Let’s Talk about Systems Level Change for Eating Disorders

This past Wednesday, January 27^th, 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:

• The campaign is not as inclusionary as it should be
• That we forget to look at how the way we frame mental illness is problematic in the way that it promotes one way of living life as superior (that is, the “productive” life)
• That large corporations like Bell may contribute to employee ill health, and
• Generally that this kind of “feel good” campaign doesn’t have the year-round staying power to really make the kinds of systemic changes we need in order to create a truly well society

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.

THE STUDY

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.

IMPLICATIONS

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.

Reference

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