoses and thereby significantly impact a young person's chances of recovery. In this case, this young person had been ill for two years, had dropped out of school and sports, which she had previously excelled at, and was walking around the city of Calgary at a dangerously low BMI and at risk of further decline and sudden death.
I hope the committee can appreciate with this story the challenges that physicians face and the complexity of providing doctors with necessary support and information at critical junctures during their training.
I will leave this topic with a sobering fact: exposure to eating disorder treatment programs is optional even in psychiatric residency training programs.
With regard to treatment, I have been the medical director of the Calgary eating disorder program for two years. In this capacity, I have had a twofold focus. First, our program needs to provide evidence-based treatment to those who suffer from eating disorders. Second, we need to provide service in such a way as to meet the needs of southern Albertans. In short, we are not providing adequate services if patients must navigate a long wait list to access our care, because every day that goes by before a patient is comprehensively and effectively treated is another day in which their disorder can grow stronger and another day in which patients become more removed from who they were before the eating disorder entered their lives. It is a time when suffering expands.
Timely, appropriate access to good-quality care is imperative in the treatment of eating disorders, and in most parts of the country we are failing.
In my view, there are some ways we can make the situation better.
First, there should be mandatory comprehensive education of all medical students and resident physicians on the subject of eating disorders.
Next, there should be a mandatory requirement that publicly funded programs practise evidence-based treatment, not just whatever the flavour of the month is, not just what individual clinicians would like to do. Funding for infrastructure and training must be driven with the goal of delivering evidence-based care, and the resources must match the scale of the problem and what is required to deliver that care. Better mechanisms must be put in place to support physicians treating individuals in the community and for those working in remote and rural areas.
Finally, mechanisms through which programs can interact, share data, and collaborate on research to accelerate understanding must be established and supported.
With that, I'll say thank you so very much for this opportunity to contribute to this important work.
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I do not think it is about changing the entire system or about reinventing the wheel. Rather than overhauling a system that may be helping many individuals and that is evidence-based, we recommend the development of an alternate system of community-based treatment and support. This system would focus on prevention and on counseling people before they develop chronic conditions. As well, alternative approaches to care may be more appropriate for individuals for whom mainstream approaches have not worked.
While we have accurate statistics about individuals who obtain a diagnosis, our research shows that there are many others who remain undiagnosed. These unnamed and unheard others may face stigma or be dismissed by community, family, medical providers, and others on the basis of their body size or on the basis of their race or ethnicity or their gender, among other factors. To better match services to complex needs, we envision a system with multiple points of entry and multiple approaches to care and support tailored to the needs of these different groups.
A number of barriers may prevent individuals from seeking needed care, not the least of which is how we talk about eating disorders. Though we are starting to see some shifts, a number of stereotypes persist in the popular imagination. Among these, we may still expect eating disorders to be a problem of young, white, middle- to upper-class heterosexual women with hyper-emaciated bodies.
Those who don't fit this stereotype may feel that their disorder is not legitimate in the face of this single story or single representation. This perception may be magnified if people confront negative experiences with health professionals, family members, and others.
Let me give you an example. Individuals from minority groups in particular may face a system that disbelieves in their disordered eating, while also feeling that to seek treatment is to broach and also to breach their ethnic or racial identity.
For example, in researching body image and eating concerns among diverse groups of Canadian women, I spoke with a number of racialized women—Asian women, South Asian, as well as African Caribbean Canadian women—whose eating disorders were misdiagnosed or dismissed by health care providers, an experience that complicated their recovery and that they attributed to race. In other words, they attributed it to health providers' not being able to imagine, because of this dominant mythology, someone of their racial group struggling with an eating disorder. Andrea has heard similar stories from her research participants.
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I think you've really hit the nail on the head there.
I think we have to be really careful about looking at these illnesses as being about food. The restriction of food is a symptom of some underlying, more complex, as I said, kind of cognitive or emotional problem or dilemma. Now we get into really grey areas, where we start talking about the individual and what is the core, the root, of the conflict that has led to them needing to manifest that conflict or that struggle in these ways.
That's where the richness comes in—the social and cultural influences, the genetics, the biology, the early role-modelling. All of these factors will feed into some sort of need or conflict that will be played out or experienced as an eating disorder.
But you're quite right that if we just focus on food, if we cut off that branch of the tree without looking at the deeper issues and without helping a person to understand themselves, their narrative, their emotional experiences, or how to regulate them, then the problem will invariably resurface as abuse of alcohol or drugs, or cutting, or...in a quieter way, let's put it that way.