Let’s Talk about Systems Level Change for Eating Disorders

This past Wednesday, January 27th, was Bell Let’s Talk day in Canada. In case you’re unfamiliar with the campaign, Bell Canada (a telecom company) donates 5 cents to mental health awareness initiatives for every social media post or text with the hashtag #BellLetsTalk. In general, the campaign has been lauded for its contribution to decreasing shame and stigma around mental illness, which is awesome. There are a number of critics, though, who point out that:

Resultantly, ever year I have a mini-existential crisis around how to involve myself in the day. On the one hand, I can’t pass up the opportunity to raise awareness about eating disorders and to put eating disorders on the mental health agenda. As much as I’m sceptical about the long-term impact of corporation-led social initiatives, I recognize that within the system we’re in, raising over 6 million dollars for mental health specifically is nothing to scoff at.

On the other hand, I am the squeakiest of wheels around the need to look beyond the kind of short-term, feel-good initiative that allows some to pay cursory attention to mental health on a single day and forget about it for the rest of the year. Much in the same way that I think that days like New Year’s Eve, Halloween, and Valentine’s Day are over hyped, I find that days like these can be, too. They share a kind of shiny happiness that occludes the reality of the really poor state of mental health services in this country and elsewhere.

What’s a Social Justice Minded Eating Disorder Researcher & Activist To Do?

To reconcile my inner confusion, I usually try to use the day to draw attention to these systemic factors, and to try to hammer down a key point:

If we actually want to improve mental health services, specifically for eating disorders, we need to have political will and funding to do so. No amount of shouting into the ether of the Twittersphere about resilience and overcoming is going to build timely, appropriate, and desired treatment for those who are suffering.

We also cannot forget the systemic injustices that have pervaded the way we’ve treated eating disorders and other mental illnesses: think back to the days of asylums, when people deemed mentally ill were segregated from society and poorly treated (to say the least), to lobotomies, performed against people’s will. Think about the complexities of social location (i.e., race, class, gender, body size) and diagnosis; about how often people who want treatment face barriers to diagnosis because they don’t fit the “expected picture” of someone with an eating disorder. Even when diagnosed, treatments on offer may not fit the needs and desires of people from different social locations – not only do we need more treatment, but we need better treatment: a broader treatment continuum, able to offer treatment in line with the actual needs of diverse service users.

All of this leads me to the actual point of this post, which is to highlight (once again) how one size clearly does not fit all when it comes to eating disorder treatment. What works for an upper-middle class adolescent who has just gotten ill is not going to work (necessarily) for a marginalized individual who has had refractory anorexia nervosa for 15 plus years. There’s just no comparing the two. And yet, many cycle in and out of the same few types of treatment we have available, and we just don’t have the alternative treatment options we need to provide something new.

What does the literature say about the treatments we have available, and how people experience them? I’ve written before about the patient experience, and Tetyana wrote about an alternative model for treating those with long-term anorexia here. In this post, I highlighted a study by Strober and Johnson that underlines the need to go beyond a one-size-fits-all approach.

I’d love to now highlight how what we have on offer, treatment-wise, colludes with neoliberal capitalism, but there are no articles about that specifically in the context of eating disorders (yet, but I’m working on it). For now, I thought it might be worth commenting on what we do have available in Canada in particular, with an eye to identifying where we might go.


Norris et al. (2013) conducted a survey of treatment programs for adolescents in Canada; the 11 programs surveyed were situated in tertiary care settings (i.e., hospitals providing specialist services) and provided intensive eating disorder treatment. To give non-Canadians a bit of background about our healthcare system, health care falls under provincial jurisdiction, with oversight from federal bodies (through the Canada Health Act). Each province receives a different amount of money to run their programs. As you might imagine, and as the authors of this article note, this can be problematic: “there is no consensus on best practice for medical and/or psychological treatment of adolescents with severe eating disorders in Canada” (p. 311).

Without a doubt, we have some stellar eating disorder clinicians in this country – but programs are under-funded, under-staffed, and relatively few and far between. In this study, clinician-researchers (members of our Canadian eating disorders association, EDAC) developed a survey, which they distributed to 11 provincially-recognized and/or hospital funded programs.

Of these programs:

  • All treat patients with AN, BN, and EDNOS
  • All treat patients aged 12-18, with 9 offering care to those younger than 12
  • 4 (36%) treat patients with BED
  • All use DSM 4 (revised) criteria for diagnoses
  • All provide inpatient and outpatient care
  • 55% provide day hospital/partial hospitalization services
  • 91% provide consults for non-ED-program patients
  • 6 programs are within the hospital’s psychiatry or mental health operational framework
  • 2 are within paediatrics departments
  • 3 share leadership from psychiatry/mental health and paediatrics
  • 6 have a specific program budget
  • 5 work from the departmental budget

The majority of sites had significant waitlists for treatment – around 6.5 weeks, on average. I actually found that the number of referrals per year on average seemed quite low, at 119.1. Programs assessed between 35 and 235 cases per year. Because I can’t just accept this and move on, this got me thinking about the likelihood of cases being missed by those doing the referring (i.e., thinking back to my post on the lack of training for doctors in recognizing the signs of an eating disorder).

Notably, staffing differed quite dramatically between sites: the only type of professional employed at all 11 sites is a dietician. Not all programs had an on-staff psychiatrist (80%), physician (80%), social worker (90%), nurse (90%), or teacher (90%). Very few had occupational therapists (20%), child and youth counsellors (60%), recreational therapists (50%), or administrative support (70%).

In terms of treatment model, all the programs use cognitive-behavioural approaches, and most of the programs (91%) base their programming in family based therapy. Interestingly, programs also draw on an eclectic base of other therapies, including:

  • Readiness motivational models (55%)
  • Narrative therapies (45%)
  • Interpersonal and psychodynamic therapies (36%)
  • Multi-family therapy (27%)

It is unclear to me how the programs reconcile using these diverse approaches together, as they fundamentally differ in orientation. So, while I’m encouraged at the relatively widespread use of narrative therapy, for example, I wonder how such a systems-based approach is applied in concert with cognitive behavioural approaches, which focus mostly on individual solutions.


The authors note that these results are not terribly surprising: we know that eating disorders tend to be treated in a certain way – essentially, by using everything that we have at our disposal to try to save adolescents’ lives. They note that there are specific quirks of the Canadian landscape that make providing effective treatment a challenge. For instance, the fact that we are so spread out makes providing day-hospital treatment more challenging.

Norris and colleagues also reflect on the overall lack of standardized guidelines around how best to provide treatment, and on the potential clashes between the overall framework programs are using to deliver treatment (i.e., family-based therapy) and the multimodal therapies delivered within the programs.

What is really interesting and important about this study, in relation to the broader systemic issues I identified earlier, is how the authors clearly identify how haphazard our approach to handling eating disorders really is. As they note:

  • There was no representation from 3 of our 10 provinces in this survey due to lacking services
  • Program waitlists sometimes reach one year, meaning many youth continue to get sicker while waiting to be treated

The real hammer-it-home point for me:

Funding agencies need to come to terms with the fact that the illness requires intensive psychological treatment and that early intervention is essential to stave off the chronicity that these illnesses all too frequently breed. (p. 315)

I would add that we need to also fight for types of intensive treatment that do not involve hospitalization; perhaps this falls in the authors’ call for innovative solutions. Further, services need to reflect the diversity of the Canadian youth and families who seek them. Keep in mind, to, that only adolescent services were part of this survey. The landscape for adult services in Canada is likely even more scattered and challenging to access, if my anecdotal experiences (and those of others I’ve spoken with) are any indication.

So how does this relate to Bell Let’s Talk, and to the discussions of mental health we have in general? To me, it’s important that we think about what the landscape of treatment looks like and what is missing. Taking a systems lens means considering who isn’t getting the treatment they need and want: who isn’t able to access treatment? Who is being treated in an inappropriate setting for them, because of their own unique social location? How can we provide treatment that meets diverse needs?

Evidently, we can’t make any change without funding and policy level change. We can have the best desires and the best clinicians in the world and no change – and that’s the bottom line. So let’s talk about how to move beyond corporate sponsorship toward governmental will.


Norris, M., Strike, M., Pinhas, L., Gomez, R., Elliott, A., Ferguson, P., & Gusella, J. (2013). The canadian eating disorder program survey – exploring intensive treatment programs for youth with eating disorders. Journal of the Canadian Academy of Child and Adolescent Psychiatry = Journal de l’Academie canadienne de psychiatrie de l’enfant et de l’adolescent, 22 (4), 310-6 PMID: 24223051

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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. I am most surprised by the fact that not all of the programs had a psychiatrist and not all had a non-psychiatrist physician. It is not clear to me in the data whether 100% of the programs had a physician (psychiatrist or not)? How is that possible?

    I think the eclectic use of therapies is a good thing because it means that, hopefully, the patients will be able to find something that works with them. They are not contradictory or mutually exclusive — at least I don’t think they are — even if the theoretical models underpinning them are to some extent.

    We are so, so far away, it seems, from providing comprehensive and good treatment across the country that it is maddening. Of course, there are good programs and amazing clinicians, but overall, it is just so incredibly poor. But to me, the bottleneck isn’t lack of research. Sure, even the best treatments in the best settings provided by the most-well-trained clinicians don’t lead to 100% remission (or even close), but the bigger problem is that people are waiting for a year, if not more, to get any actual treatment.

    I really want to see more programs that can be delivered in community settings. I would also want to see more programs that support adolescents and youth for whom any time of family-based/family-oriented therapy is just not a possibility. I think we need way, way more places like Sheena’s Place, except bigger and with a broader range of services. Non-judgemental, and voluntary. It is not perfect (of course, nothing is or will be), but I think more places like that, especially if they can also offer meal support and/or dietitian services, would fill a big gap I think.

    • Yeah, that also surprised me re: non-psych doctor & psychiatrist. You’d think there would need to be either or… it’s not clear because of the way it’s reported.

      I agree mostly, around the eclectic treatment use; you’re right, it seems like a good way to raise the odds that something will stick. It does make me wonder about outcome studies, though, mostly with the fact that they’re all under an FBT umbrella but with intensive therapies that are not FBT in the way people know FBT, you know? So, if they’re “counting” in efficacy estimates for FBT, how do we know that’s the part that is working, and not something else? Similarly, since they all provide some kind of cognitive behavioural work, would there be a claim that CB is the “best way to go”? I think to a certain extent I’m still wrapping my head around the CB/FBT mix, actually. Because many adherents to strict FBT would likely disagree with the theoretical underpinnings of CB approaches to EDs — particularly for body image being a primary driver of behaviour. But you’re right, in terms of actually delivering treatment it’s likely not such a bad idea to chuck anything that even has some potential in there.

      I agree, perhaps oddly, that it isn’t a lack of research holding back the provision of comprehensive, quality treatment. Largely for the reasons I noted just now — isolating the exact mechanism of action re: what works is not easy, obviously. To me it makes sense to, rather than finding one single thing that is best, to provide more options so that people can make those decisions. It’s a bit patronizing to assume that some researcher can isolate the single best thing for everyone — people’s circumstances and desires around treatment matter, you know? Also, it’s impossible, because one size doesn’t fit all, and so on and so forth. But of course that’s a hard sell in a world where we want quick, simple, and easy solutions and to be able to point to the best evidence for everything.

      I totally agree about programs based in community settings, as well, along with everything else you describe (around programs similar to Sheena’s Place) — honestly, the non-judgmental and voluntary thing is so incredibly important that I can’t believe that’s something often left out of the equation… particularly for those who’ve had eating disorders for a long time and/or are dealing with them alone.

  2. I have actively had anorexia for the past nine years, and the lack of support from the healthcare industry continues to baffle me. This article mentioned a 6.5 week wait for care – in my experience it was over 8weeks. In the case of private hospitals with only one OHIP bed it was at least a 12month wait or you had to pay. And this was only for inpatient.

    I am extremely grateful you are raising awareness that a “one-size-fits all” treatment plan is not sufficient. I have found outpatient programs are the worst for rigidity and demanding those in need follow their strict group guidelines or denied service (in my case).

    While this article focused primarily on adolescent treatment, I have found the transition into adult treatment is not any better. While I had exceptional treatment at the Hospital for Sick Kids – the lack of support after moving into the adult level contributed to my decline back into the disorder.

    Thank you for raising this awareness. The healthcare provided for eating disorder needs to change.

    • Hi Amanda,
      Thank you for your comment. The 6.5 week wait was an average among the programs — it will definitely vary program-to-program.

      It is interesting you found OP to be very strict. What were the group guidelines you had to follow that you did not or what were the demands that were made? When I did OP at NYGH about 10 years ago, I did not attend their group sessions (after an awful first session) and did not see their hospital therapist (after two mind bogglingly useless and condescending sessions) So, I simply went to get weighed, essentially. I met up with the dietician but found her condescending and useless, too. Still, I was in the program until I got my menses back, despite basically not partaking in most of the services.

      I generally think the rigidity of the programs is very problematic. Of course, I understand it is sometimes necessary, especially if it is putting other patients at risk, but this is why I preferred voluntary support programs like the ones at Sheena’s Place. They are obviously not a replacement, but it was very different when people were there who WANTED to be there — even if they weren’t actively recovering or even trying — they *wanted* to be there and that made a huge difference, I feel.

      I think Andrea has written before about the transition from adolescent to adult care? (Andrea?) I believe Gina Dimitropoulos has done some research on this. (http://www.ncbi.nlm.nih.gov/pubmed/?term=Dimitropoulos%20G%5BAuthor%5D&cauthor=true&cauthor_uid=23241086).

      I agree with you so much on the lack of support provided to adults. It is absolutely incredible. The situation is honestly mindboggling.

      • After attending two inpatient programs I attended the outpatient services at Trellis Mental Health (Now CMHA Wellington). The requirements were to attend the groups or you were not part of their services (they provided groups, a dietitian and a registered nurse). I did not find the groups helpful but wished to continue with the nurse and dietitian. However I was told that was not permitted – I had to do the groups. Therefore I left. In hindsight, perhaps the groups could have been beneficial. I think it is ridiculous that someone who has an eating disorder, but WANTS support (dietitian and nurse) is told they are not allowed access. How is that in any way helpful?

        A few years later in the throes of a relapse I once again tried to access services. Inpatient programs had too long of a wait and I needed help. This time I was told I was a medical liability and not allowed to enter the Outpatient services. Even now where I have been stable, but in no ways recovered, I am not permitted outpatient services unless I attend groups. I work full time. The groups are all during the day.
        The services are in no way accessible and I am in no way the only one seeking help for an eating disorder who can not fulfil the requirements for the outpatient treatment. Yet CMHA continues to applaud itself for its Eating Disorder Support.

        I completely agree that groups are MUCH more beneficial when people actually want to be there. However I always find it triggering to be with others with eating disorders. Why is individual therapy considered a luxury in mental health services for those with eating disorders?!

        • I think the requirement to attend group is just so incredibly stupid it is hard to believe it was/is implemented. I agree with you: It is ridiculous. It is especially ridiculous because group support is something that can, so clearly, be harmful to patients with EDs. Unsurprisingly, a lot of people find group therapy to be very triggering, so requiring patients to attend is just akdfs. What.

          I ran into the same thing when thinking about doing day program treatment: The hours overlap with regular work hours. I don’t have regular work hours, so it wouldn’t be a problem for me, but most people *do*. Honestly, most of the time, I wonder how people recover given the lack of support.

  3. Wow, I am just so grateful for this whole dialogue — blog post and comments. We need treatment options that are not infantilizing, classist, fat phobic, or just generally designed for cohorts of white, moneyed teenage girls from intact nuclear families. Adults with eating disorders tend to be educated about their own illness, insightful, motivated (in unique, idiosyncratic ways), and diverse, and ought to be given the autonomy to choose among various treatment modalities, based on our own convictions, strengths, and needs. This will require a wide spectrum of available supports — and in the States this wil require insurance companies to reasonably cover that spectrum — but I think it’s worth the effort for the very deadliest mental illness.

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