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ROUND AND ROUND THE MULBERRY BUSH: A CONSULTATION WITH MY DOCTOR
Nothing to see here ....just routine
After several weeks of regular chest pains I avoided my medical centre and went straight to the Emergency Department of the hospital. This time, by blind luck I got an experienced Irish doctor instead instead of the inexperienced ‘teenyboppers’ that are the norm in ED these days. She sidelined my complaints and said she wanted to ask some questions.
What followed was some of the most skillful and pertinent questioning I have experienced in some time.
She noted that I hadn’t seen a neurologist in five years and said she wanted to refer me to the general medical team in the hospital.
The last time anyone from the medical centre had referred me to anyone was in 2016!
After a few weeks of blissful peace Pam (on my behalf) received a text asking me to book in for an x-ray.
This is how Pam explained it:
I received a text from Connolly on my cell phone on 10th of June, asking Robin to make an appointment for a chest X ray at Pacific radiology.
I read the text out to Robin and he was alarmed and wondered why - (and I wondered too).
Shortly after I rang the medical centre and spoke to the receptionist, to ask what the context was around that referral and why Robin was being referred for an x-ray.
The receptionist said she would get one of the nurses to ring me.
When the nurse rang back later in the day I asked her what the context was around this referral or if it was just routine.
I explained that Robin was quite anxious about being referred for an X-ray without a clinical reason for this..
The nurse came back and replied: "no, it's ROUTINE".
I relayed this to Robin and he decided - (and I agreed,) that he wouldn't have the x ray if there was no obvious reason for it.
So we canceled the appointment.
Two months after my previous trip to the hospital I went to my appointment.
Once again, the doctor was skillful and listened to what I had to say, asked the right questions and found a possible explanation for my constant dizziness, postural hypertension, by measuring my blood pressure sitting and standing.
It had never occurred, by the way, to my GP’s, to do that in all the time I have seen them; this simple test was last done at least five years ago by the neurologists.
For some reason it occurred to Pam to raise some chest x-rays that had been done back in April
Again, Pam:
In the week following, Robin received notification of an appointment on 20 June with the medical team at Hutt hospital, which came after a consultation with the emergency doctor in the ED in April.
There was no mention of chest X rays during the consultation so before we left, I remembered that there had been a request for an x ray.
So I asked the doctor, " Robin was referred to Pacific radiology for a chest X ray, is there anything in the notes that you have that would indicate why that might be?”
Her reply was along the lines that, the last chest X ray which would have been taken in April when Robin went to ED, concerned about chest pains showed some small nodules in the upper right lung. They wanted to have another look three months on from that visit in April just to check that there had been no changes.
So on learning the reason for the X ray we rang Pacific Radiology and rescheduled the appointment I had cancelled and made another appointment for early July.
As it turned out, the hospital had identified some small nodules in my right lung and wanted to check me in 3 months to see if there was any growth in that time.
For some reason they approached the medical centre to contact me to make an appointment at the neighbouring Pacific Radiology centre, presumably because they couldn’t do the x-ray themselves so farmed it out
They made it clear why they were doing the x-ray and communicated this clearly to the medical centre who then contacted me to make an appointment but neglected to tell me the reason for the x-ray but instead told me it was “routine”.
Had I not been kept in the dark and told the x-rays were “routine” I would never have cancelled the appointment because of my concern that this might be an eerie return of sarcoidosis, an autoimmune condition that affects the lungs in just this way.
After a major effort to get the medical notes from the hospital as well as from the medical centre I wrote a letter to my doctor asking to clarify this “confusion” and went, well-prepared, to a consultation with Dr. L that I have had the misfortune to be involved with in the last year.
What followed should not have surprised me.
The tone of the conversation was about as bad as anything I could have come up with in my imagination.
After the initial “what can I do for you?”, which I forestalled by insisting going straight to the point I explained the whole situation factually and then asked Pam to tell the story detailed above.
From there it all went southwards.
Here is a sample of the early part of the conversation:
Robin: Why would I be concerned about an x ray that shows small nodules on my right lung Why would I be concerned about that?
Dr. L: In the sense, I guess the thing is, it's a breakdown in us talking to you and you talking to us about why are we getting these tests done?
In a sense, for it all, in terms of it being routine, I guess it's been ordered that way, but doesn't necessarily mean we view it as routine ourselves.
Robin: Do you mind answering my question? That was a very direct question. Why would I be concerned about that? About that X ray?
Dr. L: You tell me.
To which I responded:
Robin: You're saying very little. You're making me talk a lot, but you're providing very little of your own.
I'm waiting for a justification.
I made my case and explained how this x-ray was potentially the most significant clinical test and finding in 10 years.
Robin: …Because, you know, I have a concern about what you and your boss sort of poopoo, my history of sarcoidosis. There's a potential that nodules in the lung, if they got worse, (let's hope they haven't), could be something to do with that
I explained that my hypothesis, which they constantly ignore (as opposed to the doctors at the hospital) - is that I have an inflammatory and autoimmune process going on which would explain why different places are affected at different times, such as constriction in the oesophagus which is there for a long time but just goes away for long periods of time.
Dr. L kept on coming back to the same thing over and over again
Dr. L: My indication at the time, once we were told you were declined, was you didn't want the test at all, because it was too good for you. And so we said, okay, you don't want this test, because you've often declined any kind of investigations or tests, no matter how.....
But I declined the test because I was misinformed as to the reasons for the test.!
Then, this mistruth:
Dr. L: But the results came here. And obviously, you're somebody who read those results, and on the basis of that asked that rather than go and have another follow up.
But I didn’t read the results because I didn’t have them!
Then he shifted the blame …first to the nurse:
Dr.L: It wasn't doctor, it was the nurse
Later, he tries to blame the hospital.
Dr. L tries to give his definition of what “routine” means:
Dr.L: I'd say the reason it's considered routine is because it's an x ray that can happen in the next week or two. So that's considered routine.
….That's our definition of routine in this sense. It's not an acute one. It's not an emergency one. So therefore, it gets considered routine.
Pam then brought up an important point.
Pam: Oh, if I apply that to mammogram screening or pap smears, I‘m a melanoma survivor - a major melanoma survivor. I'd be flipping worried if anybody had said “That’s nothing, Pam, under your arm”. I wouldn’t be here now”.
Then, it just “slipped through the cracks”:
Dr.L: Well, it's just a risk. It's just slipped through the cracks, you know
And then….
Dr.L You're allowed to be upset about these things.
Robin: I'm ALLOWED to, am I? You’re giving me the right? You're giving me the right to be upset from on high.
But, then, it all comes back to how they communicate to me.
Dr.L: But some of this comes from our troubles to try and communicate between each other. I try and ...
Robin: I communicated very clearly right throughout. There has not been any troubles with with communication?
Next comes the blame. It’s all because I write “abusive “ emails.
Dr.L Well, all we get is an email of multiple manner- and a quiet, abusive manner coming to us, when we try and call you, you will get another email, we don't get a conversation.
Conversation comes only in one direction - from top down.
Dr.L: It is only natural when the email is a bullying and abusive email?
Robin: Do you know the difference between direct communication and abuse?
So he defects once more, by trying to get me to speak
Dr.L Do you know the difference? What's YOUR definition?
This was the point when he offered me the chance, previously denied to me to raise unaddressed 12 -year old complaints:
Robin: But I want my issues addressed and they never have been.
Never in 12 years, apart with one exception.
The last time anyone in this practise because it goes back further than that.The last time anyone did something for me it was in 2016 and I got a referral to the neurology department. That person is no longer here.
And all I get is just nothing other than be told I’ve got senile dementia.
Do you think I'm gaga?
Dr.L I've never said,
Robin: Well, your boss did.
So you don't think that I should react badly to that?
In my clinical notes he writes:
Keeps mentioning issues with the doctors here at the C Centre, dislikes the docotrs here at this practice…. rementioned issues re, senile dementia. Still ongoing discuss about the old Tapanui flu, re. the chroic fatigue syndrome, re the geriatician.
At this point Pam came in with a very relevant point:
Pam: It's very hard to deal with these assumptions. Somebody makes an assumption, somebody's such and such and it becomes a label attached to you….
Not sort of putting forward hypotheses, you know, making assumptions. It's been that. I don't believe the real investigation has been done to make it a termination of onset of dementia, or, you know - how is that.
Where's the evidence for it?
Then we are back to communication, but the blame is only on one side - mine:
Dr.L: There are issues around communication issues around listening
Robin: ...and respect. And I've had listening and respect from the people in the hospital. I've never had it from you people.
Quite the opposite. That's why I'm rude.
Then he falls into sarcoid/autommune denial:
Dr.L: The sarcoid. As you asked, I wasn't necessarily mainly worried about the sarcoid.
But I was!
Dr. L: (inaudible) X ray. .. the main thing would be either is it a pneumonia or an infection you had at the time? Or is it something like a growth or haematoma or something along those lines?
But never sarcoid!
Robin: So here are you, , you're sitting there, playing God and saying, "Oh, you don't need to worry about sarcoid".
How do you know?
No answer to that.
So, I started to lecture him about autoimmune conditions.
Robin: Sarcoid is an autoimmune disease with various manifestations that has one thing that distinguishes it from other autoimmune conditions - that is what is happening in the lungs.
Otherwise it is just an autoimmune process. So, it's not really a thing in itself.
Unlike the doctors in the hospital Dr L could not hear this, so he deflects.
Dr.L: And as I said at the start, I'm sorry that there was this miscommunication from the nurse and us about the X ray.
I bring it back to my condition:
Robin: Living in my own body I know. I know how it reacts to things. I know what happens. I just watch you people just going off like the cavalry galloping off in the wrong direction.
It's an autoimmune condition.
But you're never ever treated as if there's anything serious,
I then pointed out to him that there are no experts in autoimmune diseases in the country…..
Autoimmune diseases are probably going to be the number one cause of disease in the next few years and you don't even have anyone in the system anywhere that, apart from as a sort of adjunct to their primary primary discipline.
He can’t address that, so once again he deflects:
Dr.L Well, if you feel that way, you can always go try and find another doctor, or another medical practice.
Robin: Well, no. Anyway, I found I found a way through the back door, I found my way to the medical team at the hospital, I've got no no argument with them.. I'm not going to walk away. I mean, where I'm aware of where am I going to find another doctor? Even if I can get into into a practice? How do I know that they're going to be any different?
And, Dr. L wanted to redefine what regarding “routine” means:
Dr.L: I think the trouble with English is that words can have multiple meanings.
I said:
Robin: So the fact is that I was told to have these tests, that they were just routine.
You knew you KNEW what my reaction would be - that I would spit the dummy and say " I'm not going to have these tests to (inaudible) for no reason at all”.
You knew that.
Dr.L : I was actually quite surprised you declined it to be honest. I was quite surprised.
Robin: Surprised by what?
Dr.L That you didn't go for the X ray
So, after talking around the whole thing for 30 minutes we are back at the beginning again.
By this stage I was getting pretty heated.
Robin: The difference was between you and Dr. McCabe on the one hand, and Dr. William Crawford, on the other hand, was that the communication didn't just go one way, "We tell you from top down, what we've what we feel that we we think that you should know" He consulted on on everything I was. I was never, I was never left in the dark about anything.
And I'll acknowledge he didn't do any more for me than the rest of you, but I'm totally forgiving of that, and totally forgiving of the of the neurology department when they can't come to a diagnosis.
That's not what it's about.
It's really all about top- down sort of things from arrogant pricks? Well, that's been talking about.
And then…
Dr.L: Well, that's not how we try and practice here, in that manner.
Robin: (Laughter) So sorry, if I laugh!. I haven't seen any sign of you not practicing that.
It's the whole problem.
That's why I'm sitting here.
Dr.L: I guess in our view, when we were doing the X rays, you had full autonomy and had the ability to decide whether you use them or not. And you decided not to do the test?
Then, back to blame and deflect:
Dr.L So that's the failure of the hospital to tell you the results.
Robin: Well, no. Because if you go to the hospital you go to A&E they never told the results there and then, on the spot. They probably sat down and went over them. Why would I blame them for not telling me?
Dr.L Well, I guess they've done a test and it's had a finding.
Then his final ploy was to tell me that I could join a scheme called “My Health” and I can look up all the results for myself, presumably, which begs the question of why I would ever need to go to a doctor. But it seems that their role is now restricted to that of postman, of ringing up when I need an appointment or managing my meds - (I am not on any).
It seems we can forget about traditional clinical practise - in this clinic at least.
Dr.L Are you on My Health? Because then you can look at them yourselves and you don't need us to even see it..
That is a way for you to see all the information…..We put all the test results on to Match My Health. So if you want to look at your blood, we look at bloods that have been done X rays consultations … We put all the test results on to Match My Health
Actually, if you have a look it is all about being a vaccination record - a bIt like a vaccine passport should the authorities choose to introduce it - and only secondarily a record of test results
That’s the way he wanted to sell us My Health.
So, I pointed out the obvious.
Robin: Well, that's that's good.I don't even need a doctor anymore?
Dr.L Well, no. . In addition to us talking to you…
Robin: Oh, I'm trained in a lot of things. You know, went through, you know, medical training, but I wasn't taught how to how to recognize lung nodules on an x ray. I'm sorry. I rely on others for that.
Dr.L No, but what would come through is you see what the last report was.
****
So, there we have it.
The three of us spent 45 minutes going round and round the mulberry bush - with us trying to explain our situation and getting nothing but obfuscation and deflection in return.
But you be the judge.
I really have to ask the question why I can have a discussion with many doctors, from the neurology department but seemingly can’t have a discussion with Dr. K, Dr. Julie, Dr. Hugh or Dr. L. - all from one medical practice.
I am sure that people everywhere are experiencing similar difficulties, which is why I am sharing this story.
But there are still good people in the medical system who are trying to do the job they were trained to do despite all the odds as medicine as it has been traditionally understood, dies.
See what I have written about this
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Hello Robin, another litany of ineptitude and quackery by the quack. You've got great persistence - I would have found another years ago. A bit difficult to find a practice these days that will enroll new patients. Looks like sarcoidosis is an auto-immune disease. See https://drgundry.com , better yet, read his book "Gut Check" and find out just how seemingly innocuous foods can create all manner of problems, including auto-immune diseases. Who would have thought a micro-biome imbalance was responsible for prostrate enlargement ? Gundry is/was a cardio-thoracic surgeon and not some fly-by-night quack.
Robin, I'm so sorry you've had to endure the idiotic lunacy you've described. On top of having some serious health issues, you have to put up with this kind of ridiculousness. I sure hope you get better soon.