Evidence of meeting #11 for Status of Women in the 41st Parliament, 2nd Session. (The original version is on Parliament’s site, as are the minutes.) The winning word was disorders.
A recording is available from Parliament.
Conservative
Tilly O'Neill-Gordon Conservative Miramichi, NB
I'm also wondering how perceptions have changed. What influences, positive or negative, have these perceptions had on the fight against eating disorders? Are more doctors aware of eating disorders? Is there more training going into this?
February 10th, 2014 / 4:25 p.m.
Community Health Systems Resource Group, Ontario Community Outreach Program for Eating Disorders, The Hospital for Sick Children
We've had a similar story here in Ontario with investment from the Ontario Ministry of Health and Long-Term Care.
We have a training program that has allowed us to fund and have available resources. Experts in the area of eating disorders will travel to different communities and try to do training with front-line workers. We would certainly like to see that replicated in other provinces across Canada. We would like to look at opportunities. It's been going now for about 20 years, so we have an opportunity to look at what has worked well and what some of the challenges are. We would appreciate having the opportunity to share that across Canada.
NDP
The Chair NDP Hélène LeBlanc
Thank you very much.
Mrs. Sellah, you have time for one question, if you wish.
NDP
Djaouida Sellah NDP Saint-Bruno—Saint-Hubert, QC
Yes, Madam Chair.
First, I would like to thank Dr. Pinhas and Dr. McVey for their testimony. Listening to them, I understand that, unfortunately, the situation regarding care for eating disorders is dire. With regard to professional resources, we know that only two out of all psychiatrists treat these disorders. There is a lack of infrastructure; only one or two centres deal with these disorders. There is also a lack of databases and funded research. We got the message loud and clear.
Dr. Pinhas, when you began your presentation, you said that there is no access to emergency care in Canada, with the exception of one province. Could you tell us in which province people have access to this emergency care?
I would also like to come back to the work you do. I know that you studied the programs in public schools that promote a healthy lifestyle. What is surprising is that you show that these programs have had impacts that are contrary to the objectives targeted. You explained that children who follow these programs had a tendency to lose weight and suffer from eating disorders. How do you explain the harmful consequences of these types of programs? Is it because the teachers do not have the knowledge or because the disorders that these programs can cause are not well known?
Department of Psychiatry, The Hospital for Sick Children
First of all, I'm confused about the question regarding emergency services. I don't recall saying that in my introduction.
Community Health Systems Resource Group, Ontario Community Outreach Program for Eating Disorders, The Hospital for Sick Children
It was 12 psychiatrists.
Department of Psychiatry, The Hospital for Sick Children
It was 12 psychiatrists in the country, not two psychiatrists, as well. There's a correction there.
Community Health Systems Resource Group, Ontario Community Outreach Program for Eating Disorders, The Hospital for Sick Children
We are talking about 12 psychiatrists.
NDP
Community Health Systems Resource Group, Ontario Community Outreach Program for Eating Disorders, The Hospital for Sick Children
I would like to answer the question regarding raising awareness around healthy weights and healthy life-style issues. I want to applaud the initiatives at the FPT level. We certainly share with our colleagues the need to look at sedentary behaviours and the need for healthy eating among our children and youth in Canada.
I want to take this opportunity to applaud Health Canada, in particular, Hasan Hutchinson's department and initiatives. He has played a big leadership role across Canada in looking at how we integrate obesity and eating disorders so when we're doing healthy weight messaging we're trying not to do harm.
Where I think there is room for improvement in our schools and in our different levels of community is that professionals and adult influencers in general need to be sensitized about their own weight bias and their own attitudes around weight and shape. They need to understand that sometimes it can be transmitted to children in a negative way. I've certainly moved my prevention research from working with children to working with the adults themselves, because there's a lot of room for improvement in terms of sensitivity training with the adults so they can learn how in an objective way to help children develop healthy lifestyles.
NDP
The Chair NDP Hélène LeBlanc
Thank you very much.
Dr. McVey and Dr. Pinhas, thank you very much for your testimony. It was very enlightening.
We will now suspend the meeting to prepare for our second hour.
Conservative
Joan Crockatt Conservative Calgary Centre, AB
May I just say thank you as well to both doctors. I hope that you haven't lost heart and that you will be encouraged by the fact that we're doing this study and attempting to shine a light on the subject.
I also want to commend the only male on our panel. Terence Young, the MP for Oakville, was the one who suggested that we do this study.
I'm happy that we're here and that we had an opportunity to hear you.
Community Health Systems Resource Group, Ontario Community Outreach Program for Eating Disorders, The Hospital for Sick Children
Thank you.
NDP
The Chair NDP Hélène LeBlanc
We will now resume the meeting.
We now welcome Ms. Jarrah Hodge.
I would ask you to give a 10-minute presentation.
Jarrah Hodge Women, Action and the Media
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.
NDP
The Chair NDP Hélène LeBlanc
Thank you very much.
Ms. Preskow, the floor is yours. You have 10 minutes.
Wendy Preskow Founder and Chief Advocate, National Initiative for Eating Disorders
Hello everybody.
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—
NDP
The Chair NDP Hélène LeBlanc
Mrs. Preskow, please slow down a little bit to make sure the translators get all your very good recommendations. I'll let you continue, but just slow down your speech. Thank you.
Founder and Chief Advocate, National Initiative for Eating Disorders
Okay.
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.
NDP
The Chair NDP Hélène LeBlanc
Ms. Preskow, thank you very much for your testimony.
I will now give the floor to Ms. Ambler for seven minutes.
Conservative
Stella Ambler Conservative Mississauga South, ON
Thank you both for being here today.
Wendy, we met last week. It's nice to see you again. Thank you for coming back to speak to us.
I think we all heard about your frustration and your anger and how helpless you felt. We thank you for telling us about it.
I'd like to know how you navigated the system at the beginning and over the past 12 years for your daughter on her behalf. What roadblocks did you encounter and what recommendations would you make to fix those problems?
Founder and Chief Advocate, National Initiative for Eating Disorders
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.