#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/
BUT they are doable. Unfortunately we keep doing research instead of doing the difficult work of dismantling #system barriers, tackling philosophies that are #harmful & oppressive & putting in supports that would assist with #transformation. It CAN be done #PatientCentric care 4/
happen it’s not a secret the issue is willingness of those within the system to do the work (ironic isn’t it, sound familiar? Heard this so much when I worked in MH realm). The basics ➡️
✅ start where person, patient family is
✅ understand their concerns, needs & strengths 5
✅ coordination‼️
✅ a comprehensive approach (not just medical, MH etc all domain areas)
✅ respectful communication
✅ choice

These are the elements for improving #healthcare in #America. We can continue to do research & not authentically implement because of those that 6/
say can’t be done because of how hard. My response as a society we are teetering on the side of the cliff. Unless we do something we will be toppling over. I think it’s time to authentically implement @SecBecerra @CMSGov @CMSinnovates @RepKatiePorter @aander1987 @SpicyPurritos 7/

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More from @purplemamabear

Oct 19
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
Oct 18
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
Oct 17
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
May 20
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
May 18
#MedicalBiases #CompromisedCare #DenialofRights
This ⬇️
many may not believe this. They may find it unbelievable. I don’t. I have watched my daughter deal with the exact same abuses bc she is prescribed #opioids, bc she also has complex #medical conditions & PTSD. 1
I never know when she has a medical crisis and needs the hospital IF she will need to interact w a personnel or professional whose #biases interfere with care. These incidences can be shaming, demeaning or they can put her life at risk. My daughter has had hypoglycemic crises 2/
at @SanfordHealth where the nurses refused to check her #bloodsugars because ‘it is anxiety’ or ‘she just ate’. Even when I intervened over phone & pleaded, nurses refused to point I had to reach out to #housesupervisor. While I’ve reached out multiple times to @SanfordHealth 3/
Read 11 tweets
Apr 30
Thread 🧵: Reflections of a Parent/Caregiver After Six Years Implementation of CDC Guidelines (warning long but I am very interested in feedback)

Since babies, my kids, have intimately known #pain. At one time their #pain was intermittent & #acute. Sadly, they now struggle 1/
#chronicpain & are young adults. Our kids 1st 13/16 years of life, our family had a #safetynet, their #pediatrician. He was highly intelligent, compassionate, he challenged the system & in the most authentic sense #partnered with families. #Pain was not a major concern when 2/
the kids were under his care. The nature of their disease often brought us to the ER & hospitalizations. The hospitalizations resulted due to inability to manage #pain, dehydration, & other issues caused by a flare in their #disease. My husband & I attempted to minimize the 3/
Read 45 tweets

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