Saturday, February 24, 2018

All Quiet on the Blog Front


I thought I should take a few moments and explain why my blog has been so quiet as of late.

Blogs are great tools for sharing brief stories or random opinions.  Short, sweet, and to the point.  I have enjoyed writing my blog posts and I hope some of you enjoy reading them.  I am always open to questions and comments as long as they are constructive.

So why I have not been posting on my blog as of late?

I have embarked on a book project.  This is something I've thought about for some time and finally I have decided it's time to do it.  This was my New Year's resolution this year.

I had several ideas and concepts for the book that I wanted to explore.  The one apprehension I had having never done this before was to get a little guidance on how to approach a fairly monumental project.  The answer to that question came early in January when Susan brought to my attention a course that was being offered, in my community, about how to write your life story.  Knowing that my book would be autobiographical in nature it was a great opportunity.

I started my first class in mid January and I'm now seven weeks in.  Wow, has this been a journey.  The class is being facilitated by Wilma Derksen.  A person very well known to the Winnipeg Community.  Co-facilitating the classes is Martha Stewart (no not that Martha Stewart) who shares fascinating stories of her life growing up as a missionary kid and travelling all over the world.  The real stars of the class are the participants who have shared so much of themselves.  Truly an amazing group who I am learning so much from.

The weekly classes are just the ticket I needed to be accountable for keeping up with my writing project.  As of today I have just eclipsed the 30,000 word mark and I'm just getting warmed up.  Pretty good for just a bit over a month.  I predict that my project will hit the 80K to 100K mark before I am done so I haven't quite got to the half way mark.  I still have a long way to go but I'm enjoying  the process and I don't think my progress to date has been a small achievement.

The best part about "Write Club" is the sharing and interaction that occurs.  The stories and experiences the group shares are quite amazing.  Everyone, absolutely everyone, has a story to tell.    As we are all writing our own stories and the adventures of our lives there are many difficult topics that come up.  As we have grown to be comfortable each other we have started to open up and share more openly and freely.  Honestly, this class might be the best from of therapy you could ever experience.

The Process

I am a long way away from publishing my book.  It is still taking shape.  My first draft is a fairly non-specific, non exciting, list of facts, and experiences from my life.  I am working in chronological order to try to keep my thought process in tact.  This is raw data at this point.

The challenge that lies ahead is that once complete (that I expect to be 80K words+) I then need to begin the process of editing.  Many other question need to then be asked.  What is the message of my book?  Who is it for?  How do I move the pieces of the story around so that it might be interesting for someone who doesn't know me to read.  I expect the editing process to be as much work as writing the rough first draft.  The pieces of my story will have to moved around like pieces on a chess board until it makes a cohesive story.  Many components will be edited out and re-written.  Now that I have written nearly a 1/3 done I think I know what direction I am heading.  The message behind my book is now becoming clear, although I'm open to tweaks here and there.

Regardless, of what this project will look like in the end, the process thus far has been quite cathartic. Writing about some experiences in my life that would seem quite innocuous have proven to be impactful and meaningful.  Amazing how some of life's trivialities form how we think and make a great impact on us years later.  Quite an experience to re-live some of those moments by writing them down.

For now I am enjoying the process.  I guess everyone will have to stay tuned to see if this book ever sees the light of day...and maybe you might be in it !

Wednesday, January 3, 2018

Reality Check

So the holiday season is behind us and life is getting back to its “normal” routine.  The kids don’t start back at school until Monday so that leaves some opportunities to take care of a few appointments that are easier to accomplish when the kids aren’t in school.

Today we met a new Doc.  My son Russell has had intermittent GI issues for most of his 9 years of life.  After a particularly nasty bout we got a referral for Gastroenterology.  Our appointment took place earlier today.

The official Emoji of Gastroenterology


I’m writing this post to remind myself about all of the quirks and nuances that have just become a part of our "normal" life.  Things we don’t think about any more or have intentionally forgotten.  The small things that stack up one on top of another and result in making our lives so complex.  I’m sure there are many who can relate.

The first reality check was on our drive to the hospital and realizing how long these issues have been around.  Russell’s GI issues have been with us going right back to when he was a baby and shortly after his transplant.  Given the complexity of his health issues there are many reasons he could have GI issues.  It could be medications, diet related, side effects of his serious health issues…the list goes on.  The bizarre part of this issue is that it has been with us so long and for the most part ignored.  We always had bigger, more serious issues going on.  A mild bout of diarrhea now and again was always dwarfed by other “supposed” more serious issues.  It is realizations like this that make you think you need to go back for remedial parenting school.  To give you an idea how long this has been an issue I realized that I wrote about this years ago in a previous post...from 2011.  Battling # 2 - Mar 2011

We expected our appointment with the Doctor this morning to be more or less a “meet and greet.”  This is a new GI Doc and we expected her just to want to get familiar with Russell.  Given that we aren’t currently having issues at the moment we didn’t think there was a great deal of urgency to this appointment. 

After getting settled into the exam room we met the nurse clinician, the Doc and a dietitian joined us.  I do appreciate when a team is prepared.  They had all of Russell’s information readily available and they had a clear understanding of why we were there.  You can’t always assume this happens.

The second reality check was reviewing and providing some of our history and past encounters with GI.  We discussed our past clinic visits and various tests that were done over the past years.  The issues we have had in the past and how they have changed over time.  Reviewing this information is a daunting task and time consuming.  We probably were at it for about an hour.  That is a lot of history for an ailment that is merely a footnote in Russell’s chart. 

This was a good review of all of the issues our little guy has had and how they are all interconnected.  Too much sugar in the diet does nasty things to the gut and messes with the blood sugar.  However, when your kidneys are compromised one Doc is telling you to push the fluids.  When your son refuses to drink anything other than peach juice with is loaded full of sugar it presents many complications.  For years we have had to do a balancing act with diet, medications, behaviour…over and over we had to adjust and adapt our approach.  This was all made even more complicated by a young child who is always changing and growing. 

I appreciated the appointment and the patience and time the Doc took in listening to us; and trust me there was a lot of listening.  Overall this was a productive appointment for all of us.  However, as I write this I think about the many short comings of this kind of approach to caring for a medically complex child.

GI is now the 6th specialty that my son will see on an ongoing basis.  We do these appointments on a 6 month cycle.  That means that in one year we will have 12 appointments just to sit down, have a chat, and kick the tires.  These appointments usually come with tests of various form, which mean return trips to the lab etc.  This does not account for the unplanned trips due to normal illnesses or other complications coming up.  All of this time and effort is simply to maintain the status quo.  To add to the complexity; if one Doc orders a new med or new treatment, invariable the rest of the team has to be consulted with to ensure their “silo” is not adversely affected by said treatment.
It is this complexity and constant back and forth that results in a GI issue that can conceivably result in serious harm going unchecked for years in spite of almost constant interaction with the health care system.   A startling realization.


So today was another reminder that we aren’t “normal.”  We have a unique experience and our path ahead remains uncharted.  A very important realization as we start a New Year.  A chance to reflect, re-evaluate and keep moving forward.  One foot in front of another.


Thursday, October 26, 2017

What Could Health Care Learn from Canada Post?

What?  Seriously?  Canada Post?...you can't be serious!

Just bare with me a moment.  

I just returned home from Ottawa last night.  Another work trip done. 

Overall, I’m proud to work at Canada Post. Don’t get me wrong.  Canada Post has problems, and lots of them.  What I like is that the vast majority of people at Canada Post are great people.  These people genuinely try hard to move the mail every day so that our fellow Canadians can get their orders from Amazon, or their letters from Grandma. 

It is disappointing that what the majority of Canadians hear about Canada Post is mostly related to labour disputes or the political games we get entangled in.  After all, we are still a Federal Crown Corporation and have many years of baggage to deal with.  That being said, could I find myself out of work next week?  Yes.  Our industry is volatile and our organization is not immune from the problems that all of us see in our workplaces.  

Nothing is forever and Canada Post has had to learn that lesson the hard way.

So what on earth does Canada Post have in common with Health Care?

Tomorrow is the Annual General Meeting of the Winnipeg Regional Health Authority.  This is where I make that transition from concerning myself with one bloated government bureaucracy (Canada Post) to focusing on another bloated government bureaucracy (Health Care).  As organizations there are many similarities.

I think the frustrating part about working for both of these organizations is that you are subject to the whims of government.  The decisions that governments make are not always rooted in reality.  Political agendas in many ways outweighs common sense.  Just a frustrating reality.  I also think that given our government ties both of our organizations are viewed with skepticism by the public.  

One of the things Canada Post has gotten right is that they have discovered that if they are to remain relevant in the future, they have had to discover the "customer."  The cash cow that was the letter mail business is drying up.  The era of e-business has arrived and with it came the avalanche that is the parcel business.  




The big difference for Canada Post is that in the parcel business Canada Post has had to face a hard reality.  Competition.  They have had to face stiff competition from established and successful competitors like FedEx, UPS, and DHL.  They were forced to compete or become irrelevant.  Their very survival depended on it.  If customers rejected Canada Post, it is likely that our organization would have been decimated.  Don’t get me wrong, we still have a long way to go when it comes to really be customer driven.  Federal Crown Corporations are bureaucratic behemoths that do not change easily.  Much like health care.  

Change is very hard.


Unfortunately, health care has not had to face the prospect of irrelevancy like Canada Post.  In fact, the demand for health care is increasing daily.  If you work in health care you likely have more job security than the vast majority of other industries.  This is all going on while health care has yet to discover their customers.  

I don’t think anyone would ever describe health care as being customer-driven.  

We like to use buzzwords like being “patient-centred” but we don’t see this language extend much beyond the words printed on the cover of a pamphlet.  The culture in health care is so awkward that you could likely start a heated debate by referring to "patients" as "customers."  How can you call yourself "customer driven" when you can't even agree on what you call the "customer."  Political correctness is more prevalent than common sense in health care.

Competition forced Canada Post to discover their customers.  Competition forced Canada Post to start thinking like a real business and not a Federal Crown Corporation.  Today, we actually talk to our customers and are listening to their input.  We still have a long way to go, but this new culture is definitely starting to pay off.  We are slowly becoming more innovative.  This is a slow process but we know that it is working.  

Canada Post is now the #1 volume carrier of parcels in Canada.  Thanks to our customers!

On the other hand, the Health Care industry in Canada has no threat of competition.  No incentive to serve their customers other than to avoid negative media attention.  All Health Care Administrators need to do, to be successful, is to not irritate their political overlords.  We as health consumers have accepted this reality and are accepting barriers to accessing health care.  The Canada Health Act states the following as its primary objective.


The Primary Objective of Canadian Health Care Policy

It is hereby declare that the primary objective of Canadian health care policy is to protect, promote and restore physical and mental well-being of residents of Canada and to facilitate reasonable access to health services without financial or other barriers.
- Canada Health Act


We violate this policy every single day in Canada and it is time we as patients and citizens of this great country demand better.  We get fixated on the "financial barriers" but we often ignore the systemic barriers of health care rationing.  Access to a waiting lists is not access to health care.  

The only way the culture of health care is going to change in this country is if we demand better.  We, as patients, need to organize and innovate and challenge the health care monopoly.  Health Care is stuck in the culture of the status quo and the only group I see challenging the status quo are patients.  Giving patients choices and a greater say in health care policy are a starting point.  Should we be introducing competition into the health care industry?  Pursue a public – private hybrid system?  I think so…but I think ultimately we need to let the patients decide.

Forcing an outdated dinosaur like Canada Post to compete in private markets has made a world of difference in our organization.  We now have a future.  Can the health care establishment benefit from some competition?  Again, I think so…but it is important to remember two things.

1)  Canada Post has achieved success and remained profitable while still remaining a Crown Corporation.  So it is possible to be customer driven while still remaining under the control of government.

2)  Government could also undo all of the success that Canada Post has achieved by changing our mandate.  Our future is not secure.


Free Health Care is not "free."  Also, free markets are not "free" either.  They would create their own problems and challenges for regulatory bodies.  However, it is time we let the customer decide what we want the future of health care to look like in this country.

We need to get past the idea that there is only "one" way of getting things done.  I'm obviously someone who supports competition and privatization in health care.  Does that mean I want to abandon single payer.  No...far from it.  There are many things we can do within our existing system that can make substantial improvements.  We have to get past ideological barriers and create a system that works.  That focuses not only on outcomes but how we get to those outcomes.

We CAN do this!


Wednesday, October 4, 2017

"25"

Yesterday (October 3rd) was Susan and mine 25th Wedding Anniversary.  We had a nice celebration on Saturday and we were overwhelmed by all of the well wishes.  It was particularly gratifying that we had some friends honour us by registering to donate organs and by donating blood.  That was quite amazing.

Who are these kids???

Yesterday, we celebrated quietly and in our own unique way.  I booked the day off and after sending our kids off to school, Susan and I made our way to Red River College.  We were scheduled to speak to 2nd year family nursing students.  A group I have spoken to several times in the past.  I was happy Susan was able to join me as this is not usually her thing.  It was a nice thing to do together on our anniversary because October 3rd is more than our wedding anniversary.  It is the anniversary of Russell's crash in the ER and his emergency flight from Winnipeg to Edmonton where we spent the next 6 months.

It was an emotional morning as we relived the 40 hours that changed the course of our lives and of course our marriage.  The setting in which we presented was quite informal and I appreciate the thoughtful questions that we were presented.  I am hoping that these aspiring nurses were able to see the human side of health care.  There were plenty of laughs and we managed to minimize the tears.  It is what it is.  It's real life.

After nearly 3 hours and some great discussion we left our nursing friends and we headed out for a very relaxing and well deserved lunch.  The rest of  the day was quiet...just as we had planned.  It was a good day.

Today is the the first day of our next 25.  The first 25 were certainly action packed and I'm a little afraid of what new adventures lie ahead of us.

As we left the nurses and finished off telling our story; we described our situation today.  We conveyed that we have many unanswered questions and that our story is still unfolding.  So when I closed off our discussion yesterday...I left with the words...to be continued.

Wednesday, September 20, 2017

Preparing for Your Health Care Future

Boy Scouts and Girl Guides have a motto; "Be Prepared"



Why is this?

"It is because...you have to be prepared at any moment to face difficulties and even dangers by knowing what to do and how to do it" ...Agnes and Robert Baden Powell

As someone who uses the services of health care on nearly a daily basis it is critical to me to understand what the future of health care might look like.  In other words I (and many others like me) need to "Be Prepared."


Dramatic Change is Unlikely

Many in this country are deeply invested and proud of our "universal" medicare system.  Make no mistake the concept of universal health care is noble.  Access to health care based on need and not on financial or social standing is worthy endevour.  Unfortunately, we live in a less than perfect world and there are realities to consider.  In other words...how do we pay for it?

How health care is delivered is an emotionally charged topic that nearly everyone has an opinion, regardless of their knowledge of the health care system.  If we aren't using the health care system now, it is likely we may need it at some point in time.  Health Care matters.


There are heated debates that have been ongoing for many years.  Proposals about maintaining medicare in its current form, the possibility of privatizing some components of health care, or moving to a public-private hybrid similar to some countries in Europe.  The discussions tend to get emotionally charged and in many cases are ideologically driven. To be honest I am tired of the arguments.  The debates have been going on for years and I don't see them ending any time soon.  Numerous reports and commissions have outlined cures for our health care woes.  At this point any new efforts to study the issues in Canadian Health Care is essentially a recycling of old issues and old recommendations.  Canadian Health Care has been studied to death.  Pardon the pun.


Due to the contentiousness of health care and how polarized our society has become; I doubt any kind of consensus would ever be reached regarding any fundamental change or improvement in the direction of health care.  It does seem to be the hill some people are willing to die on.

All of this hand wringing does not help any patient dealing with health care is its present form.  What can you do now to prepare for the future?  What will the future look like?  Here are a couple of thoughts to which I hope I am wrong, but I think are harsh reality.



What May Change in the Future

To be honest.  Not much.  


Health Care as it stands is controlled by a complex bureaucracy, that in one way, shape, or form eventually reports to government..  Government ultimately holds all of the policy and financial cards.  The challenge in making any substantial shift in health care policy is that change, on a large scale, can be potentially suicidal for any government.  Even if one province were willing to go rogue and make substantial change they could face stiff opposition from the federal government who can restrict funding to the provinces.  The point I am making is that any change in health care policy will bog down in government bureaucracy and political infighting. 


We have built a system that instils stagnation...not innovation.  That has absolutely nothing to do with medicare or two tiered health or whatever rhetoric you choose to employ.  It has to do with our current system which flat out refuses to change or when changes are made it moves at a glacial pace.

No one denies that health care costs are increasing and will only continue to rise.  Presently, there are many gaps in our health care system that require additional funding.  Things like mental health care or palliative care to name just a couple.  Currently, health care represents nearly half of provincial budgets.  Provinces can't afford any more.  The federal government has its own financial issues and funding levels will likely remain the same in the foreseeable futures.  Any large increases in health care spending will require increasing government debt or reducing budgets in other areas of government.  Given these alternatives it is likely that health care will meander aimlessly into the future with no clear direction or solutions being implemented.  Much like it has for the past 15 to 20 years.  Status quo.


Results of the Status Quo?

What has been happening in recent years in health care policy?  The trend for many years has been a slow retraction of health care services.  Very slowly and very methodically services in health care are slowly becoming more restrictive.  Everyone is feeling the squeeze.  These are subtle changes that politicians hope no one will notice or that the opposition will be temporary.  All governments do this - regardless of political affiliation.  Services that were once covered by our health care system are no longer available.  It starts with small things.  Follow up from hospital stays, such as home care, occupational therapy, or physiotherapy.  It's subtle.  May only affect a few patients, so it easily flys under the radar.  Certain prescription medications can be removed from the pharma care formulary (if you live in a province with pharma care).  User fees for services can increase.  Community programs once subsidized by the health care system are eliminated.  Additional pressure is placed on those employed in health care.  All aspects of health care are under tremendous pressure to do more with less.  Some of these ideas are good (nothing wrong with being more efficient) but what it has some unintended effects.  If "improvements" are done poorly they can stress health care resources and make the margin for error within health care increasingly small.  With an extremely small margin of error, patient safety is being put at risk.  This is real and it is happening today.

What does this mean for the patient?  Increasingly, patients are left to struggle within a system that is bursting at the seams.  As patients have no say in health care policy, how patients access the system is an afterthought.  When changes are made for the sake of "efficiency" patients are often the last people to be considered.  If at all.  We've stopped trying to have an excellent health care system...we are now just hoping our health care system will survive.

How to Survive

One of the fallacies of our "universal" system is that health services are free and that the system will be there when we need it.  We need to understand that this is just not true.  Many services are accessed with simply presenting your health care, but many are not.  This comes as a shock to many people the first time they encounter this reality.  However, having to pay for service is far from the biggest frustrations that patients deal with in health care.  The biggest challenge by far is trying to access it.  How do health care bureaucrats manage costs within our system?  They simply restrict access to it.

One of the most difficult things you will do in being a health care advocate is gaining access.  There are road blocks everywhere.  Wait times, endless referrals, silo mentality, archaic technology, restrictive policies, incomprehensible terminology, and flat out being ignored; are all rampant in health care and serve to restrict patients' access to health care services. The bottom line is that being an effective advocate requires a great deal of skill.  If you don't have these skills you need to learn them.

The public needs to educate themselves.  If you are unfortunate enough to require long term health care services becoming an advocate for yourself or a loved one is not optional.  How long are you willing to wait in an Emergency Room before you get up and walk over to the triage nurse and ask how long the wait might be?  Can you negotiate your way to getting quicker service?  Do you have a phone number or email address to contact a clinician if you have a question?  Do you carry good health insurance to pay for physiotherapy after you injure your shoulder?  Do you even know what is in your extended health coverage that you blindly signed up for when you took a new job?  These are all things you NEED to know.  It is not optional.  

Only the Strong Survive


One of the most disturbing realities about what I have stated above, is that not everyone is capable of this level of advocacy.  I am very fortunate.  I have health coverage that is paying for private services.  I have a job where I have a flexible enough schedule that I can take my family members to medical appointments.  We have had a strong network of friends and family who pitch in and help out.  The amount of support we have received has been amazing.  The unfortunate part is that not everyone has the kinds of supports we do.  Many people in our country lack many supports and services.  They can't access health care services because they lack the skills, time, and energy to advocate for themselves.

Is it any surprise that the people with the skills to access health care services, are usually people with "means" who have the time, financial resources, and education to be skilled advocates?

As noble as the concept of "Universal" health care is.  We are far from achieving it.  Denying that fact is not helping solve the many problems we face.  The problems are real and patients face them every day.


Are you prepared to face your health care reality?



Tuesday, August 29, 2017

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.






Saturday, August 5, 2017

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