Thread by @K_Bishof

Intimidation & retaliation towards #chronicallyill & #disabled pts is an #epidemic w/in the #healthcaresystem. Dare advocate for yourself, you're labeled as difficult/aggressive. After filing a complaint at the direction of another clinician, I received this threatening letter.🧵

I will start off by saying, I did not sign this letter. I’ll probably lose access to 20+ clinicians for refusing to do so. I will not be threatened into settling for subpar or absent care, nor risking life threatening complications because a clinician cannot take accountability.

This letter is significantly unprofessional, riddled w/ false accusations & libel, & lined w/ some of the most obvious condescending, patient-blaming, gaslighting, chastising, & belittling language. It radiates scapegoating. It’s font & spacing changes also = it was customized.

So what happened?

I’ve had a multi-year process to getting a port placed. Port was then unexpectedly placed by an unplanned physician due to hours long delay & emergency case, who knew nothing about my complex & extensive history.

I began experiencing issues related to pain, and was told that there was no ability to treat it since I was outpatient and to take a Tylenol or just go to the ER (more medical trauma).

I explained that the pain was positional & I just wanted to get the pain handled which requires an assessment of the port pocket/ location, patency, etc since you know, #femaleanatomy affects movement in the chest, which clearly I can’t change.

Over several days the surgeon made several statements via MyChart that he would place orders for an US and port assessment. He didn’t. I then asked for him to assess me when inpatient for my double tonsillectomy and lymph node excision. He said yes. No one came.

In between the port placement and second surgery, I was in such significant pain, & worried about the major upcoming surgery given the pain I was already in. I consulted psych to navigate the process, who I actually found very helpful in helping to create a proactive plan.

No one followed the plan.

Post double tonsillectomy I was completely unable to talk and advocate for myself. I had to depend on writing & the utilization of MyChart. This need was continuously ignored.

After two weeks & many messages to this surgeon to get the port assessed, after all his promises about orders, & coordinating with his team… there were still no orders placed, & no assessment had.

Other clinicians got involved, and they too were largely ghosted.

Since my August 22 port placement, it has not been accessed, & home health has refused to come out to access given the pain I am experiencing before full assessment & clearance. I emphasize this again to the surgeon who still ghosts me.

I contact psych to discuss what’s happening & get some advocacy help. I’m advised to submit a complaint to patient experiences (that they too would send things over for) since I have received zero care, it’s impacting other care delivery, & I have not been properly responded to.

I go to a completely other doctor today & received a surprise visit from patient experiences & social services. Something I was not physically or mentally prepared for. Why? Because the health system was told by the surgeon, who ghosted me that I was aggressive.

Both the reps from patient experiences & the social worker acknowledged that they recognized advocating for myself was not aggressive, & that I physically could not talk to advocate for myself & had to rely on MyChart communications (character & attachment limited). However…

Patient experiences then attempted to get me to sign a form (top of post) riddled with false accusations, basically stating that if I did not agree to their terms, derived from false accusations, that I could be dismissed from the health system, where 20+ of my clinicians are.

Despite this risk, I will not be threatened into silence, fear, or feeling guilty for advocating for myself. I remained professional in all communications w/ the provider. I was factual & relayed my exact patient experience. Patient advocacy is what I do, this isn’t going to fly.

So, only after submitting the complaint does he claim I’m aggressive after weeks of trying to get him to simply place the orders needed to assess a port placement leading to my heart, causing constant positional pain, & movement that he said at least 6 times he would do.

Never in my life as a healthcare professional, patient, or patient advocate have I ever seen such a letter provided to someone basically threatening them with loss of their healthcare if they dare speak up for themselves. I, and others are appalled at this approach/ response.

This is retaliation.

This was not meant to resolve any issues as there was & is still no plan of care in the works or happening. No one wants to clean up another clinicians mess. This type of behavior makes you a target for all care experiences after to cause harm due to bias.

This has been a highly traumatic experience for something that was supposed to be celebrated after such a long road to obtain.

Instead, it has had the complete opposite effect, has only amplified my medical trauma & development of being adverse to seeking care.

I have now had to consult w/ psych again as the ppl aware of my history & who tried to advocate for me, & as the ppl who advised me to make this complaint bc they need to speak up & stop this, especially as I did not sign this form which likely = them kicking me out of the system

Now I’ve been forced to go to the ER (different health system) as I’ve had consistent shoulder pain (new) to get a port check to be told the ER isn’t capable of a port check.

WHAT LIVING HELL IS THIS?! Oh wait, #FloriDUH

I remain w/out access, meds, assessment, continuity of care.

I remain ruminating on the compounding trauma induced by clinicians who need years worth of sensitivity training & a revisit of their oath to do no harm. Leave your god complexes at the door & help your patients.

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