Tag Archives: CCAC

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.

Lack of Accountability in the Healthcare System

accountability

I spoke out about the lack of accountability in the healthcare system in Ontario and got burned.

According to the Community Care Access Centre (CCAC) in Ontario, I have “the right to express concerns and recommend changes without fear of reprisals, interference, coercion or discrimination”. That is a lie.

When my 14 year old son, Jacob, was on the receiving end of incompetent and inconsistent nursing care, I spoke out. Loudly and repeatedly.

I began by discussing my concerns with the nursing agency and Jacob’s CCAC case manager, the person responsible for overseeing the agency and ensuring they fulfill their contractual obligations. When that failed to resolve the multiple safety issues, I escalated my discussion to the senior management of both the nursing agency and the CCAC.

Nobody at either organization denied there were problems with Jacob’s nursing care. For example, no one disputed that Jacob’s nurse should not have been in a drug-induced sleep during a day shift. I wasn’t rebuked for expressing concern about a nurse’s skill when she allowed my son to fall out of his bed onto the hard floor. And they didn’t think I was overreacting when a nurse tried feeding him food orally, or when another nurse tried giving him medication in his mouth, instead of through the feeding tube in his stomach. Although they never apologized for not filling a nursing shift, the agency and CCAC did acknowledge that shifts were missed because they were unable to find a nurse to care for my medically fragile son; however, as I later learned, the missed shifts and many medical errors were seldom recorded in his file.

After multiple weeks of inaction, the senior management team of the CCAC began chairing a weekly conference call with me and the nursing agency in order to address the problems and maintain a consistent schedule of competent nurses for Jacob. The calls proved ineffective – instead of the service providers presenting supportive strategies, I was forced to lead the calls by highlighting the issues and requesting plans to fix the problems. The agency executives seemed ill-prepared for the calls, and failed to know how to respond. Repeated claims that their administrator was “trying his best” quickly grew stale. Their excuses did nothing to ensure Jacob’s safety at the hands of their employees. Despite factual documentation supporting my allegations, the agency and the CCAC representatives united in stymieing any long term remedies, or legitimately working towards a real plan. I was fed a bunch of platitudes, including they were trying hard, they don’t have any more nurses and I needed to be patient. An ironic excuse for why they were having so many problems was “the system isn’t set up to provide 24-hour nursing care”. This startling assertion came from executives whose primary business function is to supply nurses and other home care services in the community!

My son was subject to dangerous and sporadic care, I was the bad-guy and “the system” was at fault.

Jacob has always been dependent on nurses, but it has only been in the last few years that his medical needs have intensified and he requires around the clock care. With over a decade of experience, I was not a stranger to the vigilance I had to employ to maintain a safe level of home health care, but the people responsible for ensuring the care were accomplishing the exact opposite: they were so used to blaming others that they could not find a way to help Jacob. It was a case of learned helplessness at its finest. The actions of the agency and the CCAC created stress and hardship for our family and we were already drowning in the responsibilities and challenges involved in caring for a very sick child.

I refused to concede that we had the best nursing care the province could provide because it wasn’t enough to keep my son safe. Jacob deserved better and I wasn’t going to stop until he had the competent and consistent care that he required.

After more than four months of weekly conference calls proved useless, the CCAC folks were exasperated by the relentless thorn in the their sides that was me. The CCAC hired an outside mediator to chair a couple of face-to-face meetings with all parties ostensibly to assist our group in creating a sustainable plan for Jacob’s care.

Nobody contested that Jacob required 24-hour nursing care and everyone agreed that Jacob’s needs were complex and unpredictable.

The meeting began with the mediator placing a 5×7 framed photo of Jacob on the table, in full view of all parties to ensure that everyone remembered we were working towards a comprehensive care plan for a real boy with thoughts, feelings and rights. There was palpable tension in the room, but nearly two hours later we ended on a friendly note. We even closed the meeting with hugs and handshakes, to-do lists and plans to resolve the situation quickly.

At the second, and final, meeting it was instantly apparent that the action items from the first meeting had been completely ignored and the follow-up items were not completed as discussed.

Once again, I was hit by the inexcusable wrong that there is no process in existence to hold the CCAC and nursing agency accountable for their unfulfilled promises and lies.

After exhausting all the traditional avenues to resolve the problems, I approached the media.

Together with a couple of other beaten down, exhausted and desperate mothers, we shared our stories of incompetence and mistreatment by both the CCAC and nursing agencies, with the hopes of provoking change and instilling accountability. I knew I was not the only one facing the arrogance and bullying of the CCAC and nursing agencies. Global News and The Toronto Sun newspaper clearly exposed this fact.

The media coverage strategy backfired. Jacob and I were punished.

The nursing agency that was responsible for sending incompetent nurses fired us even though they had supplied nurses we liked who enjoyed working with Jacob and my family. Instead of forcing the nursing agency to ensure they hire skilled and well-trained employees, the CCAC allowed the agency to cut off care. Then, almost as a bonus, the CCAC awarded them more contracts to replace the nursing hours the agency gave up when they refused to service us.

At the same time, the Community Care Access Centre decided that they had enough of me.

Without any warning, the Senior Director at the CCAC sent me a letter in which she explained that she was scaling back the management of the nursing hours (not withdrawing nursing care) – instead of being responsible for ensuring that all the shifts were filled, it would now be my sole responsibility to ensure that we had nurses for all but a fraction of the hours. If the shifts were unfilled, they were not to be contacted. The reason they gave: Jacob hadn’t died when they expected he would.

The unremitting anxiety of dealing with unskilled nurses and inept managers paled in comparison to the wallop of those words. But instead of accepting this bombshell, I didn’t retreat. When you’re the mother of a chronically ill child, you have no choice but to fight. I would not cower in a proverbial corner and let the CCAC steamroll me into submission. My son’s life was at risk.

I approached the Minister of Health whose office was sympathetic to our situation and tried to intervene. But the CCAC was no match for the Minister’s office. Like a shamed dog with its tail between its legs, the Minister’s office backed away. They explained to me that their office did not have the authority to tell the CCAC how to operate.

It’s been over a year that Jacob was discharged from a 236-day hospitalization. He is still without competent, consistent and sustainable nursing care. We have a new nursing agency who is extremely devoted to finding solid nurses – but it is not enough.

Both the CCAC and the original nursing agency must be held accountable for the recklessness with which they have been operating at the expense of my son’s well-being.

Currently, I am working with the brand-new Patient Ombusdman and the Child and Youth Advocate who are united in helping me ensure that Jacob gets the care he needs.

I am not backing down, I will not be intimidated. Not when my son’s life is at stake.