Wednesday, April 11, 2018

Go Jets Go

For the next few weeks there will be a recurring theme and topic of discussion in the City of Winnipeg.  Even conversations about weather and bad roads will be eclipsed by one pervasive topic.  Hockey! Playoff Hockey!

I have not always been a Jets fan.  I had only a casual interest in hockey as I watched the die hard Jets fans suffer through the earlier version; Jets 1.0.  A team that would bring so many conversations that involve "woulda"..."coulda"..."shoulda".  A team that showed a few flashes of promise only to have their expectations crushed.

The 2017/18 season has been a lot of fun.  This team has talent and it shows.  At times they are not just good; but really good.  Winnipeggers deserve this.  Whatever happens in the next few weeks I hope Winnipeggers, and Manitobans enjoy this.  This is fun and its a welcome distraction from the challenges and pitfalls of every day life.

In early December I traveled to Ottawa, for work.  I walked into one of our corporate boardrooms and deviously asked if anyone had heard the score of the hockey game last night.  All I heard was moans and groans as our Jets had crushed the Ottawa Senators the night before.  That was worth the price of a flight to Ottawa.  Yes, being a Jets fan has now become a lot of fun.

I'm proud of the work that the Jets do in the community to provide many people with a much needed boost.  In fact most NHL teams are very good at supporting their communities.  I enjoy seeing the Jets players go to schools, hospitals and help out in the community.  It means a lot to us.

We have a bit of a joke in our house.  In spite of our time in Edmonton we would never be Oiler fans.  It was just never meant to be.  When we were in hospital in Edmonton, with Russell, members of the Edmonton Oilers and the Edmonton Eskimos would routinely stop by the hospital and greet the kids.  In 6 months and several visits Russell never met one of these players.  We were always busy with a procedure or some test going that meant we were absent when the players would stop by. 

Regardless of our scheduling conflicts we appreciated the attempts these players made to brighten the day of patients.  It's been encouraging to see the Winnipeg Jets players continue this practice of supporting the community.  It means a lot to everyone.  I think everyone deserves a distraction as we all go through some very challenging times.  Sports provides us an outlet where people who have very little in common can come together to support our team.  I don't think we have seen any better example of this than the outpouring of support that we have seen, this past week, for the Humboldt Broncos.  The amount of support for the team and their families has been awe inspiring.

So for the next few days and hopefully weeks we can set aside our differences and be distracted for a while.  A very welcome change for a community that really deserves it.

Will the Jets make a deep run into the playoffs?  Will they crash and burn in the first round?
Who knows.  This is sports and anyone who is a sports fan knows you should expect the unexpected.

No matter how this season ends...this has been a lot of fun.  Buckle up and enjoy the ride.

Saturday, March 24, 2018

The Awkward Silence

We’ve all been there.  

Uncomfortable situations where you aren’t really sure what to say next.  They happen all the time.  Something is said or done that makes you pause for a moment and say to yourself “what do they mean by that?”  or “who do you think you are?”

For the past few years, as we have gotten to know our medical providers.  We’ve had that awkwardness surface a few times.  Relationships are changing in health care.  I think that is a good thing.  However, as we redefine the relationships with our health providers we enter uncharted territory.  What’s appropriate? How much of ourselves do we emotionally invest in these relationships?  How much is too much?  Let me explain.

As a patient you are frequently being put in vulnerable positions.  Emotionally and physically.  Our personal space is invaded by poking and probing, often in areas we consider “private.”  Medically necessary? Yes.  Awkward and uncomfortable?  Definitely.  However, this isn’t new.

What is new and even more complex to deal with is the emotional and social side of the patient-provider relationship.  Over the years we have become very attached to our care team.  It is much more than a sterile professional relationship.  We have opened up to each other and shared ourselves.  This has been a two way street.  I have met some of our Doctors spouses and children.  They have shared their own stories of the challenges of being a parent.  We’ve also shared many laughs.  This has made a huge difference to us as we have grown to appreciate these people for the people they are and not just a title or position.  However, there are limitations to this relationship.  There must be some professional boundary; but where is that boundary?  What is appropriate?  The truth is that these can be high risk relationships.

Several years ago I was exchanging emails with another parent of a heart kid, as it turned out another transplant kid.  We had been introduced to each other by one of our Doctors.  It was this Physician’s informal version of peer support.  Over the next few months this Dad and my paths would cross related to some issues going on in the hospital.  We would communicate semi frequently, via email, as their daughter encountered some significant challenges.  It was difficult to read his string of emails as their health care journey progressed.  His daughter was admitted to hospital and steadily declined.  Many of the Doctors and Nurses that he knew, I knew as well.  We would talk about them by their first name.  We had a relationship with them.  They were a part of our family.

Then eventually the email came that I was dreading.  His daughter had passed in the ICU in Edmonton.  It was gut wrenching to read as the feeling of helplessness and grief consumes you.  A few weeks passed and we once again exchanged emails.  I recall an email he sent to me that described how alone and abandoned he felt.  When his family was in hospital they had support.  They had a team who was coaching and encouraging them.  They had a bond in this young lady who they were ALL caring for so diligently.  They were unified in their purpose.  When his daughter passed there was no reason to go to the hospital anymore.  His team was gone.  He told me in his email that he felt like he wasn’t part of the club anymore.  He even stated that it extended beyond the medical team.  He had been active as a parent volunteer and was involved in hospital activities.  Now, that too felt like it was gone.  It was tough to read but I understood exactly what he was talking about.
I too have felt this awkward distance from our health providers.  When Susan and I celebrated our 25th wedding anniversary last fall we spent considerable effort in determining the guest list.  It became very apparent to us that there was a gaping hole in that list.  There were 5 or 6 names that could have been added to that guest list, that were absent.  The close medical team who have spent the better part of the last 10 years with is through some of our most tumultuous moments.  It was also striking to think how integrated these people have become in our lives.  They really have become friends and family to us but yet there is that illusive “barrier” that exists.  That professional distance that must remain in place.

I raise this issue for two reasons. 

One, I think the closeness and camaraderie we feel with the people who look after our medical needs is phenomenal and has benefitted us immensely.  I would never discourage that relationship, provided that it is a healthy relationship.  Which brings me to my second point.

For this to be a healthy relationship there does need to be boundaries.  For there to be boundaries these issues need to be discussed.  This should all be part of the education that patients receive as they journey through the health care system.  Yes, we should learn about the technicalities of our illnesses, the medications, and the treatments…but there is a social and emotional component that is also extremely important.  You need to have a life.  A life outside of the hospital.  You can’t cut yourself off from your community.  Your supports.  Your family and friends who may have a difficult time relating to what you are going through and may not understand the biological/medical nuances of your experience.  This is a far more difficult balancing act than it may seem.  The bottom line is that we all hope to put our illnesses behind us, and once we do and re-enter normal society we have to be prepared for that as well. 

A difficult transition for many.

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? 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


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 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 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 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?