Beth Steckler (she/her) Profile picture
Aug 14, 2020 13 tweets 9 min read Read on X
Not sure where to start the discussion on this article. I am very interested in multiple aspects of this paper. First, & this is just related to this paper but the overall current climate of the treatment & care of those with #Chronicpain
#HHS #Chou 1/ nam.edu/best-practices…
So much energy has gone into research looking to define optimal strategies for opioid tapering where is the energy being given to development of other medications that are as effective as opioids with less risk? I know this paper referenced that many #patients tapered 2/
experienced pain relief & increased functioning yet as an advocate I receive regular calls from inds where pain care has been reduced or cut off entirely w disasterous results. My kids benefit from #opioid #pain meds. I am nor are they opposed to the utilization of other meds 3/
or strategies IF they are as effective BUT we have found none. Financially and emotionally the toll of attempting to find other options has been exhausting & detrimental. I find the authors opening statement a bit disingenuous imo ‘Ensuring high quality, respectful & 4/
appropriate management of #chronic #noncancerous #pain #CNCP in the context of the US opioid crisis is a critical & complex endeavor’. First, research has demonstrated increased overdoses while legal #opioid prescriptions at an all time low. Second I am truly curious how 5/
the harms we have seen w the implementation of the #CDC guidelines & the narrative that #opioids are evil & all those on #LTOT should be dx with #OUD or #SUD. We have seen #abandonment, substantial decreases in QoL, depression, PTSD & even #suicidedue2pain, yet the narrative 6/
heavy on the opioid tapering. Again where is the research to develop other meds that are as effective with less risk. This is another area of dispute. Those that have found benefit on LTOT have been often silenced by the utilization of psychology and the DSM. It’s been 7/
unfortunately effective yet if one was to review history, the DSM has been utilized to silence inds often throughout history. Please don’t get me wrong. I believe the DSM can be helpful and that psychology and counseling can be helpful BUT these can be weaponized also 8/
and in the case of those who voice concern about discontuation of #opioid #pain #medication these imo HAVE been weaponized. This is just one counter I have to this paper. I did find elements I agree w yet I struggle w why the push to taper & abandoned so many when THEY/WE 9/
report relief. To me, this does not seem ‘respectful’ as the authors state in opening paragraph. Furthermore the authors also qualify #patientengagement further down in paper with a statement that tapering should be done ‘with as much #patient but in.....’. To me this 10/
statement is highly counter to true #engagement. Truly, to me it seems very parternalistic. I do not understand why the millions of dollars in funding are being provided to do research on tapering when those dollars could go into dev of med with less risk and equal 11/
effectiveness. I believe these groups as well as government entities need to look at true patient and caregiver engagement in ALL areas inclusive of research, YES research. At this point, in most aspects I see #patient & #caregiver engagement no more than tokenism. We 12/
are still truly not at the table and the harms continue @CDCgov @CDCInjury @CMSGov @SeemaCMS we deserve a place at the table 13/

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More from @purplemamabear

Nov 1, 2023
I just want to let out my frustrations w the #healthcare system & how assembly healthcare does NOT work. I think back about programs my kids went to. One being a renowned #painprogram. My focus was to assist in developing tools they could utilize in life to deal w #chronicpain 1
& their #illnesses. I wanted a #balance, I wanted a plan that was based on their individual needs. Their #pediatrician at 1st stated she had concerns w #program & not an #option for them. The #clinic called #pediatrician back saying they’d modify it for my kids. There really 2
were not a lot of options. The program promised individual care so off we went.
Nope started #titrating all #painmeds to align w time of #program vs Ind need. Then denied my daughter right to go to walk in #clinic when she was having issues saying this is what youth did 3
Read 10 tweets
May 24, 2023
Just doing some digging. #Pain is extremely nuanced. And the approach should also. W my kids #health & #pain there has been continued lack of knowledge, assumptions, & unwillingness to understand.
➡️#Anatomy of those that had #TPAIT & lack of understanding
by many docs 1
how this can impact #pain
➡️ Not identify or understanding impact of #MalabsorptionSyndrome
➡️Assumption that removal of #pancreas should immediately ‘solve’ issue of #ChronicPain
➡️ #GastricEmptying issues
➡️ Age of my kids (too young to have #pain)
➡️ Lack of 2
understanding & identification of #MedicalTrauma
➡️T3c #Diabetes
➡️ Impact of #NASH on #pain & options for #care

There are numerous factors that are critical in #Treating an #ChronicPain in #Individuals. They list of few listed above that are factors w my kids, have often 3
Read 8 tweets
May 24, 2023
Reviewing some #NorthDakota information surrounding #prescribed #opioids.
#OpioidPrescriptions #declined 34% from 2006 to 2020

Statement in poster ➡️ ‘Since 2007 every state has been working to address the #opioid epidemic & best practices are now understood’

Are they? 1
In the #Conclusion
➡️ nothing that addresses the #harm of #patients that struggled with #chronicpain. #Nothing re #outcomes of those #abandoned by #physicians & removed from #prescribed #opioids. Nothing about the looming disaster of last #physicians that #prescribe in 2 Image
#NorthDakota leaving. #Patients having no recourse. #NorthDakota absolutely has growth in area of serving those w #SUD yet in their pursuit to do this, they have #harmed those w #chronicpain & continue to exclude them in discussions or acknowledge these #harms. @hhsndgov 3
Read 5 tweets
May 24, 2023
#Apologies can be steps towards assisting in #healing #medical #trauma. When my daughter was in @SanfordHealth for 2 months, virtually #secluded bc of accusations by #hospital administration that she causes her diabetic crisis a #hospitalist & #diabetic counselor accused 1
her of ‘stashing’ #Insulin in room. All visitors searched. No items in room unless searched - camera in room 24/7 YET she is accused of injecting #Insulin. My daughter again attempted to educate on post #TPAIT. After additional days, the #Diabetic #Counselor came back & 2
#apologized acknowledging how hard it was to control her #diabetes. It’s hard control when she is at #Baseline but if she is sick nightmare. That #apology meant the world 🌎 to my daughter. She continued to work w this #counselor throughout stay & after. YET #PatientRelations 3 Image
Read 4 tweets
May 24, 2023
#Pain is nuanced
The difficulty with articles such as below example, is nuances not recognized.
For example, I could identify as someone with #chronicPain I have a few conditions that are accompanied by #pain.
My #pain is NOT unrelenting, it’s there ‘hovering’ in the 1 Image
background. I do #yoga 🧘‍♂️ & #meditation & for ME, for the #pain I experience, it provides benefit.
However, take my kids; NASH, kidney disease, gastroperisis, T3, scar tissue neuropathy etc. #mindfullness #meditation is not going even touch it. Not in anyway
2 example of 2
#pain experiences.
It’s understandable that many in nation that are not in #medical profession struggle w the #nuances
What I struggle w & what I believe #harms those w #ChronicPain is the generalization of #pain by #medicalprofessionals & lack of individualizing care based 3
Read 4 tweets
May 24, 2023
#BuzzWords in #Healthcare that often mean nothing: #PatientEngagement, #PatientCenteredCare #SharedDecisionMaking
Studies have demonstrated for years that IF #patients are #authentically involved in #care outcomes are better, yet, too often the above words thrown out to 1
attract, yet no actions follow.
How often have you been asked your desired outcome of #Healthcare?
How often are you asked about barriers to healthcare or recommendations?
How often are plans focused only on med issue?
How often do you feel your #voice is truly #valued in 2
your own #careplanning?
How often do you feel there is collaboration between all doctors OR do you feel at times doc have competing or conflicting recommendations?

#Patients voice should be central. #LetMeHearYourVoice 3
Read 4 tweets

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