Status of Women Committee on Feb. 12th, 2014

[The Chair, NDP, Hélène LeBlanc]

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.

[Noelle Martin, Professor, Brescia University College, Western University, and President, Registered Dietitian Services]

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.

[The Chair, NDP, Hélène LeBlanc]

Thank you, very much.

And now, for 10 minutes, I will ask Mrs. Anderson to speak.

[Joanna Anderson, Executive Director, Sheena's Place]

Thanks very much.

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.

[The Chair, NDP, Hélène LeBlanc]

Thank you both very much for your testimony.

Now we'll move to the first round of questioning.

Ms. Truppe, you have seven minutes, please.

[Susan Truppe, Conservative, London North Centre, ON]

Thank you, Madam Chair.

Thank you both for your comments and presentation.

Ms. Martin, thank you for being here. I know Brescia very well. I'm very proud to have Canada's only women's university in my riding of London North Centre. I know your principal thinks very highly of the work you've done with eating disorders as well.

[Noelle Martin]

Thank you.

[Susan Truppe, Conservative, London North Centre, ON]

I think you mentioned that you have been interested in eating disorders for about 20 years. In that 20 years, did you learn any best practices?

[Noelle Martin]

In the beginning my interest was sparked by the media, specifically through exposure to a TV show when I was young. I remember wondering what was going on? How is this out there?

I immediately talked to my parents about it. I'm an only child, and we talk a lot at home. My parents were great about helping me to start being educated in that area. That is where my interest started to grow. I would say my research in the area really started then.

I think I learned the most in the beginning that there are a lot of stigmas and assumptions. What was interesting to me when I started in the practical area of working with individuals with eating disorders was that my eyes were opened to the reality compared to what the stigma was.

In looking at best practices, I think one of the biggest things is that we cannot put anyone who has an eating disorder or seems at risk for an eating disorder in a box. We have to remember that some of the assumptions we've come up with in society may be true, just like all stereotypes, but we need to treat each person as an individual and be open to their story.

[Susan Truppe, Conservative, London North Centre, ON]

Thank you.

While you're at Brescia, and since it's all girls there, do you experience eating disorder issues there with any of the girls?

[Noelle Martin]

Absolutely. I counsel university students as well as being a professor of university students. Both in the classroom as well as in my counselling area, we see a lot of individuals with eating disorders. It's interesting to note how many of them are enrolled in the food nutrition program because of the interest there in health and in food and in nutrition, to the point of it sometimes being an obsession.

As Ms. Anderson was saying, it's the first thing individuals with eating disorders think of when they wake up in the morning. It's a constant torture, so there is perhaps the idea that if they can learn more about this, maybe that's a way they can break free.

So, yes, when we're working with a school of all women and girls, we do see a high percentage of eating disorders.

[Susan Truppe, Conservative, London North Centre, ON]

How did you help them then? We've often heard that the family is obviously very involved when there's an issue. A lot of those girls don't have family there because they're from other parts of the country, or even out of country. How would you help them? Did you also maybe develop an awareness campaign within Brescia or Western so the girls who are not experiencing a problem at this point are aware of the seriousness of the disease so they won't have it?

[Noelle Martin]

Absolutely.

[Susan Truppe, Conservative, London North Centre, ON]

Could you tell us a bit about that?

[Noelle Martin]

Sure.

There are a few areas. One is one-on-one counselling, paid for by the University Students' Council, for individuals to meet with me as well as my colleague. The access is open, so they can come every week and speak with us for half an hour or an hour about what's been going on. The consistent accountability is a piece that is really helpful, and that's year-round, not just during school. It can be via phone, if they go home in the summer, for example, or we'll put them in touch with a dietitian in their area if they prefer.

In terms of family support, at the right time for the client we definitely encourage mum or dad or sister or brother or spouse or whoever it might be to join us in meetings. As a practitioner, I think of myself as a bit of a facilitator in those situations. Sometimes there are conversations that are really hard to have in the home, so those conversations can be facilitated or started in more of that clinician's environment, but in a safe setting for the client who's working with the eating disorder.

I also work closely with Hope's Garden. We've set up awareness programs as well as group programs right on the university campus, so there's another outlet for students.

[Susan Truppe, Conservative, London North Centre, ON]

Thanks. I was just going to ask you about Hope's Garden. I think you were executive director for quite a few years.

[Noelle Martin]

I was chair of the board, yes.

[Susan Truppe, Conservative, London North Centre, ON]

Were there any programs there offered to individuals struggling with disorders that you'd like to share with us? What was maybe the best program that you've had that you've found was really helpful?

[Noelle Martin]

The program that we have at the university has been very impactful, absolutely, because we're right on campus of the university, and we've had financial partnership with the USC for that. So that's been great.

Two other really come to mind, and one would be art therapy. We had the opportunity to have an art therapist who was one of our strong volunteers, and her program was very strong and still is.

The other would be would be the friends and family group, because there's a little bit of a hole there. As we start to see a little bit more of an attention to eating disorders, we're seeing that there's a little bit more access. Certainly we have far to go for those who have eating disorders, but we're not seeing the support for family and friends. A lot of times parents, they don't know what to say. They feel that they have lost their son or daughter and they don't know how to handle it, so there is hope for them in coming and talking with other families and friends.

[Susan Truppe, Conservative, London North Centre, ON]

Ms. Anderson, just very quickly, I think you said 30% was binge eating and 17% or something was anorexia. Was that right? I found that high.

[Joanna Anderson]

Of our clients.

[Susan Truppe, Conservative, London North Centre, ON]

Sorry?

[Joanna Anderson]

No. Those are of our clients at Sheena's Place, not in the general population.

[Susan Truppe, Conservative, London North Centre, ON]

Right, I understand that. I was just surprised that the binge eating was higher than the anorexia. I haven't really heard that yet.

Is my time up now?

[The Chair, NDP, Hélène LeBlanc]

Yes.