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.