Monday, June 15, 2009

My specialist referral: blamed for my own death. Will ANYONE be 'responsible?'

The week before last, I tried to get a referral to get IVIG, which is for auto-immune diseases, and used in my case because it can pass the blood/brain barrier, and kill my OWN auto-immune system that is (believed) to be attacking and destroying parts of my brain.

The person who owned the clinic, who I explained the whole disease to, and who said he liked a “Challenge” and took me on as a patient responded that he could not get me a specialists referral ‘until he has read the case file’. I pointed out that it had already been two months and when WOULD he read the case file? He said he didn’t know but that (insert chilling music) “maybe this isn’t the place for you.” (oh how many times have I heard GP’s say that. He went on to explain that I need a GP who would take responsibility of my case (which we pointed out, that after a full explanation he DID – no, no, he said, he merely ‘transferred my documentation’ instead of taking responsibility of me as a patient).
LAST week, I needed a refill and used another walk-in where there was no patients, it being a beautiful day and a Sunday. The doctor there, Dr. M. was cheerful, and so, with no patients waiting I asked him, “How DO I get IVIG?” After telling him a bit about it. He said that I ask him and he gives me a referral, and he got out a sheet and made me a referral to a hematologist; I told the GP that I also had progressive Anemia and would need to see the hematologist for that also.

Linda and I virtually danced as we celebrated getting finally ONE of the many, many specialists we wanted, and we even got the one we asked for, Dr. H. (who we heard was very good). I however did not post the info on the blog but told a couple people by email. Just before leaving on Tuesday, we were called by the clinic which said, “The doctor needs more information regarding your referral.”

We came directly from up island, from vacation, and on Friday afternoon waited in the same office. I was confused. Linda said, “They wouldn’t call us in if there wasn’t a problem.”

We were brought into the room and soon one of the most angry doctors (a different doctor than last week) I had seen came in. I knew him as I had asked him to BE my GP. I did that when I saw him do a stick test for a UTI, and then send off the rest of urine for testing (what, actual science in medicine?) instead of the standard practice in Victoria of giving a prescription without a test. He said no, it wasn’t his thing, he didn’t want that and I was a complicated case. (Complicated case, I was to hear a lot of that, I heard a lot from my supposed GP when I was told I wasn’t his patient, because I need ANOTHER GP, due to my ‘complicated case’).

On this day I was meek and mild as Linda can testify, I did not raise my voice, use sarcasm or even question the doctor, I just wanted my IVIG! I wrote up this account immediately after coming home while we were both either crying or trying not to cry and Linda was wandering from room to room.

Enter Doctor in strong South Afrikaner accent : What is this about anyway? This case is too complex! This is a walk in clinic!

Elizabeth: I have a referral to get IVIG treatment and I wanted to know how to get it; Dr. M said a hematologist would administer it.

D: Peers at the letter, “Blah blah, MSA better served by a neurologist….” No, no, he won’t see you!

E: Taking out the reports on Progressive Anemia over now almost two years, “Yes, but we were also seeing him for…..”

D: (With force) He is NOT going to see you under ANY condition!

(pause) Linda and I look at each other.

D: This needs to be administer by a neurologist I guess, why don’t you go back to this Dr. A.-P.?

E: She recused herself.

D: Different Neurologists will have different opinions, so why isn’t this neurologist doing it, because you wanted something else?

E: No, she, Dr. M, ordered it done. The doctor who ordered it was the mentor of Dr..P and the case was referred upwards to her.

D: Well, just because He was a mentor means nothing, so you aren’t seeing any neurologists?

Linda: We are seeing Dr. PT…

D: (cuts her off and stares at me, speaking aggressively) “Well if you going to go shopping around for opinions, this is a walk in, you need a GP to handle this (Again, I think I am the only female in a wheelchair in the area to USE this clinic and I had the previous year asked him to BE my GP), this is complicated and someone needs to take responsibility. And here you are seeing all these different Neurologists. (this was said as if I was trying to commit a crime)

E: No, I am only seeing Dr. PT because he is a seizure specialist. All he does is seizures.

D: But he is a neurologist. Why can’t HE do the IVIG?

E: Because he said he will ONLY do seizures, and has sent me for EEG’s, only seizures.

D: Peers at form from Vancouver Hospital, “So who is this Dr. Sl? What did he say.” (the letter was CC to the movement disorder and the Genetics clinic)

L: “After the test he wrote to say we weren’t within his ‘parameters’ and so he wouldn’t be seeing us.”

E: Was he movement or DNA

L: DNA I think.

D: Well you need someone to assess you from the beginning.

E: (stares in horror…..’from the beginning?’)

D: Well you should have a family doctor. Who is this Dr. Jimmy

L: When earlier, no GP would take Elizabeth due to her complicated case, he was the doctor at Cool Aid who took her.

D: So why doesn’t HE do it.

L: He decided the case was too complicated.

D: (Looking at me) So who is your GP now, there is no point putting this on walk-ins, you need to find a real GP.

E: I have TRIED to get a family doctor, and have one, but it turned out that was a walk in clinic as well.

D: Well you need to find one, this is too complex. (Pause) You need to go back to back to Dr. A-P! (Slight pause) “If you try to argue in the slightest, I will not send off this referral at all!”

E: thinks of the Internist, who I waited 40 minutes after the blood work to be told, “You are fine, I can’t help you.” I was ushered out. I asked the administrator, “Um, I came down here, can I at least ask him a question?”

Adminstrator harshly: You have been told the findings, HE is a very busy man. (I was later diagnosed with hypo-thyroidism from the same test results).

E thinks of being at the counter to see Dr. A.-P. when the administrator says, “No, you can’t see T., you are BANNED from seeing him.” (he diagnosed me with MSA, she said I had nothing, it caused some office tension).

E: I’m not seeing him, yet.

Administrator: Well, your doctor needs to write a letter requesting a referral to see him, then I can respond! (???)

E: (having nightmares of the 18 months to see a neurologist, get referred to BACK up to Dr. M. who ordered the IVIG and would go, “I gave you the treatment protocol, why are you here?”)

E: (LONG PAUSE in office) I did go back to see Dr A-P after that letter.

D: And…

E: Dr. A-P does not want to give this treatment.

D: You are certain.

E: Yes, she does not want to give this treatment. She did offer the tilt table, but I specifically asked if that would lead to treatment and she said no. She made that quite clear. Linda can confirm that.

D: Well, you go HERE and you go THERE, and I don’t think you are going to find ANY treatment or anyone who will treat you or take responsibility for IVIG in this town.

I feel as if I have just been hit by a car. Is this town that small, that no one can do IVIG treatment, or that the system only goes in circles.

Dr. continues: “No one in this city will take responsibility for IVIG, you will need to move to VANCOUVER if YOU want to get IVIG.”

(slight pause)

E: “To get IVIG, I would go to Vancouver.”

D: “You would?”

E: “Yes. For IVIG.”

D: “Well, I’ll make this referral but, I don’t hope much……..(looking at paper) there are too many neurologist involved.”

D Takes the letter, tells the receptionists to send our originals we obtained by the freedom of information act from the Vancouver Hospital Clinic and to give them to the specialist. When he is gone as the administrator makes the copies, I ask for the originals back. “No problem” and we have them back. Never take originals into a doctors office, I remind myself.

A little later we talk:

Linda’s statement about the visit:

He took away all hope.
He took away all hope that we will get treatment in this city.

E says to L: He blamed me entirely!

L: Yes he did.

E: What did I do? Why blame me? Why get angry at me?

L: You don’t have a GP.

E: I tried, I have been refused now, what 28, 29 times, I even asked him!

L: He blamed you, it wasn’t fair, it makes everything uphill, it is acted as if it is all your fault.

Currently we don’t know if we got the Neurologist referral, or if like the Rhumatologist referral, we get the referral only to be accessed for arthritis, as the specialist only does arthritis. We don’t know if anyone in this city will take responsibility for treatment which is authorized to be done anywhere in this province.

I cannot go to the US, the treatment costs $18,000 (according to Dr. A-P). Dr. M. who authorized the treatment for six months as a baseline then continue with that or switch to a different drug depending on the results won’t sign a paper saying that it is impossible to get this treatment in Canada. Nor will she administer it. Nor would the neurologist she gave it to administer it. Or the one who treats seizures (but hasn’t seen me since……uh….dunno, a LONG TIME). Nor will any GP. No one will take responsibility for something that Dr. M has ALREADY taken responsibility for.

I now believe, that I will not be able to get a GP, have the strength to interview those GP’s to find one, have them review the case. Get an neurologist, a hematologist, a respirologist, a gastrointerologist (sic) and a few more. Have the tilt table test done to make a base line of autonomic failure. Then have the IVIG set up. It COULD be done in a week or two. But for the time to see a nuerologist, it is more likely if EVERYTHING went well, it would take 18 to 24 months. At the fastest, maybe five to six months for the neurologist instead of nine to eleven, one month (a miracle) for the tilt table, then another month for setting up the IVIG. It would be seven to eight months at a miracle. Or if I get hit by a car WITH my medical chart on me, maybe they would treat me at the hospital. However, they labelled the anemia and acute and needed immediate treatment and didn’t treat that!

So no, I don’t think I will live to see the treatment which may extend my quality of life. Nor, without the specialist, will I have palliative or even adequate pain medication. As Cheryl said, if they treated the thyroid, the anemia, and the auto-immune disease, then it isn’t so complicated anymore.

He took away all hope....that I can live, or live longer. Welcome back to Victoria.


JaneB said...

Oh Beth. I,,, don't know what to say, but I'm here, listening, angry and sad for you, and for the battles you needlessly have to fight. Hugs to you and Linda

yanub said...

I don't know what to suggest at this point. In the US, lawyers would have been called in long ago. What the doctors of Victoria are doing--well, failing to do--is unconscionable.

SharonMV said...

Dear Beth,
You need to try from a different angle. find out the manufacturers of IVIG who supply your area (there are several different brands). There may be people in those companies who can help you gain access, or at least offer some advice. I don't know if you read the e-mail I sent you a couple of weeks back about patient, medical organizations for people who need IVIG for various diseases & conditions. They can often help too. There is probably a foundation or organization that helps people with MSA get access to IVIG treatment. Those doctors are not the only ones who have power. I'll try & find my earlier e-mail & re-send it.

Lene Andersen said...

There are so many things to go ballistic and cry about in that post, but your experience with the healthcare system is so nicely summed up in Mr. Asshole's statement that “If you try to argue in the slightest, I will not send off this referral at all!”


What happened to "first, do no harm"?

I'm so sorry. The bastards.

Denise said...

Fuck that doctor — and all the others — up the ass with a pointy stick. If no one will treat you, they have the responsibility to get you some decent palliative care. One might think someone out of 50 doctors you've encountered would take a perverse academic interest in documenting and attempting to treat your condition. It is certainly not your fault.

I am very frustrated on your behalf. I just wish it did anything.

Baba Yaga said...

Grief. And I almost thought this was going to be a "Beth gets medical treatment" story.

The worst thing in this is that anything you do to better your situation is somehow used as grounds to oppose any betterment in your situation. A little like being trapped in a Kafka story...

rachelcreative said...

The fact that he blamed you and seemed to suggest that you having so many doctors involved without taking responsibility (just like he was) was wrong. Which means he might be wrong about your chances of getting IVIG treatment too.

I can't help feeling there's a financial factor in here somewhere for him to call you in and be that way.

I hope SharonMV is right. Some expert help to fight this is just what you need.

Even better would be not having to fight for it at all. The doctors are the ones who made the case so complicated by not testing, not treating, not referring, not managing symptoms.

This doctor's assessment is flawed. So might his judgement on access to IVIG.

CJF said...

big big hugs to you and a huge flipping off to the arsehole doctors.

FridaWrites said...

I guess many doctors only want to deal with simple cases that fit their narrow categories. Can't anyone think or act outside the box? (No, I guess not).

I feel a little socked in the stomach or wind taken out of my sails or something reading this, so discouraged. Part of me wants to suggest calling the media again as has been done in other Canadian cases, but this is more complicated than most newspaper articles will address. Or maybe not if it boils down to, "no doctors will give me IVIG, which would extend my life."

The medical system victimizes people who are already down, and why or for what end? I'm glad you have written about this (this post and others). This happens to people a lot and needs to be discussed more and solved--you've certainly raised my awareness from near zero (or thinking others and I have had atypical experiences) to an understanding of how poorly complex illnesses and disabilities are treated.

wendryn said...

I am frustrated and angry on your behalf, and I know that doesn't help at all. I'm sorry this is going so badly.


Name (Not God) said...

I'm sorry, Beth... The only thing that's coming to mind at all about this is a strong of swears with "They're"...."doctors! It's their"...."job to"..."help her!" With the dots being all words that are impolite to say...

SharonMV said...

yes, there is always a financial factor when IVIG is needed. It is a very expensive medication. Even with good insurance it is a struggle for my husband & me. We have to pay $500 a month for our co-pay - needless to say we can't afford that much. Insurance companies in the US don't want to pay for it, if they can get out of it. I'm sure the CA national health & Beth's insurance will put up roadblocks. It's probably very difficult to do all the paperwork, etc that is necessary too - the doctors don't want to deal with all the time & work it takes to get IVIG approved & set up.

Elizabeth McClung said...

Jane: Thanks, I am just back from blood tests, so a little dopey, as I need to prove, again, for the 3rd or 4th time that I have hypothyroidism, and if so, I MAYBE can be treated - also the same for anemia which has been confirmed about 4-5 times. But you know, if in doubt, don't treat, just keep testing.

Yanub: I was seriously thinking of taking a half page ad in the paper asking: Are ANY doctors here interested in save or helping prolong a single life....mine? And see if I get any response. I'm that desperate.

Sharon: I did look and there is no group in town but I should find the email and look for the national chapter or the vancouver chapter as they would know who would be familiar with administering it, right?

The problem is that there are more people in Greater Seattle than the province of BC, so collective power for rarer diseases are difficult. But when I have energy I make calls (the organization for rare diseases and my member of parliment haven't gotten back to me yet.)

Lene: One assumed that he had previously sat on a cactus and it was wedged in a bad location by his actions. His attitude was very odd for a HEALER but very typical for a medical cost manager - did he want to help my quality of life or extend my life? No. Did he want me to totally respect all actions and thoughts of every doctor and felt for some reason that I was one of those 'shify' type that might ask questions? Yes.

I get home, at home I have been forwarded an article by a very kind person, at the end of the article it has a list of questions that the patient should ask:

How will you diagnose my autonomic Neuropathy?
What is the likely cause of my Autonomic neuropathy?
How fast is my neuropathy likely to progress?
What are my treatment options?
(and many more) -

These are BURNING questions to me, I have never been able to ask a single ONE of these questions without somehow offending deeply the doctor I am speaking to - oddly, one does not question God (the doctor) but accepts the miracle with humble grace.

Alex M said...

I cannot believe the insanity you are encountering up there. Please don't give up hope!

Elizabeth McClung said...

Denise: Well, it turns out that in the US, there are other diseases that it MIGHT be - I was forwarded an article by a kind person and it listed not just AAN but also some disease called AIAN which means that doctors ARE talking to each other, ARE doing studies and ARE accepting things outside the book - this article was about Lupus SLE - a rarer presentation of Lupus - I was tested for Lupus by the Victoria rhumatologist who treats Lupus (there are only 2 rhumatologist in town) - she asked me if I got a red blotching on my face and checked to see if I had arthritis or lack of movement in my wrist - I was declared free of Lupus. Now personally I don't think I HAVE Lupus but how many unusually varient Lupus patients have been told they don't have Lupus just because they don't have blotching, or blotching on the face YET? The lack of communication much less curiosity in this town is staggering, and when I find out all the people who have no knowledge of these diseases (we have only ever met one person who knew that MSA had a component that was NOT parkinson's related - in fact there are two variations that don't - and that was the top Neurologist who recommended the IVIG - not any other neurologist, and not the hemotologist who turned us down must be related to parkinsons, ergo a neurologist is needed.)

Baba Yaga: I thought that for a week too! Then I crashed to earth again. It was a pretty sad weekend (still sent out 38 postcards). Yes, thinking is punished, and not thinking and anticipating is punished. I know when we FINALLY get a hematologist I will get yelled at for not coming sooner if my anemia was that bad for so long. Sigh.

RachelCreative: True, it is just that we HAD a specialist appointment, and now we don't. I only have the energy for one appointment a week now and how am I to enter in the morass of the medical maze once more - where do I get the energy and emotional endurance?

CJF: Thanks - I will post some positive blog tomorrow, I just needed to post what I had recorded and what that part of my day was like. And how that emotion, that crushing, deliberately, of spirit and hope is PART of a complex medical condition.

Frida: I had the same idea, but the same problem - if it can't make a simple headline (woman denied care!) then it won't be covered, and this is now one twisted package. I mean I am not even sure how I can have the various diagnosis I have - I am not sure how my heart keeps beating (erratically - last night was very painful and over 35% erratic, but also too low to have a heart pill - so just pray - or as they say in the hospital scenes, "There is nothing more we can do for her, we just have to hope now." - well that is my evening.

I think anything which implies the knowledge a doctor is using is outdated or that he/she has misdiagnosed people, or done them harm, which my and your very prescence does is a deep emotional threat to most doctors. And so it is either, 'Get away' or be attacked. Sometimes, and this is horrid, I wish I had some benign aspect of cancer becuase I think if the word CANCER was somehow attached, I could move over to oncology which seems to know what to do and could get treatment (what sane person wishes for cancer?).

Wendryn: Thanks, I will put up something perky, I just did a blood test and more needles, it makes it hard. And it just goes on, the weaker I get, the less accomodation I get. Oh, I found out they will do a home prescription at one walk in IF you are over 70 years old and it is $84 a visit.

Name not God - I could use a diety at this point, bummer! I can't quite understand at what point GP's go from being 'caring and the oath' to 'cover thy ass and make sure to get out of here at 4:30' - when did burn out happen, and is there anyone not burned out?

cheryl g said...

The medical community in Victoria and especially doctors like that make me so angry all I can do is sputter incoherently. I am appalled, I am outraged, I am sickened and I am very sad.

That doctor did everything he could to verbally beat you down. There was no compassion or empathy there.

I must have switched majors and left med school before the semester where they strip away the future doctors compassion and humanity.

Raccoon said...


Elizabeth, I am very sorry that this happened/is happening to you. Beyond that, I have no idea what to say.

But, you are NDY. And I am still here, listening and reading.

SharonMV said...

Sorry Beth that you have to have yet more blood tests just for the chance to get your thyroid problem & anemia treated. I am hoping that you'll get treatment soon.
There are few local groups for rare diseases, like CVID (only 6-7000 people in the USA have it). But there is a national (&international) foundation. There is an online magazine called IG living where they list organizations for various diseases that need IVIG treatment. I'll try to e-mail you that info again.

As for Lupus, it can affect the brain & nervous system in various ways. As you know, my Lupus went undiagnosed for over 20 years. And I did have the malar rash, joint problems galore, etc, and neuro-psychiatric symptoms, a history of high SED rates,other blood test findings consistent with Lupus. But my ANA wasn't high enough to impress the great rheumatologist I saw in 1992, so my diagnoses didn't come until 2006. The rheumatologist who saw me then diagnosed me in 10 minutes. Many people (mostly women) have had Lupus for years before being diagnosed.


SharonMV said...

I just wanted to add that people in Canada with CVID do get IVIG, so it's not impossible to get it. Getting it approved by the health care system is the problem. And getting a doctor to start the process & prescribe it.
There are several manufacturers who provide IVIG. Administering the medication is not difficult - it is an IV infusion given by a nurse.

Maybe getting the media involved could help, if you can find a supportive reporter.

I also wanted to add that people with Lupus who have certain neurological complications are treated with IVIG.


Kate J said...

Every time you have any dealings with the medical establishment, it seems to be the same story. It's like, no-one wants to take your illness on. If they can't treat you in Victoria, why can't they just send you to a hospital in Vancouver, it's in the same province, for God's sake...

Mind you, I'm not so sure about the people who keep saying "if only you were in the US" and "this wouldn't happen in the US". There are plenty of people in the US dying every day for the lack of medical treatment. I heard that Medecins Sans Frontieres, who usually work in disaster zones, set up a walk-in clinic in the US and were besieged by desperate patients. A friend of mine, a US citizen now living in Europe, told me that she had been denied treatment in the US for a gynae problem she has since been treated for, for free, in Belgium.

I know none of this helps you, I'm sorry. And very sorry to hear about yet another setback.

Love & peace, Kate

(and I've just put some pics from my latest trip on to my blog...)

FridaWrites said...

cherylg, I read a lot about the sociology of birth--and my perspective is that medical school and the residency is an extended hazing--thinking differently is punished (see link to IrishDoc's blog on my blog, where she's punished for being ill and for trying to protect a mother whose kid is dying). Government and insurance rules compound this and take their time to help people. It takes a lot of courage for people not to sink into the system and to resist groupthink.

My heart hurts for you, Elizabeth. And I'm sorry about your heart--I've also had the need the heart pill-but can't take it problem. You are a strong woman and I admire you a lot. I went back to one of your articles from Jan. 2008, I think it was, because it gives me comfort in dealing with people who are hurting me by saying I am not "fighting" back enough--your post was on how we should resist, but how fighting is really not a good term! It was a great post!

CJF said...

A thought about accountability: do you think it would be a good or possible idea to start quietly recording all your doctor's appointments? You could do it covertly (hide a small mike in your goth bag!) or overtly ("I need these to remember what we talked about" [innocent blinking]). Basically the idea is to keep an "objective" record of what different doctors are telling you so that you can (a) have some ammo if they start treating you like shit or (b) have some ammo if/when you decide to call in a lawyer/the media.

alternatively, this may be a terrible idea.

Neil said...

Ah, crap. Victoria's beautiful, if you could get rid of the doctors and lawyers.

Lene:The doctors are assuming that "Do no harm" means don't do anything, or you could be held responsible for everything.
Not that a doctor CAN be held responsible for anything in Canada. To sue one successfully, you'd have to get one doctor to testify against another, and they won't do that.

Bea said...

Beth, I do not know what to say. I am so angry and sad for what you have to go through. What the hell happened to compassion.
A big hug from Toronto to you and Linda.

AlisonH said...

Ay yi yi. If it helps any, if you need to talk to someone who's been through a tilt table test, I have; feel free anytime. They stopped my tt test when my bp hit 63/21 and heart rate hit 44 with both plummeting. It wasn't fun, but it established the rare dysautonomia diagnosis beyond all argument and gave the doctors something to work from rather than blaming me for my symptoms, as a few of them did.

Stephanie said...

Beth, I'm choked up and angry and I have absolutely no words for this, but I'll try to come up with some. Your last picture looks so very definitive and scared, and I'm really scared now of losing you. It's so hard for me to imagine doctors being so heartless toward you. It really makes me rethink all I know about the medical community (which, granted, isn't much).

Once again I don't know anything helpful, at all. I'm just feeling the sense of helplessness in this post. I'm so glad some of the other commenters have ideas of things to do, but I wish there were some way for someone else to do all that work. Honestly, you need a patient advocate who can guide you through the system. If only.

Ms. Pet said...

I'm so sorry you've gone through all this Elizabeth how they are treating you is crap. Quite frankly the only thing I can suggest, and I suggest this SERIOUSLY, is that you YouTube Yourself and you contact various television stations for help. In my mind it's time you went to the media with all the horrible treatment, and the public on YouTube to shame the government into assisting both of you.

I know it sounds extreme, but honestly, what do you have to lose? More often then not when the media gets involved, all of a sudden *poof* doctors and treatment appear out of nowhere.

*saying a prayer for you and yours*

Anonymous said...

I think that if you were in the US you would be stony broke and unable to even go to any place but the ER. I am so happy to be a Canadian. Fo me having RA in the USA would be catastrophic.

But my husband thinks nothing could be better than living on Vancouver Island. hahaha

liz said...

Sending you hugs and supportive thoughts. I hope that you end up getting the care you need.

A Bear in the Woods said...

I've always heard that Canadian health care was good for basic maintenance care, but lousy for the complicated stuff. This certainly seems to demonstrate that thought. You know, if you could boil down your story to something simple enough for a short local news story, a station might run it as a human interest piece. It might help you to bypass all the crushing medical bureaucracy.

Rebeca said...

Uff..this is very sad story. God bless you.