Ten minutes until Customer Service opens


Yes, the forum is down. We're all locked out. I wakened to a list of "what did I do wrong?" emails asking why.

So, in the ten nine eight minutes until Customer Service opens, I'm sitting here considering the question I'd like to ask my readers before I go to Miami for the Academy for Eating Disorders conference:

What do we want from the professional ED world?

I know what *I* want, but what do other parents want?


  1. One thing? That they REALLY listen to families - ALL members of families, even when what they are saying doesn't fit in with their pre-conceived ideas, even when it doesn't fit in with what they've observed in their work so far, even if it doesn't fit in with what other families have told them, even when it doesn't fit in with the evidence.

  2. Information rather than salsemanship.
    When I was desperately seeking to learn about what my daughter's illness was and what therapies were available, each professional either passed me off or just handed me the promotional material for their own limited program. Had it not been for the Internet, I would have been in the dark about options, and up-to-date research.

    Less fragmentation in treatment teams.
    We were able to keep our daughter out of residential treatment by finding a therapist here, a nutritionist there, a doctor somewhere else and an occasional pychiatrist visit. I'm doing an awful lot of driving - but that's not the biggest problem, and I'm sure that others are putting on even more miles. I would just like them to talk to each other, so that my daughter doesn't hear three different opinions in one week about whether she has gained enough weight and whether she is ready for more independence.

    More support - and ways to find it! - for Family-Based Therapy, in all its forms (Maudsley, Kartini, or by any other name!)
    We live in a large city with a huge and sophisticated collection of health care providers, yet found practically no choices when we looked for a therapist who would provide FBT. And the prominent ED "Center" in our area would not offer any help at all unless my daughter went to live with them for three weeks first.

    Better and more sane insurance coverage.
    I know that providers would like this too. It baffles me that we were told our insurance would cover a three-week inpatient stay, but we are being denied for monthly 40-minute sessions with a nutritionist.

  3. That they stay current on evidence based practices, and that any bias towards one type of treatment that they have should not keep them from providing families with information about all available treatment options.

  4. I would like them to treat an eating disorder as any other illness-with evidence based, family-centered care. This is hard work for them, they have to keep up on the literature and have a very disciplined approach to therapy and they have to work hard to make the process family centered. But it would make a world of difference.


  5. 1. Statistics: program size, average length of stay, % re-admissions.
    2. Treatment philosophy, program goals.
    3. Definition of successful treatment.
    4. Periodic evaluations as to whether treatment goals are being met.
    5. Careful consideration when setting target weights, insistence that target weights be re-evaluated and adjusted regularly and based on individual case histories, not "normal" ranges on a chart.
    6. Understanding that behavioral symptoms can be the result of undernourishment and underweight.
    7. Integration of families into every aspect of the treatment process.
    8. Training and procedures for parents to follow when continuing care at home.
    9. Willingness to change procedures that are not working.
    10. Back up for parents when an ED related crisis arises at home.
    11. Willingness to help with insurance and referral issues.

  6. Four years ago at the AED conference, Dr. Thomas Insel, the Director of the U.S. National Institutes of Mental Health, gave a keynote address in which he urged the eating disorder profession to undertake some specific changes. http://www.bulimia.com/client/client_pages/nl_edr_18_4.cfm I would like to see a report from the AED on whether it has made progress in any of the areas discussed by Dr. Insel. In particular, Dr. Insel said "Treatment of eating disorders is a great example of how badly we have done by parents by separating individuals from families and blaming families for the problem. We need to ask for a day of atonement for past care, and we need to bring families into the picture and to make patient care more individualized." I would like to know whether the AED has made any progress in declaring a formal day of atonement and, if not, why not? Perhaps, Laura, you could ask the AED leadership this question when you are at the convention. Thanks

  7. As a sufferer, I think what is most important -->
    * A CONSISTENT definition of remission, recovery and partial remission --> These terms should NOT vary across studies, they should be consistent so we can COMPARE outcomes among different treatments


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