Beth Steckler (she/her) Profile picture
Patient & caregiver advocate. Interests; chronic pain, diabetes, pancreatitis, patient/caregiver engagement, dedicated 2 improv SoC 4 ind w complex health
Laurue2 Profile picture chrisforhair Profile picture Primary Importance 2020 Profile picture 3 added to My Authors
13 Sep
#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/
to those with #chronicpain & the belief by many physicians & professionals that psychological strategies will alleviate #chronicpain as a stand-alone strategy. I DO believe that psychological strategies CAN be of benefit addressing pain, but, how #pain is being #pathologized 3/
Read 11 tweets
17 Jul
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
of these guidelines continuing? Why are those who have benefitted from #opioid #pain medications being removed, shamed & stigmatized? Why is care not individualized? It’s very clear our #voices have not been heard. There is nothing that was said that eased my concern for 3/
Read 19 tweets
16 Jul
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/
#pain physician & had a long talk about #opioid #pain #medications being best option for him. Removing individuals w #chronicpain from #opioid pain medication was not a decision based on individual care of #patients BUT @SanfordHealth taking care of own needs. Multiple 3/
Read 12 tweets
13 Jul
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/
around the #patient or patients needs. Thus, if the value based metric is reduced hospital admissions, this, on the face seems straight forth, however if the patients needs are not taken into account but only focused on established metric, costs could (& I will argue often r) 3/
Read 14 tweets
11 Jul
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/
focused on making millions of dollars of the backs of those who are vulnerable. We have allowed this, we must change this. One persons voice I appreciate is @RepKatiePorter but others must understand the harm occurring. Our system is not functional. For some reason those 3/
Read 4 tweets
8 Jul
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/
witnessed first hand the harms of pain ignored, not treated, under treated or labeled as #psychosomatic. I remember very vividly how my kids would arch their backs in pain & scream. How helpless I felt. I have seen the repercussions of this #harm & am absolutely obsessed 3/
Read 15 tweets
7 Jul
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/
#parents and #patients feeling angry & abandoned. One of the reasons I started getting involved in #advocacy is that my kids #pain was dismissed, they were labeled. This leads to #trauma, #chronicpain & distrust of #physician. What HCP need to understand is that when this is 3/
Read 7 tweets
8 May
#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/
Read 21 tweets
25 Apr
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/
I want a coordinated approach that is patient and family centric that takes into account barriers of treatments. When I say I want a variety of strategies & treatments I absolutely mean it. My kids have utilized ACT and CBT in a variety of settings. Sadly in only 3/
Read 15 tweets
25 Oct 20
#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/
in order to ensue that physicians would listen to me. I’d provide them with the names or our specialists. A few times physicians listened many times they did not. So often my husband was questioned about his alcohol use relentlessly EVEN with the test results. It was a 3/
Read 16 tweets
1 Oct 20
My daughter has been having some pretty bad pain days. She has struggled with sleep more then usual. Tonight she came & laid by me in my bed. Sheer exhaustion took over. She is ‘sleeping’ but it’s not restful. She is whimpering and moaning in her sleep. This is 1/
a reality of pain. Yes she benefits from opioids but she also uses other techniques; distraction, stretches, hot baths. The reality for many is that even when you employ distraction, mindfulness, as well as other modalities it is NOT enough. This is the last day 2.
of #PainAwarenessMonth and I go out with a heavy heart. There is still such harm occurring, such stigmatization, inability to access quality care. There is an effort to silence those that have benefited from LTOT by labeling and providing a DSM diagnosis. To those 3/
Read 5 tweets
1 Oct 20
I can’t.
Do they not realize that pulling individuals from #opioid medications also causes suicide ideation and attempts?
#Paincare in the US is awful. Maybe there are pockets where quality care can be accessed but as a caregiver and advocate for many w #hereditarypancreatitis 1
it’s inadequate, stigmatizing and traumatic. I am tired of waiting. I witnessed the traumas my husband and kids went thru and my hope was to raise awareness that others would not have to suffer the same. The #CDC as well as other entities imo has put the horse 🐎 b4 2/
the cart. Why not look at developing options have less risks instead of trying to gaslight those that have found relief and QoL thru LTOT. Quite honestly it’s a ‘cluster’ and not getting better. I understand that there are wide variances of pain and intensities 3/
Read 5 tweets
28 Sep 20
One of our local Universities received a grant to implement #OneRx. I find the actions that they encourage highly alarming & stigmatizing. 1) approach patient to discuss only partial fill on #opioid medication 2) provide naloxone (ok with this), 3) refer to MAT 1/ Image
My kids see a team of physicians who know their medical issues. Their issues are complex. I am not sure what I would do if a #pharmacist approached the kids to engage in discussion of only partially filling meds or referring to #MAT. It’s as though there is no understanding 2/
that most on #opioids have seriously tried other modalities of treatment. What will it take to have a balanced narrative instead of one completely #stigmatizing & #shaming 3/
Read 4 tweets
22 Sep 20
Addressing #PatientSafety in Healthcare:

I received a call tonight from a mother whose adult daughter was brought via ambulance to the ER. She was in the middle of #pancreas flare. She is 19 & is living with bf. He is the one that made the call. She was in the bath at time 1/
and due to pain and nausea could not get out. Paramedics took her from tub. She had no clothes on (totally understand this was emergency). During transport to ER ketamine and fentanyl were administered. Once at ER she was NOT taken back to bay, instead she was 2/
placed in the lobby on chair. She was left alone in lobby. Her bf was there but no one was monitoring vitals or reactions of medication. The young woman was disoriented. Her boyfriend unsure what to do. While they are ‘adults’ they are young 18/19. The young women 3/
Read 12 tweets
17 Sep 20
Bravo 👏🏻 👏🏻👏🏻 to @Alberta_Pain. Pulled up their ‘Conference At a Glance’ & what do I see? People with #livedexperiences on the agenda. Thank you! Recently another #pain conference was held void of those w #livedexperiences. One ☝🏼 presenter, a #physician defended
the absence (or imo exclusion) of those w #livedexperiences by indicating #painpatients would not benefit due to the complexities of the information, nor would this #physician want those with #pain at the conference. My position as a #caregiver as well as advocate for 2/
better pain care, ‘nothing about us without us’ and to be blunt if you have difficulties as a #physician with having those with #livedexperiences participating, you need to evaluate your own issues. As an #American I give kudos to #Canada. I am impressed with their 3/
Read 5 tweets
15 Sep 20
Just listened to this podcast & it moved me to tears. I recommend #zebras, those with #complexconditions as well as those w #pain listen. My daughter has been deemed a ‘difficult’ #patient a #noncompliant #patient. Her chart is filled w truly notes that leave #physicians & 1/
other medical professionals biased. In a sense she was ‘difficult’ but 4 good reason. She had been dx at age 1 & had so many failed treatments & procedures. Her #voice often was dismissed bc she was young. As parents our voices were dismissed bc we were parents. 2/
With each failed procedure, with each dismissive action by #physicians she bc more difficult. Add in that she also had pain w her condition. And she knew what worked & this seen as ‘seeking drugs’. She also had a few irregular drug tests - which caused pain meds 3/
Read 11 tweets
14 Sep 20
This infuriates me 4 a plethora of reasons. I am only going to address a few. First, that both medical school & clinic/hospital administration seem to know zilch about overall well-being of individuals is frightening. For Godsakes you are in the health profession - 1/
figure it out & if you can’t get out of medical education or clinical/hospital administration. Second, there is a crisis; we are losing physicians. They are choosing to leave & devastatingly we are losing some to suicide. It’s NOT due to ‘burnout’ it’s due to the 2/
system & poor admin practices (such as not allowing a break for pumping 🤦🏻‍♀️). Support your #physicians. I just listed 2 issues, there are tons more issues with this, such as the overt sexism. #ClinicAdministration #HospitalAdministration get it together. As a #patientadvocate 3/
Read 4 tweets
12 Sep 20
Still struggling with the wording of this invitation. ‘#COVID-19 has exacerbated the raging #opioid crisis driven by the nation’s more than 50 million #pain suffers......’. I have contacted both @RepJudyChu & @RepWalorski office to express my concern & to 1/ Image
attempt to understand why the blame for the #opioidepidemic seemed to be placed at the feet of those that have #chronicpain. In the past years the # of #opioid pain medication prescriptions have plummeted yet rates of overdose climbed. Many individuals with #chronicpain 2/
who benefitted from treatment from #opioids have been pulled off & abandoned; their #QoL decreasing & suffering increasing. My kids & my husband were/are part of the 50 million that experience/experienced #chronic pain due to #hereditarypancreatitis & #pancreascancer 3/
Read 5 tweets
9 Sep 20
#PainAwarenessMonth
My kids have #hereditarypancreatitis. The pancreas can weak havoc on ones body; nausea, malabsorption,vitamin deficiency and #pain; horrible pain. The option we were given was 2 remove #pancreas, spleen, half the stomach & other ‘parts’ to 1/ Image
ensure that there 75% of developing #pancreascancer did not occur & that it would address their pain. It did not. They both came out with multiple complications. While this transplant CAN produce good outcomes there are a number, such as my kids left with #pain 2/
and multiple life issues. Many have been abandoned by the hospital that did the transplant & are having to navigate the system to figure out care. When you have no #pancreas, no spleen, only half a stomach constant #pain, malabsorption & an entire host of issues 3/ Image
Read 5 tweets
7 Sep 20
#PainAwarenessMonth
#Pain impacts all areas of ones lives. It’s difficult to address. The current climate around those with #chronicpain is full of stigma & biases. The narrative that #opioids are bad & do not assist those w #pain or that there are a plethora of non-opioid 1/
continues to impact those that have #chronicpain negatively. IF you have #chronicpain you are acutely aware that care for those in #pain is poor in the USA. There may be ‘pockets’ where one can access superb care but I believe it is few & far between. We did NOT need the #CDC 2/
guidelines. They were Honecker by an ‘expert’ group whose sole focus was on #SUD NOT the treatment of pain. I believe they took the guidelines and encouraged the misapplication of these guidelines. Instead work should have been done to focus on better treatment options 4 those 3/
Read 11 tweets
6 Sep 20
This makes me so furious. I don’t know what has to be said to make individuals aware that #opioid #pain meds benefit many. I don’t ever condone violence, ever, yet try to put yourself in inds shoes who have benefitted from #opioids & their QoL has improved. Many of these 1/
Individuals have had medications ripped away due to #CDC, #PROP, the misapplication of #CDC guidelines, anti opioid advocates (that advocate for OTHER opioids). Let’s have a balanced approach. Peoples lives have been harmed. Not just theirs but their families 2/
This is #PainAwarenessMonth & it’s been a struggle seeing so many who do not and will not understand the experience of many with #chronicpain. For those throwing around ‘there are many non opioid options’ no, there are not & most of the time those on opioids have already tried 3/
Read 4 tweets