Meet Crystal Rondeau, an amazing lady, an amazing advocate for people with disabilities. Crystal was born with Spinal Muscular Atrophy, type 2, and is a Leukemia cancer survivor from the young of 13.
As a patient advocate, Crystal is no stranger to educating others about disability, and she has helped many patients through the years.
Right now, Crystal needs your help. She is in a fight for her life because she is not able to have her needs as a patient met while staying in the Health Sciences Center (HSC), Winnipeg, Manitoba and the type of care that she isn’t receiving is threatening her life. Crystal has been staying at the HSC since her admission on July 20th, and it is absolutely urgent that her needs as a patient are met immediately. This is a life-threatening situation and we need your help.
This is an urgent matter and a call to action.
Crystal: I’m in a desperate situation, and I need your help. I’m being threatened with discharge to the streets, which feels like a death sentence. I require round-the-clock care, but no program in this province is equipped or willing to provide the complex support I need. Right now, I’m going hours without food, I’ve lost six pounds, and in the 17 weeks I’ve been here, the staff haven’t even changed my sheets or bathed me—my mom and sister have to do that. While I acknowledge that many of the nurses are trying their best and I have a good working relationship with most of them, the problems I’m facing stem from the administration and higher-ups. Yes, some staff have made mistakes, but they are genuinely trying to learn how to care for me. Unfortunately, management seems to turn a blind eye to the serious issues caused by understaffing and the lack of resources. I can’t go home because my self-managed care program has been stripped away, and even when I had it, I only received a measly 55 hours of support—far from enough for someone in my condition. Riverview isn’t a viable option either; they lack the necessary equipment, like a hoyer lift, so the neglect I face would only continue there. They won’t even provide basic safety features like a saturation monitor, which is crucial for my well-being, especially since I de-saturate on my ventilator while suctioning and sleeping. I’m not even allowed to attend meetings about my care at HSC, effectively denying me a voice to advocate for myself. This is unacceptable. I need you to raise your voices for me. Contact the WRHA, Shared Health, and local news teams. Your emails and calls can make a difference. When you reach out, emphasize the urgency of my situation and the desperate need for proper care. The neglect I’m experiencing is appalling: I go hungry, and when I am fed, it’s only a couple of bites. I haven’t had my hair washed since I arrived, and basic hygiene care is nonexistent. My family has had to fight just to get me a proper bath. They avoid brushing my teeth because it requires special training to prevent aspiration, and they can’t be bothered to train the staff. Despite repeated requests, I haven’t received any physiotherapy since my admission. It took 11 weeks of hounding just to get a hoyer lift assessment, and now I’m about to undergo another one next week to see if they’ve finally resolved the issues. Emptying my ostomy needs to be done carefully, yet they frequently spill fecal matter on me and don’t change the sheets afterward. I’ve had to lie in my own waste because they refuse to change my bedding. My skin is suffering from neglect—itchy, painful, and prone to tears because they don’t moisturize me or provide regular wound care for my pressure sores. They don’t answer my call bell when I need suctioning or if I’m choking. They don’t change my clothes, provide daily care for my SPC or trach, and they consistently bring my medications late. They’ve even spoiled my expensive SMA medication due to their negligence. My room is left dirty and unsafe, with food sitting out because they can’t be bothered to label or date it for safety. When my family advocates for me, we’re brushed off and accused of being rude and aggressive. My family has been threatened with removal from the hospital for simply trying to ensure I get the care I need. How is this acceptable? HSC continues to fail to provide even the most basic necessities—hygiene care, timely meals, medication, and equipment maintenance. My spare trach, meant for emergencies, was found under a bed, left there by a nurse who knew it was there and didn’t care to retrieve it. What if I hadn’t found it? What if there had been an emergency? This is the level of care I’m receiving, and it’s not okay. I’m backed into a corner, and I need your support. Please, help me fight for the basic dignity and care that I deserve. Together, we can push for the help I desperately need. Thank you for standing by me in this fight.”
On the afternoon of Tuesday, November 19, 2024, Crystal posted on the public media (Meta) the following image and content:
“I’m facing a dire situation, and I need your help. I’m being threatened with discharge to the street, which feels like a death sentence. I require 24/7 care, but no program in the province is able or willing to provide the complex support I need. Right now, I’m going hours without being fed, I’ve lost 6 pounds, and in the 17 weeks I’ve been here, staff haven’t changed my sheets or bathed me, my mom and sister have to. The staff often express frustration about the time my care takes, and management seems to be asking them to overlook the serious shortcomings of understaffing, effectively neglecting me.
I can’t go back home because my self-managed care program has been removed, and even when I had it, I only had access to 55 hours of staff support—far from enough for my needs. Riverview isn’t an option either; they don’t have the equipment, like a hoyer lift, that I require, which means the neglect and abuse would just continue there. Additionally, they won’t provide basic safety features like a saturation monitor, which is crucial because I de-saturate on my ventilator while suctioning and sleeping. HSC won’t even let me attend meetings about my care, denying me the chance to advocate for myself.
I need you to raise your voices for me. Please reach out to the WRHA, Shared Health, and local news teams. Your emails and calls can make a difference. When you contact them, emphasize the urgency of my situation and the need for proper care. Every voice counts, and together, we can push for the support I desperately need. Thank you for standing by me in this fight.”
During Crystal’s stay, she is also awaiting tracheostomy revision surgery. After her surgery, she will be facing enough challenges as it is having to relearn how to talk and swallow. It is extremely important and urgent that her patient needs are properly established and met right now and before her surgery. It is NOT FAIR for a patient to struggle and suffer while trying to express serious health concerns after a surgery and not having a plan in place to to be properly understood. How can this madness go on?
This article and its content are also a public service announcement to raise awareness of issues and challenges some people with disabilities face in a period of time when I know and believe that we have the technology to provide far better care than what is being given to Crystal during her stay at the HSC.
It is my belief that the HSC, in this case, is not living up to their mission statement, which is “is to provide the best health care to everyone it serves.”
Are you feeling this, knowing now, the lack of Crystal’s care?
And HSC “Values” can also be found on their site: *”We are committed to perform our duties with compassion and respect for our patients, learners, and colleagues; and always to conduct ourselves with the highest level of professionalism.” I’m just not feeling *that statement while knowing about Crystal’s current stay at the HSC for the last 119 days.
This campaign needs you now. Please click the image and sign the petition in the link. Thank you.
Does this statement reflect the care we now know that Crystal is not receiving to you?
Crystal needs your help. Please, we urge all readers to help by simply clicking the following link to HSC > Patients & Visitors > Patient Relations Office and let them know your feelings at: Compliments or Concerns – https://hsc.mb.ca/patients-and-visitors/patient-relations/
