Thank you very much for letting us present today.
I am a volunteer for the NIED organization. I'm here with my associate, Lauren Jawno, who is a founding member of NIED and a recovered eating disorder patient. She also works with people with eating disorders.
Who is NIED? NIED is a for-purpose, not-for-profit coalition of parents and children challenged by eating disorders, sufferers, health care professionals, and counsellors. NIED's aim is to increase the awareness and education of eating disorders to promote change in the understanding, treatment, and funding of the disease in Canada.
What does eating disorders mean? First of all, it's a disease that has one of the highest mortality rates of mental illness in the world, but it can be prevented and cured, which makes it unique. It is prevalent in young girls and women, but is expanding its presence to citizens from all walks of life—recently a seven-year-old boy who was admitted to Sick Children's hospital in Toronto with eating disorders, all the way up to an 86-year-old woman who'd had bulimia for over 30 years.
As to the cause, the blunt reality is that we don't know. There is lots of research but there is no true cause. What we do know, and it's more important than anything else, is that it can be prevented if it's treated at an early stage.
The number of eating disorder cases in this country continues to increase. There are very few data points on eating disorders. One of the more recent ones, and this was done in 2006, may be representative. Researchers in Edmonton studied 700 children in grades 5 to 7. Of these children, 15% were purging or over-exercising, 16% were binge eating, and 19% restricted themselves to one meal or less per day—very disturbing facts.
How is it currently being treated? The only thing I can say is not well. The number of family doctors trained in treating eating disorders in Canada is almost nil. The community health care agencies lack both the time and the funding for training in eating disorders, and are generally overwhelmed by mental health referrals. There's also a huge shortage of psychiatrists who specialize in this. Currently there are 4,100 psychiatrists in Canada, of which 12 specialize in eating disorders. Of these 12, only a handful specialize in treating children and adolescents, where it's most prevalent. However, there are evidence-based programs that have been developed by researchers and doctors over the years that work. They've been proven in test studies to work; however, there have been no funds and no initiatives to develop them among our health care system.
What do we need? In order to really beat this disease, and many doctors and researchers we talk to believe it can be done, we have to develop an infrastructure that can build the capacity for the delivery of timely, age appropriate, evidence-based treatment and support services. These services have to span prevention, specialized outpatient treatment, intensive treatment, and residential services. We have to educate and train. We need to train family doctors to screen for eating disorders, to have the language to talk to our children about nutrition, body image, and eating disorder thoughts, urges, and symptoms. We need to send more trained mental health nurses and health care counsellors into our high schools to help young people who are struggling with these issues.
How do we get there? We know that this disease is pervasive in Canada. There's no data that tells us how many people have it. However, the NIED phones ring off the hook. We're all volunteers. We fund it with our own money. People and families are looking for help. They're looking for help for their children, their loved ones, because so many of them end up dying as a result of this disease.
Provincial health care systems typically need hard data to be able to allocate their scarce resources to this disease. Provincial health care systems inadvertently have developed their charting systems to hide the data on ED. That's not on purpose; it's just the way it has developed. For example, there's no charting category for eating disorders in any of the doctors' charts, which ultimately are being used for the data on many of the health care decisions that hospitals and health care administrations have to deal with.