Marcy @MarcyFWhite
mom of 3: son with Pelizaeus-Merzbacher disease and twin daughters, author of The Boy Who Can, special needs advocate curepmd.com ; theboywhocan.com Joined December 2012-
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I’ve had more doctors offer to help my disabled son die than doctors willing to help him live. #complexcarefail
I’ve had more doctors offer to help my disabled son die than doctors willing to help him live. #complexcarefail
And if he’s fortunate enough to to turn 18 but still has massive medical needs @SickKidsNews will kick him out along with the other medically fragile 18 year olds who they no longer want despite a lack of safe options in the adult system. #complexcarefail
And if he’s fortunate enough to to turn 18 but still has massive medical needs @SickKidsNews will kick him out along with the other medically fragile 18 year olds who they no longer want despite a lack of safe options in the adult system. #complexcarefail
#complexcare kids who turn 18 are dropped from their teams at @SickKidsNews and other complex care programs across the province. There isn’t even a scotch tape fix for that! I’d settle for a patchy reactive fix that keeps my son safe!
#complexcare kids who turn 18 are dropped from their teams at @SickKidsNews and other complex care programs across the province. There isn’t even a scotch tape fix for that! I’d settle for a patchy reactive fix that keeps my son safe!
I have spent the last 21 years ‘advocating’ for my son. It’s incredibly exhausting, and pointless at times.
I have spent the last 21 years ‘advocating’ for my son. It’s incredibly exhausting, and pointless at times.
Did you tell @markhollandlib that once your most complex and fragile patients turn 18 you toss them out regardless of whether there are competent adult providers to catch them? These kids don’t matter to @sickkids once they turn 18. #failure @JILLSLASTWORD @fordnation
Did you tell @markhollandlib that once your most complex and fragile patients turn 18 you toss them out regardless of whether there are competent adult providers to catch them? These kids don’t matter to @sickkids once they turn 18. #failure @JILLSLASTWORD @fordnation
And #complexcare patients @SickKidsNews who turned 18 and were kicked out of your program are celebrating the new year with no doctors or anyone following them. #notfestive
And #complexcare patients @SickKidsNews who turned 18 and were kicked out of your program are celebrating the new year with no doctors or anyone following them. #notfestive
My @sickkidsNews moment was Sept 11 when @sickkids shut their doors to my medically fragile son, without anyone qualified to care for him outside the hospital. Why? He’s too old for @sickkids but much too complex for family docs. #sickkidsfail Shame on you @ronald_cohn
My @sickkidsNews moment was Sept 11 when @sickkids shut their doors to my medically fragile son, without anyone qualified to care for him outside the hospital. Why? He’s too old for @sickkids but much too complex for family docs. #sickkidsfail Shame on you @ronald_cohn
I don’t know what it will take for families to be listened to.
I don’t know what it will take for families to be listened to.
What about the research that reveals that youth with medical complexity are tossed into oblivion when they are thrown out of #compexcare at @SickKidsNews and other pediatric hospitals because they turn 18. Many authored by your own cc team!
What about the research that reveals that youth with medical complexity are tossed into oblivion when they are thrown out of #compexcare at @SickKidsNews and other pediatric hospitals because they turn 18. Many authored by your own cc team!
And who @SickKidsNews supports #complexcare youth when they turn 18? NOBODY!! They are simply discarded and ignored. They deserve better. #complexcarefail
And who @SickKidsNews supports #complexcare youth when they turn 18? NOBODY!! They are simply discarded and ignored. They deserve better. #complexcarefail
What will it take for change to happen? @SickKidsNews tosses these vulnerable patients aside despite knowing there is no safe option for them! @VancityReynolds @andrepicard @NightShiftMD @LouiseKinross @Hanigsberg
What will it take for change to happen? @SickKidsNews tosses these vulnerable patients aside despite knowing there is no safe option for them! @VancityReynolds @andrepicard @NightShiftMD @LouiseKinross @Hanigsberg
Where is the team that exemplifies @SickKidsNews values towards their most #complexcare kids who turn 18? They don’t exist because the hospital kicks out the most fragile even though there is no system to take them in. @fordnation @RobinMartinPC @JILLSLASTWORD @MTaylorNDP
Where is the team that exemplifies @SickKidsNews values towards their most #complexcare kids who turn 18? They don’t exist because the hospital kicks out the most fragile even though there is no system to take them in. @fordnation @RobinMartinPC @JILLSLASTWORD @MTaylorNDP
How about ending the year by caring about your most vulnerable #complexcare youth who turn 18 and are evicted from your service with no safe place to go?
How about ending the year by caring about your most vulnerable #complexcare youth who turn 18 and are evicted from your service with no safe place to go?
Too bad your commitment to quality doesn’t transfer to your #complexcare patients who turn 18. You abandon your commitment to these vulnerable people. @fordnation @JILLSLASTWORD @MTaylorNDP
Too bad your commitment to quality doesn’t transfer to your #complexcare patients who turn 18. You abandon your commitment to these vulnerable people. @fordnation @JILLSLASTWORD @MTaylorNDP
Is that why @SickKidsNews is so quick to evict their most complex patients as soon as they turn 18 and nobody wants them? @JILLSLASTWORD @MTaylorNDP @fordnation
Do you think @VancityReynolds knows how @SickKidsNews treats their most #complexcare patients once they turn 18? If he knew, would he still advertise for them? @JILLSLASTWORD @MTaylorNDP @sherry_caldwell
Do you think @VancityReynolds knows how @SickKidsNews treats their most #complexcare patients once they turn 18? If he knew, would he still advertise for them? @JILLSLASTWORD @MTaylorNDP @sherry_caldwell
Do you know that @sickkids evicts its most vulnerable #complexcare patients when they turn 18 even though there is no safe alternative for them? These not-as-little pr*cks deserve support! Does @VancityReynolds know how they treat those 18+? @andrepicard @NightShiftMD @Thomsod
Do you know that @sickkids evicts its most vulnerable #complexcare patients when they turn 18 even though there is no safe alternative for them? These not-as-little pr*cks deserve support! Does @VancityReynolds know how they treat those 18+? @andrepicard @NightShiftMD @Thomsod
Help! This is terrible! #Transition for #ComplexCare youth in #Ontario is broken. @picardonhealth @NightShiftMD @AmieVarley @birgitomo @KidsBrainHealth #onpoli @MaggieKeresteci x.com/marcyfwhite/st… x.com/marcyfwhite/st…
Help! This is terrible! #Transition for #ComplexCare youth in #Ontario is broken. @picardonhealth @NightShiftMD @AmieVarley @birgitomo @KidsBrainHealth #onpoli @MaggieKeresteci x.com/marcyfwhite/st… x.com/marcyfwhite/st…
I called the Vent Pool to refill sensors. Because he is over 19, he no longer qualifies. Uses his vent + sat monitor 18+ hrs. Without notice, I was told that we need to get our own with the help of our respirolgist. Since getting evicted from @SickKidsNews, we’re alone.
Donna Thomson @Thomsod
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Tina Louise @LouiseTinaTL
55 Followers 544 Following HELP over Hurt. Accessible HOME CARE. Options for our elders/adults/children with disability and Financial SUPPORT that covers basics. Allow FAMILY to be paid.
StephanieSantos @Stephan60216863
54 Followers 297 Following Stay at home Mother raising my 6 year old son, and 4 year old daughter with a rare genetic disorder, Pura Syndrome #specialneedsmom
Caregiving.com @caregiving
29K Followers 1K Following We're here for every step of your caregiving journey. Visit https://t.co/LJA4ZlD6K1 for resources, stories, and connection.
Karen Rezk @KarenRezk
125 Followers 395 Following Mother. Nurse. Advocate, listener, learner. Spreader of kindness. Lover of life. Believer of all things just, equitable, inclusive. “Ubuntu” - look it up!
Ontario Families of G.. @ONfghr
372 Followers 617 Following We are a network of parents and siblings of residents of group homes across Ontario. Email us - [email protected] or find us @OntarioFGHR on Facebook
Francine @FieryFrancine
567 Followers 663 Following 🇨🇦MEDICAL MAMA🤞🏽IMPROVING SDM & PATIENT ENGAGEMENT🤞🏽STORYTELLER & LISTENER
Caregivers Alberta @CaregiversAB
2K Followers 1K Following Caregivers Alberta provides resources and support to Albertans caring for family and friends with challenges resulting from illness, disability or aging.
Toula Kourgiantakis @DrKourgiantakis
1K Followers 4K Following Professeure agrégée, Associate Professor, | SWer & Family therapist | Research on addictions & mental health | Views are my own
CP Support Canada @CPSupportCanada
681 Followers 688 Following Providing families caring for children with cerebral palsy in Canada with monthly bursaries and reliable medical and legal information to empower parents.
Hayley Turnbull @TurnbullHayley
60 Followers 1K Following
Carlos Labrada @clabrada
28 Followers 212 Following40 years! Congrats on an amazing career, Brian.
Celebrating 40 years with my friend and colleague @NightShiftMD! Mazel Tov on 40 extraordinary years as a phenomenal caring Emergency physician! Your excitement and enthusiasm at 9 am after an overnight shift is a testament to what an amazing doctor and person you are. 1/
A growing number of youth under 18 are identifying as caregivers due to the growing cost of care. This is just as true in Canada as in the U.S. This unseen population need support and recognition urgently. @jason_r_DC @NJorwic bit.ly/3US5d06 #CdnCaregiving
@MarcyFWhite I am so sorry that they offer MAID when you and your beautiful son need support.
"Taking care of another human being is the most honourable job on Earth." NEW essay about my 30 years advocating for recognition of unpaid caregiving work. suerobins.com/post/caregivin…
Health research is important, but has anybody considered funding the actual people who are being researched? Patients + caregivers are well aware of the burdens of their roles. We don't need to research that anymore. Instead, having a living wage would help us avoid poverty.
@MarcyFWhite I’m sorry to hear this but am glad you’re there for your son.
Actual sewer through which 100 Vietnamese prisoners escaped in 1945.
Tge ‘Hanoi Hilton’ where the late Senator John McCain was imprisoned for six years.
📣 Sharing our collaborative commentary paper on recommended actions for policy changes in #HealthCare #Transition, in partnership with @ChildBrightNet READYorNot(TM) Brain-Based Disabilities Project Patient & Family Advisory Council, & Policy Hub frontiersin.org/articles/10.33…
Thanks @healthing_ca for hosting this session. We were asked to share our greatest challenge. Mine is the lack of respect for patients who share feedback about their health care experiences. Health care will continue to slide into the ditch until the patients are heard.
Those who advocate for others are burning out. @healthing_ca #advocacy #mentalhealth #burnout healthing.ca/wellness/opini…
"On October 7th, Israel was attacked. Since October 7th, American Jews have been under attack." Do yourselves a favor and watch this jaw-dropping speech. With students like this, the future of our people is bright.
To my friends in patient advocacy who are working on the edges for system change... Organizations are never going to recognize you or give you an award because you are a threat to their status quo. I see you. Keep going. You are not alone.
Our policy director @james_janeiro is speaking before the Standing Senate Committee on Official Languages today on the challenges minority language #caregivers face accessing health services. Watch it live here: bit.ly/3sVORb9 #CdnCaregiving
@MarcyFWhite Good point Marcy, the language doesn’t reflect reality.
Today, @StatCan_En released it's 2023 report on the care economy, confirming that caregiving is the "next frontier in public policy." Congrats to Jane Badets, Janet Fast, @NorahKeating and @DHWray for this critical work. #CdnCaregiving #CdnPoli www150.statcan.gc.ca/n1/en/catalogu…
With one in four Canadians currently providing care, we have the power to vote for a brighter future of care. According to our survey, most caregivers and care providers said caregiving is a voting issue. bit.ly/3R9Oumw #CdnCaregiving #CdnPoli
@MarcyFWhite @SickKidsNews @JILLSLASTWORD @MTaylorNDP different province, same problem :(
A story many PMD warriors can relate to: Jak Norman was tested for over 70 conditions before being diagnosed with PMD. Read more about it at: headtopics.com/uk/boy-diagnos…
Caring for a child w a rare disease starts w caring for yourself: 'I realized how much easier it was to accept my son's diagnosis when I accepted myself' ❤️@HBKidsHospital #SpinalMuscularAtrophy hollandbloorview.ca/stories-news-e…
@MarcyFWhite Me too. I’m told you rocked the place!
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