September 27, 2012

What you see you can't get

What happens when a family seeks out Family-Based Maudsley Treatment but can't find it?



LauraCollins_US

Moderator
Registered: July 31, 2007
Posts: 5,613
  #3 
Jan,

This is the reality. There is very little FBT out there and even fewer who have experience and skill offering it. It is kind of like we are living at the early days of antibiotics, or germ theory -- the savvy parent or patient may well know far more about the issue than most specialists.

I feel bad, sometimes, for spreading the word on something that most families won't find and the knowledge of which may actually undermine their relationship with clinicians they CAN find. But 10 years ago it was nearly impossible and now it is somewhat available -- and part of that has to do with building demand and a knowledgable public. As more parents search for it, ask for it, and expect it more providers will become aware and get training. As more families turn away from those who can't offer it there will be a strong incentive for clinicians to get appropriate training. I think it is reasonable to say that in 2012 anyone treating child or adolescent eating disorders should be able to offer FBT. I think it is reasonable to say to a family that they can decide not to work with anyone without that expertise. This is not to say that the family should GET FBT, but that a provider who cannot is like a doctor who doesn't offer the range of antibiotics and keeps giving out less helpful ones instead.

But now we are at a stage where parents are justifiably perplexed, frustrated, and then angry not to be able to locate FBT. Parents facing what is probably the most frightening challenge of their lives should not also have to know to research treatment modalities BEFORE they consult clinicians or that they may be offered any number of un-supported treatments before they stumble on the one the experts say ought to be tried first. It's horribly unfair for those of us in the know to have to walk in and start over with each new clinician with the likelihood that the person will not be updated nor will they know they are not.

It's unfair but it is true. I like to think we're better off knowing even if we can't find the best fit, but sometimes I wonder if it just makes US a little more crazy-appearing.

What I'm long-windedly trying to say is that what you are observing is accurate, and unfair, and you are not alone. THere are times when I could just scream, frankly. For comfort, or at least rationalized misery, Google "Semmelweis Reflex" named for the doctor who first grokked that doctors going from the autopsy room to the delivery room were the cause of childbed fever but was ridiculed by his colleagues and disbelieved for years. (Don't read to the part where he dies in infamy and never gets to see the field realize he was right.)

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Laura Collins (Moderator and forum founder)
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9 comments:

  1. Still need to recommend what is appropriate. If we keep asking ... they will train. Demand and supply!
    Need more training programs ... Walt? Dr. Lock?
    GET READY!
    M.B.

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  2. Drs. Lock and LeGrange, in their updated FBT treatment manual published in 2012, say that they estimate they have trained about 1,500 professionals in FBT over the past decade. (p. 257) The trainings have occurred in the U.S., Canada, Australia, U.K., Germany, Italy, Austria, Brazil, Singapore, South Africa, and Ireland. I give them credit, and thanks. They are doing great work.
    Parents should ask whether a provider has received FBT training. If not, the parents might consider getting a copy of the Lock and LeGrange manual for themselves, and one for the provider, and then doing FBT together, using the manual as their guide. In other words, parents shouldn't necessarily let the professional's lack of previous training be an impediment.
    CB-US

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  3. I agree, and that's what we ended up doing. It's early days for FBT, still, and the parents may well know more than the therapist but as long as everyone agrees that it is a collaboration it really CAN be successful. After all, FBT empowers parents to use their special knowledge of the child, their ability to take control, and their natural desire to have the child go on to independence all make for mutual goals. Therapists also have special skills to bring to the "table" and if everyone is on the same page it's quite wonderful!

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  4. It can be really hard to break through that professional shell though. I took a copy of L&L to my therapist, who kept it for several months without even reading it, all the while arguing with me why feeding my child was a terrible idea! It's actually kind of hard to find an open-minded therapist, in my experience. After all, this is their profession--who am I to come in and tell them how to do their job?

    Especially when, thanks to their outdated training, they believe that I likely caused my daughter to get sick in the first place? How do you say 'ZERO CREDIBILITY'?

    I'd have been grateful to any clinician who would have read the book and worked with us. As it was, I was just happy to get my book back.

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  5. Sad but true. Heck, I spend a lot of time in the ED professional world trying to open eyes to this without great effect. First, you need someone who knows what they don't know. Then, you need that person to want to know. THEN, you need them to be open to what YOU'RE saying.

    We were fortunate to find that early on after a few false starts. I don't know what kept us looking, really - we could easily have just thought we'd found all there was.

    I can only hope that with a more literate parent population, and more trainings and discussion out there, that this will improve.

    I'll tell you what the people I know who've been convinced of a different attitude tell me: that at first they said "hell, no!" but were persuaded not by books or data but by MEETING people who had either been through it or were experienced with it successfully.

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  6. The manual does very clearly state that it is not a self-help manual, and that it is for therapists working with under 18s who have been sick for less than 3 years. In fact it instructs therapists to tell parents that there's no hope after 3 years (thanks L and LeG!). Despite all that, and a difficulty with the therapeutic speak of the manual, I am finding that it IS being quite helpful to me to go through it on my own and pick out those parts of it that are useful. However I'm an old hand at all of this and not the terrified guilty parent that I was at first and reckon I can wade through what isn't applicable and use what is. NO one should have to do this at first and yet there is such muddle and misinformation in the ED world that whatever the system of care locally, nearly everyone does.

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  7. The manual can tell us anything it likes. What we do with that information is up to us.

    While I usually wouldn't be for tinkering or "interpretation" of a treatment approach, in a sub-field with no standards in a field with no compass I believe parents and clinicians get to make judgements for the particular situation. They must, and they do.

    In this case, parents often know as much or more than the given clinician about this issue, if not psychology/psychiatry in general. Collaboration is both necessary and, well, therapeutic!

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  8. Because there aren't enough FBT therapists to "go around", is there anyway Skype mentoring could be done by a certified therapist for those that aren't? I know that is not ideal, but frankly, if I had a registered, non-FBT trained therapist I liked willing to work with my child it would at least be great to know someone was offering them support and advice that was certified and experienced.

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  9. Anonymous @6:04pm, there are a few who do offer this but due to US laws around offering psychotherapy it can be a bit thorny and this option seems to be less and less available. This makes me sad, because the LAST factor we should have to take into account, in my opinion, is geography.

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