We need change immediately, lives are literally at stake.

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Marcy White with her son Jacob Trossman and their dog Felix on Tuesday April 5, 2016. Jacob has Pelizacus-Merzbacher disease which is a progressive disease that leaves him wheelchair bound, he doesn’t speak and can’t feed himself and relies on 24-hour nursing care. Craig Robertson/Toronto Sun/Postmedia Network

By Marcy White

When she was Ontario Patient Ombudsman, Christine Elliott came to my house to meet my son. She advocated repeatedly, but ineffectively, on his behalf when she learned about the frequent nursing errors Jacob experienced at home. We had weekly meetings discussing the status of her efforts.

The current Minister of Health, the same Christine Elliott, knows that medically fragile patients’ lives are at risk because of incompetent and inconsistent home nursing.

We need change immediately, lives are literally at stake. Vulnerable, innocent and fragile lives.

In the midst of caring for my severely disabled teenager, I thought I was the only one struggling with incompetent nursing care at home. I didn’t realize that having to wake a slumbering nurse out of a drug-induced sleep at 3 o’clock on a Saturday afternoon or receiving a panicked telephone call from a nurse explaining that my child with no independent movement“somehow” toppled out of his bed onto the hard floor because she forgot to raise the side-rails was an experience that other parents of special needs children shared.

I am not alone.

Steve (all names have been changed) walked into his medically fragile daughter’s bedroom at 2am only to be confronted with a horrific sight: the nurse fast asleep on the floor, holding onto one of the legs of the baby’s crib, a water bottle filled with an alcoholic beverage by her side.

As Martha answered her phone, she was floored when the school principal informed her that the nurse who was assigned to care for Martha’s child was fast asleep, drunk, on a sofa in the kindergarten classroom.

Several parents recounted experiences where they had nurses show up for a day shift right after the nurse finished an overnight shift somewhere else. Or nurses showed up for a night shift following a full day shift.

An infant girl fell off the changing table while under the care of a nurse. How did it happen? The nurse walked away from the child on the table. The baby was injured, required stitches and the nursing agency blamed the parents for not having the changing pad bolted to the table.

Over the past four years I have written several articles about the incompetence that exists within the home-care nursing system in Ontario and the dangerous situations my medically fragile son has faced as a result of this ineptitude.

Nobody was ever held accountable for the many errors we witnessed, including medication errors, poor judgement and inexperience with life-sustaining equipment. In our case consequences were never discussed, much less enforced. Nurses who endangered my son’s life were not retrained or disciplined, they were simply reassigned to other, less outspoken, families.

When one person speaks out or complains, it’s easy for an onlooker to assume that this is an isolated occurrence, the family is too demanding or the stories are exaggerated. But when the same experiences occur in homes across the province, it’s time for a thorough investigation, accountability and consequences. The experiences I shared here are only a fraction of the horrors that take place daily in homes and schools with innocent people who are dependent on skilled nurses for their ongoing survival. There are a slew of families who are too afraid to complain as they fear losing the services they currently receive. The worry is real – my son lost services after I began sharing my experiences.

The College of Nurses of Ontario (CNO) must play a greater role in ensuring that nurses are competent. They need to create an easily accessible route to report serious medical errors. Complaints to the CNO currently fall on deaf ears and follow-up is mostly non-existent. The nursing agencies and the Local Health Integration Networks (LHIN) have clearly proven that they are not willing to do this.

Obliterating the LHINs is not the solution. This change will not create responsibility or instill consequences. It will not protect unsuspecting patients from incompetent care. The new legislation fails to address the crux of the problem – poor oversight of nursing skills within the community and a lack of experienced nursing to care for the medically complex patients in their homes.

The Minister of Health and the CEO of hospitals in Ontario need to unite with families like mine immediately and figure out a way for our vulnerable family members to receive the exact same quality of care that they receive when they are hospitalized. We need to redefine what community nursing looks like for medically complex patients and extend the care provided by the hospital into our homes.

We cannot wait until more mistakes occur. The lives of fragile human beings are at stake.

Note: Over the course of my son’s 17+ years of daily nursing, he has had, and continues to have, some wonderful, caring and skilled nurses. The purpose of this article is to address the lack of experienced and competent nurses who are responsible for the lives of Ontario’s most medically vulnerable population.

Support Marcy & Jacob and thousands of vulnerable citizens by reaching out to your MPP by phone or email with your stories and concerns.
https://www.ola.org/en/members/current/contact-information

Marcy White BSc, MSW, MBA, enjoyed a career in the investment industry until her son, Jacob was born in 2002. Her academic degrees did not prepare her for caring for Jacob, who was born with Pelizaeus-Merzbacher disease (PMD). Since Jacob’s diagnosis at 10-months-old, Marcy has become an advocate for her son. Marcy is the author of The Boy Who Can: The Jacob Trossman Story and has published many articles about the challenges of parenting a child with complex care needs. She co-founded curepmd.com to educate people about PMD and fund research into finding a treatment. Marcy lives in Toronto with her husband, Andrew, and their three children, Jacob, Sierra and Jamie.

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