I Am Not Alone

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

Children like my son are at risk and nobody is willing to help. We need change immediately, lives are literally at stake. Young, 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 “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.

Samantha had a nurse taking care of her child who repeatedly arrived for a Saturday morning shift hung over and openly discussed her partying adventures from the previous night.

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!

Almost everyone who receives nursing at home can recount instances where nurses canceled at the last minute, nurses refused to work certain hours and agencies were unable to find nurses to fill shifts. We all have stories about hours that were allocated to us but were lost because there was nobody available to staff the shift.

But life-threatening mistakes due to incompetence or poor training are something different. 

Every single family I’ve met who receives some type of home-care support has at least a few incidents about nurses who were sleeping on the job. One of the more terrifying stories is the one about the nurse who, against orders and safety protocols, left a severely disabled child’s room to lie on a sofa in another room on the opposite side of the house because the alarms of the patient’s life-sustaining machines were too loud for the nurse to sleep. During a shift that specified the nurse to be awake and constantly watching the patient, said nurse was in such a deep sleep that not only did the caregiver not hear the mother’s yelling for help, calling for neighbours backup or the resuscitation efforts of her child after the child had a life-threatening seizure. Furthermore, the nurse did not awaken when neighbours summoned to assist in the crisis arrived, nor when the mom and others took photos of the still-sleeping nurse. The agency gave the nurse two weeks paid vacation and reassigned her to a different patient. The mother has never again slept through a night due to the traumatic memory of this nurse’s life-threatening lack of care.

Over the past year 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. 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.

As I began to speak out, people were supportive and offered words of empathy. However, the support did not come from those in any position to effect change. There was a lot of “I’m sorry you are dealing with this” and ” wow, I didn’t realize it was that bad” and even “I wish there was something I could do to help”.

But something else started happening – I began receiving emails from people sharing similar stories of danger and helplessness.

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 kids 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. Parents like me do not have the luxury of time and excess energy to navigate the current bureaucracy. Complaints to the CNO currently fall on deaf ears and follow-up is mostly non-existent. The nursing agencies and the Community Care Access Centre (CCAC) have clearly proven that they are not willing to do this.

The Patient’s First Act, the bill that will fold the CCACs into the Local Health Integration Networks (LHIN) 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 accountability for the grievous errors.

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

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

Note: Over the course of my son’s 14+ 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 abundance of incompetent people who hold a valid Registered Nursing license in Ontario.