Thread by @purplemamabear

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/

https://twitter.com/purplemamabear/status/1412610505986957313

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/

that these harms stop. That #pain in children is addressed effectively and that it is not ‘blown off’. I continue to be contacted by families who are placed in a position where their child’s pain is not addressed. It’s devastating & traumatic. Often the reasoning is ‘we don’t 4/

want to risk #addiction’. The @CDCInjury @CDCDirector with their #Guidelines have caused this harm. I know this is a blatant claim but with the revision of the #Guidelines & no transparency, with the multitude of concerns of other governmental entities, health org, #caregivers 5/

and #patients AND still absolute and deafening silence from the #CDC I am not sure what else to think. The harm that has been done, is glaring, yet silence. Organizations that have ‘aligned’ with the #CDC such as #CMS & other org often turn a blind eye & claim exaggerations by 6/

#caregivers & #Patients. Recently, was in a meeting of visible, powerful, connected org discussing #healthcare priorities; #patientcentered & reduction of #opioids two areas they are focused on. This org is seen as a org that is very focused on & practices ‘patient engagement’ 7/

at all levels. As a #caregiver I entered some comments I thought were relevant into chat. At first nobody responded. Then I received a private message from a committee member. A nurse who is teaching at a university. She said my comment was ‘inappropriate & nurse bashing’ & 8/

that no nurse would do what I shared. I don’t want to bash. There are amazing #nurses and #doctors but truly there are some that should not be in the field, there are system pressures on many also. Essentially she called me a ‘liar’. As #patients and as #caregivers sadly we 9/

often are not believed. Posting this picture makes it more difficult for those who have dismissed our #voices, the #voices of those that have #chronicpain, the #voices of those who love those with #chronicpain. THIS video is the reality I have experienced. THIS video is the 10/

reality of what many who have pain go through. There is an issue that many have ignored and allowed to continue. This is harmful & traumatic To those in #healthcare that have listened, have heard us, see us, raise your #voices for us, thank you! I posted because as parents 11/

our children’s’ pain continues to not be effectively addressed. Yes, there are pockets where care is effective but I believe that is the rarity. The #Guidelines have made it much more difficult. That’s the reason I shared, that’s the reason the mom gave permission. 12/

second I hope I can post another picture of where this little girl is today. She had the #AITTP and is doing much better. This is a complex surgical procedure. Some kids come out with a few issues, others come out have significant life limiting issues. In the last several 13/

months we have lost a youth due to complications & one to suicide. Those w significant complications struggle even more to access care & and appropriate #pain treatment. For this little girl however thus far has been successful. She is doing well! What she went 14/

through should never ever happen but it does and it has over and over again to so many children. The #Guidelines were never intended for the #pediatric population but they have been used to develop pain protocols for treating children’s pain. #Pain care (imho) was dismal 15/