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Difficulty with Practitioners...

PostPosted: Tue Mar 23, 2010 4:56 pm
by paulienme
Factors combine for many of within these forums that are both devastating and crippling. If I may share my concerns, and to request some feedback, I would enjoy knowing how others feel and also some stern advise. I have gone the gamut from rants to the bended knee -- Others who suffer the same may have some more to add.

I am at present attempting to secure MLD therapy and first evaluation with a practitioner. Inquiry as to the process appears to have caused those with whom I have spoken to forego an evaluation. They simply will say at close of the first encounter, when I initially call, that someone will call and then they can take an appointment. Please note I already have a physician’s referral and therefore I feel I meet criteria they require. The problem seems to be with questions that I present, though to me I believe them to be completely general in scope. Perhaps it is their accumulation that generates such response as to discourage even allowing initial appointment.

Much of my inquiry directly regards the pre-qualifying process, and is therefore about their rate of compensation. It is only through this information -- within an approximation -- that I can get a feel for what I will have to pay after insurance completes its obligation. I then proceed to ask what percentage of improvement (e.g., girth measure) is considered satisfactory to meet program goals, if it’s long term, and what is considered such. I also ask whether or not this varies depending upon circumstance, and also unique condition. These are to me so elemental as to be basic-basic. I also ask if return self-referral (with reference to house-rules and after a term of treatment) is permitted, should symptoms recur, and, if so, to what extent they can qualify this in advance. I do not ask whether and if these questions are too specific, as this in itself would easily be misread.

All that I want to know is where I will stand, within reason, financially.

Having now been the subject of a costly medical error, I want to how much more debt I can expect to incur -- within an approximation -- and whether or not the efficacy of treatment, balanced against short (as well as long) term cost, will likely yield sufficient results to render worthwhile what for me is an out-of-pocket and major financial commitment. As I must have assistance for many common tasks, I am required to consider travel involved as well. This is especially as there exist, regardless, no options of less than a two-hour drive.

This is not an attempt to lay blame for errs in communication, as much as I feel I have been wholly proactive. With the exception to one possibility (having tried several others), I continue to try securing a first appointment, and, at an apparent standstill.

Is anyone else having this kind of problem???…and, if so, p-l-e-a-s-e, how is it best overcome? Is it communication, or, considering some kind of bias against treating others' mistakes, something that I (for one) might rather not think about??

Re: Difficulty with Practitioners...

PostPosted: Wed Mar 24, 2010 9:33 am
by patoco
Hey Pauliene

I hope I spelled that correctly. Super welcome to the family :!:

I've asked our resident therapist, Tom if he can provide some answers here in terms of dealing with therapists and with what you are/have dealt with.

He'll be online a bit later today, but I promise he will answer and knowing Tom, he will do all he can to help.


Re: Difficulty with Practitioners...

PostPosted: Wed Mar 24, 2010 4:25 pm
by Cassie
Paulienme, I can taste your hurt, and I'm so sorry. All of us here do share that pain, even if our specific circumstances are all unique. Lymphedema is a hard diagnosis to deal with, and the sense of abandonment by the medical profession is especially rough to handle. I think your questions of the therapists are entirely reasonable, even sound -- but sometimes we can't help but sound uncompromising and even defensive after all we've been through. You always hope the professionals understand that.

And maybe they do. My own excellent therapist, with whom I have a wonderful relationship, was hard to find and get an appointment with, through no real fault of her own. She can easily get swamped and neglect to call me back or relay a message for me even now. It's exasperating, but what works for me is to be persistent. In an ideal world I wouldn't have to do that. But then, in an ideal world we wouldn't have lymphedema either. Persist, Paulienme -- once a therapist gets to know you and understands why you're so concerned about the costs (and even perhaps why you're not willing to be blindly trusting anymore), the relationship can grow into one that's not only beneficial but even supportive. Maybe even mutual.

Call again. Ask to talk directly to scheduling. Call the next day. And the next. You can do this -- it's worth it to get the therapy we need to take back some control of our lives.
Keep us posted, please,

Re: Difficulty with Practitioners...

PostPosted: Thu Mar 25, 2010 7:12 pm
by erivertown
Hi Paulienme and welcome to the group.

First, I want to thank Pat for alerting me to your concerns and, secondly, I want to thank Cassie for her compassionate and eloquent reply. I feel she has addressed your feelings with getting a response from whomever you called and so I won't add much to that.

You have very valid and important concerns and I'm going to try to address them individually. Time may not allow me to go into real detail on this and so forgive me if it seems too brief. I can dive into greater detail as time allows.

First, the issue with not getting an appointment. From your perspective, this almost appears to be a brush-off. I agree with Bonnie that you need to be persistent in getting an appointment. You have a doctor's orders and so in my opinion you should have been given an appointment on your first call. Depending on how busy the therapists are, you may have to wait for awhile before you actually get into the clinic. Be patient and most importantly keep your appointment and on time. Patients who are given an appointment then don't show and don't call are more likely to have difficulty getting an appointment the next time around.

Secondly, you pointed out that the problem with getting an appointment seems to be related to the questions you ask. Get the appointment first, ask the questions later. Staff and therapists are busy and seldom have the time to spend on the phone especially if they are seeing patients. We're often on a very tight schedule and can answer some questions briefly but rarely have the time to go into detail with every question. Granted these are valid questions but there is a time to ask them and during the time you're trying to get an appointment set up is not the time to ask most of these questions.

When it comes to billing issues and patient payment responsibilities, those questions are best directed to the person or department that manages patient billing or patient accounts. Ask to speak to the person who does billing for information on billing costs and what your responsibility will be. You will need to have your Medicare and/or insurance cards available. Most private outpatient facilities do not accept Medicaid unless they are connected with a non-profit hospital or rehab facility.

As for determining how much it will cost you for therapy in terms of co-pay or cost share, that is virtually impossible to determine beforehand unless you are able to set up a payment budget with a facility or if you have a set co-pay per visit amount. Again, a billing specialist can tell you this.

The reason it is almost impossible to determine how much your therapy will cost so you can budget a head of time is because there are many, many variables that come into play. What insurance you have, what plan you have, what state laws apply, and so on. Then you have to consider what treatments are done at each visit. Depending on what the therapist does during your visit determines what can be billed and for how much. For example, if the therapist does 15 minutes of MLD, 15 minutes of wrapping, and 15 minutes of exercises, each of these treatments is assigned a specific code which carries a specific charge. Perhaps at the next visit, the therapist may do 30 minutes of MLD, 15 minutes of wrapping an no exercises. The total amount billed for that visit is going to be different than the amount billed for the previous visit.

Another factor that comes into play is what the insurance company approves versus what they say they will pay. We often are told that the insurance company will pay so much for a visit and then when we get the remit back we find they paid a different amount and either leave more for the patient to pay or less for the patient to pay. We often don't know what we will get paid until we actually get paid.

Yet another factor is the type of therapy facility you go to. Some get more, some get less depending on how they are credentialed with Medicare and insurance companies.

So you can see, it isn't easy to answer your question of "how much will it cost me". The bottom line is: We just don't know.

So the first thing you need to do is contact the therapy department or facility's billing specialist or billing department. Give them your insurance information and ask them to confirm what your insurance will cover and what your portion in terms of percentage or co-pay might be. Don't ask the therapist because most of them are not involved in the billing process. Once you have some idea of what your insurance will cover, ask if you can have 3 or 4 visits and then be put on hold until they can file the claims for those visits. It may take anywhere from 2-6 weeks to get an answer. You will then get what is called an "EOB" or Explaination of Benefits from your insurance company. It will clearly state what the charges were, what the insurance (or Medicare) will allow, what they will pay and what your responsibility will be. You can NOT be charged more than what the EOB states your responsible portion of the bill is. If your EOB says that your portion of the charges is $50 for those visits, then that is all you will have to pay. This is the only way to get some idea of what it will cost you to continue your therapy sessions.

I hope this has been of some help. If not, continue to ask and we'll do what we can to help you through the process.

Tom Kincheloe, OTR/L, CLT

Re: Difficulty with Practitioners...

PostPosted: Fri Mar 26, 2010 1:35 pm
by paulienme
Tom, Cassie and Pat,

First I would like to thank you for making me feel welcome. It means so very much. I sense you are right in what I should ask and say initially calling in. I do try to be reserved. I guess I have been put off by things that occur after they ask their questions. I don't mean to come off defensive. Having had cancer surgery, and knowing LE an established -- though much undesired -- consequence, they naturally want to know details (there do seem to be assumptions, however I can‘t be sure). Presumably this helps completing their records and determining course of treatment.

The choices I have are either to tell the truth, or simply evade the question. When I respond they go into questions which seem to allude to logistics of (my) apparent survival and certainly my prognosis. In short, I did not then, nor did I ever have, cancer. In any case, data had been misread and resulted in both unneeded surgery and current forthcoming conditions (there was clinical evaluation of LE and evidence of Erysipelas, yet at the time and prior to surgery, no bouts of Cellulitis). Needless to say, it rather has been a journey. The surgery was open-chest thoracotomy, incidentally, not micro or VATs -- neither of which preceded the major procedure.

I didn’t explain that one clinic had scheduled evaluation. After initial exam she said my condition was sufficiently well established and that we could begin MLD regimen during the week that followed. Bloodwork, which was current, determined there was no current existing infection, such to preclude the treatment. In this particular exchange I didn’t present the battery of questions, as later I tried with others and feeling brushed aside. Getting to scheduling sessions was difficult owing to winter snows, and so I decided it best, given the long commute, to wait for a break in the weather (which for our region, literally, only of late occurred). In then subsequently trying to establish a firm and a set appointment -- even with new referral -- I began to encounter the problem. It was odd they were uniformly willing, when I first put out feelers…generally saying I could come in that week. I needed only to provide my personal data, and with that we could then schedule. I was more than willing to go through the reevaluation process, confirmed (on my end) as agreeable to insurance in final days of the previous calendar year.

Perhaps this is more than one frankly should let hang out. I hate to suggest there is bias against any survivor of cancer, even wrong-diagnosed, and especially one presenting with complications. And yet at this juncture, I feel that I see it even among physicians. I am not driven to indict, I simply am left unsure where I am now to go. I feel in the broadest sense, and given the rural location, I am channeled to hospital triage for only acute conditions. Having said that, I doubt that I am alone. I am at this time in process of securing a firm diagnosis through a nuclear and vascular specialist two hours from my home, and which will involve submitting to more procedures (including perhaps invasive). I have to tell you, getting that appointment was an exercise in omission, such as I am not used to: it was incumbent on me to relate (skew, if you will) events in order to gain some interest. I had hoped against hope I might avoid all that based upon local referral and other -- established -- vascular MD history.

As I take an objective look, having also tried a gradient pressure pump (referred by vascular doctor), it seems at this point there isn’t a lot I can look forward to.

In my person and daily life, I try to maintain an agreeable disposition, attend to my hygiene and person, and try to remain optimistic.

God bless and thank you again for encouraging me nonetheless, and for all that you do for others. I will use greatest tact in how I approach practitioners on all levels. Avoiding all pretext, I try to just find the words.

Yours Truly,


Re: Difficulty with Practitioners...

PostPosted: Fri Mar 26, 2010 4:30 pm
by Cassie
Pailienme, that is a truly startling story. I sure do hear you about the apparent bias against those suffering with lymphedema. A few years ago a lymphedema researcher, Dr. Elise Radina, conducted a survey about the patient experience of lymphedema, and she and her professional colleagues were surprised to find that one of the major complaints of patients was "feelings of abandonment by the medical community." As you can guess, those of us with lymphedema were not in the least surprised. There are reasons for this that may not be obvious until you begin to delve into the subject (which you would only do as a patient). One issue is what Dr. Stanley Rockson of Stanford University discovered in his research into the teaching of the lymphatics in U.S. medical schools. He found that the average time spent on teaching the lymphatic system during a four-year medical education is 15 minutes. Clearly, our doctors -- whether oncologists, surgeons, or vascular specialists -- are poorly prepared either to diagnose or to supervise the treatment of our lymphatic disorders.

Beyond that, of course, if we wonder why they should continue to be ignorant of this condition even when they've seen it in their patients, we can only speculate that surgeons and radiation oncologists, whose treatments of us are responsible for the condition developing, are not eager to recognize its significance because they're concerned about litigation. But since lymphedema is in fact so little recognized, litigation over lymphedema maltreatment, even after serious mishandling, has never once been upheld in any court. (I'm not implying you're interested in suing anyone, as you've stated otherwise -- I'm just trying to share with you some of the realities of our shared diagnosis.)

This ignorance is further complicated by the fact that most medical personnel do think they know all about lymphedema, when all they're likely to know is not to do bp or injections in a woman's arm following mastectomy with node dissection. People who think they know it all are impossible to teach, so the ignorance goes on.

The end result of all that is that doctors rarely take any responsibility for oversight of a patient's lymphedema progress or treatment. If we receive therapy that is inadequate, the doctor has no way of knowing this and simply assumes "it didn't work." They have no further suggestions or resources, no way of judging appropriate treatment on an individual basis, and too often very little interest.

On another front, lymphedema therapists are in a precarious position, professionally. There are no mandated training standards anywhere in the U.S. for lymphedema therapists, so anyone with OT or PT or therapeutic MT certification can freely practice lymphedema "therapy" whether they've ever learned anything about the lymph system or not. This makes it very hard for patients to find fully qualified therapists, and it is also very hard to get any review of inadequate or even damaging therapy by the boards of the OT or PT certifying organizations, since few if any of those on their boards are familiar with lymphedema treatment. For the same reason, well-qualified lymphedema therapists are few and far between, and if they are part of a larger PT or OT clinic, they are not supervised by anyone who is trained in lymphedema therapy, so have little or no accountability to anyone. If they engage in inadequately-researched modalities, take short-cuts, or are plain lazy, no one is likely to be the wiser. Not even the patients, since how are we to know what even our doctors don't?

In the U.S. today there are a few doctors whose special interest is lymphology. They are able to diagnose even very complicated cases and to prescribe adequate individualized therapy and to direct patients to therapist who are fully trained to do just that. Short of that, we have sites like this one where patients help other patients understand what is proper treatment and what is less than that, so we can advocate for ourselves in this lymphedema wilderness.

All that just to say: yes, there most certainly is bias against cancer veterans (rightly or wrongly diagnosed) who develop lymphedema. Fortunately that does not make proper treatment and even THRIVING impossible, but it does make it a bit of a challenge. Understandably you have already had more of a challenge than anyone should have to deal with. So if there's any way we can help you with finding appropriate care we sure would be happy to do that. Tell us how we can help.

Re: Difficulty with Practitioners...

PostPosted: Fri Mar 26, 2010 6:41 pm
by erivertown
Cassie, extremely well said.

Paulienme, it would help all of us if you would be a bit more simple and less technical in your writings. We had a bit of difficulty trying to understand some of what you were trying to say. I compliment you on your remarkable command of the English language but I fear that many of us are not quite as gifted language wise. At least I'm not! LOL!

I can not add to what Cassie said other than we are indeed all here to help in any way we can even if only to provide a listening ear.

I'll be glad to help with any issues you have concerning therapy and therapists but I will leave it to Pat, Cassie and other folks here who have "been there, done that" to give you guidance from a patient's perspective. You are in good hands here.

Tom Kincheloe, OTR/L, CLT