This has been a very busy week for us. With both Nicole and Russell in soccer we are busy just about every evening. Add in a meeting with our school, a 5 hour trip to emergency, and a trip to the Manitoba Legislature and it is all a bit overwhelming. I am really enjoying sitting in the sun room today and enjoying the sunshine and doing some reading.
It seems I kicked over a few rocks this week. Since my visit to the Legislature, I have been approached by the Minister of Health's office and have had two media stories written about our visit to the ER on Wednesday. It is always a dangerous thing to go public about any issue. Once you go public you lose control of the narrative. The story can evolve into something it was never intended to be. It is a risky thing to do. I don't recommend it.
What prompted me to go public with this issue was that Health Care needs a shake up. We have big problems and big problems require big solutions. Solutions that may be controversial and will definitely challenge the status quo. We have been talking about the problems in health care for years and years and effectively we have only been able to maintain a status quo. The status quo is not acceptable.
Our little 5 hour trip to emergency on Wednesday was nothing. A mere speed bump in our travels through the health care system. We have had many other more spectacular trips to Emergency. Our experience on Wednesday was nothing new or unusual. This is what we expect. What infuriated me most on Wednesday is how we can't get the small things right. A simple treatment that should have taken a few minutes; took hours. Not only is it a waste of our time but we are utilizing valuable resources in a most inefficient way.
What isn't mentioned in the news stories are all of the very diligent people who were working for us and trying to solve issues while we were in Emergency. The last thing I would ever want to do is give the impression that someone wasn't doing there job or were under performing; they were not. Many of the people I saw on Wednesday, I will have to sit down with again at our Child Health Quality Council meeting on June 3. I hope they don't throw anything at me.
So why is health care so chaotic? To put it very bluntly and perhaps a little overly simplistic. The system is setup to fail. Communication within health is an unmitigated disaster. No one talks to each other. There are so many policies and processes, everyone assumes that "someone" will take care of it. Unfortunately, "someone" is not employed by the health care system. These same polices often conflict with other policies and in many instances are poorly understood. After reviewing some health care policies I have also noticed that many of the policies are very restrictive and limit creativity. It is very difficult to conceive of every possible scenario and policies need to be drafted so that professionals can use their discretion. They are smart; let them use their years of education and experience.
The second major problem is health care is that it is politician centred; not patient centred. Decisions at high levels are based on political expediency and not for the long term benefit of health care. If a program offers a good photo op; it gets the green light. Doesn't matter if it has no tangible benefit (Quick Care Clinic in Southdale...Really??). I talk about family centred care and putting patients first all of the time. Patients are outgunned and under represented in health care. Who is supposed to be looking after and listening to the needs of patients? Our elected representatives. I don't believe our MLAs are representing the interests of their constituents. The voice of the patient is rarely heard and often dismissed in political circles. Its all about window dressing and the next election cycle for politicians. Health Care is highly contentious political issue. Any elected official who presents any ideas for "real" change in health care will commit political suicide. This is certainly not a unique issue to Manitoba as we have seen first hand how Alberta Health Services operates and I don't see a great deal of difference between Manitoba and Alberta except Alberta has significantly more financial resources; not to say they are using it wisely.
The third major problem, from my perspective, is the need for a continuum of care. Hospitals and health care is built around programs. The Renal program or the Cardiology program. This creates a disconnected and stuttered approach to health care. This week we had meetings with our school (Education System), our Child Development Worker (Disability Services Manitoba), went to Emergency based on information received from our school. Once we learned we needed medical intervention we dealt with Cardiology, Infectious Diseases, the Emergency Dept at Children's and Canadian Blood Services where our medication came from. That is 6 different groups we dealt with this week. 6 groups who report to different bosses, who are part of different government departments and all have different mandates and priorities. Who is the only consistent voice for our son. Us; the parents. Is it any wonder that the level of care is so inconsistent. There is no continuity.
Susan and I get the tag of being "high functioning" which is a blessing and a curse. It is good because most people we work with embrace our input and know we are trying to help and can be self-sufficient with a little guidance. It is a curse because these same professionals begin to depend on us so they can spend time with other families who might need more assistance. In many cases we are left to struggle on our own. With the complexities we face and many issues we deal with. In many situations we are left too sort out our issues on our own. I often think of those who don't have our resources. How do they cope with the system or do they simply slip thought the multitude of cracks in the system.
Folks, this is serious. At one point in time we will all need health care. Making fundamental changes to health care is a scary proposition. There will be mistakes and many unforeseen challenges but it is fundamentally necessary.