LE Therapist: Caveat Emptor

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kira66715
kira66715 Member Posts: 4,681
edited June 2014 in Lymphedema

The treatment of LE was brought to this country in the 1980's from Germany, and initially there was a Foldi Clinic model in NYC, where Robert Lerner MD treated patients in an intensive day program, utilizing therapists (primarily LMT's) that he trained with the help of Guenter Klose, Steve Norton, Joe Zuther--patients got two treatments a day and exercises. The Lerner program folded and the various lymphedema therapist schools were started by Klose, Norton, Zuther.

Additionally, the Casely-Smiths were therapists and trainers in Australia and they came to the US and trained therapists, and there are schools run by Bonnie Laskinski and DeCourcey Squire that utilize their training.

There are other schools, such as Chickly

And, unfortunately, there are weekend schools and a school that promotes the Leduc model--which is supported by a prominant LE researcher, head of the Lymphatic Research Foundation.

I'm sure I'm missing some schools--I know there's one in Pittsburgh.

A reputable school will train with a 135 hour course.

BUT: I got trained, and I found that after my training, there was zero support from the training school and one intensive week doesn't guarantee a good clinician. There's a steep learning curve, and if you don't have clinical support, and/or you practice in isolation, you can provide poor care, with good credentials.

The Vodder School does hold regular recertification classes where therapists have to demonstrate that they are utilizing correct technique. To my knowledge, they are the only school that physically checks on their therapists after initially training them.

LANA is just a test. They screen the test takers, to make sure they took a full course, but recently, due to dwindling numbers of people taking the test, they dropped the requirement that you've practiced for a year. So anyone who's fresh out of a course can take it.

Also, in medicine there are "turf battles" and the APTA (physical therapy association) won the one about LE therapists: at this point, no RN, MD or LMT can be reimbursed for LE therapy. And the APTA feels that any LE therapist, without additional training, can treat LE, despite the fact that studies of their curriculum show they are not educated to do so.

The APTA doesn't recognize LE training and doesn't include it on certificates for PT's, only APTA sanctioned specialty training goes on the certificates.

If you reduce the amount of providers, you increase the demand: works for the APTA, and not for us patients.

Recently women have posted about some negative experiences they've had with LE therapists, and I posted a rant on the massage thread.

I'll put it here, with edits--but bottom line--there is no oversight for LE therapists and good credentials don't automatically guarantee clinical excellence.

Go with your gut, and know what LE therapy should entail, and if you're not getting it, try and find a way to get what you need/deserve

http://www.stepup-speakout.org/treatments_for_lymphedema.htm

There was a great article on the education of medical students that said the truly incompetent have no clue and aren't concerned, while the competent students worry about the quality of their work.

Applies to LE therapists as well, IMO

Edited rant:

Last year I took the LE therapy course (became a CLT) and it's intense--135 hours, about 40 on the web and then 9 days of 12 hour training, but IMO doesn't fully prepare anyone to care for LE patients. and there's no support after the marathon 10 day experience.

In my training class there were women who have really approached this professionally and reach out for help as they realize their limitations, and there were women who clearly going to have a little knowledge and without a good mentor and a sense of their limitations, could be trouble.

Taking a LE certification course is like going to medical school, and not doing an internship and residency, and going right out and working on patients.

The stance of the APTA is that any PT can treat LE, despite the fact that studies of their curriculum show they're not trained in LE. The APTA doesn't recognize LE training--they put additional APTA sanctioned training on the PT's certificates/diplomas, but not LE training.



And LANA is just a written test, which doesn't reflect clinical expertise.

My LE therapist is both Klose and Vodder trained, and as I had a hysterectomy recently and we both weren't sure how to resume MLD, and she has 20 years experience and I'm certified! , we reached out to the head of the Vodder school for guidance.

What I'm trying to say is that quality varies and there's no over sight of LE therapists, so do trust your gut,


I went on my LE PT odyssey as my LE therapist (a LMT with 20 years experience who can't bill insurance) wanted a PT to address my cording, and highly trained PTs provided substandard and possibly harmful care.

I have received some really lousy treatment at the hands of "well trained" LE PTs, and one of those was a woman I saw 3 weeks post op with a ton of cording and she had me over exercising my arm, and I developed LE. It wan't all due to her, but she contributed, and despite her LE training, had zero concept of how to treat LE--I had a big seroma, was just two weeks out of surgery and she had me doing repetative motions of the arm.

Carol has found studies that delayed stretching decreases LE incidence and Jodi Winicour at Klose recommends no reaching above the shoulder for 10 days. This woman set me up for LE.



There is zero quality control: LANA just gives a single test and flat out refuses to "police" their therapists when concerns have been raised to them, the NLN just collects money to have them advertise on their site--they don't care at all about quality, just the dues to advertise, the Lymphatic Research Foundation medical director is associated with a weekend school that is disreputable, the NALEA training schools (Klose, Vodder, Zuther, Norton), with the notable exception of Vodder don't support or check on the therapists once they've completed the one course.

However, Joe Zuther has turned out to be a wonderful resource for LE patients, with his lymphademablog--full of great information.

I hate to be so negative, but that's my experience. My gyn oncologist wanted to consult the LANA therapist at her hospital, but as I'd seen her as a patient, and she literally would touch me--I was already wrapping and didn't have a 2 cm difference, so she immediately dismissed me and wouldn't even look at my cords, and told me to stop wearing compression (?!) and had me doing Therabands without compression, which caused me to flare-- and the other LE therapists who I met at my training hold her in low regard, I directed my surgeon to a different group within her overall hospital network for the future.


Sorry to rant, but lately I've gotten very discouraged about the institutions that are out there for LE--regarding their concern for patient care.

Comments

  • Anonymous
    Anonymous Member Posts: 1,376
    edited June 2013

    Kira Im going to thankyou for your detailed post even though at this point Ive only skimmed through. I see "sorry for rant" at the bottom here but I know even before I read it you wont need to be sorry.

    Your research and support is appreciated!

  • cookiegal
    cookiegal Member Posts: 3,296
    edited June 2013

    You are right.

    Here is an idea.

    There are all kinds of websites that are like a medical version of Trip Advisor. (I won't say yelp since it has issues.)

    DocGrades or something like that.

    People post their comments about doctors, and usually I have found them to be somewhat helpful.

    If the LE organizations won't do it maybe it is time to start doing it ourselves.

    What do you think?

  • cookiegal
    cookiegal Member Posts: 3,296
    edited June 2013

    Honestly even within one hospital the level of training is inconsistent.

  • kira66715
    kira66715 Member Posts: 4,681
    edited June 2013

    Cookie, that would be great, I know those anonymous sites pose issues, but how do we protect ourselves? And support good therapists.

    My gyn onc asked me "who is the best LE therapist" and I told her, but I learned that information through being a patient, becoming a CLT and seeing a lot of LE when I worked for the rad onc's and hearing about a lot of therapists.

    Personally, I kissed a lot of frogs before I found my great LE therapist.

  • cookiegal
    cookiegal Member Posts: 3,296
    edited June 2013

    so could it be added to step up speak out?

    Honestly I don't think people trashing therapists unfairly is going to be a problem, good ones are hard to find

  • kira66715
    kira66715 Member Posts: 4,681
    edited June 2013

    Cookie, that's exactly what Binney and I were thinking, not so much ranking individual therapists but putting the reality of therapist training and oversight out there, and getting a SIMPLE (really sorry for the long post) document for bringing into therapy to make sure your needs are met.

    When I took my CLT course, there was a PT whose hospital "volunteered" her, and she wasn't thrilled about it, and I was kind of upset that a hospital would force a PT to become a LE therapist, but, we worked together and she was awesome. A real professional who took it seriously and when I would do MLD on her, she'd tell me straight up what I was doing wrong. And we've kept in touch and she is doing a great job, in a community that really needed a good therapist and she reaches out for help and she's studying for the LANA exam. A real inspiration.

    And there was a fruit loop of an OT who I really hope they flunked. Should never touch a patient.

    I think SUSO needs serious updating and some patient friendly handouts. Great idea.

  • Jeannie57
    Jeannie57 Member Posts: 2,144
    edited June 2013

    I saw a PT after my bmx and she was on the cancer center's list of LE therapists in the area. NOT. She showed me her binder of horrible instances of LE with before and after pictures. She told me the basics of lymphedema. But when I asked her about MLD massage I could do, I knew in my gut there had to be more to it than what she told me. My radiation doc referred me to another one, an OT, because I told him I wanted more education. This OT is great and I feel I am getting the full benefit of LE therapy and education, finally. I don't know where she got her certification. Since I have LE in both arms and have to wear garments all day, I am very grateful to have someone to go to for advice and help. I did report my disappointing experience to the cancer center but I don't know if they've removed her from the list.

  • hugz4u
    hugz4u Member Posts: 2,781
    edited June 2013

    I think a "rate your LE therapist" in suso is a great idea, as long as it is clear that we are not accountable if our recommendations "go wrong" It does happen at times that sometimes a good therapist flubs up unfortunately.

    Yes, I worry about those therapists that are working in remote areas and don't have enough experience or keeping up with their LE upgrading practices and then someone waltzes in and gets wrongly treated. Yikes. I like my therapist to be used well in the community because lots of practice can brings better experience.

    Personally I try to do good research before I hire any kind of a therapist and I aim for ones that instruct in their field and practice also. My Vodder instructor LE therapist is wonderful. I would love to rate her for my area.

    Good thoughtful article Kira.

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