Thread by @purplemamabear

#PatientCentric care, #PtExperience #Tokenism, #HoldingSpace #WeAreBetterTogether ⚠️ long thread.
Recently I attended a meeting of an organization whose focus is in improving #healthcare. This is a highly respected organization. One ☝🏼 of their founding principles is the 1/

engagement of various #stakeholders including #patients and #caregivers. This was not the 1st meeting of this org. I have attended. I walked away from this particular meeting sad, frustrated & a bit angry. The topic was on #patientcentric care. A topic that is near & dear 2/

to me. The caliber of individuals involved was spectacular; academics, researchers, consultants. As I scrolled through participants as well as listened to the conversation and watched the comments come across the screen I was enthralled with the dialogue however 3/

I did not see representation from #caregivers and or #patients. It can be intimidating for some #caregivers and or #patients to engage in dialogue with those that have studied healthcare, teach at universities or are consultants. I believe that IF an organization is going to 3/

commit to the #engagement of multiple #stakeholders there must be thought 💭 into how all can have an equitable voice at the table. This can be difficult but it CAN & MUST be done in order to move the dial #healthcare. I have worked in multiple systems & have consistently 4/

addressed the need to assure that those with #livedexperiences are at the table & that their time & expertise is recognized. Most importantly I have pushed to assure that care provided is #patientcentric. That #voice & #choice of individual drives care. This can be 5/

uncomfortable for some but we need to recognize how our behaviors & biases, organizational structure, norms, culture can be a barrier to true #engagement.
Back to the meeting I was at. Based on topic I did share via chat function a few comments & experiences. 6/

Not only do I have #livedexperience as a #carepartner, I do #advocacy also. I shared a story illustrating how at the direct care level #patientdirected care can be lost. Quite honestly, in our current system I believe #patientcentric care is the exception NOT the norm 7/

I shared how a young women with cancer had been told by oncologist that she would need radiation & then need to take a chemo pill 💊 the rest of her life. The #patient indicated that she would do #radiation but she refused to take the #chemo pill. The #patient inquired about 8/

other options. The oncologist told her there were no other options. This was necessary protocol. Upon leaving the office nurse reinforced the #oncologist position telling the #patient that unless she took the #chemo pill she would not survive. The #patient called me in tears. 9/

This is NOT #patientcentered care nor appropriate. I received a private message from a nursing professor who chastised me for 1) bashing nurses and 2) told me a nurse would never do that. I immediately PM her my apologies. My intention was not to ‘bash’. I’ve had many 10/

amazing experiences with nurses. I went on to emphasize that the interaction occurred & that interactions like this often occur. Initially I felt bad that she had felt that I was attempting to ‘bash’ a profession. Then I got mad. Here was a member of an organization that 11/

purportedly values #patientexperience and #caregiver experience openly discounting what I shared. She literally indicated that a nurse would not do that. Quite honestly I am still very angry. I truly believe that in order to improve #healthcare all stakeholders 12/

need to come together & problem solve. It became very evident that what was valued at this meeting was only the academic voice - don’t get me wrong - the academic voice IS needed. BUT the voices of those with #livedexperience are also needed. In this meeting, no space was 13/

held for those with #livedexperience. In fact, the actions of this board member demonstrated the exact opposite, #patient #voices do not matter. While this was one meeting, one organization, I am frustrated as I continually hear of organizations valuing #PtExperience & 14/

lived experience yet how this is actualized is often marginalizing (I.e. a hospital saying it values #patientexperience & it is central to care yet engages one ☝🏼individual with #livedexperience to represent all). Not just as a #caregiver but as a #professional 15/

working in systems I am tired of the bullshit. I am tired of those within the system NOT looking at their own behaviors as well as system issues and how they impact care of individuals. I am tired of those who are in positions of power not being ok with examining their 16/

behaviors. We are humans. We are going to make mistakes. That’s ok if we are attempting to learn, grow and do better. Grace is necessary but to those not willing to examine how their behaviors impact #patients & #caregivers they need 2 leave #healthcare. I’d also like to hold 17/

myself accountable as a #caregiver. Over 21 years I have watched my husband die due to a #medicalerror. I have watched my children suffer mentally & physically because physicians and other HCP excluded our #voices. That has deeply impacted me. Coming to tables, 18/

I have to be cognizant of biases due to these exp. I have to work to acknowledge these biases so they do not get in the way of me listening and learning. Finally, I’d like to a shout out 2 a group where I’ve seen various #stakeholders holding space for each other; #patients, 19/

#caregivers, #nurses, #researchers, administrators, #advocates, etc thank you #HCLDR @hcldr. Thank you for being an example for inclusive discussion & holding space for all! #BetterTogether 20/