Thread by @purplemamabear

After years of my daughter receiving care at our local #hospital that is often based on #bias & is often subpar I have begun to reach out to different state agencies. The experiences that my daughter has had to experience over the last several years has been surreal 1/

I’ve attempted many times to engage with #patientservices w various staff in attempts to implement a plan which is based on her needs, recognizes the #medicaltrauma she has experienced & how it impacts her. I’ve attempted to explain how her diabetes works (to the extent I even 2

understand. Type 3 is brittle, it can shoot up or down for numerous reasons. I’ve tried to explain her complications based on her #AITTP but instead assumptions have been made and that what care has been based on. In reviewing her chart it’s truly horrifying their utter lack 3

of understanding of her issues. My daughter hates her illness. Her diabetes very difficult to manage, constant pain, malnourishment, GI issues yet their perspective is that the driver of hospitalizations is ‘she likes the hospital’ & her ‘mental health’. Further back in her 4

record it talks about her unwillingness to engage with providers. I not sure how these ‘providers’ expected her to engage when the following are examples of how she has been treated:
➡️that she can’t have pain because her pancreas has been removed
➡️that diabetes doesn’t 5

‘Work’ like that (by 2 @SanfordHealth security guards)
➡️she has been denied blood sugar checks by nurses when requested bc she is just ‘anxious’. When I attempted to intervene via phone they also denied my request. I needed to contact #housesupervisor to go provide care. My 6

daughter was at 50. She was terrified.
➡️She has been repeatedly call to her face ‘druggie’, ‘addict’
➡️she has been shamed because she struggles to control blood sugar (note even in the hospital they struggle to control it with bs in 200 and 300 or dropping rapidly. 7

➡️last month a hospitalist argued with her, telling her she was lying about not having a spleen - she stated she’d had gone through he chart & their was nothing about it. Not ever sure why this was brought up.
➡️this doctor also told her that there was no reason she should 8/

have back pain (she had an ablation which caused harm to back & killed islets in liver)
➡️she was accosted in her hospital room by security guards and hospitalists at @SanfordHealth accusing her of taking drugs because she was nodding of as well as injecting her self w insulin 9

in order to ‘create a medical crisis’
➡️In this same incidence the hospitalist stated ‘I know why you are here, I read your chart’ (meaning drugs)
➡️same incidence the hospitalist mocked her while she was on phone with me saying ‘she was an adult & shouldn’t need her mommy’ 10

My daughter has struggled with her illness. She has struggled with adherence to treatment plan. She has #chronicpain, her blood sugars incredibly hard to manage, she has been on #opioids since young, she has GI issues & #medicaltrauma. For years fighting to be able to have 11

@SanfordHealth sit down with us to develop a trauma informed plan that acknowledges her Type 3 diabetes her complications from AITTP. As a mom I’ve struggled attempting to keep her alive, trying to get her to adhere to plan of care when #medical system bases care on #biases 12/

assumptions and no actual information relating to her health issues. In January after years and years of this we went back to where transplants were done. The specialists wrote a letter and electronically placed in chart that the issues she experienced were related to 13/

complications to AITTP but instead of that ‘flagged’ her behavioral plan flagged (she told Drs and security guards to ‘f’ off when accused of taking drugs & injecting self). @SanfordHealth medical center and Health Insurance have implemented ALL kinds of plans wo her #voice 14/

wo my voice. After this last weekend when it was a struggle to access the ER and by time did get there her hemoglobin was 5. The theory for her hemoglobin of 5? Bloody noses even though she was stooling blood. They did an upper and nothing else. No call to ENT to determine 15

if issues - since that was the theory provided her bloody noses caused bleed. No stool samples though massive blood & other indicators of issues. I HATE sharing this. My daughter HATES that this is being shared but at this point I’ve contacted every agency in #NorthDakota & 16

well concern is expressed it’s not in anyones purview thus @SanfordHealth Bismarck can blatantly violated #patients rights & allow #biase to impact care. It’s NOT all we have had many good physicians. My son has a marvelous primary doctor. My daughters has been able 17

to begin a trusting relationship w her. I find it appalling. Sanford is a monopoly and has deep pockets they obviously can do as they please. I’ve made complaints at various fed levels & will continue. One state representative apologized it was not in their purview 18/

and commented that the documentation helpful if she dies……. yep they can continue. So asking for help RT as their needs to be accountability before the documentation will be useful & for me that’s to late. All I’ve ever asked is a plan that includes my daughter, takes into 19

consideration her #medicaltrauma and her health issues @aander1987 @LelenaPeacock @tal7291 @hope411adcock @Pain_Speaking @speakingabtpain @ChadDKollas @GhanaboyPharmd @SenJohnHoeven @HeidiHeitkamp @Memej99 @SpicyPurritos @PainPtFightBack @DanLairdMD @hope411adcock @OIGatHHS 20

@Terrilox @NDHospitalAssn @LelenaPeacock Physicians medical personnel should always feel safe and respected but so should #patients. It’s unacceptable that they are allowed to violate rights and base care on bias placing my daughters life at risk 21/

@ibdgirl76 @bennessb

@DavidGilbert43

@morethanmySLE

And just to note another emergency letter sent ….. but silence