Strategizing for Change: Eating Disorders Association of Canada 2016 Conference

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?

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Andrea is a PhD candidate focusing on individual, familial, and health care definitions and experiences of eating disorder recovery. She has an MSc in Family Relations and Human Development and a BA in Sociology. In her Masters research, she used qualitative and arts-based approaches (digital storytelling) to explore the experiences of young women in recovery from eating disorders. Andrea has recovered from EDNOS. She can be reached at andrea[at]scienceofeds[dot]org.


  1. The program at Ontario Shores sounds great. I really want to learn more about it.

    The fears around the peer support thing are ironic. Do people think it is less “dangerous” than being in IP or residential with a lot of individuals who are ill? Or that clinicians don’t say things that are often far more damaging than what other patients or those with ED histories can say? It is weird. We have clinicians with ED histories: They can (and do) relapse. They can (and do) say inappropriate things. Structured peer-support isn’t my personal thing, I’m more of a fan of the more natural support that arises on online communities, but I think we need diverse programs for diverse people. The idea that formal, sanctioned treatment is somehow better needs to be really closely examined. We should be careful to not oversell it.

    “Why we keep talking about the same thing at eating disorder conferences.” Well, I suppose it is because it is less about what’s said and more about networking and career advancement? (Or am I too cynical?)

    • Agreed, I don’t understand the fear. I think it’s also similar to the fears around recovered therapists though – again, it presumes that eating disorder recovery is the most important thing about a person. Honestly, I think part of the benefit of peer support wouldn’t be the talking specifically about the ED stuff, but actually just hanging around someone who went through an ED and is now doing other things. I’m not a big fan of structured support of this type either – or formalized mentorship in general (I always prefer when I mentor people or am mentored more organically because there’s a connection or shared interest), but I know lots of people dig it. I also agree that we need to not oversell formalized treatment; I really do think you’d like the Ontario Shores approach for their pragmatic thinking on that point, too.

      And yeah, you’re right re: networking and career advancement. Which benefits me, of course, but I guess I have this idealistic perspective that conferences could become places where we don’t just talk about what we’ve done but rather talk about what to do next.

  2. First of all, thank you Andrea for all you do for NIED. We are truly lucky to have you on our side.
    As a therapist that has a history of this illness I do think that there is more to this. I think that peer support is great thing if it is executed in a way that gives as much support to the supporter as the supporter is giving to the other peers. I have seen far too many people giving peer support for the “wrong” reasons and it ending up hurting them in the long run. I am not sure what the “fears” of recovered therapists, but I think that can also come back to the debate that we as therapists face all the time, which is, should I be open about my experience or not?

    I have been working in this field since 2009 and I too struggle at these types of conferences and meetings with needing less talk, more action. As a VERY eager advocate when I first started it quickly became exhausting seeing treatment and outcomes not change. I feel that in the last couple of years we really trying to do what we can with no resources and very little support. I am optimistic that a national strategy committee will help. We are all curious as to what Ontario Shores is doing- and I admire Leora for her desire and passion for helping meet each and every individual needs.

    • I agree – I don’t think that peer support should be entered into lightly; I will say that the Looking Glass & EDNS both seem to have well executed programs with lots of support for the peer supporters as well; training, and lots of check in opportunities. Much like the role that supervision would play in the therapy role, I gather. And I agree that the issue of how much/whether to disclose and when is a big challenge that recovered people face, particularly when entering into the profession… I don’t think it impacts me to the same extent but I do always wonder when/if to tell participants about my history. I have nothing to hide, but sometimes it just doesn’t feel like the time to bring it up, when I’m interested in getting THEIR story, instead of sharing my own. Anyway, just thoughts, no coherent answers (as I have a tendency to do…)

      I’m hopeful that the sentiment around the desire for change is one many of us have in common and with that that we can start moving toward action… I’m so grateful for NIED for getting the ball rolling. I can’t believe how much you’ve managed to do with no resources – I hope people will provide the means for us to make some kind of a dent in all of the ideas that people raised!

  3. ” Structured peer-support isn’t my personal thing, I’m more of a fan of the more natural support that arises on online communities…”

    There’s no doubt about it – Peer-based online support arrises organically, and comes more from the heart than pre-determined structures constructed by treatment programs. One only has to look at the meager level of activity that happens on forums where posts are strictly censured by members of the national advocacy groups, and compare it with the level of activity on forums which are peer-moderated and constructed by people who have eating disorders themselves, to get an idea of the sort of support that sufferers themselves view as most effective. One would think that the advocacy groups would be picking up on this disparity, and trying to do something about it, and yet their forums continue to limp along in their same old constricted manner, while the big peer-based forums attract view-counts which regularly add up to tens of thousands per day. There’s a message in this glaring disparity I believe, and yet the professional groups seemingly continue to turn a blind eye to it.

    “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. ”

    As someone who’s spent more years than I care to mention on the peer boards, I can assure you that among sufferers themselves, the general sense is that “Awareness Campaigns” would most profitably be directed towards professionals, rather than towards the general public. Such public campaigns often seem designed primarily to draw attention to the advocacy groups themselves, rather than working towards developing the sorts of professional awareness that materially helps people with EDs.

    “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…”

    To be honest, I can’t say I’ve seen much progress either when it comes to self-reports as to treatment effectiveness. Granted resources are limited, but with all the recent chatter about “best practices” and how that may end up tying into funding issues, one does begin to wonder where the room is for true innovation.

    People speaking up though – I do feel that’s what’s needed, even if this means that the input sometimes comes from outside of the professional treatment establishment.

    • I wondered where the quotes you were quoting were from in the post and then I realized you were quoting Tetyana’s comment… but I’ll try to reply a bit anyway. “Peer-based online support arrises organically” – I agree mostly, but I think SOMETIMES structured support can be effective; I think they’re doing a decent job of this in the Netherlands, actually, with Proud to Be Me. Their forums are quite active and researchers and clinicians have been working to change up the models when they are less effective to things people actually want to engage in. But yes, it isn’t just a matter of if you build it they will come – the “it” needs to be the right “it.”

      Regarding the second point (this one quoted from my post) – yes, I agree. For the third point I also agree, especially with the need to value lived experience in addition to what is usually seen as evidence.

  4. I was happy to read about meal time support at Ontario Shores and it is exactly the same where I work. I’m also pretty sure that where I work is the only place that works in that way in my entire country, which is a scary thought, as I think where I work is amazing at supporting individualised needs.

  5. Andrea, you always seem to hit the nail on the head! I am a Canadian carer and made the decision to attend NEDA this past weekend. I left with more knowledge of what needs to change and am also feeling the frustration that while the conference experience is amazing, we are all there “preaching to the choir”. Wouldn’t it be amazing to begin inviting those who have the power to make policy change so that they can hear from all of us what needs to change and why? Let’s give ‘them’ a true inside look at ‘us’ so they can work alongside us seeing the truth of where things are, right now, that we need help to change.

    As for peer support, when it happens well it’s a great thing, when it doesn’t, agree that damage can happen. Life is like that though. My young adult daughter has been professionally supporter by an affected person, in strong recovery for many years, and I often and gladly credit her for being the reason my daughter is still alive.

    The networking to advance ourselves or our careers is important in that many of us leave revitalized to continue the uphill March towards change.

    Thanks for always doing what you do!

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