:
Thank you. I would like to thank you for inviting us.
I'm going to strive to be efficient and concise. I had an opportunity to review the transcripts from the previous presenters. I'm going to endeavour not to repeat their points, although I did agree with the majority of them. Because you'll be seeing a number of witnesses who are going to present you with numbers and a kind of state of the union, I've decided that I would opt out and give you a first-hand account, but of course, I have to start with a few numbers just to contextualize what I'm going to talk about.
Yesterday I did a search on the CIHR web page to look at the number of dollars that have been spent on operating grants for eating disorders in the last five years. I came up with a number of $7.5 million, which sounds like a lot, but then I keyed in “schizophrenia” and I came up with a total of $86 million. That's more than a factor of 10 in terms of allocation of money. Eating disorders are as severe and more prevalent than schizophrenia, which is why I chose schizophrenia as a comparison. So it's $7.5 million versus $86 million.
There are other numbers I want to highlight.
The rate of obesity in adolescent girls in Canada is 9%. That's Stats Canada data. The rate of eating disorders is estimated to be around 18%. The rate of new cases of restricted eating disorders in children between the ages of five and twelve is four times the rate of new cases of type II diabetes in the same population.
In Canada we have no intensive specialized mental health programs that would specifically treat children with eating disorders. When it comes to adolescents, that is also true in at least three of our provinces and all of our territories where no intensive specialized treatment exists.
Psychiatry residents are more likely to be exposed to negative stereotypes of eating disorders and to be discouraged from treating patients with eating disorders than they are to receive appropriate training and education on eating disorders.
I am here today as one of the senior psychiatric experts in child and adolescent psychiatry, and that is not a good thing. I am still too early in my career to be in a senior position; however, I'm senior because there is no one ahead of me. I started the first-aid treatment program for adolescents with eating disorders while I was still in training as a fellow. Since then I have gone on to help develop two...[Technical Difficulty—Editor]...programs, a second day treatment program, in-patient programming, outpatient programming. I was the founding member of the Eating Disorder Association of Canada and its first president, all because there was no one else doing the work, no one else to fill in the gaps.
A couple of years ago I gave up applying to CIHR for research grants. I've also given up on the idea of academic promotion. I will likely always remain an assistant professor, and more recently I left a full-time position at an academic children's hospital that houses our local specialized eating disorder services. This is not because my work is subpar—I have won awards throughout my career for my work—it's because the barriers are too great and I'm tired of trying to get around them.
Now if this was only my story, I would be wasting your time. The problem is that this is a story of almost every child psychiatrist in Canada who has attempted to work in the field of eating disorders.
The reason there are no psychiatrists more senior than me is that after about 10 years of hitting their heads against the wall—it does seem to be a 10-year cycle—those who came before my generation burned out and went elsewhere.
Now I am witness to the colleagues of my generation as they leave the field. Across the country senior child psychiatrist experts are falling away, leaving...[Technical Difficulty-—Editor]...care programs with vacancies that are filled by new graduates with little training and less experience, or are filled by pediatricians, or remain empty. This has occurred in some fashion in all but one of the seven provinces that could have tertiary or specialized intensive programs for treating eating disorders in adolescents.
I'm just going to back up here for a minute.
Across the country, senior top psychiatry experts are falling away, leaving tertiary care programs with vacancies that are filled by new graduates with little training and less experience, filled by pediatricians, or left vacant. This has occurred in some fashion in all but one of the seven provinces that currently have tertiary or specialized intensive programs to treat adolescents with eating disorders.
Would we accept this situation for any other life-threatening illness? What if all the senior pediatric cardiologists left? Would this not be a crisis? Would it be okay if the cardiology programs were just hiring new graduates to run their programs even if they had little or no training? Would it be okay if they just hired an adult cardiologist who had no training in working with children? Maybe they could hire a pediatric thoracic surgeon to run the cardiology units. After all, the heart is in the chest cavity, right? Close enough; it should be okay, right?
When families seek help in a specialized program, they assume they are being treated by experts with both training and experience. Why are children and adolescents with eating disorders not equally entitled?
I have only one answer for you: discrimination. It's discrimination that we find within the health care and mental health care system, rather than in the community. It's my colleagues in research, in academia, and in clinical care who simply do not like patients with eating disorders and who dismiss people like me as just bothersome.
Raise the issue of lack of training and get ready to be told that we should be glad eating disorders are even mentioned in training. Express the need for more services and get told there are enough already in place and that, after all, it's a rare disorder. Submit for research funding and, even if it's a study that's the first of its kind in looking at the long-term medical consequences of eating disorders, get pigeonholed off into a nutrition category, and then get rejected because there's no dietician as a co-investigator on the study.
Like many of my colleagues, I have just given up, not on eating disorder patients, but rather on the medical institutions that care little for our patients. We do what we can with what little we have. We advocate whenever we get the chance. Our institutions become interested only if and when we get some funding, but no matter the need or the funding, eating disorders rarely become identified in an institution as a priority program.
I'm here because I'm seeing patients become chronically ill because they have no access to respectful and appropriate services in a timely fashion. I'm tired of watching parents tolerate humiliation and discrimination in the hopes that their child might receive adequate care. Nobody should have to take their child home and watch her slowly starve to death because she's too sick for outpatient or residential care but is refused admission to hospital because they just simply don't like dealing with eating disorder patients and don't feel like admitting her.
This is the standard here in Canada, and it's not good enough.
What can the federal government do?
First, we need a national eating disorder registry so that we can track what happens to patients with eating disorders. At this point, there is no database that consistently tells us enough about what's happening, and if we don't measure the problem, it's as if the problem does not exist.
We need a nationally funded research strategy. The current funding strategies ensure that our colleagues will not share...[Technical Difficulty—Editor]...the pie with us. Crumbs are simply no longer enough. We need infrastructure funding to ensure that training and knowledge translation occur across the country and at all levels of training.
Evidence-based interventions exist that result in recovery rates of 60% to 70% in adolescents with severe eating disorders, yet there is nowhere in this country where families can consistently find these services in a timely fashion. In fact, in most of the country, these services are unavailable, meaning that these unlucky adolescents are sentenced to chronic illness and a shortened lifespan.
We need to act now as a nation.
Don't let this cycle of neglect repeat itself another time. Let this time be the last.
Thank you.
:
Thank you very much for the invitation to speak.
I am speaking on behalf of two of my roles. One is as a senior associate scientist at The Hospital for Sick Children, where I've carried out a 17-year program of research in the prevention of eating disorders. The other is as a psychologist and director of a provincial training program in the treatment of eating disorders that is funded by the Ministry of Health and Long-Term Care in Ontario.
My prevention research takes a lifespan approach and is heavily anchored in mental health promotion designed to foster healthy coping skills to fend off stressors that lead to eating disorders.
My early-to-mid research career has been supported by funding from the Ontario Mental Health Foundation, the Ontario Women's Health Council, CIHR knowledge translation and exchange, and a mid-career award from CIHR from the Institute of Gender and Health.
I have identified normative stressors of early adolescents that trigger eating problems in young females. This led to the development, implementation, and evaluation of prevention, trying to prevent symptoms that lead up to eating disorders in young females.
I subsequently trained local public health practitioners to facilitate prevention and conducted research on that. I'm the first to develop and research a school-based ecological prevention program designed to prevent eating disorders by involving male and female students, parents, teachers, school personnel, and public health.
In recognition of the late adolescent risk transition for eating disorders, I partnered with university-based practitioners from student health services to develop, implement, and evaluate a prevention program for university students using peer health educators as agents of change. I have translated the evidence-based strategies into an online curriculum for teachers and public health and I've matched them to the ministry of education's learning objectives to foster uptake by teachers in Ontario, Nova Scotia, and British Columbia.
Coordination of my prevention research and knowledge translation activities has been made possible by my active and volunteer membership on various coalitions, including the Ontario Healthy Schools Coalition, the Body Image Coalition of Peel, and the Canadian Association for School Health, and through my delivery of face-to-face community-based prevention workshops across the province of Ontario.
What is unique and innovative about the prevention research that I've been conducting is that it has been shown to enhance protective factors and decrease risk factors that are associated with both eating disorders and obesity. The prevention strategies also promote a sense of belonging and connectedness among the youth, which is protective against a myriad of mental health concerns and risky behaviours.
Since 2007, I have broadened my program of research in two ways: one, by bridging the field of eating disorders and obesity prevention to seek common ground to promote health; and two, by broadening the scope of my partnerships Canada-wide. I'm currently leading an innovative professional development training model geared towards front-line health promoters to help integrate mental health promotion into healthy weight messaging, as well as leading a knowledge mobilization strategy across Canada, entitled the national prevention strategy group on the prevention of obesity and eating disorders. All of this has been done on pilot funding from CIHR in the amount of $68,000.
The stop and go nature of this research funding has brought the program of research to a halt. The competing demands on public health practitioners and educators, whom I have trained, have drowned out the need for eating disorder prevention and early intervention.
Within the eating disorder prevention research field, targeted prevention, which is defined as interventions designed for high school students that are aimed at preventing early onset symptoms from escalating into eating disorders, has produced in the research field the largest intervention effects. That means they are the most effective, yet there is a total absence of targeted prevention for Canadian adolescents.
This gap in service, or death valley, coincides with the highest period of risk for the development of eating disorder symptoms and their associated mental health concerns. Up to 25% of Canadian children and youth experience significant mental health issues, and 50% of these problems appear before the age of 14 years. Eating disorders are no exception. They fall into the same category of prevalence and onset.
A third of youth at risk for substance abuse, most of whom are female, also report experiencing concurrent eating disorder symptoms. Yet we don't have any concurrent substance abuse and eating disorder programming in Canada, with the exception of Rideauwood Addiction and Family Services in Ottawa, who are reaching out to our field of eating disorders to learn how to treat eating disorders, so that small agency can jump-start the first-of-its-kind concurrent treatment and prevention of eating disorders and substance abuse.
It would appear that across Canada we have resources and policies in place that focus on upstream health promotion for the whole population. Attention is also being given to maternal health and early childhood well-being for the zero to six years age group, and there is attention being focused on adults. There is a large gap in intervention research and resources available, however, for the 6 to 19 year age group, or the 6 to 24 year age group.
In my role with the Ontario Community Outreach Program for Eating Disorders, with the generous support of the Ministry of Health and Long-Term Care in Ontario, my colleagues and I have created a provincial training program. The lifespan approach delivers training and supervision and evidence-based eating disorder treatment, and works to bridge partnerships across sectors.
With a small investment in 1994 in the amount of $100,000, we travelled the province of Ontario and identified champions who, with our support, showed an interest in specializing in the treatment of eating disorders and educating health care practitioners and educators to help out with identification and early intervention, where possible.
With further investment from the Ministry of Health in Ontario, we developed a first-of-its-kind provincial network of specialized eating disorder service providers.
Despite our best attempts, we can't keep up with the heavy demand for specialized treatment, and the increasing complexity and comorbid conditions that accompany eating disorders, including anxiety, depression, and substance abuse, to name a few. We need help from the mental health and addiction field.
My recommendations for your report are that we need a tracking system for eating disorders at the national level, including a registry. We need guidelines for the treatment and prevention of eating disorders, with subsections for child and adolescent eating disorders, adult eating disorders, and young adult transition-aged youth with eating disorders. With that we need a mechanism for knowledge translation of these guidelines across multiple disciplines and faculties.
We need a research chair in the prevention of eating disorders, and we need a research chair in the treatment of eating disorders, one for adults, and one for children and youth.
We need a strategy to reach out to primary care practitioners, including family doctors, who are the first point of contact for the public, yet they are the least knowledgeable and skilled to recognize eating disorders and offer timely early intervention.
Last, as a field, we need to leverage the trains in motion that are under way at the federal, provincial and territorial levels in the area of mental health, so that eating disorders are part of round table discussions on topics of stigma reduction, knowledge translation and capacity building, youth councils, caregiver guidelines, speaker training, and tool kits.
In short, we want to put a stop to the discrimination experienced by the field of eating disorders so that we can meet the needs of individuals and their families who are so desperate for our care.
Thank you.
:
It wasn't a book; it was a paper, just to be clear.
What we were arguing for is that patients with eating disorders are like other mental health patients, and sometimes, because of the illness, they're not capable of consenting to treatment, particularly when they're really young. In the case of voluntarily allowing a 12-year-old to refuse treatment, we have to really...[Technical Difficulty—Editor]...whether she really understands the ramifications of what she's doing.
The feminist perspective was to talk not just about this idea of informed consent and having the freedom to make decisions, but it was also about responsibility and what families owed each other in terms of taking care of each other. Most people live in families and make their decisions independent of their family.
Sometimes people refuse treatment because they can't afford child care. I have seen someone delay their treatment for an eating disorder because they didn't have enough child care over the Christmas holidays. They couldn't do the treatment because they had to be home for their children.
This paper was arguing not necessarily that treatment should always be forced, but that people live in families, and it's about doing no harm and making sure that families can keep their family members safe.
As with other mental health disorders, when they are no longer able to make rational decisions for themselves, we have to step in the same way we do for other disorders. It was done as a direct response to not stepping in when it was clear that people were so starved they were not thinking clearly and had at previous times chosen therapy or would have likely chosen treatment had they had all their capacities intact.
We should not allow those people to make decisions that end their life. We don't do that in schizophrenia. We don't do that in depression. We should not do that in eating disorders. I have colleagues who can't step in because there's nowhere to treat patients. There is no one that will take them into a locked unit. They don't have the same rights.
I would argue that I don't think 10-year-olds or 12-year-olds have the capacity to decide to die from an eating disorder. I take those things very seriously.
I think we've been overtaken by this panic around obesity. There is apparently an obesity epidemic. As far as I can tell, though, the rate of obesity in children is essentially a flat line. In fact, recent data from the United States suggests that in the younger groups of people, it's actually going down, not up. We keep acting like we have to do something to make sure kids aren't fat, but in our rush to do that, we are transmitting a kind of panic. What happens is that kids start to think that fat is bad, that being fat is bad.
You know, there are studies that show that kids would rather have a parent die of cancer, they'd rather lose an arm, they'd rather be hit by a truck, than be fat. Being fat is one of the most common reasons kids get bullied. Other kids feel justified when they hear from their teachers, their doctors, and their parents that obesity is such a horrible thing. They misunderstand that. We need to slow down and think about what we are actually transmitting.
I want to commend Hasan Hutchinson, who presented earlier on, for his public health work that has really worked to try to move the focus away from weight to healthy lifestyles. You can be healthy and fat. You can be unhealthy and thin. You cannot tell what someone's health status is just by one number, and yet that seems to be what we're transmitting. Recently there's been a push to look at physical education and physical literacy, but I have also heard suggestions that we should include people's BMI in their marks in gym class, as if kids have any control over that.
:
Thank you to the committee for inviting me to appear today.
My name is Jarrah Hodge and l'm a feminist blogger and activist from Vancouver. I run a multi-author feminist blog called Gender Focus.
One of our main goals is to analyze the ways in which women are represented in media. Through that l've been involved with Women, Action and the Media, Vancouver. WAM is a group of media makers, activists, academics and supporters working collaboratively to advance women's media participation and improve representation. Several people in that group shared their experiences and helped guide my research for today, so l have to send a big thanks to them.
I'm sure that you've heard from other witnesses about the serious issues we're discussing today and statistics such as eating disorders are among the 10 leading causes of disability among young women. We know that girls as young as five to women in their senior years experience eating disorders.
The situation women and girls are facing should not lead us to marginalize or forget about male patients; that can only lead to greater barriers for them to access treatment. The gender difference points to a real need for research and analysis that takes gender into account. l'm glad to see this committee taking on some of that work.
It is widely known that eating disorders arise from a complex interaction of biological, genetic, psychological, behavioural, and social factors.
One of the key social factors, and my focus for today, is the influence of media and advertising.
It's not hard to see that in popular media, thinness is rewarded while fatness is hidden, or when it is shown, deeply shamed. Today's thin ideal is thinner than past generations. It's thinner also than the general population today.
From a very young age girls learn that their body is for attracting instead of acting, which makes achieving the beauty ideal a crucial and lifelong project.
Research last year out of Pepperdine University examined girls ages three to five and found they had already internalized weight-based stereotypes. Girls were more likely to characterize the thinner figures as nice, smart, cute, neat, and quiet, while heavier figures were characterized as mean, stupid, friendless, sloppy, ugly, and loud. It's not a leap to see how these attitudes can turn inwards.
The Canadian Mental Health Association states that media glamourization of so-called ideal bodies coupled with the view that dieting is a normal activity can obscure a person's eating problems.
Over the past few decades, several studies have investigated the links between media images, women's body image, and eating disorders. in a meta-analysis of these studies, Shelly Grabe and her colleagues noted, "Research from prospective and longitudinal designs has identified body dissatisfaction as one of the most consistent and robust risk factors for eating disorders such as bulimia."
Grabe looked at 77 studies, including experimental studies in labs and correlational studies that compare women's real media consumption with their body image over time. They found an overall relationship between the amount of media consumed and higher eating disorder symptomatology, as well as other body image issues.
The evidence is compelling and points to some actions that can be taken. Before I get to that, I have to acknowledge three significant gaps in the research and in the way we talk and think about eating disorders generally.
The first is that only focusing on the thin ideal can prevent us from thinking about how the shame and policing of fatness plays in. Kalamity Hildebrandt of Fat Panic! Vancouver says that troubled eating behaviours aren't just about wanting the carrot of the thin ideal. She says there's also a stick in our culture and perpetuated in our media that polices against fatness. It says, “Look at what we do to fat people every day.”
Going back to the Pepperdine study, the fact that fat equalled friendless, ugly, mean, stupid, and loud is just as important as what thin means to girls. The study author, Jennifer Harriger, said, “A lot of the three-year-olds said to me, 'I hate her; she's fat.' Or, 'Her stomach is big; I don't want to be her.' That was really concerning to me, that children so young already had such strong beliefs about what it is to be overweight.”
When it comes to disordered eating, assumptions around weight and fatness can be devastating. Many hospital-based programs will refuse to admit patients based on their not being thin enough. There are hospitals that are forced to tell people that they have to get sicker before they can get treatment. Having weight as a deciding criterion shows an appallingly simplistic understanding of the physical effects of different eating disorders and how different factors factor in for different individuals.
We need to make sure we aren't reinforcing a society where behaviours considered disordered in thin people, such as extreme dieting and purging, are accepted and even encouraged in fat people.
Another gap I have to note here is Grabe's observation that there has been extreme neglect of women of colour in this research area. Moving forward that's something that needs to change. We need more and better research on how women of colour and first nations women experience eating disorders, how that relates to media messages, and to what extent there is or isn't access to culturally competent treatment in Canada.
Finally, we need more consideration of how LGBT people's experiences with eating disorders are shaped by their identities. For LGBT people, experiences of violence, bullying, and fear of rejection may be greater and can play into the risk for disordered eating. We also need to ask whether they face any additional barriers to treatment that straight or cis people may not.
One thing we do know from the research that has been done is that there are places we can start acting now. Most importantly, in terms of the areas that I'm looking at today, we need to introduce new, and expand existing, media literacy programs in our schools. Groesz, Levine and Martin define media literacy as education that raises awareness of media use, includes analysis of content and intentions, and promotes participant action in the form of media advocacy or activism.
I want to turn briefly to another meta-analysis, this time of the efficacy of media literacy programs. Szabo reviewed studies of programs from across Europe and North America and found that media literacy programs proved to be effective with the potential to reduce general and specific risk factors for eating disorders.
However, it's likely not enough to set aside a short period of time in a classroom one afternoon to deliver one-way information.
The same meta-study found that the most effective media literacy prevention programs were complex programs which contained elements that focused not solely on body image and problems related to eating habits, but also put emphasis on combatting social pressure and improved critical thinking in relation to societal standards and media messages. Yager and O'Dea confirm this finding. When done right, they found that programs with media literacy components were among the most successful at helping youth deal with body image and eating disorders.
I have more information on some specific programs that have been researched and shown to be effective, but I'm not going to have time to go into that right now. Maybe we can get into that in questions.
To conclude, l've only addressed one factor in eating disorders and their effect on girls and women, that being the influence of the media and culture on body image, but it is a significant factor and one that should not be left out of this study.
Although I suggested areas where we need more study, and focused on recommendations around media literacy education that would be aimed primarily at prevention, I also want to echo what has been said by many organizations and advocates working on eating disorder issues in Canada, which is that urgent changes are needed now.
As we saw in Nova Scotia last week, there are opportunities to make sure health care professionals are more sensitively trained to help people with eating disorders. Fundamentally, there are simply not enough in-patient spaces when and where people need them. Residential spaces are too costly for many. Financial means and geography should not be barriers to accessing treatment, nor should one-size-fits-all assessments like ruling people out based on weighing too much. We also need to address the serious lack of continuing care options available.
Thank you again to the committee for your time today. I look forward to your questions.
As the founder of NIED, the National Initiative for Eating Disorders, I would like to thank the committee for taking on this study of eating disorders among girls and women. I am here today to speak on behalf of hundreds and thousands of moms and dads, caregivers, and families just like ours.
As parents of a 28-year-old who has been suffering with anorexia and bulimia for over 13 years, my husband Len and I have done everything possible emotionally, physically, and financially to provide and help our daughter Amy, and it is never enough.
Our experiences of helplessness, frustration, and ultimately anger fuelled me to want to create awareness and take action regarding the bizarre and unforgiving world of eating disorders. The pain for sufferers and their families is insurmountable. The stress and strain on families is extreme, horrendous, and devastating.
There is no system in place to help our child. Yes, at 28, she is a child not only with an eating disorder, but she is also on a provincial disability support program because she cannot work. She is so paralyzed with anxiety and depression, and still expected to navigate the so-called system for help because of her age.
As parents we have been down the roughest, most horrid road ever imaginable, including using tough love at its worst and still knowing we have unconditional love for our daughter.
Siblings, grandparents, cousins, aunts, uncles, and friends are all affected by the suffering of our daughter. Fortunately, Len and I have held and supported each other through thick and thin. Living with this can and does kill relationships and marriages. It splits and isolates families, even forcing them into bankruptcy.
Eating disorders kill. They have the highest mortality rate of any mental disease. Yet, unlike depression, schizophrenia, anxiety, and mood disorders, eating disorders have no profile.
Yes, eating disorders are recognized as a mental disease, but they are seldom mentioned or acknowledged under the umbrella of mental illnesses.
We hear, read, and see all about mental health per se, but eating disorders are not on the mental health radar, programs, campaigns, or agendas.
In mid-July last year, Amy spent a week in a symptom interruption bed in Toronto to help stop the starving binge and purge behaviour. To give you an example, for her this could be both bingeing and purging 15 to 20 times a day and going out in the dead of winter in the middle of the night for binge food in a physical condition where she could have dropped dead at any time. She was consuming quantities of food beyond anyone's imagination.
When I was on the Hill in Ottawa in November last year, she let me know that she had spent $450 on food to eat and purge over three days. Multiple binges include 36 to 48 muffins, 6 to 10 large pizzas, slab cakes, litres of ice cream, mounds of chocolate, and I'm sure there was more to add to this. This happened daily for three days.
You can see how in this state she has resorted to shoplifting to feed her addiction. Unfortunately, when she had been caught in previous occasions and the police were called, she was handled unprofessionally, negligently, ridiculed, and almost thrown into an ambulance. These episodes led to a full-blown panic attack.
She is not a criminal. She is sick and there is nowhere to go for help. How is it possible for someone so sick to be turned away from treatment or not have access to treatment within a reasonable timeframe?
Back to the symptom interruption bed, it worked for her for a week, with Len and I sharing time during the day to be with her. Bullying and gossip arose from other patients, making her so uncomfortable that she left. Leaving a program midstream is extremely common with thousands like her.
Prior to hospitalization, Amy was living in a bachelor apartment with an eating disorder killing her on a daily basis. After she left the hospital, she was so vulnerable that we brought her back to live at home. This became permanent in October.
Like so many other mothers in this country, one of which was with us last week on the Hill, I have been running a 24/7 do-it-yourself treatment centre for her. There is nowhere for her to be or go other than to receive my full-time support.
I know and she knows that she should not have to deal with anxiety, binges, depression, mood fluctuations, while trying desperately and so hard every single minute to not give into the loud, noisy, forceful voices in her head that could lead to more binge behaviour.
If that's not enough, there are times when Len has had to take off work or leave work early to take over from me.
As you can see the impact extends far beyond the sufferer, and affects those directly involved and indirectly the greater community.
I started NIED two years ago, and have been operating on zero funding, to create awareness of eating disorder sufferers and their families, and to ultimately change and improve the system across Canada. I am extremely fortunate and grateful for the volunteers who have supported me, and especially the doctors who, despite facing their own challenges within the eating disorder system, have gone above and beyond to support NIED. These include Dr. Blake Woodside, Dr. Gail McVey, Dr. Leora Pinhas, Dr. Mark Norris, Dr. Chuck Emmrys, as well as the numerous MPs and MPPs who have helped to get NIED to where we are today to start the wheels of change.
I totally support the recommendations—
We totally support the recommendations put forward by the doctors. As parents we want access to treatment by properly trained professionals in a timely manner.
Creation of group homes, places of safety the same as provided for substance abuse, alcoholism, and drug abuse; there is absolutely nothing like this for eating disorder sufferers.
When it comes to coverage of treatment, medical insurance companies need to step up to the plate and start covering expenses necessary to help all these sufferers and their families. How can $500 on an employee's benefit plan cover anything? Two sessions with a psychologist and it is done. It's almost better to not even start rather than opening a can of worms and leaving it to fester.
Coverage for treatment by psychotherapists, nurse practitioners, and nutritionists who have been helping and working with eating disorder sufferers and whose services are not covered by, in Ontario, OHIP or private insurance companies.
Doctors, GPs, pediatricians, social workers, teachers, police, court staff, any profession dealing on the front lines needs mandatory courses specially focused on eating disorders included in their training.
In closing, allow me to share Amy's words with you. She sent this to my phone on Saturday night:
“You keep saying this time last year I was dying, and although I'm not in the same immediate danger, my head is as ever, if not more, in the deepest darkest rabbit hole. I feel impending doom, the same impending doom I felt when I was alone at my lowest weight and bingeing purging 24/7. It's the sense of profound fear that I'm not going to make it out of this eating disorder. I'm not going to be the one-third that recovers. I may even be in the 20% that die.
“You are changing the ED world in Canada, and perhaps the only reason I ever existed was for you to create colossal change, but what about me now? It will be years before any such dream treatment facility will be brought to fruition in Canada. We all know the system here is heartless and virtually useless. They can check on my weight, and send me back into this world, and then I'm right back where I started as a little girl, scared of life and equally scared of death, scared of the unknown, and aging, and loss, and abandonment.
“There is nowhere to treat chronic eating disorders. There is nowhere to go in the emergency. There are so few who understand. I still wake up dreading the day. How will I get through it? What will I eat or not eat? How will I control myself from eating trigger foods? I can't focus on anything. I can barely read, or write, or find joy in anything because I'm constantly paralyzed with fear and anxiety, consumed with indecision and yearning to be numb.”
As a mom, here I am on behalf of NIED, advocating to make changes and bring public awareness for eating disorders, just as Terry Fox and his mom did for cancer.
Thank you.
:
In the very beginning, we only found out that Amy was actually throwing away her school lunch when a friend came to tell us. She was 16. I guess at that point she was on the cusp of being admitted into hospital or not.
I think initially we were so completely naive and green and completely shocked. We have two other children as well. I remember my husband and me lying in bed just crying on each other's shoulders and asking, what did we do wrong? What went wrong? Here are two other kids who are fine and what happened to Amy? What went wrong with her?
I remember taking her to her pediatrician. We were just thrown into the deep end and we were numbed ourselves. We were completely shocked. I remember my husband also charging downtown, actually to where Merryl Bear works, to NEDIC. He googled—13 years ago, I suppose, Google was something new—and he found NEDIC. He came home with pages and pages and pages of stuff. We just sat on the bed and didn't know where to begin. I remember taking her to the pediatrician and writing him notes before we got there so that when he examined her, he knew where we were coming from as parents. I think it took a while for him to actually say to Amy that she had an eating disorder. It even took Amy about four years until she could actually say the word “anorexia”, because she started off with anorexia.
After that, it was about getting a referral. I remember getting a referral to North York General Hospital. I have no idea how long it took to get the actual appointment. I can't remember that, but I know she was really on the edge. She would keep herself so on the edge of not being hospitalized that we never had to get her in at 16 or 18. It happened much later on in her life.
I think the roadblocks are around the help and where to go, looking up people's names and psychologists, and you have to wait and you have to pay. You know, after two sessions we had reached the maximum level at my husband's office benefits anyway. There's also the fact that Amy is 28 and she's not covered under any benefits from my husband's office, because she's over the age of 25 and she's not a student. On her Ontario disability support program, she doesn't have enough money even for monthly living. We're supporting her like crazy.
As far as the roadblocks are concerned, I think it was about just not getting enough help, not having access to the help, and the whole process of a doctor having to refer you and then you wait for the assessment. The assessment comes months after the appointment. It's months before you get into the hospital program. If you get a call to come into the hospital...Amy had such a panic and anxiety attack about it. She couldn't accept the time when the phone calls came. You have to decide literally on the phone, while talking to the secretary. You either accept during the phone call or you don't come and it will go on to the next person on the waiting list.
:
Thank you again to both of you for coming today.
I want to really thank you, Ms. Preskow, for your final couple of comments. You've sort of encapsulated my questioning.
Obviously we are decades behind here. We heard in earlier testimony by Dr. Katzman that the prevalence of eating disorders in Canada is about 1.5% of our population, which therefore means we are looking at 525,000 people in Canada. She was saying that 10,000 people have cancer, 25,000 people have diabetes, and as you know, there's a greater awareness and obviously services and programs and all of the things we've been discussing and heard from previous witnesses about.
Some 25 or 26 years ago, Canada was the first country to stand up and enact legislation about second-hand smoke. That has made a huge difference, because right now in television programs, etc., there's not as much prevalence of smoking.
I want to direct my questions to Jarrah Hodge, because I want to look at the greater societal picture, and I'm also a sociologist from UBC.
Given your experience in blogging and what you hear anecdotally from people, what cultural or legislative changes—and you did touch upon that at the tail-end of your testimony—do you think would cause such a change as we have seen, such as in the awareness that we have of cancer now, the reduction of actors smoking on TV, in all kinds of areas? How can we get to that point from where we are now? We are obviously not yet there with eating disorders.
:
Ms. Hodge, I'm sorry, but may I just interrupt for a second. I have very limited time and I want very dearly to have you and Ms. Preskow submit any additional information that you have for us. I would like to address these questions to you, and please feel free to write to the committee, because we will include that testimony.
I want to spend my time, just because we have very little of it, asking some additional questions, if that's okay with you. I absolutely agree with you that we need to do more with the media, etc., but that's such a vague notion. I think the reason we are successful with cigarette smoking is that we had cigarette companies to work with and to target, etc. The media is this big vague thing out there.
Ms. Preskow, you said you do not come from an obese family, so you never talked about dieting. You have to ask, where did Amy get these concepts? How did that turn into her eating disorder? What is the link between media and our society? How then did it become a disorder for her?
I think that given how huge this issue is, 500,000 people, and the fact that it's so hidden, we have to ask ourselves these bigger questions. Obviously, it has a huge impact not just on families such as yours, Ms. Preskow, but also on society in that we've lost so much from these people who can contribute.
Please give us those answers.
Thank you very much.