If you're not taking flak you're not over the target

I am feeling cross.

I am watching families suffer all over the world every day, so forgive my smoldering.

I see families in national health systems that offer free and universal care but limit it to "evidence-based" care even when the evidence is so scant there's little to offer.I see families without national health systems who can buy any number of myth-based care options if they have the money, or resort to short doses of emergency care that actually leave the patient worse off because the full dose is too expensive.

I see parents forced to step up and assume all care for their children, and other parents not ALLOWED to step up for theirs.I'm watching mothers and fathers who do have good information trying to give it to others and rebuked. I see parents beaten down by bad information unable to trust good information when it is offered.

I see a lack of authoritative answers from those who have them and an abundance of Experts whose answers are dangerously wrong. I see a new field, Eating Disorders, going in several directions at once and none of them authoritatively.

I know a father in one country whose daughter is dying and he fears for his own life when she strikes out flailing. A mother in another country who travels to a public place just to see her daughter at work, knowing each time that it may be the last. I know a therapist who has had to advise a family on how to give up. A couple whose marriage collapsed because one spouse sided with the eating disorder. A clinic owner who can't use the law to help save a patient's life because the parents will simply intervene in a tragic misunderstanding of what "help" means. A mum and dad who finally got their daughter to a hospital but were kept from seeing her when they were accused of abuse - and are now afraid to feed their child at home. A mother who rescues the daughter long enough for her strength to return and go back to the care of a father who won't intervene.

None of this has to happen. We know enough about this illness to prevent these situations and help these families and clinicians. What we lack is the will to stop allowing, stop paying for, stop vacillating, stop thinking it won't matter, stop being silent. We lack the will to question others in public. We lack standards, grounded principles, a plan.

Sorry. Rant over. Work still on.


  1. Right there with you!
    Putting one foot in front of the other trying to change this.

  2. Plodding along beside M and you. Working on it.

  3. I feel your rage! And thanks for putting in the bit about "families in national health systems that offer free and universal care but limit it to "evidence-based" care even when the evidence is so scant there's little to offer" - I'll take it as just for me even if it isn't!

  4. I might be an ex-sufferer rather than a parent but I know how this feels, I really do. I see my friends getting dangerous advice from "professionals", care that borders on negligence and the degree of patient blaming that goes on is ridiculous. It tears me apart knowing that more and more of my friends are going to die unnecessarily as I get older. I've lost two of my friends and known countless other friends of friends die already and I'm only 26. I wish I could rush into EDUs brandishing evidence and insisting that they change their ideas but I don't think I'd get too far! It makes me want to DO something, and I do - I carry on writing my blog and trying to be a good example of how recovery is possible, I email anyone who asks me questions, I'm involved in outreach work with a local ED charity, and I'm training to be a counsellor. It never feels like enough.

    Grr grr grr.

  5. Oh, Katie! I feel you!

    Blaming patients for their illness, and holding them responsible for seeking, understanding, and staying in care, is even more wrong-headed than blaming parents or society.

    Patients should be lauded, admired for every step toward recovery, supported financially and practically and morally and lovingly EVERY STEP OF THE WAY by everyone: parents, society, health systems.

  6. M, Katie, Marcella, and Charlotte: KEEP GOING!!!!

  7. Katie

    Perhaps we should go into EDUs together. At 6ft, I make a formidable entrance and I could always wear dark glasses and act all bouncerish.

    We need a car


  8. Do come to community services as well as EDUs Charlotte and Katie - I can think of one in particular I would like to give a good fright to at the moment.

  9. Hi Laura,
    i feel the same way. Two families in my local area are battling with this - local hospital ed unit doesn't get it - care teams not in the same book let alone same page. Have been providing resource packages to them with parent forum, books, articles, notes on parenting, our own experience of facing down the illness but they still have to deal with the lived experience of it. They need a good care team that puts them in charge and supports them. Why are there such inconsistencies - some hospital great - Westmead in Sydney, facilities in the US and UK - why isn't their best practice replicated? Why should parents have to spend months hunting for answers and support while their child deteriorates before their eyes? It's as if they are battling the system and the illness. I want universal protocols out there. I want zero tolerance to starvation. I want accountability for those that get it so wrong so that they alter their practice. And where practice is good for it to be replicated. Not this hit and miss luck - of - the -draw you might be near a facility that gets it or not. Or have a trained FBT therapist. I want community nurses or allied health staff to be able to help in the home where re-feeding too difficult, overwhelming or when families need respite. I've even done a cost benefit analysis of this to show how much would be saved compared to the long hospital stays.

    I'm with you Laura. I'm angry about this because it is HARD ENOUGH, it's hard enough with all the support in the world.

  10. I believe that refeeding is not something parents can do successfully on their own, without a Maudsley trained coach or professional. ATDT is not a substitute for individualized, professional care--it's for connecting and learning from other parents (it's not real treatment).

    If parents want to see advancement in the treatments of ED, they need to use the professional care that exists. Why, for example, in densely-populated Southern California, does UCSD only see 3-5 families per month for the 5-day FBT program? This is a business and if there was more demand, they (I'm assuming they can) would meet the demand.

    We know that Maudsley and FBT are the gold standard treatments and there are many trained therapists in the US who are listed on directories at FEAST and Maudsley Parents websites. We also know that U of Chicago, Mt. Sinai, and UCSD use these gold standard treatments.

    So, my question is why aren't more parents accessing these treatments? Geography is not a barrier as many providers will do long-distance therapy or consultations.

    I think the nature of the disease, the stigma of mental illness, and the parent's bad previous ED care contribute to the lack of advancement in care.

    More families need to use the highly trained ED care that is available. When offered substandard care, more families need to say "No, I want a Maudsley trained therapist or doctor." Then more professionals might be (big "might") lining up for the training that Le Grange offers at U of Chicago (but not many do).

    Medical treatments are big business and based on demand and supply. More parents need to demand what treatments they want, then we will see change. But first, they need to use the trained care that is available--that's not happening...WHY?

  11. Anonymous, these are the right questions. They are the same questions I was asking when my daughter recovered and I was incredulous that there was barely any supply or demand for what was obviously a great option for many.

    So I did the only thing I knew how to do: I tried to get the word out by writing a book and using it as a platform to build demand. It's been six years of building, and getting people to do what you are doing by asking that question and getting MAD is the whole point. Unless enough of us do that - and more and more are - things won't change.

    No, UCSD and the other FBT clinics can't just expand to meet the need. The for-profit centers can, but we're not talking about a profitable approach. Unless insurance starts paying for FBT preferentially and STOPS paying for non-evidence-based treatment then demand doesn't really matter.

    Until FBT gets into training programs for each of the specialties treating eating disorders (physicians, therapists, dieticians) then there won't be supply - but remember that there isn't really ANY training for EDs for those specialties anyway.

    Also remember that parents don't know what they don't know. If their local providers don't know, then they give parents inadequate information - but THEY don't know what they don't know either.

    Finally, after years of asking the same questions and doing everything in my power to change it, I can say that this isn't a story that society wants to hear. People don't want to hear that weight loss can be harmful, that mental illness is not a choice, that parents are good caregivers, or that their favorite evil of the week is not at the root of all bad things.

    Parents don't want to hear that they are going to need to re-think everything and also be in charge of a scary, scary mental condition. Parents don't want to make their kids do scary things, or make them unhappy, or be labeled as ill.

    I still slog away, and it is much better now and getting better all the time but there was SO FAR to go that we've only begun, I'm afraid. Stay angry. Get involved.

  12. "Geography is not a barrier as many providers will do long-distance therapy or consultations."

    Actually it is, clinicians cannot treat in states where they are not licensed. They cannot even provide pro bono publico care across state lines.

    This, and the fact that insurance companies do not pay for care in many instances, are very large obstacles to getting the best available care.


  13. Laura -- Oh, you're good -- Darnit, you said what I didn't want to hear, what I already thought was true: that parents don't want to "rethink everything" and take charge of a "scary mental illness."

    This is what I call "the unspeakable." It's those early morning quiet thoughts while still lying in bed: "What will become of my child." These unspeakable thoughts and fears keep me going: one big meal at a time!

    Okay, but I'm still gonna harp on parents finding and demanding the best care possible. Really, all the info is just-a-Google-away.

    If a parent can drive a kid hours away or to another state to a strange residential center and leave them there, how is it possible that this same parent can't make a little phone call to a Maudsley trained therapist and start feeding their child at home with professional guidance. It's incomprehensible to me! I know there's no answer and there's so much bad care out there...I just have to vent.

    Slog away! Things are happening, spring is coming!

  14. Anonymous (last comment) -- your sentence "If a parent can drive a kid hours away . . ." implies that those of us who do place our child (or in the case of an adult child, support placement) in a residential or inpatient treatment facility are somehow unwilling to do the work to access the "right" care. While FBT has been the "right" treatment for many, it isn't right for all situations. Most of us are doing the very best we can for our children, whether that means using FBT or other forms of treatment. Treatment of EDs and especially EDs with comorbid diagnoses is not a black and white issue. Residential care isn't necessarily "bad" care just as FBT isn't necessarily "good" care. When we adopt rigid ideas about treatment, we run the risk of not support the full spectrum of families dealing with this horrible, horrible illness.

  15. Thank you, last Anonymous. FBT is NOT the only option or the best option in every situation and at every stage of the treatment trajectory. The ideal would be a range of options - all of them personalized to the situation.

    Although the principles of FBT always apply (food is medicine, don't blame patient or family, separate patient from the illness) the location and the methods and the other elements will differ.

    Parents make such hard choices, and we all need to be respectful of that.

  16. Stepping off the toes I just squashed, yes, I get the variability and the "hard choices," yet I remain firm on my point that FBT is the "gold standard" treatment available and more parents need to access it, so that ED treatments can advance.

    I know families with no barrriers (money, education, time, ED knowledge) to care and who remain stuck in traditional, individual therapy or don't want help and their children suffer.

    I'm mad and sad because every child can eat, but the cold hard fact is that not every parent can feed.

  17. Wonderful rant. Having been involved in breastfeeding and birth activism when my girls were young, I know that sadly this sort of thing goes on in many areas of medicine (at least areas that tend to relate to women!). The sad difference here is how deadly eating disorders can be when if not dealt with correctly.

  18. Anonymous -- it is not always so easy to find an FBT practioner near enough or money to travel to see one. Many families are working very limited resources and insurance companies or government aid that will only cover certain things.

  19. Anonymous "all the info" may well be a Google-away but there's so much with it that a parent starting out, scared and alone, is still going to have to wade through a load of shale to get to the nuggets of gold. Even with those golden nuggets to hand, not everyone has choice. Those with little money, those with poor insurance, those in National Health Services where the choice is made for them, those with co-morbid conditions which debar them from accessing treatment that is available to others - NONE of them have much choice.

  20. "ATDT is not a substitute for individualized, professional care--it's for connecting and learning from other parents (it's not real treatment)" - absolutely agree, and Laura and the moderators spend a lot of time letting people know that and encouraging everyone, particularly those who don't seem to have it, to get good on the ground support. On the other hand I think that connecting and learning from other parents is a simply WONDERFUL adjunct to professional treatment - it looks as if Ivan Eisler and the guys at Westmead do too. We don't need either peer support or evidence based treatment - we need both.

  21. ITA agree with SuperDewa's statement, "it is not always so easy to find an FBT practioner near enough or money to travel to see one. Many families are working very limited resources and insurance companies or government aid that will only cover certain things."

    When my daughter developed anorexia at age 14, I had never heard of Maudsley. After almost two years of paying out-of-pocket for inadequate "traditional" measures, I found ATDT and the concept of FBT, then a few months later, stumbled on the website for a therapist using a Maudsley-based approach. Her office was "only" 45 minutes away. How much did my insurance pay for the 4-hour mini-session in which she learned about us and we about her? IIRC, $50. They disallowed all reimbursement for the follow-up "regular" sessions for some reason. Quite honestly, I don't even know why and I didn't have the energy to go through the appeal process right then. I was too busy re-feeding my daughter and helping her FINALLY start down the road to recovery.

    That was less than 18 months ago, so the lack of information and money is not outdated. And I live near a large urban area. I can't imagine what someone in a more remote location could do!

    BTW, the insurance company paid all but a small deductible for two 3-week stays at a nearby inpatient ED treatment center -- thousand of dollars. But not one penny for the therapist who really made the difference.

  22. Anonymous who acknowledging squashing toes -- I wish I were as sure about my own adult child's treatment as you seem to be about those not even in your own family. How in the world can you possibly know what is best for an individual ED sufferer? There certainly is evidence that FBT is an effective treatment for adolescents suffering from anorexia. However, you cannot possibly extend that to every single case of ED,no matter the age, the illness or the circumstances. I'm so tired of people who think they know exactly what is right in every case. I wish such certainty was reality but it isn't. I doubt you will even see this as the post is now dated. However, I hope that you will consider developing a more tolerant attitude.


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