Status of Women Committee on Feb. 10th, 2014

[The Chair, NDP, Hélène LeBlanc]

I would like to welcome you to the 11th meeting of the Standing Committee on the Status of Women. Today, we are continuing our study on eating disorders among girls and women.

During the first hour, we welcome Dr. Leora Pinhas and Dr. Gail McVey. They will each give a presentation of approximately 10 minutes, and then we will go to questions.

Ladies, once again, welcome to our committee.

[Dr. Leora Pinhas, Department of Psychiatry, The Hospital for Sick Children]

Thank you. I would like to thank you for inviting us.

I'm going to strive to be efficient and concise. I had an opportunity to review the transcripts from the previous presenters. I'm going to endeavour not to repeat their points, although I did agree with the majority of them. Because you'll be seeing a number of witnesses who are going to present you with numbers and a kind of state of the union, I've decided that I would opt out and give you a first-hand account, but of course, I have to start with a few numbers just to contextualize what I'm going to talk about.

Yesterday I did a search on the CIHR web page to look at the number of dollars that have been spent on operating grants for eating disorders in the last five years. I came up with a number of $7.5 million, which sounds like a lot, but then I keyed in “schizophrenia” and I came up with a total of $86 million. That's more than a factor of 10 in terms of allocation of money. Eating disorders are as severe and more prevalent than schizophrenia, which is why I chose schizophrenia as a comparison. So it's $7.5 million versus $86 million.

There are other numbers I want to highlight.

The rate of obesity in adolescent girls in Canada is 9%. That's Stats Canada data. The rate of eating disorders is estimated to be around 18%. The rate of new cases of restricted eating disorders in children between the ages of five and twelve is four times the rate of new cases of type II diabetes in the same population.

In Canada we have no intensive specialized mental health programs that would specifically treat children with eating disorders. When it comes to adolescents, that is also true in at least three of our provinces and all of our territories where no intensive specialized treatment exists.

Psychiatry residents are more likely to be exposed to negative stereotypes of eating disorders and to be discouraged from treating patients with eating disorders than they are to receive appropriate training and education on eating disorders.

I am here today as one of the senior psychiatric experts in child and adolescent psychiatry, and that is not a good thing. I am still too early in my career to be in a senior position; however, I'm senior because there is no one ahead of me. I started the first-aid treatment program for adolescents with eating disorders while I was still in training as a fellow. Since then I have gone on to help develop two...[Technical Difficulty—Editor]...programs, a second day treatment program, in-patient programming, outpatient programming. I was the founding member of the Eating Disorder Association of Canada and its first president, all because there was no one else doing the work, no one else to fill in the gaps.

A couple of years ago I gave up applying to CIHR for research grants. I've also given up on the idea of academic promotion. I will likely always remain an assistant professor, and more recently I left a full-time position at an academic children's hospital that houses our local specialized eating disorder services. This is not because my work is subpar—I have won awards throughout my career for my work—it's because the barriers are too great and I'm tired of trying to get around them.

Now if this was only my story, I would be wasting your time. The problem is that this is a story of almost every child psychiatrist in Canada who has attempted to work in the field of eating disorders.

The reason there are no psychiatrists more senior than me is that after about 10 years of hitting their heads against the wall—it does seem to be a 10-year cycle—those who came before my generation burned out and went elsewhere.

Now I am witness to the colleagues of my generation as they leave the field. Across the country senior child psychiatrist experts are falling away, leaving...[Technical Difficulty-—Editor]...care programs with vacancies that are filled by new graduates with little training and less experience, or are filled by pediatricians, or remain empty. This has occurred in some fashion in all but one of the seven provinces that could have tertiary or specialized intensive programs for treating eating disorders in adolescents.

[The Chair, NDP, Hélène LeBlanc]

Dr. Pinhas, could you slow down a little? The sound is not that great and the interpreters are having a hard time making sure that we get all of your very important testimony.

Thank you very much, Dr. Pinhas.

[Dr. Leora Pinhas]

Thank you.

I'm just going to back up here for a minute.

Across the country, senior top psychiatry experts are falling away, leaving tertiary care programs with vacancies that are filled by new graduates with little training and less experience, filled by pediatricians, or left vacant. This has occurred in some fashion in all but one of the seven provinces that currently have tertiary or specialized intensive programs to treat adolescents with eating disorders.

Would we accept this situation for any other life-threatening illness? What if all the senior pediatric cardiologists left? Would this not be a crisis? Would it be okay if the cardiology programs were just hiring new graduates to run their programs even if they had little or no training? Would it be okay if they just hired an adult cardiologist who had no training in working with children? Maybe they could hire a pediatric thoracic surgeon to run the cardiology units. After all, the heart is in the chest cavity, right? Close enough; it should be okay, right?

When families seek help in a specialized program, they assume they are being treated by experts with both training and experience. Why are children and adolescents with eating disorders not equally entitled?

I have only one answer for you: discrimination. It's discrimination that we find within the health care and mental health care system, rather than in the community. It's my colleagues in research, in academia, and in clinical care who simply do not like patients with eating disorders and who dismiss people like me as just bothersome.

Raise the issue of lack of training and get ready to be told that we should be glad eating disorders are even mentioned in training. Express the need for more services and get told there are enough already in place and that, after all, it's a rare disorder. Submit for research funding and, even if it's a study that's the first of its kind in looking at the long-term medical consequences of eating disorders, get pigeonholed off into a nutrition category, and then get rejected because there's no dietician as a co-investigator on the study.

Like many of my colleagues, I have just given up, not on eating disorder patients, but rather on the medical institutions that care little for our patients. We do what we can with what little we have. We advocate whenever we get the chance. Our institutions become interested only if and when we get some funding, but no matter the need or the funding, eating disorders rarely become identified in an institution as a priority program.

I'm here because I'm seeing patients become chronically ill because they have no access to respectful and appropriate services in a timely fashion. I'm tired of watching parents tolerate humiliation and discrimination in the hopes that their child might receive adequate care. Nobody should have to take their child home and watch her slowly starve to death because she's too sick for outpatient or residential care but is refused admission to hospital because they just simply don't like dealing with eating disorder patients and don't feel like admitting her.

This is the standard here in Canada, and it's not good enough.

What can the federal government do?

First, we need a national eating disorder registry so that we can track what happens to patients with eating disorders. At this point, there is no database that consistently tells us enough about what's happening, and if we don't measure the problem, it's as if the problem does not exist.

We need a nationally funded research strategy. The current funding strategies ensure that our colleagues will not share...[Technical Difficulty—Editor]...the pie with us. Crumbs are simply no longer enough. We need infrastructure funding to ensure that training and knowledge translation occur across the country and at all levels of training.

Evidence-based interventions exist that result in recovery rates of 60% to 70% in adolescents with severe eating disorders, yet there is nowhere in this country where families can consistently find these services in a timely fashion. In fact, in most of the country, these services are unavailable, meaning that these unlucky adolescents are sentenced to chronic illness and a shortened lifespan.

We need to act now as a nation.

Don't let this cycle of neglect repeat itself another time. Let this time be the last.

Thank you.

[The Chair, NDP, Hélène LeBlanc]

Thank you very much for your fascinating testimony, Dr. Pinhas.

I will now give the floor to Dr. Gail McVey, who has 10 minutes at her disposal.

[Dr. Gail McVey, Community Health Systems Resource Group, Ontario Community Outreach Program for Eating Disorders, The Hospital for Sick Children]

Thank you very much for the invitation to speak.

I am speaking on behalf of two of my roles. One is as a senior associate scientist at The Hospital for Sick Children, where I've carried out a 17-year program of research in the prevention of eating disorders. The other is as a psychologist and director of a provincial training program in the treatment of eating disorders that is funded by the Ministry of Health and Long-Term Care in Ontario.

My prevention research takes a lifespan approach and is heavily anchored in mental health promotion designed to foster healthy coping skills to fend off stressors that lead to eating disorders.

My early-to-mid research career has been supported by funding from the Ontario Mental Health Foundation, the Ontario Women's Health Council, CIHR knowledge translation and exchange, and a mid-career award from CIHR from the Institute of Gender and Health.

I have identified normative stressors of early adolescents that trigger eating problems in young females. This led to the development, implementation, and evaluation of prevention, trying to prevent symptoms that lead up to eating disorders in young females.

I subsequently trained...[Technical Difficulty—Editor]...public health practitioners to facilitate prevention and conducted research on that. I'm the first to develop and research a school-based ecological prevention program designed to prevent eating disorders by involving male and female students, parents, teachers, school personnel, and public health.

In recognition of the late adolescent risk transition for eating disorders, I partnered with university-based practitioners from student health services to develop, implement, and evaluate a prevention program for university students using peer health educators as agents of change. I have translated the evidence-based strategies into an online curriculum for teachers and public health and I've matched them to the ministry of education's learning objectives to foster uptake by teachers in Ontario, Nova Scotia, and British Columbia.

Coordination...[Technical Difficulty—Editor]...prevention research and knowledge translation activities has been made possible by my active and volunteer membership on various coalitions, including the Ontario Healthy Schools Coalition, the Body Image Coalition of Peel, and the Canadian Association for School Health, and through my delivery of face-to-face community-based prevention workshops across the province of Ontario.

What is unique and innovative about the prevention research that I've been conducting is that it has been shown to enhance protective factors and decrease risk factors that are associated with both eating disorders and obesity. The prevention strategies also promote a sense of belonging and connectedness among the youth, which is protective against a myriad of mental health concerns and risky behaviours.

Since 2007, I have broadened my program of research in two ways: one, by bridging the field of eating disorders and obesity prevention to seek common ground to promote health; and two, by broadening the scope of my partnerships Canada-wide. I'm currently leading an innovative professional development training model geared towards front-line health promoters to help integrate mental health promotion into healthy weight messaging, as well as leading a knowledge...[Technical Difficulty—Editor]...strategy across Canada, entitled the national prevention strategy group on the prevention of obesity and eating disorders. All of this has been done on pilot funding from CIHR in the amount of $68,000.

The stop and go nature of this research funding has brought the program of research to a halt. The competing demands on public health practitioners and educators, whom I have trained, have drowned out the need for eating disorder prevention and early intervention.

Within the eating disorder prevention research field, targeted prevention, which is defined as interventions designed for high school students that are aimed at preventing early onset symptoms from escalating into eating disorders, has produced in the research field the largest intervention effects. That means they are the most effective, yet there is a total absence of targeted prevention for Canadian adolescents.

This gap in service, or death valley, coincides with the highest period of risk for the development of eating disorder symptoms and their associated mental health concerns. Up to 25% of Canadian children and youth experience significant mental health issues, and 50% of these problems appear before the age of 14 years. Eating disorders are no exception. They fall into the same category of prevalence and onset.

A third of youth at risk for substance abuse, most of whom are female, also report experiencing concurrent eating disorder symptoms. Yet we don't have any concurrent substance abuse and eating disorder programming in Canada, with the exception of Rideauwood Addiction and Family Services in Ottawa, who are reaching out to our field of eating disorders to learn how to treat eating disorders, so that small agency can jump-start the first-of-its-kind concurrent treatment and prevention of eating disorders and substance abuse.

It would appear that across Canada we have resources and policies in place that focus on upstream health promotion for the whole population. Attention is also being given to maternal health and early childhood well-being for the zero to six years age group, and there is attention being focused on adults. There is a large gap in intervention research and resources available, however, for the 6 to 19 year age group, or the 6 to 24 year age group.

In my role with the Ontario Community Outreach Program for Eating Disorders, with the generous support of the Ministry of Health and Long-Term Care in Ontario, my colleagues and I have created a provincial training program. The lifespan approach delivers training and supervision and evidence-based eating disorder treatment, and works to bridge partnerships across sectors.

With a small investment in 1994 in the amount of $100,000, we travelled the province of Ontario and identified champions who, with our support, showed an interest in specializing in the treatment of eating disorders and educating health care practitioners and educators to help out with identification and early intervention, where possible.

With further investment from the Ministry of Health in Ontario, we developed a first-of-its-kind provincial network of specialized eating disorder service providers.

Despite our best attempts, we can't keep up with the heavy demand for specialized treatment, and the increasing complexity and comorbid conditions that accompany eating disorders, including anxiety, depression, and substance abuse, to name a few. We need help from the mental health and addiction field.

My recommendations for your report are that we need a tracking system for eating disorders at the national level, including a registry. We need guidelines for the treatment and prevention of eating disorders, with subsections for child and adolescent eating disorders, adult eating disorders, and young adult transition-aged youth with eating disorders. With that we need a mechanism for knowledge translation of these guidelines across multiple disciplines and faculties.

We need a research chair in the prevention of eating disorders, and we need a research chair in the treatment of eating disorders, one for adults, and one for children and youth.

We need a strategy to reach out to primary care practitioners, including family doctors, who are the first point of contact for the public, yet they are the least knowledgeable and skilled to recognize eating disorders and offer timely early intervention.

Last, as a field, we need to leverage the trains in motion that are under way at the federal, provincial and territorial levels in the area of mental health, so that eating disorders are part of round table discussions on topics of stigma reduction, knowledge translation and capacity building, youth councils, caregiver guidelines, speaker training, and tool kits.

In short, we want to put a stop to the discrimination experienced by the field of eating disorders so that we can meet the needs of individuals and their families who are so desperate for our care.

Thank you.

[The Chair, NDP, Hélène LeBlanc]

Thank you very much, Dr. McVey.

We will now go to questions.

Ms. Truppe, you have seven minutes.

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

Thank you, Dr. McVey and Dr. Pinhas, for being here today and taking time out of your busy schedules.

Dr. Pinhas, it's nice to see you again today. I had the honour and pleasure of meeting with you last week to learn a lot more about eating disorders. That was very informative. Thank you for doing that and meeting with some of the MPs.

Obviously there are different approaches to treating eating disorders, as there are for other diseases, mainly because it's a psychological disease as much as anything else. That we're learning.

Within the context of eating disorders, could you tell us how working with younger people differs from working with adults?

You mentioned that during your conversation with me in my office. You said that there were special challenges in dealing with younger kids due to the psychological makeup.

What works? What works when dealing with younger kids? What would be the best practice that you've seen?

[Dr. Leora Pinhas]

First, there is a real deficit of research when it comes to children specifically. We know we have to take a developmental approach and not try to treat kids like little adults, or even like miniature teenagers.

Right now a child as young as six or seven who shows up with an eating disorder can end up being in an in-patient unit where they are treated with 17-year-olds. This is really problematic. Most of us don't want our seven-year-olds hanging out with teenagers who may be talking about all kinds of things that are beyond a seven-year-old's ability to process. Working with their parents and helping their parents problem solve around how to get their child to eat again, supporting the parents in family therapy seems to work, although we don't have adequate research.

Again, we have evidence-based treatments that work for adolescents. We have some research to support this, but again, not as much as we would like. It is very different from treating adults who are independent and who don't have the same kind of relationships with their parents.

To answer your question about needing a variety of treatments, the problem is that even for an adult with other kinds of disorders, we have a variety of treatment options. With kidney failure, you might have a kidney transplant; you might have dialysis. For depression, there are all kinds of different therapy. Somehow with eating disorders, we've decided that if there is one program in the city, that's enough, and if you don't respond to that treatment it's too bad. Your only choice is to try again or to stay sick.

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

You've also spoken out about some of the eating and nutritional programs that are taught in middle school in Canada and some of the unfortunate consequences that go along with it.

Can you tell us a little more about these programs and what your concerns were?

[Dr. Leora Pinhas]

Sure. I think we've implemented in the curriculum all these healthy lifestyle programs that start in kindergarten and find their way not just into health class but into math and English. Kids are inundated with all this information, sometimes too much information, that they can't really understand or process and that they're not in charge of managing anyway. To keep telling kids that what they're eating is wrong, or that they need to change it when they don't buy their food, don't make their lunches.... It's the one area in education where instead of giving kids age-appropriate tasks where they can practise a skill, we tell them what they're supposed to do and then leave them to figure it out.

If we really want kids to have healthy, nutritious lunches, we need to have a lunch program. We can't tell kids what a healthy lunch is and then expect them to somehow figure out how to do that for themselves. We end up undermining parental authority, interfering with normal development, and we see kids who develop eating disorders because of that.

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

Dr. McVey, I read your biography, and it explains that you host the international symposium on integration of practices that prevent eating disorders. Whom do you invite to that? What type of professional people? Whom do you invite from across Canada or internationally? I'm assuming it's worldwide.

[Dr. Gail McVey]

This is across Canada. I've reached out to stakeholders from each province, some of the provinces that reach out to territories, as well as three of our federal agencies. The goal here was to be strategic. We wanted to try to bridge the field of eating disorders, so we reached out to people from these areas who specialized in the prevention of eating disorders. Then we invited people who were either at a policy, research, or practice level involved in healthy weight messaging and obesity prevention. These were multiple disciplines, so there was no exclusion according to discipline. This was more in terms of expertise in each of these two categories.

We wanted to leverage the research findings from both fields and look at opportunities to have lessons learned from success stories from each of these fields and try to look at an integrated approach to the prevention of a broad spectrum of weight-related disorders.

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

You just mentioned success stories and lessons learned. Do you have a good success story, a best practice or something that you really like which you think might work, or did work, that you've learned from hosting this?

[Dr. Gail McVey]

One of the things I did when I brought everybody together was share with them a background paper that I put together, which I would be very happy to share with the committee. It looked at research literature supporting why it is we would like to integrate both of these approaches up until a certain age group. We know from the literature that there are risk factors and protective factors common to both eating disorders and obesity. We have had some prevention research be successful in modifying those risk factors and boosting those protective factors, but they've been supported by funding in the eating disorder literature and have yet to be crossed over to the area of obesity prevention.

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

How often do you host these conferences? Are they annual?

[Dr. Gail McVey]

This started off with a CIHR planning and dissemination grant that I received in the amount of $20,000. It was a two-day in-person meeting that we hosted in 2011. It was met with such success that the participants requested that I continue to chair these meetings. Usually once every two months is what we've been doing up until now.

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

Thank you.

[The Chair, NDP, Hélène LeBlanc]

Ms. Ashton, for seven minutes, please.

[Niki Ashton, NDP, Churchill, MB]

Thank you very much, Dr. Pinhas and Dr. McVey, for joining us today and sharing your very important work and your research.

Dr. Pinhas, I'm very interested in your book, “Developing a feminist-informed model for decision making in the treatment of adolescent eating disorders”.

People with anorexia will sometimes refuse treatment by doctors. I'm wondering if you believe it is ethical to intervene against their will. What kind of ramifications does this have on a larger feminist framework which values informed consent? I'm wondering how your book addresses this tension.

[Dr. Leora Pinhas]

It wasn't a book; it was a paper, just to be clear.

What we were arguing for is that patients with eating disorders are like other mental health patients, and sometimes, because of the illness, they're not capable of consenting to treatment, particularly when they're really young. In the case of voluntarily allowing a 12-year-old to refuse treatment, we have to really...[Technical Difficulty—Editor]...whether she really understands the ramifications of what she's doing.

The feminist perspective was to talk not just about this idea of informed consent and having the freedom to make decisions, but it was also about responsibility and what families owed each other in terms of taking care of each other. Most people live in families and make their decisions independent of their family.

Sometimes people refuse treatment because they can't afford child care. I have seen someone delay their treatment for an eating disorder because they didn't have enough child care over the Christmas holidays. They couldn't do the treatment because they had to be home for their children.

This paper was arguing not necessarily that treatment should always be forced, but that people live in families, and it's about doing no harm and making sure that families can keep their family members safe.

As with other mental health disorders, when they are no longer able to make rational decisions for themselves, we have to step in the same way we do for other disorders. It was done as a direct response to not stepping in when it was clear that people were so starved they were not thinking clearly and had at previous times chosen therapy or would have likely chosen treatment had they had all their capacities intact.

We should not allow those people to make decisions that end their life. We don't do that in schizophrenia. We don't do that in depression. We should not do that in eating disorders. I have colleagues who can't step in because there's nowhere to treat patients. There is no one that will take them into a locked unit. They don't have the same rights.

I would argue that I don't think 10-year-olds or 12-year-olds have the capacity to decide to die from an eating disorder. I take those things very seriously.

[Niki Ashton, NDP, Churchill, MB]

Absolutely.

Do you think that applying a feminist lens when we're talking about eating disorders is important?

[Dr. Leora Pinhas]

Absolutely.

[Niki Ashton, NDP, Churchill, MB]

We're hearing from stakeholders such as yourselves and doctors that there's not enough access to treatment for people with eating disorders. Often it requires hospitalization for a person to receive a spot in a treatment program and there isn't enough treatment of the upstream causes of eating disorders or follow-through after a patient is released from a treatment program.

I notice your work with Sheena's Place, which tries to provide support to people through their life cycle. We find this work very commendable. I'm wondering if you could speak to the funding model for Sheena's Place and how similar centres can be established. More importantly, given our committee's work, could the federal government support such initiatives?

[Dr. Leora Pinhas]

I think the federal government could support such initiatives.

Sheena's Place is funded right now through donations. They don't currently have much access to government funding. What they do provide are groups. They do provide the funding for the therapists who provide the groups. They provide a safe place for patients who have had negative experiences and are afraid to return to hospital.

In fact, sometimes, even people who work in the hospitals, like me, will meet a patient at Sheena's Place because it feels safer for them. I would strongly endorse the work done by Sheena's Place and similar organizations like Hope's Garden and Danielle's Place. We need more services, but we also need to help them provide more services.

I know that Sheena's Place often worries about whether they'll have enough funding. Sometimes they have to cut back. They really do live month to month.