A Week in Health Care

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.

When is the Emergency Room not an Emergency Room?

 I am very happy our day at Children’s Emergency is over.  Thinking back at our 5 hours we spent waiting for treatment I observed a lot of good things and staff making their best efforts.  In terms of obtaining care I probably don’t have a lot to complain about.  We went in with a problem and we’ve been told it’s been addressed.  So why am I so frustrated?

The whole adventure started yesterday morning with a call from our school principal.  She informed us that a student in our school had a case of chicken pox.  This was the second case in two weeks.  With Russell being immune-compromised this is an issue.  Fortunately, this was not Russell’s day to be at school.  And he had not been at school since last Wednesday.  Unlikely that he had been exposed.  Good news.

I proceeded to make the call I don’t enjoy making.  I called Russell’s Cardiology clinic to let them know about the situation.  I get the impression they are more protective of Russell than we are.  I guess that is why we love them.  I gave them as much information as I could.  They agreed that Russell’s odds of being exposed to the Chicken Pox was not likely but with a second case being reported in the school they were concerned that the virus was “in the community.”  They made a compelling case that we should take some preventative action.  They consulted with Infectious Diseases who agreed.  We were given two clear options.  We could take an oral medication for about 10 days which would give him some immunity for the 10 days he is on the med or we could come into the hospital and take an IV medication that would protect Russell for about a month.   The logic was that in about a month, hopefully the virus would have come and gone through the community and Russell would no longer be at risk.  We chose to come into the hospital and give up 4 hours of our lives (the time it would take the IV to run) and try to protect Russell for a month.

Our Cardiologist made arrangements last night with the Emergency Room to make the necessary arrangements.  We would come into Emerg to start the IV at 8:00 this morning.

Like good parents we packed up this morning and headed to the hospital. We arrived at the triage desk at Children’s Hospital.  Upon hearing the word “chicken pox” we were immediately taken to an isolation room where we complete the rest of the registration process.  This was a good start; things went south quickly.  We were then informed that no one knew why we were there and no arrangements had been made.  They were now trying to reach our cardiologist to figure out a plan.  So awesome.

You have to keep in mind that I am assuming at this point that we have now entered the ER triage process.  In other words, the ER Doctor cannot see us (by policy) until other more urgent patients are seen.  Russell, to our knowledge, does not have chicken pox.  The only risk he might present is that he possibly could be carrying.  Because we are in an isolation room; we pose no risk and there is absolutely no urgency by the hospital to do anything with us until all other more urgent cases are seen.  Is  this irritating and frustrating; yes.  Is the hospital following policy; yes.

After waiting 2 ½ hours we saw the ER Doctor.  A quick exam and she ordered the med we needed.  Yes, the med our Doctor had requested the night before that should have been waiting for us.  The med we required is a blood product and has to be requested from Canadian Blood Services.  Just another little wrinkle that slows the process down.  After 4 hours of waiting my wife was informed that they did not have any medication on hand and they were now looking for other sources.  So, now it was looking like our trip may have all been a waste of time.  At this point I was noticeably irritated. 

Shortly after, our nurse contacted my wife again and said that they had located the medication and that it was not administered by an IV but by a simple injection.  A 3 second injection!  The nurse went on to say that they were in the process of preparing the injection and that we would be ready to go in a few minutes.

Don’t get me wrong.  Not having to wait around for an IV to run was fantastic news but what about all of the other information we were given.  This really didn't add up.

We checked the data on the medication (which we requested) for and it seemed to be the correct thing.  Russell got his medication, we waited for 20 mins and went home.  We waited around 5 hours to get a simple single injection.  The frustrating part to me was that I could find no fault in what we went through.  Yes, there was some communication issues but this is what our health care system calls quality health care.  From my point of view if this is an example of the system working then this simply is not good enough.  

From the beginning of the process no one considers our schedule and the inconvenience to us.  I had to take time off work for this.  My wife had to use up one of her valued days off.  Russell missed a day of school.  This is never considered when building these processes. 

Patients need to start demanding more and better service.  If this is public health care, the public must speak up and be heard.