Managing Your Own Healthcare: How Many People’s Jobs Do I Have to Know How to Do?

My personal Tricare experience: I have received several years of harmful care, after decades of inadequate care, from Tricare.

Recently, my soon-to-be-former PCM defended his negligent/health-threatening care by telling me that I had not been aggressive enough in managing my own care.  I countered that aggressively managing one’s own healthcare is very difficult when one has a chronic debilitating condition (especially a condition that affects one’s cognitive abilities).

But today I’m having a good day, abilities-wise, so let’s talk about fighting fire with fire.  You want me to aggressively manage my own healthcare?  Look out, buddy, you just summoned a pissed-off veteran, and you’re about to regret it very, very much.

A friend of mine has a saying about dealing with others, especially those who work in any area interacting with clients/customers.  When encountering roadblocks in daily life having to do with the ignorance, apathy, or incompetence of others, my friend asks exasperatedly, “How many people’s jobs do *I* have to know how to do???”  (Meaning, since you can’t do your job correctly and give me the information and assistance I need, I will have to learn all of the information, procedures, laws, regulations, etc. myself in order to get the result I need.)

We have decided that the answer to this question is “ALL of them.”

ALL of the People.  ALL of the Jobs.

To be fair, there are some *awesome* people in this word who like their jobs, know how to do their jobs well, and like helping others.  When these magical unicorns cross your path, you do whatever you can to make them stay in your life, and you let them know how appreciated they are.

For the Non-magical-unicorn days, which is most of them, you learn how to do ALL the jobs.

Alright, soon-to-be-former PCM, you want me to aggressively manage my healthcare?  You got it.

Today I visited a Tricare Patient Advocate.  I walked in to the largest MTF near me, went to the information desk, and asked for the Tricare Patient Advocate and they hunted around until they found one, who came out and spoke to me face-to-face.

[I had previously located a Tricare Patient Advocate email address for a local advocate.  I emailed in November, and am still waiting for a response over five months later.  (Not the same advocate as the one I spoke to today.)]

The Patient Advocate gave me the contact information for the DoD’s Interactive Customer Evaluation (ICE).  I am going to contact ICE and provide “customer evaluation” on the negligent care I have been receiving, such as waiting 27 months for an MRI/Arthrogram of my wrist, even after I specifically told my soon-to-be-former PCM that my shoulder orthopedic surgeon suspected that I could have a torn ligament in my wrist, and then requested that my PCM submit a referral for an MRI and Arthrogram, which he did not do.

I will tell them that I gave up on ever receiving the care I needed from Tricare, and instead requested an MRI/Arthrogram from the VA, which I received within 6 weeks and which confirmed that I have *two* torn ligaments in my hand/wrist.

There are a few other things I will discuss with ICE about the inadequate care I received from this PCM…

But, next, after speaking to the Patient Advocate and confirming that my PCM did submit a request for referral to a wrist orthopedic surgeon after I confronted him with the results of my (VA) MRI/Arthrogram, I went home to aggressively manage my referral.

I called my Tricare region’s customer service number.  I never reached a human being. (ALL of the People. ALL of the Jobs. ALL of the Computers?)  I chased menu options long enough (15-20 minutes) to figure out that I would not get the level of information I needed from a machine.

So I bit the bullet and created an account on my region’s Tricare website.  I had been avoiding creating an online Tricare account, given the government’s track record on protecting personal information.  I don’t want my health information compromised.

But I needed access to the information, which I got after I created my account.  I was able to see the referral letter and, most importantly, the authorization number.

There are several useful pieces of information on Tricare referral letters.  If you keep reading past the name and contact information of the healthcare specialist to whom you have been referred, you will see this sentence: “This authorization is valid for the dates and service codes that follow on the back page.”  Keep reading until you reach the dates and service codes.  Make sure that your treatment takes place with the date range, and that you do not receive any treatments that were not authorized, or you will have billing problems with Tricare (as in, they may refuse to pay).

If you keep reading past that section, you will see a section titled “If You Would Like to Choose a Different Provider.”

Did you know that if you are not referred to an MTF, but are instead deferred to network, you can choose to see *any* in-network provider of the same specialty?

Also, as per the referral letter, “if your authorization number begins with a 7, you do not need to notify us of a change in provider.”

[Authorization numbers can also begin with a 4, in which case, you *do* have to get prior authorization to switch providers.]

***CAUTION: “You may not switch providers if you have already begun seeing a provider for the service authorized in this letter.”

Armed with that information, and all of the research I had done on orthopedic wrist and hand surgeons since my (very-belated) diagnosis, I called the office of the in-network surgeon I had selected, and scheduled an appointment for later this week.

This probably shaved several weeks off my wait-time, instead of waiting for the referral letter to come in the mail and then trying to figure out how to change providers.

The Patient Advocate also gave me advice on how to switch to a different PCM, given the current constraints of the system (patients being forced to use PCMs at MTFs only; no network PCMs; MTFs not accepting new patients due to being over-capacity).  We decided it would be best to remain with my soon-to-be-former PCM until the wrist/hand surgery is complete, so as not to cause hiccups in the system.  But I will be switching to a different PCM and a different MTF as soon as that is complete.

Meanwhile, I continue to receive excellent care for my other health issues from the local VA facility.

As far as resolving my issues with Tricare, I followed the chain-of-command, as well as rules of common decency.  I tried resolving my inadequate healthcare issues first with my PCM, who got defensive and hostile.  Then I went to the Patient Advocate.  Next I will file an evaluation with ICE.  I will also be completing an Army Provider Level Satisfaction Survey (APLSS).  If I still don’t receive a satisfactory resolution, I will continue to pursue the matter (on the days my health permits me to battle).

I have no illusions that my PCM will change his methods as a result of these actions.  He is impervious to feedback, and I’ve seen much worse healthcare providers remain in the military healthcare system, sadly.

The best I can hope for is:

  1.  To insist I get the care I need for my health conditions and injuries
  2. To insist the providers of this care are highly competent
  3. To hold this PCM accountable for his negligent care by reporting it
  4. To provide helpful information to others who are dealing with similar situations

I suspect by the time I am done, my soon-to-be-former PCM will regret having ever told a pissed-off veteran to be more aggressive about their healthcare.  Mischief, I mean Healthcare, Managed!

Tired to the Bone

Tired Dog

I try to be optimistic and proactive about my health.  But some days I’m just tired to the bone.

Last week I had three medical procedures.  One was a new treatment, and two were diagnostic.  It may take days, weeks, or months before we know if the new treatment is having an effect.  So I wait…

Meanwhile,

The diagnostic procedures revealed that I have been correct for the past 2+ years that there is something wrong with my wrist.

More than two years ago I fell violently on a wet ceramic tile floor.  Ever since, I have been telling doctors and therapists that I have pain and malfunction in four areas: my scapula, my shoulder, my elbow, and my wrist.

Although my doctor ordered x-rays immediately after the fall, once those came back negative for broken bones she refused to send me for additional imaging (MRI/arthrogram).  Nearly one year later, after I had “failed to progress” in physical therapy, my doctor finally sent me for a shoulder MRI/arthrogram, which revealed that my labrum was severely torn and would not heal without surgery.

By that point, nearly one full year after the injury, I was in severe pain and could barely do my job.  Some days I left work early due to the pain, and I wasn’t getting much sleep either.  I could sleep in one position on the couch, surrounded by pillows that held my shoulder in the least-painful position, but if I shifted in my sleep the pain would wake me up.

I was taking a strong NSAID and a narcotic, but that wasn’t enough to control the pain.  I was getting pretty desperate for relief.  For months I requested that my doctor refer me for pain management, but she refused.

Fortunately, once I received the diagnosis of the torn labrum (a.k.a. SLAP tear/SLAP lesion) things happened a little more quickly.

The story of how I selected my orthopedic shoulder surgeon is a saga for another post.  But once I had authorization to receive care from him, I was able to see him a few days later (one month after the MRI).

At this point, I was desperate for relief, and I didn’t care if it cost me my job.  I told the nurse I would take the first available surgery slot, and asked her to look for cancellations.  She found a cancellation for the following week, which gave me just enough time to stop taking all medications, vitamins, and supplements and get them out of my system so they didn’t interfere with the surgery or the recovery.

I told my boss that I was having surgery the next week, and would probably be out for at least 6 weeks since I couldn’t drive with my arm in a sling.  Although I was an hourly worker, and would not get paid while I wasn’t working, they didn’t fire me.  They told me to get the help I needed and come back when I was better.

I had the surgery, and it was successful.  The surgeon discovered that my labrum was completely severed, and he had to trim it, re-attach it, and anchor it to the bone.  However, the biceps tendon was not torn, and the rotator cuff was not damaged either.

Even immediately post-surgery, the pain level was so much lower than before the surgery.  I was able to stop taking narcotics after about two days.

I started physical therapy seven weeks after surgery.  My surgeon wanted to give the labrum plenty of time to reattach to the bone and form a strong connection.

We noticed in physical therapy that I was still having pain and malfunction in the scapula, elbow, and wrist.  My doctor and physical therapist wanted to give it some time, to see whether this would shake out as physical therapy re-trained the muscles to function as they had before the fall.

My surgeon said that if the pain and swelling in my hand and wrist had not gone down in three months, I should probably see an orthopedic wrist surgeon, as I might have a tear in my triangular fibrocartilage complex (TFCC).

Then a whole lot of life happened.  Moved twice.  Different states. New PCM.  New PCM refused to refer me for MRI/arthrogram of wrist, which was still discolored, swollen, weak, and painful, but did refer me to a new physical therapist.  Physical therapist wanted to try treatment first, but after I “failed to progress” with elbow and wrist function, PT agreed it was time to get diagnostics and see an orthopedic specialist.

Meanwhile, I had finally gotten my VA disability claim processed, and after a seven month wait for an appointment had finally seen a VA PCM.  Since I had not been able to get my Tricare PCM to follow-up on the wrist, I asked my VA PCM to treat it.  She sent me for x-rays immediately following our appointment.  The x-rays showed my ulna was mis-aligned.

Less than two weeks after I saw my VA PCM for the first time, I had EMG and CNS procedures to determine if there was permanent nerve damage in my left arm/hand, and to determine whether the problem was due to a pinched nerve in my neck.

A few days later, I had an appointment at the VA hand clinic.  The x-rays had indicated a problem in my wrist, and the examination at the hand clinic confirmed it, so the hand clinic referred me for a wrist MRI/arthrogram.  FINALLY!

Three weeks later I had the MRI and arthrogram (post pending).  It was more than two years since I had been injured, and more than a year since the shoulder surgery.

The arthrogram revealed not only that I have a TFCC tear, but also that I have a scapholunate (S-L) teartwo torn ligaments in my wrist.

Initially, I was happy to finally have diagnostic evidence to support the injury claims I have been making for the last two-plus years.  And I was excited by the possibility that I could get the ligaments repaired and finally begin to heal.

But today I am just tired to the bone.  I have to find a new orthopedic surgeon in the state where I now live.  Someone I can trust to work on my wrist – a very delicate and complex part of the human body.  Someone in either the Tricare or the VA system.  And I have to get authorization 1) to consult with them and 2) to have surgery, if necessary.

Plus, I still don’t know whether I have a torn ligament or ligaments in my elbow.  My physical therapist thinks that I do.  But I haven’t been able to get Tricare or the VA to send me for diagnostics of my elbow yet.

On a better day, I will conduct more research on orthopedic wrist surgeons, and I will fight to get the referrals and the treatment that I need.  On a better day, I will take positive action to resolve this injury.

But today I am tired.  Today I will rest and regroup, so that I can resume battle recharged and equipped with knowledge.

Bottom Line:  It’s ok to be tired.  We all need rest.  We all need self-care.  Resting does not mean we are weak.

Lessons Learned:

  1. Keep fighting until you get the care you need.  There will be good days and there will be bad days, but you deserve to be heard and to be treated.
  2. You don’t have to go it alone.  Get a Patient Advocate, Case Manager, or lawyer to assist you.
  3. “If you haven’t got your health, you haven’t got anything.”  I delayed my first round of physical therapy because I was busy with work and school.  If I had “failed” PT sooner, I probably would have gotten my shoulder MRI sooner and my shoulder surgery sooner.  I wish I had made my health more of a priority sooner.  Problems don’t go away when you ignore them.
  4. Learn the administrative procedures.  HMOs typically have set procedures for dealing with illness, injury, etc.  PCMs have to follow the sequence when treating patients.  Even though I knew I needed shoulder surgery, I had to “fail” PT first.  It will do you no good to try to pre-empt procedures – you won’t get authorization to do things out of sequence.  So find out the sequence and get it done so you can get to the end-state you need.
  5. Trust your gut.  Various healthcare providers gave me various ideas on what might be causing my symptoms – only one of them was (partially) correct.  I knew from the beginning that something was wrong with my wrist and that I needed imaging to find out what it was.  You know your body better than anyone else.  If you know something is wrong, keep demanding treatment until it’s fixed to your satisfaction.
  6. Watch out for wet freaking ceramic tile floors!  Or any other slip, trip, or fall hazard – you don’t want to jack yourself up like I did.

Proposed Health Care Hikes in Pentagon’s 2017 Budget Proposal

Another good reason to embrace preventive health and self-care: retiree health care benefits continue to erode.  Recent proposals would make health care significantly more expensive for retirees and their families.

According to this article in Military Times, the Pentagon’s proposed 2017 budget includes several changes to the existing Tricare system and to the fee structure.  The most significant price change is the proposed implementation of an annual healthcare fee for “working-age retirees” – retirees (and family members) who are not yet eligible for Medicare.

Under the proposed plan, Tricare would be re-structured into two choices: Tricare Select, which provides care through military treatment facilities (MTFs) and is similar to the current Tricare Prime option, and Tricare Choice, which provides care through civilian providers and is a hybrid of the current Tricare Extra and Tricare Standard options.  Tricare Select would cost $350 for an individual or $700 for a family (per year).  Tricare Choice would cost $450 for an individual or $900 for a family (per year).  Please see the Military Times article for proposed co-payment rates and other proposed fees, which would be in addition to the annual enrollment fee.  What’s the bottom line?  According to MOAA’s president, retired Air Force Lt. Gen. Dana Atkins, “the full array of fee changes would mean about a $500 to $600 annual increase for retired families under 65 who use in-network providers and an increase of more than $1,000 a year for those using out-of-network providers” (MOAA article on the proposed changes here).

The proposed budget also includes increases to the catastrophic caps for beneficiaries.  For retirees, the cap would increase from $3,000 to $4,000, and participation fees would not count toward the caps.

Military Times states, “According to budget documents, the changes are designed to entice more beneficiaries to use military hospitals and clinics by continuing to offer care at these facilities at no cost to patients and curb the rising costs to DoD of private care.”  As has previously been pointed out on this blog, this places patients in a very difficult position when MTFs in their area are at capacity and not accepting new patients.

Furthermore, MOAA is concerned about the robustness of the non-military network of providers.  In the MOAA article, Lt. Gen. Atkins asserts, “One of the main access problems is that many doctors don’t want to be in the current network.  We’d like some assurance that will be fixed.”

The new system would require annual enrollment, and families who fail to enroll and pay the enrollment fee will forfeit coverage for the plan year – in other words, coverage would no longer be automatic, and if you don’t sign-up during the enrollment period, or fail to pay the fee, you would have no military healthcare for that year.  While it is suggested that requiring annual enrollment would bring Tricare in line with civilian heath plans, one wonders about ulterior motives.  Research has repeatedly shown that individuals are more likely to participate in benefit plans that are opt-out, rather than opt-in (read more herehere, or here).

These proposed changes are intended to change beneficiary health care behaviors.  In other words, if it costs more to see doctors and specialists, and it costs more to have prescriptions filled, maybe you won’t use them as often.  (Of course, if you miss the sign-up window, you won’t be using them at all that year.)

There are many ways to respond to these proposed changes.  I choose to respond to a future that most-likely includes increased healthcare fees by taking actions to improve my health.  How about you? Why not take control of your health and your finances by practicing informed preventive health and avoiding increasingly more expensive co-pays?  You may find that managing your health through diet, exercise, meditation, or other self-care practices could reduce your need for medications and reduce the frequency of your visits to the doctor.  Why not focus on the part of the equation you can control?

Negative, Ghost Rider, the Pattern is Full – How My Quest Began

Have you ever read Catch-22, Joseph Heller’s novel about airmen in WWII?  Even if you haven’t, you’re probably familiar with the expression.  Catch-22 is a situation that presents a logical paradox – such as when, in the book, Major Major gives orders that people are only to be admitted to his office to see him if he is not there.

I experienced a Catch-22 situation with my healthcare recently.  After spending a great deal of time selecting an in-network primary care manager (PCM), I found out the night before my appointment that Tricare was not permitting patients to establish new relationships with non-Military Treatment Facility (MTF) providers.  However, the MTF near me was at capacity, and not currently taking new patients.  Thus, I could not go off-base for medical care, and I could not get an appointment on base.

Tricare’s solution was to send me to an MTF much further away, to a PCM who has no specialized training in my particular health conditions (unlike the network PCM I had selected).  Having no other choice, I saw this provider, and requested a referral to a specialist.  He denied my request and opted to treat me himself, prescribing two medications that are contraindicated for my condition, and could kill or further disable me.  Although I expressed concerns about the prescriptions both to the PCM and to the pharmacist, they both dismissed my concerns.

It’s difficult to describe the frustration of dealing with a chronic health condition that doctors can’t seem to get a handle on.  But after a decade-and-a-half of being prescribed medications that did not cure my condition and produced horrible side effects, I was simply not willing to gamble that this time would be any different and this provider would have the solution.  When I confirmed that the World Health Organization had issued guidelines never to prescribe to someone with my condition one of the medications that my new PCM had just prescribed to me, it was the last straw.

Faced with a debilitating medical condition and inadequate healthcare, I weighed my options.  I met with my PCM again.  He again refused to refer me to a specialist, and wanted to prescribe different medications.  And then I learned that Tricare has a procedure whereby complicated cases can be assigned a case manager, who will help advocate for the patient.  I emailed the MTF patient advocate’s office and requested a case manager, but they never responded.

While I was waiting for the response that never came, I found a blog that advocated self-sufficient living, including holistic self-healing using medicinal herbs, diet, exercise, and common sense. And I decided I had had enough of being experimented upon by PCMs who (mostly) didn’t care about my well-being for longer than the 20 minutes it took to get me out of their office. After nearly a decade-and-a-half of treatments that usually left me sicker, I decided to try naturopathic self-healing.

To me, this means utilizing evidence-based natural solutions when possible, such as using house plants to improve the quality of the air in my house, rather than buying an air purifier.  But it also means employing traditional medical procedures when necessary or beneficial, such as routine screenings, surgery, physical therapy, or psychological counseling.  The objective is to use all of these methods as tools, rather than being treated like one.