Addressing the Gaps in Current Eating Disorder Services in the Province of British Columbia
Recently our organization has approached B.C.’s new Ministry of Mental and Addictions. Our goal in doing so is to begin a conversation about eating disorders and the improvements we believe we can make together to current services.
In the province of British Columbia we are fortunate to have some public services aimed at treating eating disorders, but there is still a great deal to be desired and significant gaps in treatment that impact patient outcomes.
Funding for eating disorders in B.C. is split between two different ministries: the Ministry of Health and the Ministry of Child and Family Development. Why this is the case I can only speculate. Perhaps this is because it is still assumed that eating disorder largely affect youth: an assumption that is not necessarily inaccurate (as many eating disorders develop in a person’s youth), but is a very limited picture of the entire patient population.
Up-to-date and thorough statistics on eating disorders are hard to find, especially Canadian-specific statistics; however, these are vital to forming a complete and accurate picture of eating disorders in Canada and thus determine if we are treating them sufficiently and appropriately. The National Eating Disorder Information Centre (NEDIC) does have some Canadian-specific statistics on their website. In one report, NEDIC found that the prevalence of anorexia and bulimia [was] estimated to be 0.3% and 1.0% among adolescent and young women respectively [and] prevalence rates of anorexia and bulimia [appeared] to increase during the transition from adolescence to young adulthood (2007).
NEDIC also found that:
Lifetime prevalence of anorexia nervosa (AN) = 0.9% in women and 0.3% in men.
In 2007, Canada’s population was about 32.89 million people. This means that roughly 296,000 women and 98,000 men had a lifetime prevalence of AN. Canada’s current population has increased to 36.7 million people. Eating disorders have been on the rise consistently over the years, so it is likely that these numbers have increased as well.
Lifetime prevalence of bulimia nervosa (BN) = 1.5% in women and 0.5% in men.
As above, Canada’s population in 2007 was approximately 32.89 million which means that around 493,000 women and 164,000 men had a lifetime prevalence of BN at that time.
Lifetime prevalence of binge eating disorder (BED) found to be 3.5% in women and 2.0% in men.
Again, this means roughly 1.15 million women and 650,000 men in Canada in 2007 had a lifetime prevalence of BED.
It’s important to note that disordered eating and eating disorders falling under the “otherwise specified feeding eating disorders” (OSFED) category are not represented in these statistics. The other thing to consider is that these are diagnosed eating disorders, but not everyone with an eating disorder will receive a diagnosis or treatment.
The other reason treatment options are more available to youth might simply be (again speculation) related to efforts to provide upstream healthcare approaches. Upstream approaches in healthcare focus on addressing a problem before it gets out of hand, which is an important approach to numerous health conditions (both mental and physical). Targeting youth is certainly one interpretation of an upstream approach, but it isn’t necessarily the only way of creating effective, upstream approaches to the treatment of eating disorders.
Another, perhaps more negative, but practical way of looking at treating youth more intensely than adults is that there is just more hope there. The longer one spends in the depths of an eating, the harder it is to shift those deeply rooted thought patterns and achieving a “full recovery” (which is still a definition that is defined differently study to study, clinician to clinician, patient to patient, but we can generally assume it’s a place where a person no longer has eating disorder thoughts and behaviours and has moved on in their life). Youth do have a much higher rate of achieving this kind of recovery because those thought patterns and associated behaviours have had less time to deeply root themselves.
Still, sometimes this assumption that youth will just “grow out of it” is harmful because it doesn’t necessarily address the underlying issues, why the eating disorder developed in the first place.
(A personal example…) When I first became ill, I was only eleven, things deteriorated quickly as they can with kids and I ended up being treated at Children’s Hospital in Vancouver because there was little in terms of services where I grew up (farther north in the province). Children’s Hospital saved my life, but at the same time my family was told I would just “grow out of it” and I nearly did, until those same stresses that had brought about my initial descent into my eating disorder reappeared in my life and I returned to what I knew as a coping mechanism. The focus had been (and I don’t mean to imply it wasn’t appropriate as it is a key part of recovery) on restoring my physical health. I had just turned thirteen at that point and insight was not something I had. When people told me my eating disorder was about more than weight I didn’t believe them. When I returned home (at the time we lived in Prince George), I received some limited outpatient treatment until I was fourteen and I probably had more in terms of therapy there than at Children’s (as far as I can recall and in part because my brain was functioning a bit better at that point in time thanks to nutrition). I still didn’t really understand why this had happened to me in the first place and my family was left to become my treatment team.
It wasn’t until I relapsed significantly in early university that I was diagnosed with social anxiety and depression and through therapy was able to start pulling apart the reasons unique to me, for developing my eating disorder. I remember being taken aback with an anxiety diagnosis and yet it also made complete sense to me, but it wasn’t like it stuck out in a family of anxious, introverted people. With that diagnosis I started to recognize issues that I hadn’t seen before such as panic attacks, extreme avoidance of situations (usually in public) where I might have a panic attack, obsessiveness, and a perfectionistic personality with extremely inflexible thinking. I started to realize that these weren’t necessarily “normal” it’s just that they had been all I’d ever known. My psychiatrist at the time told me that these kinds of co-morbid issues are like an entangled knot and that when you pull on one string (say you challenge the socially anxious part of yourself) it pulls on the other (tugs at the eating disorder part and those familiar coping mechanisms). They’re intricately interconnected issues. This realization hadn’t come to me before (which is not necessarily anyone’s fault, I simply may not have been able to comprehend this kind of information when I was younger). However, this is a pattern we can see repeated throughout eating disorder services (especially in acute care settings) and reflects the issues that specialists can create as these co-morbid diagnoses are not always sufficiently addressed together as part of the whole picture of the person’s struggle. Too often it seems as though we focus on pulling out a diagnosis and treating it in isolation, but we must remember that every diagnosis is situated in the context of a person’s life. We cannot treat people as discrete parts when they are complex wholes.
As an adult, treatment is very different from when you’re younger, namely because there is much more personal responsibility involved and that is challenging. As a child you have built in advocates and people are not afraid to take away your choices in order to make them for you. As an adult, you are given autonomy that is both a blessing and a burden in the case of eating disorders. This is the case for both patients and families as the latter are forced to learn the difficult lesson that we cannot fix people, we can only love them and sometimes that means watching them make choices we know will only hurt them. It’s painful. I personally think it would be more painful to watch someone struggle than to be the one struggling in some ways.
So often I was terrified of having my ability to choose taken away from me, but at the same time it was all I wanted because I couldn’t choose anything resembling wellness for myself, there was too much self-hatred getting in the way of allowing myself that much. As one moves farther into adulthood (past the magical ages of 18 and 24) and you start to notice the degree to which services and options begin to close off quite suddenly. This is where eating disorder services being offered through the Ministry of Children and Family Development becomes quite problematic because while they technically serve adults, youth are their focus, and eating disorder services are mixed in with multiple other MCFD services.
It can be very challenging for adult patients not to internalize this narrowing of services as confirmation of hopelessness and worthlessness. While it’s not meant personally, it feels like a verdict. So much of our current health care services are predicated on the idea that people will seek out services and advocate for themselves and this might be the case for someone with a physical ailment that causes them pain or interrupts their life. For someone who believes they’re worthless and is struggling to take care of themselves it’s a bit different. The latter is not as likely to seek help due to a whole host of reasons (stigma, negative past experiences with healthcare professionals, not believing they’re worth it, fear of being a burden, fear of being called “attention seeking” or being told to just pull up their bootstraps and get on with life, internal beliefs about mental health, and external barriers between them and the services they need such as long wait-lists, lack of a family physician, etc.)
“Despite the fact that 1 in 5 people will suffer with a mental illness at some point in a given year, only one-third will receive the help they need” (Eating Disorders Brief by the Canadian Psychological Association, 2014).
While it makes sense to focus on youth as the patterns of their eating disorder are not as ingrained and thus potentially easier to change, we don’t have sufficient services to adequately address this currently and thus we end up with adults with eating disorders. Furthermore, perhaps the eating disorder patterns in adults are more ingrained, but adults also have self-reflective and cognitive capacities that enable them to do the deep psychological work needed for recovery that youth sometimes don’t have yet (as in my case). Adults with eating disorders are not hopeless, they are just different, with different needs that we are simply not meeting.
The priority is always people before anything else, but in a healthcare system tight on funding, economical arguments become important for making political changes. The critical thing about mental illness is that it severely limits people’s ability to participate in society. Enter the disability adjusted life year (DALY), a metric for calculating the burden of a disease that looks at the years of life lost to a disease in addition to the years of life lived with the disability/disease (YLDs). According to the National Institute of Mental Health’s statistics, mental and behavioural disorders contribute to 7.4% of global DALY’s, which puts them fifth overall in leading causes of disease burden. If we focus in on just the YLD component of the DALY calculation, we can measure the years of life lived with a disability/disease and in that metric, by and large the most significant contributor is mental illness (22.7%).
Clearly, mental illness creates a significant health burden. When individuals are limited in their ability to participate meaningfully in their communities, 1. their lives suffer for it, and 2. their community loses out on what those people can offer at their best (or at the very least, not at their worst).
Again, Canadian-specific research is difficult to find (especially as a lay-person) in this area, but overall there is research (often from abroad) (1, 2, 3) that demonstrates the benefits of a variety of upstream healthcare approaches (to people’s lives, but also from a purely economical standpoint). People whose wellness isn’t sufficiently supported may be unable to work and may be in and out of hospital or other treatment facilities (as can be the case for eating disorder which have both mental and sometimes serious physical health effects). B.C.’s rate of readmission to hospital for those with a mental health diagnosis is the highest in Canada (at 13.7% according to CIHI.) B.C. also has an above average cost to a standard hospital stay (at $6,135 vs. the national average of $5, 992 for the 2016-2017 year.)
In 2014, the Canadian Psychological Association’s (CPA) report on eating disorders estimated the annual cost of mental illness in Canada at 51 billion (and that was in 2014… The costs have likely only increased since then.) The briefing goes on to say that “Canada has fallen behind other countries such as the United Kingdom, Australia, the Netherlands, and Finland” in pursuing innovative and cost-effective methods for treating eating disorders.
Now I don’t know about the rest of Canada, but I know B.C. still has a ways to go…
Acute & Residential Treatment for Eating disorders in B.C.
The majority of publicly-funded treatment options for eating disorders in B.C. are located in Vancouver (which makes sense geographically and population-wise, although it does make it difficult for patients and families who live outside of the lower mainland). St. Paul’s hospital in downtown Vancouver is the only hospital in the province with a specialized eating disorder unit for adults (and thus the necessary insurance of healthcare providers who are trained in treating eating disorders vs. on general mental health units). In conjunction with St. Paul’s hospital (the Provincial Adult Tertiary Eating Disorders Program or PATSEDP) and Vancouver Coastal Health, there is a residential treatment program (Discovery/Vista) for adults located in Vancouver. Another, newer residential treatment option is the Looking Glass Residence (also in Vancouver) for those aged 17-24. However, Looking Glass Residence is only partially publicly-funded; those 19 and older pay a $30/day fee (which is pretty decent, but does end up costing about $2700 for a 3 month stay plus the cost of medications and supplements for those not on Fair Pharmacare and/or Plan G.) For Children and youth (up to age 18), there are services (including a pediatric specialized unit for eating disorders) run through Children’s Hospital in Vancouver.
The general format for residential treatment involves a 3-4 month stay with various nutrition restoration and therapeutic components. I am unsure what the research base is for this timeline (of 3-4 months.) According to B.C.’s Clinical Practice Guidelines (2012) “the optimum length of stay for intensive therapy admissions is not clear from the existing evidence base. While there is general agreement that medical stabilization admissions are best kept as brief as possible, there is considerable variability in the literature regarding length and intensity of day, residential, and inpatient treatment. In many parts of the world, length of stay is primarily determined by funding issues.” The other component I would expect (again speculation) determines length of stay, is weight and how much weight people need to gain (on average) and how long this tends to take. I don’t want to minimize the importance of weight gain in recovery, but that focus reflects 1. stereotypes about eating disorders and sufferers being underweight, and 2. our healthcare system’s limited focus on physical and measurable features of health (which is such a small part of the impact an eating disorder has on a person and their family.) Getting someone to a healthy weight (if that is what part of their recovery entails) or stable nutrition status is important, but equally, if not more important, is the likelihood of them being able to maintain that on their own. Having the skills and ability to use those skills consistently to deal with distress… That’s the part of treatment we fail at miserably with insufficient outpatient and community supports.
Attendance of a residential program requires adherence to rules and expected outcomes (i.e. weight gain at a certain rate if that is part of the patient’s treatment plan, usually 1kg/week.) This is understandable as safety is the priority for all patients; however, it can be challenging for patients to abide by rules as ambivalence is a commonly recognized feature of eating disorders. If patients cannot abide by rules, they may be asked to leave the program. Again, this is understandable and I’m not quite sure what the solution is, but it also seems less than ideal to me that patients are asked to leave higher levels of care when they struggling extensively as that is the very reason they need a higher level of care. I don’t expect it likely that a patient who is struggling with 24/7 care available to them will manage to find any more motivation or be able to get themselves to a better place if they are discharged home in that state. What are they returning to? What support do they actually have at home (not in theory, but in reality). This is where pre-care can be really helpful as it gets patients used to the new expectations they’ll encounter in residential treatment. Thankfully, both pre-care and follow-up are expanding components in both the Looking Glass and Discovery/Vista programs, but again, these are difficult for patients who live elsewhere in the province to attend. I’m not entirely sure how we solve this one… But I think we can do better. In what other situation would we find it normal to turn people away from treatment because they’re too sick? I think the idea is that those people go home to work on motivation or will go into hospital, but this doesn’t happen the way I think it’s intended.
To get treatment in B.C. there is this bizarre “goldilocks zone” one must be in, not too sick, but sick enough. Just the right amount of sick. Again, I don’t think this is what is intended by treatment providers, but it is how it feels from the patient and family perspective.
Outpatient Treatment Options for Eating Disorders in B.C.
This is the area that needs the most improvement in my mind. Most outpatient services in B.C. are offered through MCFD, which as previously discussed, focuses on youth. These clinics are over-capacity and thus have long wait-lists (sometimes >6 months). Because these clinics are stretched so thin (excuse the metaphor…) the services they offer are incredibly limited. Someone who is theoretically supposed to see a psychiatrist, dietitian, or counsellor every week may be only seeing these individuals every second, third, or fourth week. These clinicians are often going above and beyond the scope of their jobs, working extra hours just to see their patients.
Doing what they can with very limited resources, publicly funded outpatient clinics are forced to create policies that limit their services even more, offering treatment for limited periods of time and relying on the assumption that patients have a family doctor which is not always the case (CBC - Shortage of GPs). Unfortunately many people in B.C. do not have access to a primary care physician and thus have to rely on walk-in-clinics which are not equipped to deal with following a patient’s case. Waiting 2 hours to see a doctor 10 minutes who is doing their best to see multiple people and attend to their various needs, just isn’t effective or safe follow-up care. Often these physicians don’t have any familiarity with eating disorders in the first place… Recently the clinic here in Victoria introduced two GPs at the clinic which is a great step, but again, doesn’t tackle the issue of having a GP once one is discharged.
Similarly, many patients cannot afford private counselling and even if someone has decent insurance coverage through their work, many of these plans don’t include counselling services.
Outpatient clinics end up largely serving as referral services to residential treatment in Vancouver, which makes sense as residential services can offer more to a patient, but it’s not always an option, especially for adults. To put your life on pause for 3-4 months, leave your work (potentially your job), your family, and your home to go to Vancouver for a few months, receive treatment, knowing you’re going to come back and have limited follow-up care, thus increasing the risk of a relapse… it is a lot for adult patients to consider. Sometimes it’s just not a reality for people and unfortunately if that’s all that a clinic can offer a patient, then the patient goes away feeling as though they’ve failed when really it’s just that the right treatment option for them isn’t available.
Back to that document I mentioned previously. In 2012, The B.C. Clinical Practice Guidelines for Treating Eating Disorders was put forward. It was largely based on a report made as part of the BC Ministry of Health Services‘ Action Plan for Eating Disorders in 2011. It was a document that emphasized the need for stepped levels of care in treating eating disorders. In the original report made by Alisa Harrison, PhD, outpatient treatment is emphasized as the first line of care with clear cost-effective and clinical benefits to patients. Various evidence-based outpatient, day treatment, and community models are put forward in that original report and the need for these is echoed in the practice guidelines document.
That report and the guidelines that followed in 2012 are excellent documents that I encourage everyone to review. The issue is, that was 2011/2012 and very little has changed. These wonderfully progressive documents are excellent in their scope and suggestions, but they don’t exist in reality. B.C. does not have stepped levels of care and patients suffer for it (I also imagine it ends up costing more in the long run to have this cycle of relapse and repeat admissions. Just a thought…)
In approaching the Ministry of Mental Health and Addictions we’re not even bringing forward research-based suggestions the government hasn’t already come up with (6-7 years ago) and that’s terribly disappointing… It’s easy to be angry and I am angry sometimes. (Sometimes I’m even downright cynical, but cynicism never changed anything in this world for the better.) Frustration aside, I know it’s complicated and everywhere’s tight for funding. I imagine people who work in this field are frustrated too. I truly believe we’re all trying to do our best, but the thing is, I don’t think we are doing our best. Although I do want to recognize the hard-working clinicians in this field who are tirelessly pushing for improvement and have created groups like Looking Glass over the last decade, I still think we can do much better for people, however complicated it might be. That’s what I plan (or rather hope) for VIVED to remind people of. Let’s do better together.
- S. Ritchey