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.
