Good Afternoon

My name is Kathy Bugeja and I am here today as a primary caregiver providing my concerns with respect to Bill 41, the Patients First Act.

Over the past two decades, as a daughter, daughter-in-law, and close friend, I have been entrusted with managing the care of five frail seniors all presenting with different comorbidities: congestive heart failure, multiple stroke, advanced dementia, diabetes and associated complications. The list goes on and on. 

I have experienced the urban myth first hand, several times over, that people can be managed in the community.  Too often, the province’s Home First strategy has really meant Home Alone, condemning the patient and their caregivers to a life of physical, social, emotional and psychological isolation. I am convinced that every complex patient who is forced to be kept at home well beyond the stage of safely being there, breeds at least one other complex, chronic patient in the system.  What is particularly difficult is that it is only when you reach the next crisis in care that the system offers you a crumb of additional support – maybe some extra additional home care support to deal with the very real problem of changing adult diapers for a 200-lb, aggressive, immobile adult.  It takes three people to do that effectively, by the way.

So imagine my despair when I read the Patients First Act to realize there’s nothing in there about any more direct patient care services. No promises of more home care hours, more long-term care beds, shorter wait times for actual surgery, nothing. The providers may be more integrated, but you still need the actual resources to deliver the care.

Instead, as a former mergers and acquisitions specialist, I see Ontario will spend millions of dollars to merge two distinct entities CCAC and LHINs – unionized with non-unionized operations - a nightmare in and of itself. 

I see, as a business consultant and Ontario taxpayer, millions of dollars being spent on creating 78 mini-government offices, called sub-LHINs, staffed with hundreds of government-employed project managers, data analysts, etc.  Each manager, on average, earns $75,000.  How many home care hours does that strip out of the system?  Because, of course, the Health Minister has told us the total healthcare budget is not increasing.  And that budget is comprised of two parts: direct patient care and administration.  So if you increase one of those components, i.e, administrative costs, the other component, direct patient care, has to take the hit.

Ministry claims that administration and management savings accruing from merging CCACs and the LHINs will be more than offset by increased employees, and inevitably the need to house them in larger premises with the attendant leasehold improvements, new furnishings, IT systems, etc.

But it gets worse.

In business, it is a fundamental generally accepted accounting principle, that you do not have your payables person do your receivables. That is an invitation for mismanagement and fraud. But that is exactly what government has created for itself in this Bill.

Government has created a closed loop system. It creates the policy, it delivers the services, it manages the daily oversight, it audits itself, it eliminates any appeal mechanism and it has final arbitrative authority.  What would ever compel government then, to reveal if something isn’t working?  If they made a mistake?  The public and Ontario taxpayer wouldn’t know until well after the fact, maybe never. This is another financial scandal in the making. 

References to a patient ombudsman in the Bill are token optics. As a caregiver, one needs ‘real-time’ flexibility and options.  To illustrate, I was indescribably grateful to the cardiac critical care team bending the rules to allow my dying mother one extra day in the unit so she could be transferred to the palliative care unit and bypass the general ward with its screaming dementia patients.  I didn’t want her to be terrified again. Not in her final moments. Their kindness and flexibility seem small, but it is a monumental victory for a caregiver who realizes she’s run out of options.

Which leads me to my last and final point.

One thing I have learned throughout all my years as a caregiver, spending hundreds of hours in ERs, and in wards, and in doctors’ offices, and on the phone trying to arrange another crumb of care:  if you want or need something from someone, the last thing you do is poke your fingers in their eyes. But that’s exactly what this government has been doing continuously to our physicians and other healthcare providers in this system for the past three years. Stop doing that! You’re making my life infinitely harder!

People have only so much capacity to be able to continue to respond. When you treat people with disrespect, when you shackle their hands, when you ‘direct’, ‘supervise’, ‘legislate’ and ‘investigate’ them to the point where they are beleaguered or they have no more flexibility, you cripple the doctor-patient relationship.  There are mechanisms in this province to bring the medical profession and government together to work on solutions that will benefit all Ontarians.  Stop the pissing match because I need these people!  They are the only ones I can rely on!  So tell me what you’re going to do to address this problem!

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