Stop treating eating disorders

I have a favor to ask clinicians who treat eating disorders: please stop.

If you aren't reading and studying and training in evidence-based approaches, stop.

If you don't specialize in eating disorders, stop.

If you treat eating disorder patients without being part of a team, stop.

If you "mean well," stop.

If you don't think things have changed in the past 5 years in understanding this illness, stop.

If you often find parents of your patients are overemotional, over involved, in denial, and a nuisance, stop.

If you identify more with the ill child than the well parents, stop.

If none of the parents of your patients are well, stop.

If you don't know your patients' parents well enough to know if they are well, stop.

This is a life threatening, family-destroying, potentially disabling, and complex illness. If you are not sure you are the ideal person to treat our children: don't.

Comments

  1. Laura,

    Some others to add to the list- maybe more of "A Mom's Manifesto":

    If you or the "team" are going to continually endorse and intimidate non-stop parents, and are hell-bent towards uproven, unmonitored, hugely questionable and expensive IP/OP programs- Please stop, or by all means, find employment within these facilities since some of you are so charmed, and convinced these programs provide the "answer" to ED recovery/treatment.

    Please provide the actual FACTS and proven track record(s), statistics, analysis and years of f/u that is necessary to continue making sweeping recommendations for this "stepped up level of intensive care" at these impossibly impractical out-of-state, or nightmarishly local IP/OP programs.

    Then families can truly make informed choices based on evidence and facts NOT lip-service, glamourized marketing, advertisizing, and the simple reason that some Dr's give up on patients and families, then think it's a good idea, (or have had the agenda all along, but waited the family out until they were totally exhausted and depleted, etc.), to take a chance or "try" IP/OP treatment- as if it's like changing the oil in your car, for heavens sake! Maybe a good rule of thumb for some of these providers might be: would you send your OWN child/family member there?

    And because some of you don't appear in your own ED background practice/clinic by your actions and/or words interested in assisting and supporting families and sufferers FULLY towards helping them recover, please stop, or help refer and adequately recommend other providers that would be a better fit. And PLEASE check the credentials- since some of you have the extra staff, social workers, etc. who are not as you state, "providing additional resources", but mostly mouthing ridiculous platitudes. Please stop keeping many of us perpetually caught in this spinning wheel of confusion and wasting of time, since ironically, some of us, as parents, have actually been doing alot of the extra legwork, researching, educating ourselves, our families, in addition with being primray caregivers. I've been baffled by what many of these ED providers actually are DOING to help families/sufferers- outside of keeping vitals and maintaining labwork, because it seems to be working bizarrely the other way around folks.

    Please stop ignoring parents inquiries and questions, or treating them condescendingly. You do not have all the "answers", and with the current research, (if some of you are even following it), out there, no one else does either at this point. Given the nature of complexity and individual makeup of each sufferer or any person for that matter, this illness will, and does require a much wider, eclectic, open-minded perspective and approach vs dogmatic and draconian-minded rigidity, so it works in everyone's best interest to work TOGETHER; and not to continually attempt to sabotage or manipulate the tireless efforts of families and parents who have been committed towards their chid's full recovery. Why would parents expect anything less of their providers, who are parodoxially getting paid sometime to do exactly that- less?

    Families that want FBT or a Maudsely-based approach to care should not be treated as "controversial" or "weird", or unruly, combative, or any of the other hurtful and demeaning words I've heard endlessly thrown about by Dr's, therapists et al- how is any of this helpful to anyone? These families are asking you to help and support them, why is this so threatening to some of you in the field of ED's?

    Please stop demoralizing parents, especially when they are obviously at their the most vunerable, and want the best in HUMANE treatment for their children. If as providers, clinicians, therapists, you don't have the same standards for care in mind of your ED patients/families; and the wellbeing, healthy functioning and healing of the family in mind, why are you in this field to begin with? Please- please stop.

    -ciao

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  2. Does anyone know what the licensing requirements are for ED treatment professionals? Do they need to take a test, demonstrate competence, or obtain any kind of license? Are there continuing education requirements, as there are for doctors? One of the large ED treatment centers advertises that it is accredited by the Joint Commission on Accreditation of Healthcare Organizations (JCAHO). The center claims that JCAHO accreditation is "limited to top organizations delivering high levels of patient service, reducing patient risk, and creating an environment for continuous improvement." However, an article in the Washington Post on July 25, 2005 points out that JCAHO is a private group that is paid by the very hospitals that it reviews, and that about 99% of the hospitals reviewed by JCAHO win accreditation. This doesn't sound like only the "top organizations." Apparently, JCAHO does not review centers that treat EDs for method of treatment, quality of staff, or other factors that would indicate skill in treating EDs. The review is limited to issues such as patient safety, reducing risk of infection, and avoiding errors in dispensing medication. If somebody wants to open a clinic to treat any other illness, such as cancer for example, wouldn't they need to demonstrate that they use the most up-to-date evidence-based treatment methods? Why isn't the same required for the treatment of EDs?

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  3. Good points anonymous, although there really isn't THAT much evidence about. Our state funded NHS is trying to ensure that evidence based treatments are those that are funded. However it's difficult - when treatments are turned down for funding there is often a big backlash from those who feel they are of benefit, particularly if they are backed by big drug companies (Aricept is a celebrated case).
    Also, although there is no payment or other dubious motives, the reviews of hospitals and healthcare trusts against government set targets is hardly without its problems. Our local Mental Health Care trust recently scored highly whereas the general medical hospital didn't. The biggest contrast was in infection rates. Sure, one wouldn't want ANY patient to become infected while in ANY hospital but actually it is far less likely in a psychiatric setting as a) most of their work is outpatient anyway and b) the patients who ARE admitted are always under 65 and usually physically fairly well, whereas the general hospital only admits physically sick people.

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  4. Anon,

    As far as I know (and I worked in public health for several years), there is NO specific accredidation for treating EDs. There's general licensing for whatever profession you happen to specialize in (psychiatry, psychology, dietetics, social work, etc), but not for EDs in general.

    Residential ED facilities are licensed under the same purview as drug treatment centers (that's why you have to have a TB test upon intake in most states).

    That's all I can say for certain about licensing. It's a good point, though. Plastic surgeons give out success rates- and health is more important than a nice pair of boobs.

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  5. Anon, I'm pretty sure anyone can say they treat eds. When we looked at our insurance panel of ed therapists, we saw an acquaintance's name on it. We know his training and eds are not part of it. He wasn't even formally trained in therapy. The laws are loose and dangerous.

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  6. I'm not necessarily advocating a licensing requirement to treat EDs. After all, who would determine who is qualified to provide treatment? But the lack of any specific training, education, or licensing means that we are largely on our own when we select providers. Be careful out there!

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  7. Anon,

    I for one would be ALL for advocating for specific required licensing and credentials in order to be able to treat ED's. This is a huge issue facing many families when attempting to find even adequate ED care, not to mention being led to believe in an individual/clinic/practice that have no authentic background, specific treatment goals/plans, and necessary years of experience in ED treatment leading to full recovery with REAL objectives and strategies.

    It's a very taboo and sensitive subject for many, and until the whistle is blown on many ineffective IP/OP programs, clinicians, therapists, etc. it's not going to change anytime soon, leaving many further frustrated, wasting a considerable amount of time and money; and alone in the recovery of their loved one.

    -ciao

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  8. Laura,

    As usual, succinct and to the point. I hope those clinicians hear you. Speaking as an attorney, I'm afraid I believe the most effective way to influence medical treatment at this point is through a high-profile malpractice suit. Short of that, it would be nice to be able to place an editorial to that effect in an influential medical journal.

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  9. I'd love to see all these things!

    Standards and accreditation.
    Accountability.
    Malpractice suit.
    Editorial.

    and add this: Make insurance stop paying for treatments without evidence of efficacy, or at least with evidence of no harm.

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  10. Even though about a million people in the US alone, according to recent estimates, currently suffer fron AN, there have been fewer than a dozen rigorous, randomized, controlled, clinical trials of treatment methods. We need better science out there. The private treatment centers, however, with a few exceptions, are not interested in subjecting their methods to scientific scrutiny. The large research universities and the NIH/NIMH have limited budgets for research on AN. Parents have been blamed so long for causing AN that they are afraid to stand up and publicly demand more funding. Many medical conditions get lots of federal research money when a member of Congress is personally affected through his or her family.
    With 535 members of the House and Senate, there must be several whose kids have had EDs. Who are they, and what are they doing about it?

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  11. Theses are excellent ideas! I really think those of us inspired to do something for change need to lock our heads collectively together with the additional steering of the scientific/medical research community, legal expertise, lobbyists, parents, etc. to get things moving more constructively.

    Each state should have adequately COVERED resources for families outside of only residential treatment, or endless clinic care with providers,therapists, RD's who are not adequately trained for the wide range of variations that present within ED's and the needs of supporting the family for their recovering child.

    And if the family and sufferer are not getting the services/treatment this illness demands, they should have all access to qualified, adequately covered and readily supplied referals, and additional sources for treatment w/o having to put up with the BS or runaround, while their child continues to wait for continued treatment.

    There has got to be more that we can do to really advocate and push for highly scrutinized studies, mandated licensing and pre-screening for those advertising that they treat ED's, and regularly updated databases of credentialed providers, as well as mandatory regular screeing of IP/OP and hospitalization protocols for ED treatment and f/u care.

    What worries me with the "make insurance stop paying" issue is precisely what many of us are already experiencing when searching for qualified care.

    Most insurance co's already don't don't cover zilch when it comes to ED treatment, especially anything Maudsley-based. Then ironically, some of the worst IP/OP programs ARE covered, which I have yet to fully comprehend, considering there is absolutely no statistical evidence proving IP treatment does any better than individualized, FBT treatment.

    Apologies for the length! I know I write too much... can't help it!

    "Fired Up" as Laura puts it :)

    Best Wishes- Tracey

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  12. I like your ideas. My insurance company was willing to pay about $1,000 a day for residential care (after I threatened to sue it; I'm a lawyer) but I doubt any insurer would be willing to pay even half that amount to compensate a parent for taking off time from work to provide in-home Maudsley care. Makes no sense.

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