Madam Chair and committee members, thank you for the opportunity to present to you on eating disorders. I feel fortunate to have worked in partnership with many of the people who have previously presented to this committee on Canadian eating disorder services advocacy.
I would like to share with you my personal observations on the harmful effects that eating disorders can have on your child, your entire family, and society in general.
I will provide a list of recommendations concerning a number of urgently needed eating disorder services. This list has been formed over the 24 years that I have been involved as an advocate for those suffering from eating disorders. I have had the privilege of meeting many family members and their children suffering from eating disorders from across Canada. I have met many of them at conferences where I have spoken, provincially, nationally, and internationally, and at community forums for clinicians, and I have often lectured to fourth-year mental health nurses.
Eating disorders are cloaked in the three S's: shame, secrecy, and silence. This condition is made worse by its debilitating, deteriorating, and potentially deadly effect on those who suffer. Eating disorders affect those from many cultures and socio-economic backgrounds. I am alarmed, but sadly not surprised, by the intensive research results here in Canada by Dr. Leora Pinhas that indicate that children as young as five years of age are developing eating disorders.
Anorexia has the highest mortality rate of any psychiatric illness. It is estimated that 10% of the individuals with anorexia will die within 10 years of the onset of the eating disorder.
On August 27—I have a picture of our daughter Alyssa—our family's lives changed forever. Our daughter Alyssa passed away at 24 years of age after a 12-year battle with her eating disorder. Alyssa's eating disorder and her death continue today to have serious consequences for our family. Countless other families all across Canada also continue to feel the effects of losing a family member to an eating disorder.
I am very saddened that today, after 24 years as an advocate, we still have many families desperately searching for timely, specialized eating disorder programming for their children. Long waiting lists exist from as much as six months to a year and a half for many who suffer. As you have already heard from Dr. Woodside, early specialized eating disorder treatment intervention, as with many other illnesses, is often one of the most important keys to a successful recovery.
The situation is often worse for many who live in rural and northern communities. Mental health workers in these areas service several communities spread out over a wide area and often do not have expertise in treating eating disorders. Critical eating disorder services are often only offered in large urban cities. It is extremely difficult for many to leave their homes and family for intensive eating disorder treatment in a city where they know nobody and often feel isolated and depressed. Parents often can't leave their jobs to provide emotional support during their child's treatment. Some clients leave treatment early due to loneliness and isolation from their families.
Many times families know instinctively that their child is in extreme physical, mental, and emotional danger. Their child can't wait for treatment, and they will search frantically for specialized private eating disorder therapists or programs, or will send their child out of province and even out of country for treatment. Many parents also have to pick up living expenses for their children, as many who suffer from eating disorders are unable to work.
As parents, we had no choice but to seek private therapy for Alyssa. At $120 an hour—now this is back in the 1990s; it's up to about $150 or $160 now—three times a week for three-hour sessions for almost 12 years, therapy financially impacted our whole family.
I am outraged that the issue of long waiting lists for urgently needed eating disorder treatment still occurs across our country. To me, there is something inherently wrong with a public health care system that often only becomes available when someone is on death's door.
We would never think of making patients suffering from cancer, diabetes, or heart disease wait that long for urgent treatment. Yet, eating disorders can be just as deadly, as many suffer continually from electrolyte imbalances that can lead to cardiac arrest, kidney failure, and even death. We're talking about saving people's lives here, improving their quality of life, and helping them to begin treatment to feel well again.
Under Canada's Health Act, two of the five principles, universality and accessibility, indicate that all insured residents are entitled to the same level of health care and all insured persons have reasonable access to health care facilities. These principles do not exist for many suffering from eating disorders all across Canada.
In addition, many eating disorder clients also have co-occurring illnesses, such as obsessive compulsive disorder, anxiety disorder, severe depression, early onset of osteoporosis, severe dental problems, and drug addiction. They often engage in self-harm, such as burning, cutting, and even attempting or succeeding at suicide.
In the case of drug addiction, sometimes as parents we feel caught in the middle as many service providers will not take your child into treatment until the drug addiction or eating disorder is cured first. Both are dangerous health issues and I feel strongly that more programs need to be created that can treat concurrent illnesses at the same time.
As a society we also need to take a critical look at negative media messaging, often fuelled by the very powerful multi-billion dollar diet industry that consistently bombards us with the promise that being thin will bring you great health, happiness, sexiness, and acceptance by society. The pursuit of perfection and unachievable societal standards of beauty are causing irreparable physical, mental, emotional, spiritual damage, and even death.
As a parent and advocate I am often troubled by the fact that many doctors do not know or do not have much training in the treatment of eating disorders. I ask myself, “Why are many doctors often assessing only a person's body mass index to determine their overall health and whether there is a presence of an eating disorder?” Especially when the World Health Organization, in 1946, defined health as a state of complete physical, mental, and social well-being, and not merely the absence of disease or infirmity.
Consistent with this definition, interventions aimed at addressing any health concerns should be constructed from a holistic perspective, where equal consideration is given to social, mental, emotional, and physical aspects of health. To me one of the most serious omissions is that, provincially and federally, governments across our country are not tracking the incidence with which this deadly illness occurs. Experts that have already testified before you estimate that over a half a million Canadians suffer from eating disorders.
I believe that death statistics from eating disorders are not properly recorded. Often, the cause of death is listed as cardiac or kidney failure, and the contributing cause of death is listed as bulimia, anorexia, or often it's not even filled out. I know without a doubt that Alyssa's 12-year battle with an eating disorder was the cause of her death and the contributing cause to her death was cardiac pulmonary embolism, brought on directly by her eating disorder.
Dr. Blake Woodside testified that:
About 60% of my patients have chronic complex post-traumatic stress disorder. They've been sexually or physically abused. They will work for eight or ten years to recover from that...
Our daughter was sexually abused on several occasions and it wasn't until after her death that we as parents were able to find out the specific details of what had happened to her as she had declared the sexual abuse as an adult to her doctor and therapist. I feel strongly that, had we known the specific details, we may have had an opportunity to have brought closure to Alyssa on what happened and had an opportunity to support her in any criminal charges should she wished to have laid them, and maybe, yes maybe, even had a chance to save her life.
I believed with everything in my heart that we could have saved Alyssa from what she referred to as the monster within. But we were wrong. We can't bring Alyssa and all the others back who have died from eating disorders in Canada and indeed around the world.
The establishment of your status of women committee on eating disorders has given me so much hope that we can work together in partnership to save lives from this horrible and lethal illness. While there has been progress in eating disorder treatment over my 24 years as an advocate, it has been at a very slow and painful pace for those who suffer and their families.
Now I know I don’t have time to read all my recommendations—and I hope those have been forwarded to the committee already—but there’s one I must read: emergency and ICU training. We must ensure intensive training is required for clinicians who treat gravely ill eating disorder clients. They must have ongoing training to keep up to date on best practices and changes in treatment delivery. I believe, from our daughter's experience, that it is critical that all ICU staff be educated about re-nourishment and re-feeding syndrome and the essential need to re-nourish clients very, very slowly and monitor very closely to avoid electrolyte imbalances, seizures, cardiac arrhythmia, and even death.
In addition, we must look at different therapies to provide treatment for those who have suffered from post-traumatic stress disorder and abuse—verbal, physical, emotional, and sexual.