Have I mentioned that I go to too many conferences? This week I attended the Eating Disorders Association of Canada (EDAC) conference in Winnipeg, Manitoba. If you follow me on Twitter, this post might be a bit repetitive, as I seem to think that live-tweeting conferences is my single handed responsibility (that and convincing everyone and their dog to join Twitter). However, I wanted to take the opportunity to provide a bit more context around some of my Tweets and give my overall impressions about the conference and next steps that we might take to move from discussion to action around eating disorders in Canada.
Before getting into the conference, it is worth commenting on the pre-conference session hosted by the National Initiative for Eating Disorders (NIED). In case you don’t know, NIED is a not for profit group founded by Wendy Preskow and Lynne Koss and comprised of professionals and people with lived experience of having and caring for people with eating disorders. NIED has been a very active force in Canada since it was founded in 2012, advocating for change at federal and provincial levels of government, getting eating disorders on the agendas of national and provincial mental health organizations, and holding 53 free informational symposia – Tetyana and I have both spoken at symposia for NIED in the past.
Most recently, NIED has been spearheading work to establish a National Strategy for Eating Disorders – essentially, they have been reaching out to anyone with a stake in eating disorders across the country and facilitating dialogue about what we would need to do to improve the prevention, research, and treatment of eating disorders in Canada. Because I don’t know the meaning of the word “no” where eating disorder advocacy is concerned (and I love the hardworking and amazingly generous folks at NIED), I took on a fair bit of work around this project. I helped to create a survey that asked eating disorder stakeholders their top priorities for eating disorders and analyzed several hundred pages of qualitative data resulting from this survey. The aim of this particular step in the process was to create several “pillars” that could act as a basis for ongoing work toward change.
What was immediately clear was that priorities overlap – that research, prevention, and treatment are deeply interconnected and that people have divergent opinions about what is “most important.” Nonetheless, we established provisional pillars for the strategy (prevention, treatment, education/awareness, training and advocacy) and convened as a group of approximately 40 on September 28th in Winnipeg to talk about where we go from here.
The passion in the room was evident – as was the acknowledgment of the challenge of really making change. We talked about what the strategy might address, including:
- The fact that very few healthcare professionals receive adequate training in eating disorders, leading them to sometimes do more harm than good in their work with people with eating disorders
- The prevalence of stereotypes about who suffers from eating disorders, and the widespread assumption that eating disorders are the purview of young, white, middle-upper class, heterosexual, cis-gender women
- The challenge of establishing an “evidence base” for eating disorder treatment that takes into account clinical expertise, lived experience, and research
- The importance of breaking down barriers to care, including major geographic disparities and stigma
- The critical importance of funding to make anything happen
Does this all seem fairly high level and airy fairy at the moment? Well, it kind of is. I would place us firmly in the “idea generation” phase, despite ongoing efforts to march toward an action plan. What was encouraging, though, was that through discussions amongst those who are collectively passionate about changemaking, we were able to come together and begin our work toward collaborating and pursuing common goals, such as making appropriate and timely treatment accessible to a wider diversity of Canadians.
Following this kind of generative-but-exhausting day, the conference was inevitably a bit tiring for me. I do find myself wondering, sometimes, why we keep talking about the same thing at eating disorder conferences, rather than actually doing something about it. This is not meant to be a criticism of eating disorder professionals who care deeply about their patients and clients and genuinely want to support them however they can; it is more of a reflection on the limited resources we have to do this work, and how that feeds into a maintenance of the status quo.
There is innovative work going on – and I’m happy that places like EDAC give these approaches a stage (not something that all conferences do, particularly in this field). I feel a bit weird about this endorsement as I’m currently working there (so putting all of my cards on the table!) but the adolescent eating disorder program at Ontario Shores is one example of a program doing things differently and working in ways that are patient-centered and theory-rich. I saw Sara Wolfe (dietitian) & Shawn Carter (behavioural therapist) present about the approach to meal support at Ontario Shores and was encouraged at the ways in which they work to support the development of autonomy in their patients. They do this by:
- Allowing patients to struggle and supporting them through these struggles
- Providing individualized meal plans that are attuned to the particular needs of each teen
- Moving beyond the meal tray to mimic as closely as possible real life eating environments
- Not making assumptions about levels of support people require
One of the things about the meal support approach at Ontario Shores – and the program philosophy in general, which is rooted in the recovery model – that I appreciate is the idea that people with eating disorders can get very good at eating in the hospital – but once they leave hospital, things sometimes go awry. In life, things are messy. In life, things are activating. So, the approach is based from the beginning not around removing possible triggers, but on working with the youth to determine what is a challenge for them and working on the steps required to manage these.
Along the lines of innovative approaches, I was also interested to attend a workshop about peer support, led by Shaleen Jones from Eating Disorders Nova Scotia (EDNS) and Stacey Huget from the Looking Glass Foundation. They talked about peer support as a helpful adjunct to treatment and source of support for those unable to access treatment, on the wait list for treatment, or in recovery. Peer support is sometimes regarded as a bit of a minefield for eating disorders – people fear, for instance, that the mentor may not be “recovered enough” to support, may relapse, or may provide inappropriate advice. And certainly, the approach is not without its limitations, which Jones & Huget acknowledged, including the possibility of inappropriate matches, issues around time, and the fact that peer support would not generally replace other kinds of treatment. However, faced with the reality that many people do not have immediate access to treatment when they need and want it, peer support is an interesting approach to helping those with eating disorders.
Overall, there was at least a strong voiced acknowledgment that we need to be working toward innovation and moving beyond approaches to treatment for eating disorders that rest on antiquated notions of coercion and force. Whether this acknowledgment bears out in person-centered care across the board remains to be seen. I leave these conferences feeling quite activated and wanting to do more work that pushes us – pushes us to really acknowledge, consider, and address some of the contentious rifts in the field and work to integrate lived experience more fully into the way we do work in eating disorders. I also leave feeling a bit exhausted and somewhat disillusioned that I rarely see the rhetoric of needing to change systems bear out in practice.
So I take this moment as a plug – a plug for us to stop asking people to change to fit what we have, and start changing what we have to fit people. After all, if we see the same people returning to treatment 7 or 8 times, isn’t it time to stop calling these folks unmotivated and asking ourselves: what isn’t working, and why?