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Living With Facial Pain

Opinions Needed -- Should I Advocate?

#1

Quick History of Situation:
I received a letter from the major university in my area, which my neuro became associated with several years ago, at the start of the week. I was advised my current neuro was moving offices and would be about a hour away. I could stay with her or they (the university system) would reassign me to local neuro. However, the new doctor will not prescribe any narcotics to any new patients and I would be considered new. This has fundamentally taken 60 local neuros away from me (yes, 60, I checked the list of neuros affiliated with the university system).

My Response:
I sent a letter to the medical governing board, filing a complaint against the director of the university medical center neurology department for this action, pointing out I have been summarily dismissed and denied a therapy I have been on for 25 years without so much as a glance at my medical records.

The Medical Board Response:
Within 72 hours the legal department contacted me. They would like to move forward with the complaint but feel it should include my name as the complainant. The release letter to use my name also includes permission to access “all information relevant to the complaint, including medical history.”

My Feelings:
In theory I don’t mind being turned into an advocate for proper pain med use in chronic conditions. In reality I’m terrified this will “put my name out there” and make it impossible for me to get a new doctor if something happens to my current neuro (I’m staying with my current doctor and making the drive to the new office).

Should I allow my medical records to be released as part of my complaint? What do you think?

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#2

I think it is a really good sign that they got back to you so quickly. I would contact the legal dept. and ask for more information about who will access your medical history, and who will know your name and the fact that you filed a complaint. Perhaps you can get something in writing that will help you have some confidence that your name and history won’t be “spread around”. Patient confidentiality is something that is taken very seriously, for good reason. Hopefully you can get this resolved so that you can get another neurologist at that university–I always think they have the latest and best treatments available.

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#3

Hi Azurelle
It really depends on how much stress that you can take.I know in some legal situations they make you,personally,look like an addict.a manic-depressive or any such things-just so you quit your complaint.
It might be important to find out what they are going to do with your records before you agree to release them.In my experience,with my son,they pulled out all the sketchy stuff that happened over decades-so I would be wary.
And how sad:
a University Hospital denying ALL patients narcotics,no matter their history.

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#4

Hi Azurelle,

Oh my goodness, that sounds absolutely terrible. I think you got some got advice from ziggy and Ellen6. My advice would be to inquire what would be done with your info and who would see it, as was already suggested, and then if you’re okay with what you hear, proceed with your name on the documentation. It sounds like they think this action is valid and has a reasonable chance of success; otherwise, I don’t think they would have reacted as they did. These neuralgias are known to be serious business; no reasonable medical professional would think to suddenly withdraw treatment that has been alleviating a neuralgia patient’s suffering. You’re not asking for anything unreasonable here, not asking for some kind of special break, not revealing yourself to be difficult – this request is all very normal and to be expected. You (and many others) have much at stake here. It’s important. I wish you every success with this! So sorry you have to go through it. I think your voice will go far.

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#5

I think Ziggy summed it up perfectly - you really need more information to make an informed decision. But why the blanket withdrawal of narcotics? Is this some government crackdown thing or is it because they don’t believe narcotics have a place in neuropathic pain? You’re in Canada, aren’t you? Do they have a ‘war on drugs’ like the US?

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#6

I’m in the USA and I have no idea why the blanket withdrawal of the writing of narcotic prescription by the university medical center, which is why I filed the complaint in the first place.

I spoke to the legal department today and wasn’t comfortable with their answers about my medical records. They say it’s so they can legally receive medical records from the university as part of the university response to my complaint - the university has to respond in writing with supporting info. But, the university never had access to my records in the first place, it was a blanket letter that went out with no regard for medical history in the first place!

Which, come to think of it, is how I’m going to respond for the request for the waiver, that since no one took my medical records into consideration in the first place they certainly don’t need to do so after the fact, they should have to justify the withdrawal of care without reviewing anything about me since that’s how the withdrawal happened originally.

azurelle

---- Woman_with_the_elect ■■■■ wrote:

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#7

My apologies, Azurelle, I’d got it into my head you were in Canada, but that at least explains why you’ve been caught up in the middle of America’s crackdown on opioids. I think the US maybe has the highest opioid (or narcotic?) use in the world and the government’s idea of dealing with this is just to ban opioids across the board. They seem to have an idea in their head that everyone is ‘drug-seeking’. Horrible for people caught up in the crossfire who actually need the treatment for any quality of life. Plus, of course, it betrays that fatal thinking error that everyone is addicted to the same things (blatantly not true) and you can remove addiction by just taking away the substance. They didn’t learn anything from prohibition!

Best of luck taking on your university’s bureaucracy. That’s never easy, but it might be worth your while to find out why they have made the decision - could they be under pressure from someone else? Here we can go to our MPs (members of parliament) or our local councillors. I assume you have some local government officers that you could likewise petition/ complain to? Might be more effective - if the university is bound up in someone else’s politics. Very best of luck with it.

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#8

UPDATE:

I declined to allow my medical records to be accessed.

After about three weeks I received a message that my complaint had been closed because upon review there was no violation of any current laws and no breech in established standards of care.

Which, actually, is true. We have no standard of care! All we really have is anecdotal information that’s used as treatment guidelines.

I was also advised that although no formal complaint would be filed at this time against the university my complaint would be kept on file and any others coming in about the same thing would be combined with mine, once a certain pattern has been established (or, I guess, a tipping point has been reached) the issue would be reopened and re-evaluated.

I was also advised that although it’s not a formal complaint, my concerns were given to the university via the state medical board.

So, in the end, it’s not a win, exactly. But it’s not a lose, exactly, either.

We all need to start complaining when care is declined! This fake-news narcotic crisis is a witch hunt! More people are killed by driving and texting than by narcotic abuse but no one is calling for a ban on cell phones or cars!

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