Discover and read the best of Twitter Threads about #caregiver

Most recents (14)

Almost 25 years ago I entered the world 🌍 of #raredisease when 1st my husband was dx w #PRSS1 & then our children.
What I’ve learned is #HealthcareInAmerica is brutal & often #harms those most in need.
The system is broken.
There is no disguising it.
I believe that our 1
#Healthcare system truly only benefits a small populous; individuals that are mainly #healthy & don’t belong to a marginalized group.
There are monumental system issues that need to be addressed that impact #medicalprofessionals ability to provide necessary 2
care. I understand that. I believe that #patients, #caregivers #medicalprofessionals need to work in collaboration to push back on the systemic issues that plague the system. I absolutely can give & find grace in many situations.
What I have no time for is the void of 3/
Read 19 tweets
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/
the kids were under his care. The nature of their disease often brought us to the ER & hospitalizations. The hospitalizations resulted due to inability to manage #pain, dehydration, & other issues caused by a flare in their #disease. My husband & I attempted to minimize the 3/
Read 45 tweets
🗣️Reminder, we'll be starting our conversation on the impact of the #Omicron surge on family #caregivers in 10 mins! Follow us @EthnicMediaSvc to join the discussion. @CalAging @blackvoicenews
Welcome to this important conversation about the impact of the #Omicron surge on family caregivers and the importance of #vaccinations. We open with a prayer and to give thanks for those who bring us together to hear these stories.
#Vaccines are a key weapon against the worst ravages of the #COVID19 virus, helping to mitigate the sense of isolation and fatigue, says Moderator Cheryl Brown.
Read 23 tweets
The term “caregiver”needs work. It’s a hospital-centered term, by way of the patient. It describes the caregiver’s *work* in relation to *someone else.* It ignores the real and myriad ways the caregiver lives with and is affected by the disease daily. 🧵 1/8
Ironically, the term #caregiver completely ignores the caregivers themselves. Yes, the patient’s needs should be centered by the medical team. Yes, caregivers should be acknowledged as important members of that team. But… 2/8
…many caregivers’ mental and physical health is directly affected by the very same disease, condition, diagnosis, etc. What of their needs? Why is the #healthcare system at large ignorant of the treatment *they* need? 3/8
Read 9 tweets
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
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
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
#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
1/ Q: What can I do to support a #caregiver?

A: Caregivers need a back-up plan, a much deserved #recharge, and financial support.
2/ Caregiving during the #COVID pandemic has been further strained by disrupted child care, social isolation, unemployment, and a contagious & debilitating virus. If the caregivers fall, so does everything else.
3/ Caregivers come in many forms & are the backbone of daily life for millions of Americans. To anyone in a #caregiving role: WE. SEE. YOU. ❤️

The days are long, the worries are real, & the options in the era of #COVID19 are limited.
Read 14 tweets
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
#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
@ProjectECHO I just wanted to share that as a #caregiver of two adult children with #chronicpain these screen shots feel incredibly biased. I have watched my husband & my children experience #stigma by medical professionals due to the fact they had/have #chronicpain 1/ ImageImage
my husband passed due to his illnesses #pancreascancer #hereditarypancreatitis. My kids live each day in #pain. We have tried many other options, some of which actually have caused life long injury. #Opioid pain medications have provided them some QoL. They have often 2/
been questioned if the pain is really that bad? Curious if you teach about malabsorption issues? Both my kids have them. Unfortunately due to lack of knowledge (even though throughout chart) about malabsorption in relation to all medications she has been accused 3/
Read 8 tweets
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/
Read 13 tweets
This is extremely concerning. Where is the #patientcentered care? What if the medications that the #patient had been on were working? My kids have an extensive history. They have tried multiple medications and treatments some to their great detriment, should there 1/
not be a discussion w #patient and/or #caregiver on needs, concerns, desired outcomes previous treatments tried? I would never want to again have my kids be placed on a medication & or have treatment that did not work or worse caused harm previously. Due to the #CDC 2/
guidelines, the reinforcement of these guidelines by other governmental entities such as @CMSGov physicians have stopped assessing need and providing legitimate care - there actions are based on what is best for their organization and themselves. @CDCInjury and @SeemaCMS have 3/
Read 8 tweets

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