Thread by @purplemamabear

Almost 25 years ago I entered the world 🌍 of #raredisease when 1st my husband was dx w #PRSS1 & then our children.
What I’ve learned is #HealthcareInAmerica is brutal & often #harms those most in need.
The system is broken.
There is no disguising it.
I believe that our 1

#Healthcare system truly only benefits a small populous; individuals that are mainly #healthy & don’t belong to a marginalized group.
There are monumental system issues that need to be addressed that impact #medicalprofessionals ability to provide necessary 2

care. I understand that. I believe that #patients, #caregivers #medicalprofessionals need to work in collaboration to push back on the systemic issues that plague the system. I absolutely can give & find grace in many situations.
What I have no time for is the void of 3/

dignity & mutual communication in #Healthcare which very often leads to #harm. 23 years navigating this system & I still, too often, hear & see individual actions of #physicians that cause #harm. I want to be very clear here, I am talking about #harm that is absolutely 4/

avoidable. My friend is in the #hospital w her beautiful daughter who has a ultra #raredisease. Her daughter needed surgery. Team rounded today & discussed (well not discussed but told ) plan for discharge. My friend brought up her concerns re dx, very valid concerns. 5/

This little girl is alive and thriving in spite of the #healthcare system. My friend has always been one step in front of the system. She has had to tirelessly advocate to get the care her daughter needs. There have been few #medicalprofessionals that have 6/

listened & partner yet far more where energy is exerted just to get a #physician to listen and take in ‘big picture’. I look back at our journey. IF many of the #medicalprogessionals we had encountered actually participated in mutual communication & listened I could have 7/

saved the system millions of 💵. Instead my kids were #harmed & the system spent more 💰 then they would have had to. Exactly case with my friends daughter. If they release there is no doubt she most likely would have #medicalcrises & need to be #lifighted back to out of 8/

state hospital. More costly AND very traumatizing to child & family. When my friend was providing her reasoning Thevlead team doctor rolled her eyes. Many #caregivers & #patients are cognizant of the subtle non verbal communication between #medicalprocessionals 9/

meant to dismiss us as #patient or #caregiver. These subtle non-verbals are hurtful & harmful but this doctor looked directly at my friend and rolled her eyes. If you are a #physician and you do this you are part of the problem. There is no excuse. Not one ☝🏼 person on that 10/

team said anything to the physician. It makes me angrier that this #physician felt comfortable doing this in front of her team so blatantly- says a lot. This, is #harm that is inexcusable. My friend thankfully had the courage (yes courage) to address this disrespectful action. 11

Nothing was decided re discharge. My friend has valuable information re her daughter that is vital to any #healthcare planning, why is she seen as though she is ‘that’ parent? Why is her knowledge that has literally saved her daughter not being recognized in planning? Why did 12

She find herself trying to convince team she wasn’t trying to ‘stretch out’ a stay but laying out her knowledge as what has been best for her daughter. I. Am. Tired. So. Tired.
My goal in advocacy is never to bash - we have a system in crisis. The system in crisis is doing a 13

lot of #harm to many people. I think there are many good physicians working in a broken system doing double duty caring for #patients & pushing back on systemic issues. Yet this happens far too often not to address. Not to scream from the mountain tops. This behavior is 14

not acceptable. It needs to be called out AND it’s also evident of larger issue. This doctor had a plan for discharge had discussed w team & told mom (wo discussion). I am tired that #patients & #caregivers are suspect when they have knowledge of their disease, knowledge of 15/

what meds have worked for them in past, want to be an active #voice in their own care, pose questions yet have to pose them multiple times to get a response. I am tired that #patients & #caregivers can’t just focus on their #health, their child’s health but have to constantly 16

fight multiple entities to access care. I am tired that we have talked about this to death but no major action. Our system is imploding. As a #caregiver I don’t have anymore time, action is necessary @LelenaPeacock @ibdgirl76 @TobyLunstad @SpicyPurritos @life_is_art___ 17

@SecBecerra @CMSGov @POTUS @FLOTUS @VP @NavigationsSOC @Pain_Speaking @Irishbrat1966 @SenJohnHoeven @SenKevinCramer @RepArmstrongND @JSG_54 #medtwitter #NEISvoid @lockedoutofvenu @EqualityCouple @hope411adcock @kris_lovaas @SolidFooting @Surgeon_General @pppforpatients 18

@suerobinsyvr @CDCDirector @HappyWarriorP @BetoORourke @RepKatiePorter 19
#BringingMyFoldingChair