News Flash: Manitobans are Skeptical of Politicians plans for Health Care

Thank you Captain Obvious!

Much ado has been made about a recent opinion poll release by Probe Research about the changes being made to Health Care in Manitoba.  In short, the poll indicates that 60% of Manitobans believe the Healingourhealthsystem.ca plan is about saving money and deficit reduction, not providing better health care.

First off, this is an opinion poll to gauge the perception of the voting public. This poll is really measuring how well the plan is being communicated and accepted by the public.  What the poll tells us is that the people of Manitoba are skeptical of their political overlords.  That’s probably a good thing, especially when health care is at stake. Governments and the WRHA (Winnipeg Regional Health Authority) don't exactly have a strong record on improvements in health care.  So skepticism of a new plan is no surprise to anyone.

Is this poll a predictor of success or failure of the Government’s plan for health care?  I don’t think so...and that wasn't the purpose of the poll.

Some have called the changes to health care "convoluted" or "confusing."  In reality, that is the current state of health care.  So that isn't changing.

What’s Missing from the Poll?

There is an obvious question I have related to this poll.  Are Manitobans satisfied with the status quo?  Do Manitobans think that an overhaul of our health care system is needed?  That is a poll that I would like to see the results of.  I would predict that the results of the poll would be overwhelmingly in favour of changes to our health care system.  

The problem is what changes should we make?

The difficulty with selecting what improvements should be made is that once you put pen to paper and start setting concrete plans you inherently open yourself up to criticism from every self-proclaimed “expert.”  Let’s face it, being critical is easy.  Generating solutions…now that is the hard part.

To Consolidate or Not to Consolidate?

One of the key strategies to the new health care plan for Manitoba hinges on consolidation of acute care services.  In the case of Emergency rooms, the number will shrink for 6 to 3.  The plan is a lot more involved than that but Emergency Rooms seem to garner the most attention.  A re-alignment of services and reducing services at some sites seems counter-intuitive.  How can reducing services improve health care?

The opposition NDP in this province like to dwell on what happened in the 90’s with health care, so let’s go there.  Do I want to talk about Connie Curran? No!  I want to talk about Justice Murray Sinclair.  Specifically his report on 12 deaths of infants in the early 90’s.  Why is this important to discuss when discussing consolidation?  Because, inadequate services spread too thin resulted in these deaths.  

Much of the media coverage, related to the judicial inquest, blamed the surgeon at the centre of the inquest, Dr Jonah Odim.  Some closer examination reveals a larger systemic problem that existed at that time.  The inquest proved that there was not sufficient volume of patients in Winnipeg/Manitoba to support a pediatric cardiology surgery program.  The one surgeon was inadequate, the nursing staff did not have the support or specialized training, the ICUs did not have the tools to support complex cardiac cases, and the oversight was not adequate.  This was a disaster waiting to happen.

Is this inquest relevant today?  Can we apply some of the lessons today to our broader health care system?  Too some degree, a similar situation exists in Winnipeg hospitals today.  Specialized services, diagnostics, and staffing are dispersed throughout Winnipeg hospitals.  CT scans and MRIs are not available at all hospitals.  In some situations a CT exists but does not operate on off hours.  This means patients are shuttled all over the city for various tests and specialized procedures that may not be offered at their “home” hospital.  A high proportion of medical errors happen during transfers. This is an unsafe condition that needs to be addressed.  Reduce transfers and you will create a safer environment.

Solutions:

I raised the experience of the Pediatric Cardiology because they found a solution to their surgical predicament.  The answer was consolidation. 

In the late 90’s as Justice Sinclair’s inquest was drawing to a conclusion the solution to Winnipeg’s Pediatric Cardiology Surgery program was beginning to materialize.  Winnipeg was not alone in their need for this solution.  Children’s Hospitals in Saskatchewan, Alberta, and British Columbia also had inconsistent coverage for these very specialized little patients.  The solution was to create a surgical reference centre in Edmonton to consolidate Pediatric Cardiac Surgery at the Stollery Children’s Hospital.  One centre in Western Canada to perform all Pediatric Cardiac Surgeries.

It was not the perfect solution but it was the best option available.  20 years later no one is questioning that decision as consolidation has been a resounding success. Former CEO of the WRHA, Arlene Wilgosh, stated this about the Pediatric Cardiology program in Manitoba, 

"Out of these tragedies we established a program that stands with the best internationally." 

Stollery Children's Hospital - Quality Dashboard
Data Source:  Society of Thoracic Surgeons Congenital Heart Surgery Database

Does this mean that this process is perfect? No.  It is a huge burden on families to uproot themselves and make the journey to Edmonton for surgery.  It is daunting for any family.  However, if you had a choice of going to a mediocre surgeon or going to the best?  What would you choose?  Would you take your child to a Doctor who does a Norwood procedure every once in a while or would you take your child to the hospital that has the highest survival rate associated with performing surgeries with the highest risk of mortality, in North America.  (Not Canada…North America!!!)

Yes, the Stollery gets all of the acclaim and media coverage.  Fortunately, with the advent of consolidation of surgical services in Edmonton, our Peds Cardiology program has very quietly and very effectively developed a program, here in Winnipeg that integrates and compliments the services offered by the Stollery.  After you receive surgery at the Stollery or another centre you still require significant follow up and management.  That is what our local program is doing. There is much more to an effective cardiology program than just surgery.  The program in Winnipeg has been built so that Manitoba’s children have access to world class cardiac care.  Not mediocre.  Not so-so.  World Class.  This does not stop with their relationship with the Stollery.  This relationship extends to their relationship with other sites across Canada and the United States.  The bottom line is our kids get the best available treatment possible.   

The Bottom Line

So my question is…do you want the best Emergency Room services that Winnipeg has to offer in three locations…or do want a mish mash of services, inconsistently distributed throughout 6 centres?  The question is really that simple.  Does it mean that a fully equipped Emergency Room is a 5 or 10 minute drive further from your home?  Yes…we don’t live in a perfect world.  No solution is without its negatives…but to me and from lived experiences I want excellent care when I need it.  Geography is an after thought.

Combining your best resources and services and consolidating them under one roof makes a lot of sense.

The Risks:

The challenge for the management team at the WRHA is balancing consolidating resources, in acute care facilities, versus providing relevant community care convenient for everyone to access.  Health care doesn't only happen in hospitals.  That is what will determine the success of the plan in the long term.  The plan cannot only focus on acute care hospitals but also what happens when the patient is discharged.  What supports are in place in the community to support the plan?  Home care, community physicians, walk in clinics, social services, are a big part of this plan and will be critical to its success.  Maintaining continuity of care from hospital to home may prove to be one of the most challenging aspects of this new strategy.

Change is difficult.  The effect of change should not be taken lightly.  However, we need to change and improve our health care.  We have to get very good at change.  This is only the beginning.

Author's Note:

As a parent of a son who has benefited tremendously from the recommendations and actions taken after the Pediatric Cardiac Surgery Inquest we will be forever be indebted to those families who lost their children nearly 25 years ago.  Those families and many who followed were pioneers who have had a long lasting impact on our cardiology program and made it what it is today.  A program that we should be learning from.

These families along with the doctors and nurses who championed change and improvements in a flawed system have always put their children (their patients) first.  They made decisions, not for personal benefit or notoriety but so that children could grow and thrive under very adverse circumstances.  We would be foolish not to learn from them.

Probe Research Poll - Aug 28 2017

WRHA - Healing our Health System Plan

Winnipeg Free Press - The Heart of the Matter - April 17, 2015

Winnipeg Sun.2017/08/28 Tories Convoluted Plan Lost on most Manitobans

Report of the Manitoba Pediatric Cardiac Surgery Inquest

9 Birthdays

Way back …many years ago…I started my first blog.  At the time I really didn’t even know what a blog was.  It wasn't even called a blog.  I was using a Care Page that was suggested to us by our hospital staff.  It was a way of keeping all of our friends and family apprised of our medical adventures when we were unceremoniously uprooted from our tranquil residence north of Winnipeg and became immersed in “hospital world” in Edmonton.

After a year and a half of seemingly non-stop thrills and spills it seemed like the right time to shut down the Care Page.  Time to close a chapter of our life that we would just as soon forget.  Unfortunately, those 18 months indelibly changed me and my family.  I doubt there is a single day that goes by that I don’t think of our experiences in Edmonton.  The PICU, the doctors and nurses, the families, the hotel where we stayed, and even the hospital cafeteria.  Those experiences changed us.  

We are still processing many of these experiences to this day.  Some may call it PTSD, I am sure there are many diagnosis that we could come up with.  The impact of our experience was (and is) profound.  Perhaps I dwell on these experiences too much, but that is something that we are working through.  This is a long process that is made even more complicated by the fact that it is ongoing.  The grim reality is that our story is far from over.

Russell at 2 weeks

August 5th is Russell’s Birthday.  A momentous occasion.  9 years ago he was born on a stunningly beautiful day.  On this day, I wanted to get back to the initial motivation for blogging in the first place.  

How is our little boy doing 9 years later?

That is a very complicated question.  I have to admit the first time we went for an ultrasound and found out we were having a son, I think I was like many fathers and was already planning all of our father – son moments.  I think we all do this.  Hearing him say his first word or watching him take his first steps.  Then there were the “guy things” you imagine.   Signing him up to play soccer, learning to skate, going to a football game together…the list goes on.  I was excited to be having a son.  Daughters are pretty cool…but sons are different.  I could imagine all of the cool toys I could justify buying.  Toy guns, Lego, video games….all for Russell….of course.  Although it is unrealistic, I think we all do this, and start setting some lofty expectations.

That all came to a crashing halt when Russell was diagnosed with his heart condition.  In a moment, these visions of father-son adventures had to be significantly altered.  Did I really care that Russell would play hockey? No, it was no big deal…but when someone tells you “can’t” or “never will” is a totally different scenario.  You can’t tell me what I can or can’t do is the attitude many of us have.  It was a very difficult reality to accept that Russell would never do many of the things that other children could do.  He may not have enough cardiac function to run or play like other kids.  He may never ride a bike.  In only a few moments with a devastating diagnosis we now had to adjust our expectations for our son.  Life had played a cruel joke on us.

In the months that followed, things went from bad to worse.  Instead of praying for a normal  life for Russell our hopes were lowered to hoping that he would see his first birthday.  What was worse was that our little boy was struggling.  It is a dark time when you ask your PICU Doc to intubate your son because you can see him struggle for breath and the cries he make are not the typical cries you hear from a healthy infant but a life and death struggle being waged in front of your eyes. 

Then we were offered a second chance.  The Transplant

We intellectually understood the concept of the transplant, but understanding what it meant emotionally was a completely different matter.  We asked many questions about what Russell’s life would be life with the transplant and we got many different responses.  It was not talked about as a cure…which it is not.  A cardiac transplant comes with its own complications.  This was something that we would have to deal with forever.  It wasn’t this magical solution.  However, the one word that was mentioned to us…was that it would give Russell a chance to be “normal.”  That word has stuck with me.  Don’t get me wrong…living with a transplant is far from normal…it has many risks and involves lots of management.  What stuck with me about the concept of “normal” was this opened the doors to many things we had given up on.  Our son may be able to run.  He might even play sports.  He could go to gym class in school.  He (we) were being given a second chance.

Since our early days of learning about life with a transplant…there have been many challenges.  The complications that were discussed way back when have certainly become a reality.  In many ways we are living on the edge.  We still have fears about the things we have been warned about again and again.  The fear of organ rejection.  The fear of kidney damage.  Many of the meds Russell takes have many side effects.  Immune suppression is a huge issue as we have to worry about every sniffle and cough, not only with Russell but everyone he is exposed to.  He has had RSV, and Chicken Pox.  He has had to be quarantined at home and could not attend school because of suspected measles in his school.  Then there are the challenges he is having at school.  This past year has been a nightmare.  There could be many reasons for some of the challenges Russell is having with learning and behaviour but we are now beginning to realize that medical trauma, the experiences he had as an infant, may be playing a role as he copes with the challenges in school.  It seems every bit of success we have had has come at a price.  As a parent, it is excruciating to watch your child struggle.  If anyone deserves a break it is him.

There have been so many challenges that it’s difficult to recall them all.  Perhaps it would be better in some ways that we could forget some of them.  However, the bottom line is that we have a son who is absolutely full of life.  I still recall some of his nurses, even when he was an infant, commenting on how such a little boy could have such a huge personality.  They couldn’t be more correct.  He is a real character.  A character who at times drives us crazy.  He is stubborn, strong willed, and at times a holy terror.  It is also often pointed out that it is that stubbornness and strong will that kept him alive.  He has a smile that lights up a room.  He is kind and has many deep feelings.  He is a leader and likes to be in charge.  There are also times where he just wants to be left alone and enjoy his quiet time.  He is a Lego Master Builder.  He spends to much time on electronic devices.  He has a distinct sense of humour.  Like any 9 year old he finds bodily functions hilarious (I’m not going to explain).  Many times he sneaks out of bed early in the morning, and with all of the stealth he can muster he will sneak into our bed and cuddle up with his Mom.  After all; he is a "Mama’s boy."

Every once in a while you have those “A-ha” moments.  With Russell it happens quite often.  He does something that leaves you amazed.  To many parents some of these moments would seem rather benign.  To us, many of these “benign” moments are huge.  Moments that at one point we thought we would never experience.  

A couple of weeks ago when we were at the lake.  Both kids were riding their bikes in the campground.  I couldn’t help noticing the smirk on Russell’s face as he went whizzing by us on his bike.  That would have never been possible without his transplant.  The gravity of that moment, makes you very humble as I recall the many people who made this moment possible for him. 

What's the fun in going to a football
game if you don't get to buy a few
souvenirs.

Last week I was able to take Russell to his first Football game.  Yeah…he drove me nuts because he can’t sit still for more than 5 seconds but he had a great time.  It was one of those father-son moments that become great memories.  We both had a great time.

I have said this many times.  If there is anything that we have learned in our journey over the past 9 years is the gift of being thankful.  Thankful for our son who has taught us so many life lessons.  The second lesson learned would definitely be to enjoy every moment.  Life is a gift.  We are not defined by our adversities but they are critical in making us who we are. 

We have no doubt been changed by our experiences of the past 9 years.  In many ways I feel like I’ve had to do a lot of growing up.  I am looking forward to watching Russell grow up, knowing there are many more chapters to be written about this boys’ remarkable life.

Happy Birthday Russell