Beth Steckler (she/her) 🇺🇦 Profile picture
Focused on improving healthcare for patients & caregivers. Support patient engagement. Patient advocate. #IStandWithUkraine 🇺🇦
No Justice No Peace Profile picture Laurue2 Profile picture chrisforhair Profile picture Prohibition is anti-Liberty. Profile picture Deplorable•ArmyWife78🇺🇸★🇮🇱#UltraMaga Profile picture 5 added to My Authors
May 20 25 tweets 13 min read
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
May 18 11 tweets 8 min read
#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/
Apr 30 45 tweets 24 min read
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/
Feb 10 6 tweets 5 min read
@ibdgirl76 What I really struggle w & it’s not just re the lack of care for those in pain & stigma they face, overall the system & many (not all) inds wi not set up to address issuers #patients & #caregivers have re care. There is literally no place to go. Yes, there are 1/ @ibdgirl76 #patient representatives but they are there essentially to watch out for health facility. File a concern & most times you are not part of the process, nor do you know the outcome. There literally is a lack of protection for #patients. Maybe some clinics or healthcare 2/
Feb 10 6 tweets 5 min read
#Criminalization #SocialServices #WeNeedToDoBetter #Trauma
As someone that has worked in the system this infuriates me. I don’t understand how we think criminalization and involvement of #socialservices in this situation will do anything BUT further #traumatize this family. 1/ On FB I read ‘pearl clutching’ comments that this had occurred two times already. We are in a surreal time, most of us trying to get by. I wonder 💭 how many of those making judgmental comments have struggled to access necessary resources and been placed in a situation where 2/
Feb 6 9 tweets 6 min read
One thing I have seen weaponized against those who are marginalized and have experienced harm at those in positions of ‘leadership’ is the anger expressed. So very easy for #physicians, #researchers, #therapists, #counselors to point to the anger & exclaim ‘see how unbalanced 1/ this person is?’, ‘see how ill they are?’. When people are in positions where they have been harmed, where they have watched loved ones be harmed & it continues re of their voices, of their pleas for help, when those that are ‘suppose’ to help ignore the harms & gaslight 2/
Feb 4 5 tweets 6 min read
#Physicians in #NorthDakota who speak 🗣 out on need for necessary precautions have been ostracized and dismissed. #NorthDakota lost 3 state health directors in 1st months of the #pandemic. Public health officials have had hands tied. Those who continue to speak out have 1/ Image received threats from public and discouraged by state officials. Our state has 54% vaccination rate and #masks are optional with very few wearing. The only time our state imposed a #MaskingMandate is when our #hospitals were beyond capacity & Governor & other officials wanted 2/ Image
Oct 24, 2021 9 tweets 15 min read
Dear @OptumRx & @SanfordHealth you are NOT his #physician. You know nothing of his #health hx. Two years ago #Sanford #Bismarck #pain clinic pulled all #patients off #opioid #pain medications. This was not #patientcentered care, but care deemed appropriate BY administrators 1 Now @OptumRx & @SanfordHealth #insurance sending out letters re #opioid #pain #medications. My son had to move from a #Sanford clinic to another clinic due to #abandonment. Yep, abandonment. Plain & simple what you did was harmful & not based on #patients needs. You need 2
Oct 22, 2021 4 tweets 3 min read
Um absolutely adore this thread! I must read for #NEISvoid #CPP #RareDisease. My kids experienced much of what is mentioned in thread. 1st they have a rare disease, 2nd had a rare medical procedure to try to address symptoms, it caused complications. My kids now have T3 1/ the ‘care’ they receive has often been #traumatic as they don’t fit nicely into a box 📦. It’s because of their experiences (& my husbands) that I advocate. As young adults they still have to interact w the #healthcare industry but they are distrustful ( & rightly so). So many 2/
Oct 22, 2021 5 tweets 4 min read
I know that there are #patient advocates that take issue with @BethDarnall work but I find it critical. I know many individuals in my community that have wanted to decrease their opioids or get off all together for various reasons. Listening to their stories are frightening. 1/ What I don’t condone, is #physicians & #antiopioid proponents utilizing work done such as @BethDarnall or other psychologist that work in the area of #pain to be dismissive of those with #acute or #chronicpain. Sadly, this occurs all too often and has caused a distrust by 2/
Oct 21, 2021 5 tweets 4 min read
Warning ⚠️ ⚠️ I AM snarky. I get that we have an individual responsibility for our health. I get that but articles & comments as below definitely get my snark up. My kids have T3 #diabetes which is unbelievably difficult to control & truly cannot be controlled with #diet. 1/ ImageImage furthermore inds present differently with T1 & T2. My nephew’s bs actually skyrocketed when playing basketball - a sport he loved and was good at. #Diabetes is hard to manage & costly. Furthermore there has been research highlighting harms of a restrictive diet particularly on 2/
Sep 13, 2021 11 tweets 10 min read
#PathologizingPain
#ChronicPain is the most prevalent health issue for Americans, yet, there is a lack of acknowledgment of the impact of pain on individuals QoL as well as access to quality options available. The last several years we have seen a proliferation of 1/ psychological strategies be touted as solutions for both #chronicpain & #acutepain. This has been fostered by the #CDC guidelines as well as various independent groups. As an individual who works in the area of mental health I am alarmed at the amount of #gaslighting that 2/
Jul 17, 2021 19 tweets 25 min read
I am perplexed how #RogerChou can not only sit on the #CDCOWG but is a lead author. He recused himself at the #CDC meeting due to #COIs bc of his work as ‘expert witness’ in Purdue litigation but is lead author 🤷🏻‍♀️ @CDCDirector @CDCInjury could you explain how this is ethical? 1/ Listening to the #CDCOWG from perspective of #caregiver & advocate was disheartening. For me @CDCDirector assurances that #patients voices were heard was meaningless. She may say that we’ve been heard but then how are so many feeling as we haven’t been? Why are the #legislation 2
Jul 16, 2021 12 tweets 12 min read
I want to again express my concern to my senators @SenJohnHoeven and @kevincramer about the lack of transparency by the @CDCDirector @CDCInjury in the revising of the #OpioidGuidelines. Great harm has been done to those w #chronicpain in our state. @SanfordHealth 1/ cut all #patients off of #opioids at once due to what administration stated was because of ‘national standard’ (#CDC Guidelines). So many harmed. How are actions like this ok? Three weeks prior to my son being removed from #opioid #pain medications we had met with his 2/
Jul 13, 2021 14 tweets 10 min read
Thread: Thoughts on #valuebased & #patientcenteredcare

Within #healthcare & #advocacy there seems to be a great deal of discussion on both #valuebased care & #PCC. #Healthcare costs have skyrocketed’ & thus a need to #reduce. I am not an #economist but as a #caregiver I 1/ definitely have seen ‘waste’. From my POV costs will continue to skyrocket even if #valuebased care is implemented. One reason (again not an economist) is the vulture ‘istic’ aspect of industries profiting from our system. The other reason is that our system is not centered 2/
Jul 11, 2021 4 tweets 5 min read
I can’t remember who said this, so I apologize, but the app -lication of #healthcare is not the answer to magically transforming the system. So many applications, portals, surveys…. They can assist but first a true cultural shift must be made in #healthcare. For this to be 1/ those working in system need to be supported. Currently our #healthcare system lays the burdens of the broken system at feet of #patients, #caregivers & healthcare professionals. So much must change. It must not be a system based on vulturism (I know not a word) of entities 2/
Jul 8, 2021 15 tweets 14 min read
I posted this yesterday with parents permission. I wanted to expand on this video a bit.

1st, a big part of me feels very uncomfortable with posting. Just like a big part of me felt uncomfortable about posting about my kids experience (w permission). It feels exploitive. 1/ Yet, when I share experiences of #caregivers & or #patients (who had given me permission to share) those experiences were/are often questioned or I’ve been excused of exaggerating. Or like many others called a #shill for #Pharmaceutical companies. I am a mother, who 2/
Jul 7, 2021 7 tweets 10 min read
I wanted to share some comments by #parents whose children have #pancreatitis. As I have shared before, the #pain care for these kids is NOT adequate. Their #pain is often not being addressed. I have asked parents to start writing up their stories to share. When #pain is not 1/ addressed it causes trauma, not only for the child/youth but parents. We know unaddressed #pain can lead to #chronicpain. I absolutely believe in #biopyschosocial approach but what we are seeing is a #psychosocial approach being utilized and #bio aspect missing. This leaves 2/
May 8, 2021 21 tweets 20 min read
#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/
Apr 25, 2021 15 tweets 8 min read
I’ve continued to see a divide in #pain community, a lack of support as well as pretty blatant attacks. My position: none of us speak for the entire community. We all have are personal stories. Each is unique and sacred. Pain occurs on a continuum and there are 1/ a variety of variables involved. As a parent what I want is a wider variety of options that is paid by insurance, I want voices to be heard, I want individual care, transparency and partnership with physicians & HCP. I want accessibility in the community I live 2/
Oct 25, 2020 16 tweets 9 min read
#PainKills
I am angry tweeting and usually that is never good but I am angry. My heart is breaking for another mother who lost their child to pain. She had her entire life in front of her. Her entire life! For many years she struggled with #pancreatitis. She was 1/ not in an area where there were many #physicians aware of #pancreatitis. I provided the mother names of experts in the field but sadly they never followed up or called. I have often seen this. As a parent I would carry around my husband & kids genetic 🧬 results 2/