January 21, 2012

Maudsley approach: "cure is now completely expected"

When a media piece gets it wrong about eating disorders the harm is incalculable, but when a reporter GETS IT and TELLS IT WELL lives are saved, and this article will save lives:

Family Ties Helping Teenagers Rise Above Anorexia

Thank you to the young man and woman in the piece, their parents, their clinicians, The Age, the eating disorder specialists who developed Family-Based Treatment, the advocates out there spreading the word, and to Jill Stark, the reporter.

Families need to hear that there really *ARE* exciting changes in the treatment of eating disorders and that if they aren't being told about these ideas they may not be getting the best care.

"At the Royal Children's Hospital, admission rates have dropped by 56 per cent since the treatment started in 2008. Of the 83 per cent who complete the six-month program, 97 per cent fully recover.



The results have astounded the eating disorders team, who say it has ended the revolving door for patients admitted for refeeding through a nasal gastric tube, discharged for outpatient psychological therapy, only to fall ill again. Some were hospitalised 20 times a year. The average illness duration was seven years.



Now, by involving the whole family, recovery in six months to a year is common. Readmission rates have dropped by 75 per cent. More than 200 patients have been through the program - the youngest was nine.

''Before, we were not really focused on cure because we saw that so infrequently for those who were very unwell. Cure is now completely expected,'' says Professor Susan Sawyer, director of the Royal Children’s Hospital’s Centre for Adolescent Health."

P.S. Now, I know what some of you are going to say, and let me stop you. No one is saying that Maudsley "works for everyone." What we are saying is that FBT/Maudsley recovery rates are far higher than anything else we've got in the toolbox. If you find an antibiotic that helps the majority of people you don't argue about it on the basis of it not working for everyone you get to work finding the 2nd line and the 3rd and inevitably those ideas that works better than FBT  - not defending what we know doesn't work for most. If you want to argue about the effectiveness of FBT compare it to something, don't just defend the need for other alternatives; we already know that. 

10 comments:

  1. Great story!!!!! I think it's important to continue to work to develop effective treatments for those who are not helped by Maudsley but Laura I agree 100% that it should be the first choice in most situations, just because it has the best chance to work! The problem with the naysayers as I see it is deciding a priori who will be helped and who will not-witness all the psychologists saying that they just don't see many families who could do it, etc...In our case, we were told that after months of problems with individual therapy that FBT would be bad for our d because of our family and it was contraindicated over residential. But that was totally wrong-FBT worked great and I now see that we should have been offered FBT before anything else. Parents love their children so much that most of us will do whatever is needed to help our kid and we should be given a chance to do so...And people who say that's just not true have probably not asked parents in the right way or have made assumptions that just are not true.

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  2. I too applaud this piece of journalism both for giving hope and for telling it straight - this isn't some kind of magic wand, it's a challenging, demanding treatment for a challenging, vile illness. The great thing about it is that it is much more likely to work for the same people (I hardly think that the hospital's client base will have changed in the last three years) than prior treatments. Why that is isn't yet fully understood and much work still needs to be done both on refining the treatment, adapting it so that it can give hope to more families and on those second and third line treatments. As someone who wasn't successful with using the method I'm passionate about work being done on all those issues. However that doesn't detract from the very real chance of ending this illness that these programmes are giving the majority of sufferers who are treated with them or from the duty of service providers to look carefully at what they are offering to their clients and work towards always offering the treatment that is most likely to work.

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  3. We have got to get the treatment teams to see this as a first line of treatment. That's where I see the biggest issue. It is still often NOT a part of the first line approach and enough parents of young adults and extended families deserve the chance to have their family support group educated and supported on the most effective form of treatment.

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  4. This makes me want to cry with joy. This is a great start. Just using the words- family-based treatment will change the way professionals, families, sufferers think.

    Thank you Laura for another great post!!

    Fondly,

    Karen

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  5. Great news! So glad to see Royal Children's Hospital seeing a 97% recovery rate with FBT!! That is something that all clinicians need to be paying attention to. I look forward to seeing this with bulimia as well.

    Thanks for sharing this great news!
    Becky Henry
    Hope Network, LLC

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  6. Taking a huge, huge risk here.

    I've never commented on your blog before but have read various posts with some regularity, and first of all, I can't help but admire your strength and voice in helping sufferers and their loved ones. It's an important voice to share. That being said, so is mine -- so are all our voices -- and I'd like to offer my experience with Maudsley.

    I'm so grateful for the success that you and others have had with Maudsley treatment -- really, I am. And, as you so commendably state in your disclaimer, you're well aware that Maudsley doesn't work for everyone and that other alternatives are necessary. The problem for me, however, and others that I've met, is that Maudsley was given as a first line of treatment, and not only was it ineffective, it was dangerous. It drove me further and further into my illness.

    I'm not sure if the comment section is a place for "personal stories," (although I would have no problem sharing) but without too much being said, Maudsley taught me the necessity of lying, manipulation, and it made me distrust my parents (later Maudsley-based hospital doctors, because I was too far gone in my brain to respond "appropriately" to the standard carrot-and-stick approach laid out in Maudsley). It strengthened the eating disorder voice through literal force-feeding with minimal therapy, and I "learned" (wrongly) that AN was the only thing I could hold onto during those days as the rest of me felt neglected, ignored, and invalidated. Granted, I was very ill, but when the only thing people bothered with was my weight, I thought my weight WAS the only thing worth bothering with. For me, Maudsley is a large part of the reason I still struggle with anorexia nearly a decade after first being introduced to the method.

    Some people don't just "not respond" to Maudsley, they respond negatively to Maudsley, and it is these people that I worry about, and for whom my heart breaks, when I read about Maudsley being offered over and over again as a "Plan A" to families seeking treatment. Again, let me reiterate: I know Maudsley works for many (perhaps even the majority of) patients, and I am so, SO glad that something does. I only begin to fear that when Maudsley begins to be touted as a miracle cure for eating disorders, doctors will fail to mention "negative reactions," just as one might mention contraindications with a new antibiotic (your pill metaphor was apt, and brilliant, so I'm using it now). Some people are physically allergic to medications. Why would a therapy be any different -- a psychological allergy, if you will?

    Again, this may have been a totally inappropriate medium to set up a second, somewhat contradictory soapbox to your own -- I do agree with a lot of what you've had to say in other posts -- but I just wanted to put this out there, with all the respect (seriously) and admiration for you and what you do. I just get... scared, I guess. Scared for those "allergic" to Maudsley. I imagine it's the same fear you have when you see Maudsley being immediately ignored or passed over in favour of more standard treatments. That shouldn't happen either. We just all need a louder, longer, global conversation about eating disorders -- their causes, treatments, and effects.

    Stepping off my own soapbox,
    Amanda

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  7. Amanda,

    Not only do I agree with you, I don't know anyone who would not. We agree that those who are not moving forward in recovering with FBT need alternatives. FBT may not be the right approach to START with for a family. I don't think anyone believes we should just apply a cookie cutter approach out of a book and that's all you get - I sure hope not and I'd get on your soap box with you if they did.

    All I want is for families to have the opportunity if it is appropriate. Right now, that's not true for most families - they aren't told it exists and it doesn't exist in most communities or offered by most providers. Most of the families who COULD benefit never get the chance!

    We need alternatives, choices, adjuncts, different levels of care, different types of expertise - and we need these available from diagnosis to recovery and beyond.

    BUT. (sorry, but I can't not say this) The principles of FBT apply for all treatment: food is medicine, no blame for family or patient for "causing" the disorder, and specialized professional care is very important. No treatment should neglect the first or engage in the second or forget about the last. And also this: the patient isn't going to like it, understand it, agree with it, or cooperate with treatment in any form. Successful treatment is VERY DIFFICULT and uncomfortable and traumatic even in the best of circumstances.

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  8. My mom took the Maudsley Approach upon my eating disorder 3 years ago, when I was 20 and anorexic. I have to say, I applaud this concept. In the beginning, I'll admit I was VERY skeptical. Because not only did my anorexia have me convinced I wasn't sick and didn't need to gain weight, but it also had me convinced that IF it was in fact true, I couldn't trust my mom because she's not a professional so she'll only make me fat. This was clearly the anorexia thinking for me. I stand behind FBT firmly. I was amazed that after only 3 days of FULL nutrition and enough calories (compliments to the chef/ mother/supervisor), my irrational and obsessive thoughts and fears around certain foods began to decrease ever so slightly. 3 days! Isn't that incredible? I mean, what a concept. After various periods in and out of eating disorder treatment centres for 5 years, my mom read a book that simply suggested her anorexic daughter needed to eat. (Laura Collins, you are a guru in our eyes) I am thoroughly convinced, that a person with anorexia who is underweight and malnourished will not respond to psychotherapy unless an adequate amount of nutrition and calories are being consumed CONSISTENTLY and simultaneously. It worked for me anyway. I haven't relapsed once since FBT. A sick body makes a sick mind. Restore the body, and the mind will begin to restore itself. Maudsley Approach saved my life.

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  9. I just want to say that the Maudsley Approach saved my life. I'd been in and out of eating disorder treatment centres for 5 years, until my mom read about FBT in your book "Eating With Your Anorexic." (Laura, you are a guru in our eyes.) I mean what a concept, right? My mother's anorexic daughter simply needed to eat! And I did. 6 times a day. Every day. For a year. Now of COURSE, it was not easy. I had anorexia after all. But I must make the point of mentioning, that after only 3 days of FULL nutrition and enough calories, the irrational and obsessive thoughts and fears I had around food and my body began to slowly decrease. On day 1 at breakfast I was kicking and screaming and refusing food, and by day 3 I had accepted that I was in fact sick and perhaps needed to gain some weight. ( I needed to gain a lot, but the fact that I even saw it as something I was willing to do, was amazing. Thanks to food.) I have been weight restored now for 3 years. The longest I have gone without a relapse. I am happy and comfortable with my healthy body.

    A sick body makes a sick mind. Restore the body, and the mind will begin restoring itself. As someone who has been numerous times to eating disorder treatment centres, I will state that psychotherapy does not work on an anorexic patient, unless FULL, CONSISTENT nutrition and weight gain/maintenance is happening alongside.

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  10. Oh, Eleanor - this is so moving. I believe you are part of a growing cohort of patients who in an earlier era would have been consigned to longterm illness or worse and are now able to go on in life well and healthy. You and my daughter and many others needed help that you weren't in a position to give yourselves or seek for yourselves for that brief period. Twenty years ago you were unicorns: no one believed that patients would respond this way. Now, I believe you will become the brilliant first wave of a new era of optimism and freedom.

    THANK YOU for posting this. It means a lot to me and many other parents who are struggling to believe our dear loved one is still in there and needs us to do really difficult things!

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