Could Someone Explain the Rules?

 When you earn the dubious distinction of being medically complex, you get to learn lots of things about health care that you really hoped you would never have to.  The last month has been severely excruciating as it just seems that everywhere we have turned lately we have experienced some kind of lunacy.  Let me explain….

You have to be on Drugs!

Our first series of adventures involves our drug coverage.  Both Susan and I have private drug plans through our benefits at work.  We are well insured…or so we think.  In addition, we have a provincial pharmacare plan…YAY US!  The plans don’t exactly mesh real well.  Each insurance company and our provincial government are equally irritating to deal with.  Let’s just be honest; government operates like a badly run - politically motivated insurance company.  The only two entities that still use fax machines (government and insurance companies).  April 1^st marks the start of our pharmacare year.  Not a coincidence that it falls on April Fool’s Day.  On this day our drugs are charged to our private insurers.  These amounts accumulate as part of our pharmacare deductible.  Once we hit our pharmacare deductible then our private insurers are off the hook; for the balance of the year our drug charges go to pharmacare.  I am guessing that it will take us until June or July to hit our pharmacare deductible.  So far; this is fairly standard insurance stuff.  Now remember we are special.  We don’t do anything normal.  There are 3 meds that we get that require an Exceptional Drug Status (EDS) authorization.  These tend to be our pricier meds.  The EDS is filled out by our Doctors and sent to pharmacare.   This is done, behind the scenes, without any involvement from us.  If it gets missed; we have no idea.  This has happened.  Imagine going to pick up a med and being told that pharmacare won’t cover it because your EDS expired.  What do you do?  One would assume that you would pay out of pocket because you can’t go without the med.  You could just get the paperwork completed and get reimbursed later.  That would make sense... right?  Not with pharmacare.  Once you pay out of pocket…you are done.  You can’t get reimbursed.  Yes…this is insane.  The patient is punished because a Doctor forgot to submit the correct paperwork on time.  Remember this all goes on without your knowledge.  You only find out when you order and pick up your prescription.  A point in time when you NEED the med…..not optional for you to leave the med at the pharmacy.  This is our government plan in action. 

The insurance companies are equally insane.  Specifically, Great West Life does not recognize the EDS form from the government.  You have to fill out a “Special” Great West Life form for a specific med.  Make an appointment with your Doctor and have them complete the “special” form.  Again…the exceptional meds have to be re-approved on an annual basis.  This is why we prepare for our 6 month appointments with our Doctors and have a litany of forms and paperwork in hand.  We have to review with our nurse clinicians and Doctors.  We have to make sure all of the paperwork is up to date.  Folks, we are turning valuable health care resources (Doctors and Nurses) into data entry clerks.  I am also not considering the amount of hassle we go through on an ongoing basis to manage all of the “drug” issues.   There is more…much more.  We have had transcription errors and compounds mixed incorrectly.  A regular three ring circus.

How Government Makes Health Care Cuts

A few years back some of our drug coverage and pharmacare rules changed.  Many so called “natural” items were removed from the drug formulary.  This means things like vitamins or natural remedies etc are not covered.  Doesn’t seem like a big deal.  The funny thing is that these include some very necessary items …such as sodium bicarbonate and sodium citrate.  Very common among the cardiac crowd.  You may say…wait a minute…sodium bicarbonate is just baking soda.  True.  However, to get it emulsified and mixed into a liquid from a pharmacy will cost you over $100 a bottle.  If you go through a bottle every couple of weeks that adds up.  Some resourceful parents obtained the recipe from the Children’s Hospital and shared it.  For a couple of years we happily mixed up our own brew at home.  It was easy and we got good results.  Then we got a new nephrologist who was horrified that we “parents” had setup drug labs in our kitchens and asked us to switch to sodium citrate.  In fairness...it is a better med.  Better for blood pressure etc.  Again this med is not covered because it is considered “natural.”  Our nephrologist thankfully did not leave us high and dry.  Through some bizarre manipulation of the “system” she orders the med and we get it at no charge.  No pharmacare…no insurance company.  I don’t have any idea how this happens but we get the med at no charge.  Just one of those bizarre anomalies where we don’t ask questions. I'm being intentionally vague here as I am not completely sure this process is kosher.

The rule change that I referred to above also involved making some commonly available meds that were only available via prescription available as an over the counter drug.  I must give the bean counters kudos here.  By making it over the counter and more accessible they also don’t cover it under pharmacare (you don't need a prescription remember).  You have to pay for it out of pocket.  I told you those bean counters were crafty.  If the general public only knew how they were getting less and less service from their public system.  The insurance companies are complicit in this as well.  As soon as the gov’t changes rules the insurance companies follow suit.  So if you thought you could get coverage through private insurance when the government stiffs you; you would be sadly mistaken.  The patient and the taxpayer get the short end of the stick…again.

Drug coverage isn’t the only issue.  It is the tip of the iceberg.  As I have shared many times we see great disparity between adult and pediatric cardiology.  Peds Cardiology is unique in Manitoba.  When our MB patients are sent out of province for surgery, the province picks up the tab for airfare and lodging.  This is a huge benefit.  In the adult program you get no such benefit.  No expenses are paid for.  Actually this is ageism and discriminatory....but i digress.

In 2009, when Susan had her surgery in Edmonton I had to pay my own expenses to go with her.  Fortunately, I was able to find an obscure clause in our benefits package and was able to get most of my expenses covered.  That was a huge find; but I bet most people have no idea what is in their benefit plans.  I certainly wasn’t aware of this provision until I looked, and I was the HR Manager.  

What is even more bizarre is that as we prepare for another trip to Edmonton for surgery we have now been turned down by both our insurance companies related to our non-medical expenses.  Keep in mind I am with a different employer and therefore a different benefit plan.  Yes…benefit packages can vary significantly.

Health Care is NOT Free!

Being sick is a very expensive business.  If you think health care in Canada is universal you are sadly mistaken.  There are so many rules and exceptions to rules that it is truly dizzying.  Many Canadians are under the illusion that they don't need to worry about health care costs they either don’t carry extended health insurance coverage or have no idea what their plans include and exclude.  If you are unfortunate enough to have a serious illness the expenses that are not covered by medicare can still devastate you financially.  This is why we are seeing more and more GoFund Me pages for people who need to raise money to support themselves as they face some of these very daunting and very real costs.

I am also exceedingly frustrated that I see so many inconsistencies in the system.  One program is funded and another one is not.  One type of cost is covered and another is not.  If someone would just explain the rules and not change them; I could prepare and be ready for life’s emergencies.  What we are faced with seems like anarchy.  It is amazing that 8 years later we are still encounter new issues to deal with.

There is another issue that is worth mentioning.  Imagine trying to do all this navigating through insurance companies and gov't programs while being sick or alone.  Another really important reason why patients need advocates and caregivers to help with all of the bureaucracy.  It is essential to have the emotional and technical support.  In my opinion this kind of support is not optional.

The Future of Nursing

This week I got to do one of the most gratifying things I do as a patient advocate.  I got to speak to a group of nursing students and share our experiences in health care.  For someone who wants changes in health care this is the place you have to go.  The schools where they are taught to be nurses.

Many times I will say that we are more than just a patient story.  Many patients and caregivers have some very clear ideas on the state of health care and what should be done at a policy level.  This is not that kind of discussion.  These classes are about learning from experience.  The patient experience.  We just relax and share our story.  It is about being a human being.  No hidden agendas.  No preconceived ideas.

The class we attend is part of the 2^nd year nursing program at Red River College.  Several other volunteers participate in story-telling and a panel discussion.  We have done this for several years now.  It is not an easy thing to do but it is well worth it.

For the students this is an opportunity to hear real-life examples of how they (as nurses) may impact or play a role in someone’s patient journey.  For us, as caregivers, it is an opportunity to share our experiences in health care and try to explain to these aspiring nurses what it’s like to be on the other end of the health care system.  It’s also good therapy.

The best part for me, in these sessions, are the questions the nursing students ask.  Their genuine concern and compassion for patients.  I have no idea what kind of nurses these students will become but I am confident that at one point in time their intentions to enter the nursing profession were noble and genuine.  The feedback we receive is very affirming of the future of nursing.

One of the difficulties I struggle with is what happens to these students once they graduate.  They enter the health care profession that is far from perfect.  They will be exposed to many of the failings of our health care system.  There is no doubt that the zeal they once showed in nursing school will be tempered by the harsh realities of the nursing profession.  Some will become complacent in their approach to nursing and caring for their patients.  I know that is a very pessimistic view but it is a real possibility.

It was pointed out to me that last week; on every day there was a news story in the local Winnipeg media that discussed a failure, in our health care system, to provide adequate care and compassion at a time when a patient needed it most.  These are failures of no one person but several people involved from various disciplines.  For me it is difficult to rationalize seeing very genuine and caring nursing students, like I spoke to earlier this week, eventually being in a position where they too could choose to ignore the needs of a patient.  This is the reason those of us who share our experiences volunteer our time and our emotions.

The patient experience is profoundly powerful not only on an emotional level but as a teaching tool.  I have shared and heard many patient stories.    I enjoy hearing how others approach being an advocate for a loved one. I always walk away having learned something.  This is also why I enjoy sharing our stories at Red River.  I get to meet and share with other caregivers who share their own experiences.  Such a unique and knowledgeable group. 

I know the nursing profession is an extremely challenging field.  It is difficult going to work day after day with the same level of commitment that you had as an idealistic student.  I am sure there are times when nurses question their choice of careers.  I certainly don’t want to minimize the many issues facing nurses but when you sit in one of these classes and hear, first-hand experiences, from patients and caregivers; the effect is profound.  I wish more nurses, the veterans of 15 and 20 years could hear more of these experiences.  It may just make another day of the “same old” seem a little more relevant.  Thanks nurses for all you do.

Our Cardiac Journey: The Next Chapter

For those of you who don’t already know.

Over the past several months Susan’s cardiac function has degraded to such an extent that her Doctors are recommending open heart surgery.  We don’t have a surgery date yet as we are completing some paperwork and assessments.  Susan also needed to take a leave of absence from work.

The plan as it stands right now is to perform a septal myectomy to remove obstruction in her left ventricle.  This is similar to the surgery that was done in 2009.  The new wrinkle is that they may also consider a repair or replacement of the mitral valve.

Nothing about this is minor or routine.  This is major open heart surgery.

Our challenge right now is figuring out how we manage our family as we have to travel out of province once again for medical treatment.  The logistics of this are complicated as we try to manage Susan’s care and still try to be parents.  Our intention is to have Russell and Nicole join us in Edmonton at some point.  This will be significant for Russell as this will be his first trip back to the Stollery since his transplant.

No doubt there will be more to follow….

Post-Election Hangover

Regardless of your political affiliation Election Day is a celebration of democracy.  The peaceful change of power is something to celebrate and treasure.  Yes…my team won on Tuesday night, but we didn't fair so well last October.  That is the way things go in politics.

Nicole with our newly elected
MLA for Selkirk Dr Alan Lagimodiere

In my previous post, I discussed why this election mattered to me.  As a result, I've been actively involved in our local campaign in Selkirk.  The experience has been thoroughly gratifying.  It was a great opportunity to meet and work with members of our community. It was also a lot of fun to be joined by my daughter, Nicole, who joined me on several Saturdays as we went out door knocking in the various neighbourhoods.  I think we both learned a lot and had a lot of fun.

I recall some of the first meetings I attended as part of the constituency association and discussing the upcoming campaign.  There wasn't a lot of exuberance as this constituency has never yielded to the blue team.  We knew this would be an uphill climb.  We had to reverse a 1200 vote deficit from the 2011 election.  As we got out into the community we were consistently receiving a warm reception almost everywhere we went.  The mood was certainly one of change.

We not only had the uphill climb of getting elected, we knew we would also have daunting challenges if we were fortunate enough to form government.  After all, this cannot be about just winning an election.  The reason you do this is because you believe in something and want to make positive changes.  For me this was an election about health care.  Many others on our team had other concerns.  Education, infrastructure and taxes were frequently discussed but for me health care will always strike close to home.  I recall a meeting I was fortunate enough to have with our PC Health Critic, Myrna Driedger, in the Fall of 2014.  She showed me a stack of files on her desk.  Letters she had received from Manitobans who had concerns about health care.  I assume most were negative experiences.  It was a deep file.  I asked her some pointed questions.  We had a good discussion but what struck me was her body language.  The only way I could describe it is a “stubborn but compassionate resolve.”  I got the distinct impression there isn't a lot of “quit” in her.  You don’t sit in opposition for 16 years without a great deal of stick-to-itiveness.  I am assuming she will be taking on the Health portfolio and she has a monumental task in front of her.  I wish her every success.

As I was monitoring the ballot count on Tuesday night it became apparently clear this was actually going to happen.  Yes, you read the polls and your head says you have a real good shot but when you actually see the ballots come in, the smile starts and you realize…we got this...and we did...in a big way.

I probably should be a lot happier but I am not celebrating today.  All of the work we spent on the campaign will be a total waste of time if we can’t get things done.  For me it is all about health care.  A hill many other politicians have fallen on.  We have to do better and we have to get it right.  People’s lives are at stake.  This became abundantly clear as I was still in the polling station, on Tuesday night, when my wife, Susan, sent me a text.  Her Mom was in the ER at St Boniface Hospital.  An apparent gall bladder issue.  That will shock you into reality in a real quick hurry.  A vivid reminder that the issues we have in health care never go away.

Because my team won on Tuesday; are all of our troubles gone and is there nothing but smooth sailing?  Far from it.  The work is just beginning.  Yes the tasks seem insurmountable but I recall what everyone was saying two years ago, most said the PCs would never take Selkirk.  Having worked with this team and some of the other teams in the province I can assure you; you haven’t seen nothing yet.  We’re just getting warmed up.  

Things That Matter - Election Day

My blog, for the most part, is autobiographical.  It is simply about our life as a family.  At times it seems more like a reality show, but I guess that is just the way we roll.   As I have learned to be an advocate for my family members I have encountered many barriers in our health care system.  When I share our story I hope to be able to provide some context and some “real-life” examples of what is going on in health care from the patient/caregiver perspective.

The first thing you realize when you start messing around in the inner workings of health care is that health care is political.  It is a political tool in which governments (especially provincial gov’ts) wield a tremendous amount of power.  This is why over the past few weeks several of my blog posts have taken on a decidedly political tone.

I have met a lot of amazing people during these past 2 years as I have become increasingly involved in the political process.  Some wonder where it all started.  It all started in March of 2014.  You have one person to thank for my political musings and that is our former Health Minister Erin Selby.  Her despicable comments about the Pediatric Cardiology Inquest sparked a media firestorm.  It also inspired an angry email (from me) to the Winnipeg Sun.

http://blogs.canoe.com/raisinghell/politics/selby-should-read-this-letter/

My Progressive Conservative Party membership was purchase the same week.  Ms Selby is someone who truly represents what is wrong in politics.  I was reminded of Ms Selby’s “Dead Baby” comments this past Saturday when our Premier repeated this vile approach to politics and stated, if elected, the PCs would take away cancer drugs.  I don’t know who thought of this morally de-void comment but they should be fired. If it was Mr Selinger himself, the people of Manitoba will have their say tomorrow.

The comments by Ms Selby were personal.  It was an attack on families who were wronged by the health care system.  It was an attack on the very people who care for my son. I can well imagine the outrage that people who depend on very expensive cancer treatments felt about the Premier’s comments.  I would have hoped the NDP had learned their lesson.  Apparently not.

There is an old saying that is often associated with Winnipeg’s North End and is a socialist mantra.  “People before Profit.” This is a saying the NDP have gravitated to when distinguishing itself as a champion of the poor and the working class.  It is a noble sentiment, however after 17 years of power the Manitoba NDP has forgotten about its working class roots and has opted for “Politics over People”

Tomorrow is Election Day.  A celebration of democracy.  If we elect a PC government; will all of the problems of health care be solved?  Not at all.  After 17 years in the political wilderness my hope is that a new government will have a mandate to initiate change and finally put the priorities of patients over politics.  Time will tell. 

This election matters to me because I have been on the front lines of people suffering.  ER wait times are not a statistic to me.  I’ve lived them.  A shortage of services is just not a catch phrase to me; it is a part of our everyday life.  Everything that I have ever written about that relates to health care has been impacted by the politics of health care.  

I’m hoping to be celebrating tomorrow night but part of me is somewhat depressed.  An election win does not solve anything.  On April 20^th there will still be people suffering from dementia.  Someone will go to CancerCare and get a diagnosis that will change their life.  A new baby will be born with autism.  Someone will die waiting for an organ donation.  That is the world I live in.  On April 20^th we have to start doing more for these people.  Those are the things that matter.

Health Care Ombudsman; Good Idea?

Today in an act of political opportunism, Manitoba Premier Greg Selinger announced that if re-elected their government would introduce an office of the patient advocate...or a health care ombudsman.  A stand alone body that would report to the Provincial Ombudsman.

This was the typical politically expedient response to a tragedy that took place in a Winnipeg ER. Something that happened months ago but is only being addressed now because it became an inconvenient news story.  A tragedy that would never have been prevented by a health care ombudsman.

A health care ombudsman is something i've done a lot of thinking about.  I've also asked several physicians what they think about the idea.  The responses have been interesting.  Most physicians I talk to expressed that they would rather prevent harm, to patients, than have an office that only steps in after the fact.  It seems more reactive than proactive.

I do think the idea does has some merit.  Having a body that operates at arm's length of the health authorities, and the government they report to, is not a terrible idea. The issue is how the office is setup and what authority it would have.  I am very skeptical that this office would have the authority it would need to be effective.  Following the Phoenix Sinclair Inquiry Justice Ted Hughes recommended increased powers for the office of the Children's Advocate.  This issue has been studied to death by the current NDP government and nothing has come from it.  On this issue and many other issues this NDP government has suffered from paralysis by analysis.  I have a hard time believing this NDP government is capable (or even genuine) about its intent to create an effective Health Care Ombudsman.

Although I believe a health care advocate may be a good idea I don't believe it to be a priority.  Many issues in health care are well known.  Lack of patient and personal care home beds are an obvious issue.  Doctor shortages are another issue that is causing havoc in rural ERs.  There are hundreds of vacant nursing positions.  Everyone knows the issues.  It isn't difficult.

When it comes to listening to patients concerns, these issues are also well known.  The vast majority of complaints that come from patients and patient families surround communication issues.  As one physician told me..."we're just not patient centred."

Some may argue that a health care ombudsman could facilitate better communication with families and provide improved and more timely responses to family concerns.  That could be true, but it would only take place after the relationship between patient and the health care system have already been irreparably harmed.  Shouldn't we be trying to improve communication and solve issues before having to bring in a third party.

The current NDP government has touted the success of their Critical Incident Reporting legislation.  Is the promise to create an new office to investigate critical incidents an admission that the CI reporting process is broken?  Are we now just layering another half baked bureaucratic investigative body on top of an existing dysfunctional system.

It is interesting that the Premier chose to call this the office of the "Patient Advocate"  I am a patient advocate.  Not a pencil pushing bureaucrat.  I know a little more about this than he does.  I have absolutely fabulous members of the health care system who effectively advocate on our behalf when we have issues in the health care system.  We have an effective relationship.  It's time to start building productive relationships with patients in health care. We are equal partners.  We have a mutually beneficial relationship.  That is not true for most.  The way many patients are treated in health care it seems like they are in an abusive relationship.

If you sense a great deal of frustration in this blog post; that would be accurate.  We need to start taking action on health care issues and stop creating bureaucratic empires.  It just seems that we have become totally infatuated with trying to hide the failings of our health care system and forgot about dealing with real life patients.  There are people in our hospitals in Winnipeg right now.  Treat them!

My honest opinion is that creating a health care ombudsman simply sounds like an attempt to avoid dealing with the real problems in health care.

Supporting the Supporters - Recognizing Caregivers

When Susan went through Cardiac Rehab several years ago, there was one session set aside for supporters (or caregivers) of the patients who were enrolled in the Cardiac Rehab program.  The class was called "Supporting the Supporters.This was a stand-alone session and the actual patients were not allowed.  It was a one hour session and there were around 30 people in the session.  It became very apparent that 60 minutes was not nearly enough time.  There were lots of experiences (and emotions) shared.  The amount of stories in that room could have easily filled a very lengthy book.  A book we could likely learn many life lessons from.

There are so many people we have met in our health care journey who have been mentors, and who have been so generous with us to share their own experiences.  I recall many conversations with families when we were in hospital with Russell.  When you are in hospital for many weeks and months you see the same people every day and exchange “hellos” as you meet these people in the hallway as they come and go and carry on their business.  I find it humourous that many of these people who we got to know, I only know by their first name.  We shared some very powerful memories but yet we have no idea where they came from or what they did on a day to day basis.

Over time you develop a dark sense of humour.  I suspect that is a common coping mechanism.  You have to do something to cope with the situation.  I remember one occasion when we were turfed out of the PICU in Edmonton.  There was “something” going on in the PICU and all of the families were asked to leave.  These situations were not uncommon and usually meant something “serious” was going on.  You might see one family in the common area outside the unit and given their body language you know it was their “turn”.  I say the word “turn” as that is the way it seemed.  Everyone who was in there for any length of time had their “close calls.”  It is just that kind of place.  After all these were 18 of the sickest kids in Western Canada.

On another occasion when the PICU was closed several of us gathered outside of the unit.  It was after lunch and everyone was coming back after grabbing a bite to eat.  We assumed that after lunch the PICU may be open.  In this occasion it was not.  A few of us began talking.  The first topic is speculating why the PICU was closed in the first place.  Not a happy discussion.  Then the conversation progressed a little further.  So….what are you in for?  It seemed a little like inmates discussing why they had been sent to prison.  The conversation just gets stranger from there.  One Mom described her son’s illness and without thinking twice she casually mentioned…”Oh…did you hear that “Code” they called on 4C last week…well that was us.”  That was just considered normal.

There were many families who would have very short stays in PICU and we were happy for them.  Many of them were there for surgery.  Their child would be admitted in the morning and then arrive in the PICU in the afternoon.  After a few short hours of recovery these kids would be whisked away to the ward and would be discharged in a few days.  For the rest of us we wouldn’t be that lucky.  We were there for the long haul.  Several of the families we got to know were never lucky enough to take their children home.  I think back at some of those occasions when we saw families who gathered in one of the meeting rooms and received “the news.”  The care team would muster up every bit of sensitivity they could think of and explain “that there was nothing more they could do.”  It is likely that many of these parents knew “the news” was coming but that provides very little comfort when you are faced with the grim reality that your child would never come home.

The first Tuesday of April is Caregiver Recognition Day.  It is on this day that I think of these parents, who were forced to say goodbye to their children at far too young an age.  Somehow we were spared that fate.  The families we spent those weeks with will be forever in our thoughts and prayers as we care for our children.  I learnt so many lessons from them.  How to laugh in some of the darkest moments and to simply put one foot in front of the other day after day.  This is where I learnt to be thankful.

Years later we may meet a family who have gone through similar experiences as us and I am amazed how there is that instant connection.  An understanding of what it is like to be on the brink.  The language, the terminology, is all the same. Much of the communication is unspoken with knowing looks and the knowledge that "I get it."  I think that is the challenge for many caregivers is to adequately express their experience and what it means to them.  For those who have been there; no words are necessary.  We all know that we have to process these experiences in our own way.

I'm very proud to call some of these people my friends and peers.  The people who shared their journey with us.  I have great respect for everyone of these caregivers who blazed a path that we could follow.

Thanks