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Beth Steckler (she/her)

@purplemamabear

Mar 26

@SanfordHealth

Warning ⚠️ ⛔️ : Uncomfortable Thread 🪡
My tweets lately have focused on my daughter’s #healthcare at @SanfordHealth & our struggle to access appropriate & compassion care where her agency is not taken away. I know the threads my be uncomfortable for some particularly if you 1

are a #medical professional. I am aware that many are thinking 💭‘what’s the back story’, ‘something they did caused this no #medical facility or #medical #professional would partake in this’. I get that. There IS a back story. A child at 2 wks having her 1st #hereditary 2

#pancreatitis flare. In 1st grade undergoing her 1st #transplant. In 6th grade undergoing 2nd #transplant. Complications, no real follow up. Complications being ignored. Physicians both on #transplant team as well as others questioning her symptoms, her #pain. Dismissing & 3

Read 18 tweets

Beth Steckler (she/her)

@purplemamabear

Oct 19, 2022

#FamilyCentric #PatientCentric #ConsumerCentric planning/care thread 🧵
Even prior to my career I was interested in care that was #centric to the person, re of scenario (#homelessness, #mentalhealth, #health, #disabled etc). In every position I’ve held I’ve always centered on 1/

Before anything listening to person and or family, planning being centric, based on strengths & needs of Ind and or family. People (those working in system) found it radical but it worked it was effective. It pushed systems, thus in many places the process retreated back to 2/

‘Business as usual’ which is exactly where the problem is. We have mounds of research on #engagement we know the benefits that could be produced yet going from point A to B, is ‘too difficult’. Yes, implementing authentic #engagement would come with changes and yes they are 3/

Read 8 tweets

Beth Steckler (she/her)

@purplemamabear

Oct 19, 2022

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/

Read 19 tweets

Beth Steckler (she/her)

@purplemamabear

Oct 18, 2022

I continually see research papers and presentations given on how #childhood #trauma relates to likelihood of #chronicpain.

While I do not dismiss this may be a factor, I am very frustrated at the lack of introspection by many #physicians where #medicaltrauma due to care that 1/

was dismissive, shaming, manipulative and lacked transparency does a great deal of harm leading to PTSD & I would postulate the worsening of #pain & or #disease. It’s as if the model, is backwards. Don’t get me wrong I absolutely believe #trauma can have long lasting impacts 2/

impacts that impact multiple areas. What I don’t understand is how many physicians don’t understand how care for children & youth w #rare or #complex #health issues or/and ones that include #pain can lead to #MH issues (not always be the cause). Why is it difficult for some 3/

Read 7 tweets

Beth Steckler (she/her)

@purplemamabear

Oct 17, 2022

Honestly #medtwitter why is it so damn had to have a consistent plan in place for #patients w #complexhealth issues when person necessitates hospital frequently?

Also, why get upset with #patient when lack of coordination between #medicalprofessionals, assumption of #patient 1/

goals as well as often your own biases result in care that is subpar & harmful & leads to said hospitalizations 🤦🏻‍♀️. I understand you all are in a difficult position yourselves but you definitely have much more #power than #patient. 2

Also, why does it seem so difficult for #hospitalists to pick up phone 2 specialists? I know many of you work hard to acknowledge your biases, to incorporate the #patients voice in care planning, BUT if you are not one, YOU are harming #patients. #HealthcareInAmerica 3/

Read 4 tweets

Beth Steckler (she/her)

@purplemamabear

May 20, 2022

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

Read 25 tweets

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