Where’s the Change? Service User Views on Eating Disorder Services

I write a lot about systems-level change for eating disorders, and about how the services that we have available for eating disorders are severely lacking. What I tend to struggle with – though it’s something I’m working on – is how to actually MAKE the changes I’m advocating for. I always fear the tendency to get caught up in saying “this is how things should be,” when I know that eating disorders are so complex and multifaceted and that one size does not fit all when it comes to support. I also fear my experience and my story becoming “the” story about eating disorders and recovery; just because something worked for me does not mean it will work for others.

Surprisingly, despite a general discontent in the ED field with the service continuum, there are few studies that explore what kinds of changes might be made to eating disorder services to make them more appropriate and effective. We tend to see more outcome studies that judge the effectiveness of the services based on their psychological, behavioural, and physiological effects – all very important aspects, but not the whole picture. One of the studies I look to when I’m seeking something a little more in-depth in terms of peoples’ experiences of eating disorder services is by Escobar-Koch et al. (2010), and looks at the perspectives of service users in the US and the UK.

The Study

The authors foreground some of the issues in the ED service literature; namely, that:

• Few people have looked at how available and accessible users perceive services to be
• The studies that do investigate this have very small sample sizes
• Satisfaction is often measured using rating scales, which can lead to people filling them out quickly and without a great deal of thought (and often skewing the results in a positive direction)
• Studies are usually conducted in one country, as opposed to comparing countries

To partially remedy these gaps, the authors surveyed 144 US participants and 150 UK participants about their experiences using an open-ended questionnaire developed by the World Summit Task Force of the Academy for Eating Disorders.

140 of the US participants were women and 4 were men; in the UK sample, 145 were women and 5 were men. Mean age was 30.1 for the US group and 26.6 for the UK.

They chose the US and UK in part because of the differences in how these countries’ healthcare systems are organized. In the US, healthcare is based around a “competitive market” model, and people have vastly different access to insurance coverage (as well as varied coverage packages). In the UK, healthcare is “socialized,” meaning that public insurance is most common.

The questionnaire included the following questions (drawn verbatim from p. 550 of the article):

1. What do you feel are the five essential features of a high-quality ED service?
2. What are your top five concerns about ED treatments/services as they are practiced at the moment?
3. Thinking about the future of ED treatments/ services, list the top five goals to which we should aspire.
4. Share any additional thoughts you have about ED treatments/services below.

What Makes for High Quality ED Service?

Participants explored the need for high quality staff, therapeutic approaches, availability and accessibility, client-centered care, support, duration of care, and education/information/research.

Among the characteristics of staff in a high quality ED service, participants articulated the need for a combination of personal and professional characteristics, including:

• Empathy
• Validation
• Respect
• Specialized eating disorder training
• Up to date knowledge of eating disorders

Participants primarily highlighted the need for psychological interventions that extend beyond a weight focus, but also endorsed a holistic approach to care, including nutrition, self-help, medical, and non-punitive methods. Some in the US suggested modelling ED care on an addictions model, though this was notably absent in the UK responses. More UK respondents endorsed alternative therapies for EDs, such as adding meditation or yoga to treatments.

Timely access to quality care was unsurprisingly high on the list of things that make for quality ED care. How this materialized differed between US and UK respondents:

• In the US, respondents emphasized the need for services to accept different kinds of insurance
• In the UK, respondents focused on reductions in wait lists and more streamlined referral processes

Client-centered care was another aspect of high-quality care; providing clients with the opportunity to be involved in their care, take responsibility for recovery, and avoiding one-size-fits-all approaches featured in responses.

Unsurprisingly, participants highlighted how key quality support in and outside of the eating disorder service was to recovery – client and carer support both emerged as important themes. Respondents also focused on the need for step-down care and relapse prevention, suggesting that support should not end when more intensive treatment does. Finally, education, information, and awareness in the community, for families, and for clients was an important aspect of quality care for respondents.

What Are the Issues with ED Care as Practiced?

In response to the question about concerns about how EDs are currently treated, respondents noted:

• There simply are not enough ED services available in either the US or the UK
• When services are available, they are not equally available to all (in the UK in terms of geographic proximity and the US in terms of financial accessibility) and people do not always know what is available to them
• Sometimes these services are not appropriate for clients; for instance, some respondents took issue with the punitive nature of some ED services
• Treatments may be too short and lack supportive aftercare
• Patients’ perspectives are not always valued in treatment
• Many eating disorder treatment facilities make decisions based on weight (especially in the UK sample)
• Many health care practitioners lack the specialized knowledge to make decisions about and treat eating disorders

Where Do We Go From Here?

It’s an interesting time to take another look at this study given that I’m a part of a National Initiative for Eating Disorders (NIED) work group to establish a National Strategy for Eating Disorders in Canada. Many of the issues we’ve raised so far are similar to those identified above; this is both helpful and also incredibly discouraging. Given that this article was published six years ago, we might ask: where is the change?

Obviously change is slow, but this article clearly articulates some major issues in the accessibility, availability, and delivery of eating disorder services in the US and the UK – issues that we share in Canada as well. It’s a bit distressing that despite articles like these, we haven’t seen much change since 2010. Despite what we know about the need for timely access to appropriate care, it is upsetting that, as Escobar-Koch et al. note: “in both countries, early intervention and comprehensive treatment for EDs do not seem to be a reality for the majority of service users at present, although barriers to care differ.” (p. 559)

I’d also like to note that participants’ other spaces of social location are not included in the article, making it more challenging to understand how these barriers and issues are exacerbated by significant and persistent stereotypes about eating disorders. While we see certain social locations surfacing as barriers in this data – namely, geographic disparities in the UK and socioeconomic status in the US – others remain unnamed.

We could expect that if healthcare professionals are not well-informed about eating disorders, as indicated in this work, they would also likely buy into stereotypes that act as barriers to treatment and not recognize eating disorders in people of different ethnicities, genders, abilities, sexual orientations, sizes, etc. Further, if there is little variation and individualization of treatment programs, we might consider how those with different treatment needs might experience available treatments as unhelpful, if not actively harmful.

To me, these results provide us with a fair bit to go on in terms of starting to address gaps in the system and amend approaches to be more appropriate. So why is it not happening? I suspect the answer lies in the challenges of getting policymakers and funders on board to actually make change. For many policymakers and funders, eating disorders fall fairly low on the priority list of health concerns. Those of us seeking to make change at a systems level are often met with cries of “but what about the obesity epidemic?!” that position eating disorders as a lesser public health concern.

It can be challenging to get policy-makers and funders to pay attention, particularly without using the kind of shock tactics (i.e., showing emaciated bodies, etc.) that I don’t feel are terribly helpful to dismantling stereotypes about eating disorders. So, we get caught in a bit of a catch-22: we need money and political will to make the changes we know need to be made, but we often can’t get on their agendas without perpetuating damaging tropes about who gets eating disorders.

I fear, again, that I’m falling into a spiral of deconstructing what exists without proposing workable solutions, but I do think it is worth naming what we’re up against. My hope is that by continuing to do work like this and the NIED survey, we can demonstrate the urgency of change without using scare tactics. Anyone want to help?

Reference

Escobar-Koch, T., Banker, J.D., Crow, S., Cullis, J., Ringwood, S., Smith, G., van Furth, E., Westin, K. & Schmidt, U. (2010). Service users’ views of eating disorder services: an international comparison. International Journal of Eating Disorders, 43(6):549-59.