Wednesday, January 25, 2006

Calling Dr. Y's Boss: Give me a referral please.

I was stuck in a tough spot. My old neurologist, Dr. Y in Seattle, had refused to give me a referral to OHSU Neurology. OHSU Neurology had refused my PCP's referral after a bunch of time and effort. What to do?

I decided to call the P.clinic where Dr. Y practices and explain my problem to a manager or someone who would listen. After reaching a curt (rude) dead end with Dr. Y's office the last couple times I tried to call, I really didn't want to call them again.

Luckily, I got ahold of a friendly, professional care manager, Ms. BW, at the P.clinic. She listened to my story and went and talked to Dr. Y's office. She got them to do the referral and called me back within the half hour. Yay, I get to go through the OSHU referral hoops again. I suppose putting Dr. Y's office through that process is punishment enough for being rude to a patient. Ha ha.

I wonder if Dr. Y read my letter yet. In a way I feel a tiny bit bad for being such a squeaky wheel. I hate to complain in general. When it comes to getting healthcare, unfortunately, you sometimes have to escalate issues and file complaints. The stakes are too high to just give up.

OHSU Neurology: Clinic Manager Calls Me Back

I just got a call back from Jean an OSHU Neurology. I explained the difficulties I had with his office, as described in my previous post. He was apologetic but ultimately unhelpful. To summarize our conversation:
  • OSHU Neurology does not take referrals from Primary Care Physicians, only from other Neurologists.
  • He refused to give his manager's name and number, which I requested should I need to esclate the issue further.
  • He apologised that his staff failed to tell me that I needed a referral from my Neurologist.
  • I agreed that it was useful for a new neurologist to have the notes from an old doctor, so they don't have to start over. I mentioned, however, that all there was to know was my diagnosis and history of symptoms, which were provided. I only saw my old neuro Dr. Y once after diagnosis, and Dr. Y refused to do any more referrals.

So I have a new neurologist who won't take patients without the old neurologist's referral, and an old neurologist who refused to do a referral. How is that for focusing on the patient?
What would you do next?

OHSU Neurology: Beaucracy ad adsurdum

My current health care plan is this:

  1. Get a neurologist in Portland (where I'm moving to) and get a full MRI work-up.

  2. See a specialist neurosurgeon in Seattle.


The neurosurgeons are on board and ready to see me. They'd prefer that I get a full set of new MRI's done first, but they are willing to order the films if they have to. I'll need a good local neurosurgeon to help me manage my SM in Portland anyways, so I decided to find a neurologist before seeing the neurosurgeons.
This should be a straightforward task. I have a solid diagnosis of a serious neurological condition, so there's no doubt I need a neurologist.
I decided to go to OHSU's neurology clinic since they are probably the biggest center in Portland. Unfortunately, getting in to see a neurologist at OHSU is near impossible. They have the most absurd and useless admissions process I've ever seen. Here is what has happened so far:

  • I called the main OHSU neurology line and said I needed a new neurologist in Portland for my diagnosis of Syringomyelia. They told me to have my doctor call this number (503-494-7967, see ohsu.com) for referral instructions.
  • January 18, 2006: I called Dr. Y's office in Seattle and requested a referral to OHSU neurology, giving them the voice number to call for instructions. Dr. Y's office latter called me back and said they will not do the referral (after already doing two to UW and OHSU neuroSurgery) in an rude tone.
  • January 19, 2006: I called my PCP Dr. M and requested a referral to OHSU neurology.
  • January 23, 2006: I'd heard nothing from OHSU Neurology or Dr. M, so I called Dr. M's office to see how the referral was going. His staff was on top of it, but they were getting zero response from OSHU Neurology despite leaving two messages and waiting two days.
  • January 23, 2006: I called the main OHSU Neurology line and explained that I was having difficulty with their referral process. I also had called the number they gave me for referral and was told to leave a message. I asked for the name and number of the Supervisor. The staffer said that I should avoid calling the supervisor and creating a "messy situation", and that she would instead tell the woman in charge of the (503-494-7967 part of the clinic) referrals to call my doctor back. I kept my tone professional, politely asking again for the name and number of the supervisor, just in case I should need it. (Jean Ellis 503-494-2286) I then hung up and waited.
  • January 24, 2006: I called my PCP Dr. M. They finally got a response from OHSU Neurology. They said that OHSU requires the referral to be mailed, not faxed, and that they would fax a reply and mail the referral immediately.
  • January 25, 2006: Roxy from Dr. M's office called. They received a fax (no phone call) that said that I need to follow up with my Neurologist in Eugene (none such person exists) first. WTF!?
  • January 25, 2006, ~11:20 am: I called the OHSU Neurology "supervisor" Jean Ellis at 503-494-2286 and got his voice mail. I left my name and number and asked him to please call me back ASAP, preferrably today.


Ahh, another fun day dealing with healthcare beaucracy. Isn't it amazing!? It's even more fun when you're in pain. Yay.

Monday, January 23, 2006

Fed up with Doctor Y's Office: The Letter

Before leaving Seattle to get married and go on a long sabbatical/vacation, I saw my (former) neurologist Dr. Y. We discussed my recent diagnosis of Syringomyelia, and I told him I'll need help managing it while travelling. He seemed to agree, but when I called him from abroad and from NYC his office was less than helpful. I felt fed up and let down and I was in pain. After returning to the west coast, I wrote this letter to Dr. Y which I will send tomorrow.


Censored version with names removed
From Patient: A
To: Dr. B Y Fax: xxx.680.2246

January 23, 2006

Dr. Y,

You may recall my vacation plans from our last appointment: I married in August in Oregon and then my wife and I have been traveling (US and EU). We are currently travelling across the US and plan on settling in Portland. Travel has been difficult at times with a chronic, painful condition, but I'm thankful to be able to do so.

I called your office on December 7, 2005 from NY to give you an update on my condition (it'd been almost 3 months) and ask for a massage prescription. I was very disappointed with the lack of care I received from your office. I had told you I would be traveling and may need to call from the road. I realize that there are limitations to what you are able to do without your patient present. I entrusted you to be the primary physician to help me deal with my difficult neuro. condition. I discovered that, because I happened to be away from Seattle, I had nobody to turn to for help with my painful condition. All I was told was that “if its that bad, go to the ER”. I do not feel this is appropriate; I have a chronic condition, not an emergency, and the ER is quite expensive. Massage is effective treatment for spasticity, and there is no contraindication here. This was unacceptable. My doctor friends told me to find a new neurologist and I agreed.

What I expect from my neurologist is a strong ally in dealing with Syringo Myelia (SM). I am grateful that you were able to help me diagnose SM, and appreciate your past efforts to listen to me.

On January 18, 2006, I called and requested a referral to the OHSU neurology clinic in Portland, where I plan on living. You refused to give a referral even though you diagnosed the condition. Wonderful. Thanks for the help.

I will try to send a book titled “Contents Under Pressure” in the hopes that it will educate you and your staff about just how difficult it is for the patient to find quality care with a rare neurological disorder such as SM. Very few doctors (only neurosurgeons, really) understand the condition, you have to get a referral to see a specialist, and the health establishment presents numerous obstacles to the patient who is in a lot of pain and slowly loosing motor control. I'm only 30 years old. Just try to imagine it.

I felt that you should receive this feedback first.

Sincerely,

name
cell
email


I ordered two more copies of Contents Under Pressure, one of which I will send to his office and urge them to read. The book portrays some of the frustrations people face dealing with the health care beaucracy when they have a rare, difficult to diagnose disease such as SM. The author actually does not have a syrinx, but he has a related condition called Chiari Malformation.

Introduction

In 2005, I was diagnosed with a rare spinal cord disease called Syringo Myelia (SM). From the ASAP website:

What is syringomyelia?

(sear-IN-go-my-EEL-ya)
Syringomyelia, often referred to as SM, is a chronic disorder involving the spinal cord. For reasons that are only now being understood, cerebrospinal fluid enters the spinal cord, forming a cavity known as a syrinx. (Doctors sometimes use other words such as cyst, hydromyelia or syringohydromyelia) This syrinx often expands and elongates over time, destroying the center of the spinal cord. As the nerve fibers inside the spinal cord are damaged, a wide variety of symptoms can occur, depending upon the size and location of the syrinx.



Syringo Myelia (SM) has presented a number of challenges already:
  1. Getting a diagnosis is very difficult. My Primary Care Physician (PCM), Dr. M, basically told me there was nothing wrong with me and treated me for depression. The symptoms vary quite a bit, and the condition is rare, so few know about it.
  2. Finding a specialist. Neurosurgeons are the experts when it comes to SM. Finding one who knows the latest research on the condition is not easy. A neurosurgeon is needed to evaluate the condition and see if it can be fixed, and a neurologist is needed for management of the symptoms.
  3. Seeing a good specialist (neurologist + neurosurgeon). The health care system is difficult to navigate. You need a referral to see a specialist (even if your insurance doesn't require it). My neurologist, Dr. Y in Seattle, has actually refused to refer me to a new neurologist in Portland. Today OHSU neurology told me that a referral from my primary doctor (PCP) would probably not be good enough. Some medical staffers are courteous and professional (e.g. Dr. M's office), others can be downright rude and unhelpful (e.g. Dr. Y's office).
  4. I haven't made it past step 3. yet, because I've been getting the run-around from doctors for the last month. Good thing I pay $350 /mo. for health insurance!
Syringomyelia (SM) is a serious condition. It typically causes chronic severe pain, numbness, loss of sensation. It can also cause paralysis, stabbing chest pains, eye problems, crippling muscle spacticity, and joint damage. Knowing that, you'd think doctors and their staff would take you seriously. You'd think.

This blog is a way for me to vent about some of the bullshit I go through as I try to find good healthcare for this rare condition. I hope to spread awareness and urge the beaucratic health care system to refocus on the patient.