Saturday, June 17, 2017

The Art of Complaining - Part 4: Going Rogue

Creative Complaining

We've all been there.  Frustrated, angry, and feeling like no one is listening.  You've tried talking to your Doctor or Nurse.  You've gone to the patient relations office and bared your soul to a very well meaning patient relations officer.  All you have received is the well rehearsed political response.  In your mind, your issues have not been addressed.  This feeling is all too common for those who have tried to deal with an issue in health care.  Health Care, in all its complexities, is extremely resistant to change and has become very adept at running patients in circles until they finally give up.  This is shockingly common.  We just give up.  I've done it and I'm know many others have as well.  In many ways we have come to the conclusion that it just isn't worth the emotional and physical toll it takes to keep fighting...but what do you do when you say to yourself..."No...I'm not giving up!" ... "No...what happened to me was unacceptable and there is no way I will ever let this happen to anyone else."  Are you prepared to do what it really takes to "Go Rogue?"



Warning:

To "rebel" against the health care establishment is a high risk proposition.  I am going to share some of the things I have done to challenge the status quo.  Some worked...some didn't...and some blew up in my face.  What I am about to share I do not recommend as I feel deviating from the formal processes of interacting with the health care system is potentially dangerous.  Before you do anything you definitely have to evaluate the risk versus reward.  Is it really worth it?  If you "pick a fight" are willing to see it through to the end?  Be very careful what you ask for...you might get it.

What do I mean by going rogue?  What I mean is that after exhausting all of the conventional ways of getting your message heard; you have been shut down.  As a result, you decide to go the non-conventional route. You go outside the conventional reporting structure and circumvent the system.

To give you some examples of things I've done:
  • Written Letters to Health Care Directors, Chief Medical Officers, and CEOs
  • Written Letters to my MLA, Provincial Minister of Health, and Health Critic
  • Writing this Blog
  • Written Op-Eds
  • Contacted the Media.
  • Used Social Media to raise my concerns
  • Conducted my own Incident Investigations
  • Become Politically Active
When it comes to creative complaining, I have tried a lot of different approaches but certainly not all.  I am sure others could come up with some creative ideas.  The one thing about every tactic I have tried is that there is never any guarantee how the approach will be received.  The reaction could go one of three ways.  It could be well received, negatively received, or ignored all together.  You have to be prepared for all three.

When trying to get my voice heard I have tried to tailor my approach to best utilize my skill set.  Many of the things I have done involve writing.  I like this approach as it gives me time to think and work through what I want to say.  Before I send anything, I can show other people what I have written and get some constructive criticism, ensuring the appropriate message is coming across.  Is the tone correct?  Do I come across as a "wingnut?"  Am I too negative...or too positive?  Writing something down gives me a great opportunity to take my time and not say something rash in the heat of the moment.  Writing also allows me to vent.  Many things I have written have never been sent to anyone.  In some cases, all I needed to do was express my feelings and writing is a great outlet for me.

There are many other approaches you can take, you have to figure out what works for you.

Circumventing the Chain of Command

Yes...I've done it.  I've skipped all of the processes and gone right to the head of the organization.  I'll share one experience.  In January of 2012, Susan had a car accident.  She was taken by ambulance to Seven Oaks General Hospital (SOGH).  We had a nightmarish experience in the SOGH Emergency Room.  In the end Susan required surgery to repair her "mashed" foot.  Our experience there left us speechless, frustrated, and angry.  As is usually the case, it wasn't an issue of any one person.  It was a series of events...a comedy of errors; except Susan and I were not laughing.  I waited about two weeks to let myself cool off and then I drafted an email which I sent to the Chief Medical Officer and the Chief Operating Officer.  A day or so later I received a very respectful and well thought out response from the CMO, Dr Ricardo Lobato de Faria.  He demonstrated a thorough knowledge of Susan's chart, and confirmed many of my assumptions.  What impressed me most was how he acknowledged the problems without throwing his staff under the bus.  In fact, he defended his staff and hospital without minimizing my concerns.  Taking my complaint seriously, he forwarded a copy of my email to their senior staff and to the staff in the Emergency Department.  In my mind, that was a win....but it wasn't over.

A couple of months later I was contacted by the Quality Manager at SOGH and  was invited to a workshop to provide patient perspective on their ER processes.  This was part of an overall improvement project.  I participated in this project and subsequently I was invited to take on a role on the Board of Trustees of the hospital.  An opportunity that has enabled me to share the patient perspective at the Board level.  This all stemmed from one email.

This all sounds like a great thing but in my time on the Board I witnessed another patient do the exact same thing that I did.  Write a letter to the executive and the board.  This letter was not received well and was dismissed in its entirety.  That was very disappointing to me.  This is the risk you take when you deviate from proper protocol.   You have to be prepared for either outcome.


MEDIA

Going to the media is a risky proposition.  If you contact a reporter they will be very happy to talk to you and listen to your story.  However, if you go this route you lose control over the message.  The reporter can put their own spin on the message or take the issue into a completely different direction than what you may have intended.  You can also get caught in the news cycle.  If there is an important breaking story your concern may get dropped all together if other stories seem more pressing.  This is why when I originally started sharing my opinion publicly I wrote my own narrative and submitted it to a local paper as an op-ed.  Then I was the one who controlled the story.  Some of the content I have submitted has been printed; and some has not.  That is the nature of the game.

One of the Op-Eds I wrote for the Winnipeg Free Press.
Feb 22, 2016 

I have also received some unexpected reactions.  When I started being more public about my opinions and found myself writing op-eds and being quoted in news articles I experienced something unexpected.   Little did I know, I opened myself up to the dreaded "Comments Section".  One Op-Ed I wrote prompted a comment stating that "I" was the problem with health care.  Another anonymous troll commented on a piece I had written about adoption and accused me of being complicit in "human trafficking."  Yes...you have to take the good with the bad.

POLITICIANS

Twitter Exchange between myself and the Minster of
Health for Manitoba, Sharon Blady
Whether you take your case to a Health Care executive, or the media, or other public forum you have to keep in mind people's motivation.  They need a reason to listen to you.  Politicians, on the other hand, are a different type of people to try to access.  You have to understand what motivates them.  Some take issues very seriously and are truly looking out for their constituents.  They also need to be elected.  The primary motivator for any politician once elected is to get re-elected.  Something always to keep in mind when trying to solicit support from a politician.  Politicians like to use patients for political purposes.

Health Care policy in this country does not come from researchers or hospital administrators.  It comes from politicians.  Too often health care policy is ideologically driven.  The advantage that patients have when trying to get support from a politician is that most politicians know squat about health care.  Unfortunately, they run health care.

I have had an absolute blast tweaking politicians (on social media) about health care because, without their staffers to advise them, I have the advantage.  I have interacted with many politicians on social media.  Several follow me.  Yes...it has put me in some odd predicaments.  I once invited the Minister of Health, Sharon Blady, to take a tour of our Cardiology Clinic.  Much to my amazement...she accepted and asked me to contact her office to setup the details.  The only problem is that I extended this invitation without asking anyone at the hospital for permission to do so.  After the exchange on social media...I very quickly and sheepishly emailed our Section Head of Peds Cardiology to ask if this was OK??  I think she must have thought I was nuts (which I am).  She seized the opportunity and enthusiastically accepted the offer.  She's smart...anytime someone who holds the purse strings wants to stop by for a visit...you accept...and you get out the whole grocery list of things you need funding for.  Unfortunately, I was never able to meet the Minister, but the MoH did come to the clinic in an informal capacity.  Our cardiologist did get a chance to give her a tour.

This isn't the only time I've put myself in hot water with politicians.  I have taken up the habit of live tweeting some of our health care experiences.  Some people follow our story fairly closely and this is a good way for people to stay current with what is going on with us.  The interesting twist is that if you do this live...you have no idea what your experience will entail.  It could be a great experience or a train wreck.  I live tweeted one of our ER experiences which turned out to be a train wreck.  One of my followers on Twitter was the Health Critic, at the time, Myrna Driedger.  She was horrified by what I was describing in my twitter feed.  She contacted me and invited me to the legislature to sit in the gallery while she raised our concerns during Question Period.  That was different to say the least.  Got to experience my first media scrum.  One of the Legislative Assistants for the Minister located me in the gallery in about 5 mins and was already offering to assist in any way they could.  This is where things got really fun.
Someone should have told me that if you want to be a hot shot media type
...perhaps you should smile!!!

I met with the Legislative assistant later that day and gave her a little more information.  At this point I had some time to think about what I wanted and what I wanted to achieve.  The Minister's office offered to conduct an investigation into our ER visit.  I gratefully declined.  At this time I was a family rep on the Child Health Quality Committee at Children's Hospital.  All of the people I would need to conduct my own investigation sat at that table.  I decided to conduct my own investigation, with the weight of the Minster of Health backing me (or that is what I implied.)  I contacted the chair of the Quality Committee and booked time on the agenda to discuss our case.  Wow...did I freak some people out.  When I presented at our meeting...i got the look of death and quite literally i got the "Who the ---- do you think you are?"  attitude.  Thankfully with a lot of support of some of the staff I got some great input and we actually solved a policy issue that contributed to our negative experience in the Emergency Room.  What happened to us will not happen again.  This was a huge win...and was so much fun to do.  I forwarded a copy of my investigation to the office of the Minster of Health and was proud to do so.  Patients and families are a force to be reckoned with and I was proud to contribute to finding solutions.

LESSONS LEARNED

I must admit I've had some very interesting experiences being a patient advocate.  My experiences have left me with a very positive outlook.  Yes...there are problems in Health Care, but there are so many amazing people and patients who are involved and want to make things better.  That is very hopeful to me.  I've done some strange things to get our message out and its taken a long long time to make any progress.

Many have asked me, how on earth does an "average Joe" like me get invited to meet with executives and high ranking health care officials?  The key word here is patience.  I did not attend my first patient advisory meeting expecting to take on the world.  I sat...I listened...I tried to ask thoughtful questions...and I learned.  I learned how health care systems work.  In my many hours of volunteering I have built relationships with many people in a vast variety of roles in health care.  Many of these people I would now call friends.  I was respectful and I tried very hard to not let my ego get the better of me.  My wife Susan, also played an important role.  She supported me even when I didn't have time for some of these activities.  She asked me questions like...why are you doing this?...what did I hope to accomplish?  She forced me to focus on things that were important and forget about the insignificant details.

Many of the opportunities I have been given did not come about by accident.  I first had to build a relationship with many people in health care and get their respect.  Once I achieved that, I was able to have very open and honest discussions.  They realized i wanted to help...and I still do.  The down side is that I know that in my experiences I have rubbed some people the wrong way.  There are some circles in health care that are less then welcoming to me.  Another harsh reality of "going rogue."

Patients, Families, and Caregivers have a tremendous amount to contribute to Health Care.  However, all of us need to learn how to make our voices heard.  It is vital that patients raise issues, and when necessary,...complain.  Perhaps some of the suggestions I have made you don't agree with or you have other ideas how to make your concerns heard.  More power to you...go for it!  Nothing will change if we sit silently and accept the status quo.




Saturday, June 10, 2017

The Art of Complaining - Part 3: Formal Complaints

In my previous post I discussed informal ways you, as a patient or caregiver, you can raise issues or concerns without going through the formal complaint process.  When given an option this is always the fastest and least painful way to address a concern.  However, all too often the patient and the medical team come to a point where they don’t agree or an adverse event has occurred that requires going through the formal complaint process.
I am not a pessimistic supporter of the formal complaint process.  Too often the process is time consuming, bureaucratic, and marginalizes the patient point of view.  However, these processes are necessary to investigate complex situations and generate evidence based recommendations with the goal of improving the system.

The Formal Process of Health Care Complaints

To repeat, it is important to try to resolve concerns directly with your front line health care providers.  If there is an adverse event or other concern the front line staff have some tools available to document and rectify the concern.  That is always the place you start.  There is a way to escalate concerns but you have to start with your bedside nurse, charge nurse, attending physician, or unit manager.  If you cannot come to a satisfactory outcome it is reasonable to contact “Patient Relations” or whichever formal organization is tasked with addressing patient complaints/concerns.  

Photo Courtesy: www.notstandingstillsdisease.com


When a Patient Relations officer receives a complaint they have to assess the nature of the complaint.  The reason for this is that the types of complaint can span a wide variety of issues and severity.  Each type of complaint may have its own process to follow to rectify the situation.  In some severe cases their may be legislated processes to follow.  The types of complaints can vary greatly.  They can range from a complaint about the cafeteria food, parking concerns, and all the way to a medical error causing death.  All of this “triaging” of complaints can be time consuming.  If a complaint is medically related and of a serious nature the complaints can be categorized as “occurrences” or “critical incidents.”  These are very important legal terms that require specific response laid out in “Critical Incident Legislation” that most provinces now have.  The following is an excerpt from the Manitoba Health website that defines what a Critical Incident is:

Manitoba’s legislation defines a critical incident as 
“an unintended event that occurs when health services are provided to an individual and results in a consequence to him or her that is serious and undesired.” This can include death, injury and disability, and “does not result from the individual’s underlying health condition or from a risk inherent in providing the health services.”  -source Manitoba Health

That being said just because you, as the patient, thinks a complaint meets the criteria of a critical incident, that doesn't mean it will be categorized as one.  There is a committee or investigative team that makes this determination (patients not included.)  The reason the system is very careful about what they define as a "critical incident" is because there are legislated requirements and a prescribed process to follow. The health system is required to follow these processes and perform them in a prescribed timeline.  That means it is time consuming and expensive.  Unfortunately, input from the patient or caregiver is limited as the focus of any investigation does not consider the motivation or purpose of the patient who may have raised the concern in the first place.  The only purpose of a critical incident investigation is for the purposes of learning and system improvement but NOT to address the concerns of the patient.  It is hoped that those goals would be mutually beneficial but that certainly is not always the case.

Here is another excerpt from the Manitoba Health website:  

(Critical Incident Reporting is a) mandatory no-blame critical incident reporting across the health system to support a culture of learning and openness. Critical incidents are not reported to lay blame on individuals. The purpose of reporting is to look at what can be done differently and what improvements can be made to the way health care providers work.   - source Manitoba Health

This is why the formal processes of filing a complaint can be so frustrating from a patient perspective.  These processes and investigations take a long time to complete.  The actual input or involvement by the patient is relatively limited and if the patient has specific questions that they want answered they may (or may not) get these concerns addressed depending on the way the investigation proceeds.  It is also worth noting that Critical Incidents can be initiated by anyone in the health care system.  Any investigation can be initiated without the patient even being aware it is going on.  I have first-hand experience with this.  The whole purpose of this process is to look at “system” issues NOT “patient” issues.  

Many patients enter into the process with the idea that “Finally, I will get some answers” but end up very disappointed when their specific concerns are not addressed.  The other issue that inevitably frustrates patients is the time consuming nature of these investigations.  To do a proper investigation and to engage all of the different stakeholders who may be involved is a time consuming proposition.  Health care is complicated, and trying to investigate an adverse event within health care is even more complicated.  From a patient point of view, the waiting is frustrating.  Not being aware of all of the inner workings of the investigation is even more frustrating.  This process was never setup with the patient in mind.

The Power Imbalance

A significant concern and a likely reason that many patients do not complain is that they may be in a situation where they need their health care team for ongoing care.  If they do all of the right things and talk to all of their providers and still cannot get their issue resolved, their next step may be to escalate their complaint and file a formal complaint.  I feel that for many patients this is one step further than many are willing to go.  This has been the case for me on a couple of occasions.  Patients worry that if they file a formal complaint that they will be treated negatively or be isolated by their health care team.  Patients live in fear of being labelled as “difficult” or “non-compliant.”  

For patients with complex health issues there may be only one specialist or clinic in their community that deals with "their" specific health condition.  If you alienate that team you risk losing any support you have.  You don’t have any option of going to another Doctor or clinic.  The potential of being isolated, trapped, and alone is a frightening prospect.  In addition to living with a complex medical condition you are now faced with the stress and anxiety of being forced to work with a medical team where there could be a palpable level of mistrust or animosity.  

Solutions

There are ways that the formal processes do help patients and I certainly want to stress the importance of these processes.  The formal processes are also necessary as they do provide helpful feedback that can result in system change.  

Patient Relations

If you go to patient relations and talk to a patient relations officer they can represent a conduit for you to address your concerns.  This can happen in a couple of different ways.  The officer can play an intermediary role between the patient and the health care provider.  Many times a skilled patient relations officer can identify where communication broke down and bring all the parties together and re-establish the lines of communication.  Patient relations can also help the patient better communicate their concerns in a way that may be non-threatening or frame their concern in a more effective way.  (Be able to translate from medical speak to patient speak and vice versa.)


Patient Relations can also present opportunities to the patient that they may not have thought of.  Many patient advocates, that I know, started out being advocates by going to the patient relations office and making a complaint.  Through this process the patient was asked to participate in a patient advisory group or similar organization.  This afforded the patient an opportunity where the patient can share their experiences and attempt to make changes through a patient committee.  In some cases this is all patients want...an opportunity to share their story and be heard.

Some health care organizations are also initiating “peer support" programs.  A patient may be put in contact with a patient “peer” who may have specific training in peer support and has the benefit of having their own health care experiences.  Patients have an inherent credibility among other patients.  It gives the patient a different perspective and resource to draw upon for support.  Many times peer support can provide a patient a peer who may have been in a similar situation or had a similar negative experience.  Shared experience can be a powerful tool.  I am a huge fan of peer support and continually advocate for health care organizations to expand these kinds of programs.  Patients can be a great support to other patients.  

The patient relations office can be a great resource for the patient but the inherent risk is that ultimately the patient relations office is a function of and accountable to the health care system.  The perception (and in some cases the reality) is that patient relations ultimately represent the hospital and this message can come through loud and clear to the patient.  This is something that all patients should be aware of when they make the decision to take a concern to patient relations.  When all is said and done, the patient relations office is working for hospital administration and not the patient. 

The Patient Ombudsman

Ontario has initiated a new avenue for patients to file a formal complaint.  In recent years they have established the office of the Patient Ombudsman.  I think many in health care are watching this development closely to see if this concept brings improvements to the complaint process.  This process is by all evidence is still a lengthy and bureaucratic process but the fundamental change is that the ombudsman’s focus is to address the concerns of patients.  The purpose is to address patient concerns and communicate with the patient on an ongoing basis to ensure the patient is apprised and involved in any of the steps in the process.  The big question is ...will recommendations by the Patient Ombudsman have any real effect?  Does the office of the Patient Ombudsman have any real "teeth."?

The Bottom Line

My perspective on this topic is rather unique.  I have experienced this process from the patient perspective, have talked to many patients about their experiences, and in an interesting turn of events I have reviewed patient complaints in my role as a hospital board member.  So I have seen both sides of the process.

My overall impression of the formal complaint process is that I recommend that patients and their families use the processes that are provided, but the reality is that many go through the process and are left disappointed by the experience.  We have to be realistic about our expectations, but that is not an excuse not to try.  Like everything in health care, you truly have to understand how the process works in order to maximize your benefit.

I believe there are many improvements that can be made in these processes and I have seen some isolated cases where some very encouraging improvements are happening.  From what I have seen, and I know I sound like a broken record here, most complaints have their root cause in some kind of communication breakdown.  Reading a critical incident review is an exercise in futility.  When reading these reports you can take a highlighter and identify dozens of opportunities where with some improved communication a serious incident could have been prevented if people were just talking to each other.  There needs to be a fundamental shift in how we communicate in health care to be more inclusive of patients and to break down the dreaded “silos” that exist within the system.  Communication is not just a  "patient-provider" issue it is also a "provider to provider" issue.  Aside from financial constraints, I believe, improved communication represents the largest opportunity for improvements in health care delivery.  The patient complaint process is just one component that would benefit significantly.

Next Post in my series on Complaining:
Part 4: Creative Complaining: Going Rogue


Saturday, June 3, 2017

The Art of Complaining - Part 2 - Informal Complaints

What is a complaint?  Complaint sounds like a negative word.  In the context of this blog I don’t think of a complaint as a negative.  The reason I complain about issues in health care is to create dialogue with health care providers.  As a patient advocate I want to raise expectations.  Do we not deserve the best care available?  Is the purpose of health care to be “average” or is the purpose to be “excellent”?  The quickest and easiest way to understand areas where we need to improve is by listening to the complaints of patients.



When I talk about complaints many immediately think of the formal processes involved in doing so.  Contacting patient relations and filing a formal complaint.  The problem with this is that when you get to that point you have probably missed several opportunities to reach a positive outcome.  If you are at the point of going through the formal complaints process, then it is likely that communication with your care team has degraded significantly or harm has already been done.  The whole point of this exercise should be prevention.  This is why informal complaints are the best tool a patient has of enhancing their care right here and right now.  Not 8 months from now.  It is also important to raise issues effectively while maintaining a good relationship with your care team.

What is an Informal Complaint?

When I talk about informal complaints what I am really talking about is communication.  The skill of raising concerns and complaints in a constructive way to achieve a mutually beneficial result.  These kind of complaints usually involve front line staff who interact on a daily basis with patients, not the high powered executives who manipulate the levers of the health care system.

When you talk to many patients and they explain some of their frustrations with health care, many of the concerns are not medically related.  Numerous studies show this.  Many times, patients are frustrated by a lack of communication or not being given information that is relevant to them.  Patients frequently complain about not have a clear understanding of the diagnosis or the treatment plan.  Having talked to many people who work in patient relations the biggest issue that comes up over and over again is poor communication.  Simple misunderstands that erode trust until the health care relationship is damaged so badly that quality of care is negatively impacted.  Communication is a massive issue in health care.

We have to remember that health care is a world unto itself.  They have their own language and processes that are completely non-intuitive to those who do not experience it on an ongoing basis.  Many who are patient advocates are trying to help change this culture but it isn’t going to happen anytime soon.  So what do you do today?

Ask Questions

Many of us who are not medically trained can be easily overwhelmed by the health care system.  Even clinic visits can be very challenging if you don’t know the processes involved.  You have to ask questions to figure things out.  When making an appointment ask about parking.  When arriving at a massive hospital stop at reception and ask for directions.  When arriving at a clinic ask how long you may be waiting.  Do they have Wi-Fi?  If you step away to go to the bathroom and they call you will you miss “your turn?”  All of these questions are simple (and necessary to survive) but did you notice how many very subtle complaints were contained in those questions.  Parking is horrible, your clinic is impossible to find, Wi-Fi is an absolute must, and your cattle call waiting room system is archaic and demeaning.  If every patient asked these questions and staff had to answer these questions over and over again…perhaps someone may get the hint and realize they need to improve.  This is a great way to complain in an informal way that doesn’t get anyone upset as these questions are all very legitimate.  In this example the questions I posed served two purposes.  It provides you the information you need to survive your appointment and it also provides feedback to the health care system about the types of issues that are important to patients.  

Modes of Communication

It happens to all of us.  We wait 6 months to see a specialist and we dutifully do our homework and prepare for the appointment.  We prepare questions, bring a pen and paper to take notes, and do all of the right things we as patients are supposed to do.  We have an engaging 10 minute conversation with the esteemed Doctor and feeling empowered at a job well done we leave the appointment.  Inevitably, on the way home we think of a couple more questions and then recall one really important issue we failed to bring up.  You arrive home feeling like an abject failure feeling the entire appointment was a waste of time.  Here is my problem with the conventional Doctor’s appointment.

If you met a really nice girl, engage in some conversation and after several requests she finally agrees to go out on a date with you.  After the date, what message would you take away if she never gave you her phone number or any way of contacting her in the future?  Probably not a good sign.  So if a Doctor gives you no way of contacting them after an appointment, are they sending you the message that they would prefer to never see you again?

When an appointment is concluding there should ALWAYS be an exchange of information of how to contact either the Doctor or a Clinician who works with the Doctor if there are any questions or follow up.  We have so many methods of communication today this should not be a difficult request.  Ask what works best for the Doctor.  Phone…email…text… what works for them?  This is not an unreasonable request.  If your physician refuses to offer any effective way of communicating outside of a planned clinic visit (that you may have to wait weeks for), maybe you should think about finding another Doctor.  Which brings me to my next point.

Build Your Care Team

When you ask questions or make inquiries about your health, the hope is that you start a conversation.  In a conversation you can learn much more than reading a pamphlet or dutifully listening to a well-rehearsed speech.  In a conversation, two people interact and learn about each other.  You start to build a relationship.  If anyone in health care is willing to engage with you… hang on to those people.  As you start to build a relationship, from that relationship you begin to build trust.  Trust is a huge issue.  What is the point of having a physician who is highly regarded and the “best in their field” if you can’t communicate with them?  In spite of their list of qualifications, if they can’t communicate effectively they can easily alienate a patient and trust becomes a factor.  When we are admitted to hospital we always try to make a connection with someone (anyone) who is willing to engage in conversation and explain what is going on.  The trust that you build gives you the confidence to leave your child’s bedside and actually stop, go to the cafeteria, and have a meal without the fear that “something” might happen when you are gone.

Our care team is our life line.  The beginning of our care team was formed on the day of my son’s diagnosis.  In addition to our Doctors, we were introduced to our nurse clinician who gave us all of the clinic’s contact information, the 24 hr pager number for Cardiology, her office number and her own personal pager.  We were encouraged to call if there were any concerns.  They were available 24/7 for us.  We felt like we had support.  5 weeks later we needed that support.  It was the openness and engagement that we felt that prompted us to page our cardiologist, without the fear that we were taking up someone’s valuable time.  That phone call that likely saved our son’s life.  To this day I trust our team implicitly.  When we have a negative experience in their clinic or in the hospital I have complete confidence in them to address any issues and openly communicate with is.  We may not always get the answer we want, but we do get the best information available. Trust also adds the benefit to our clinicians who don't feel like they are being second guessed when we ask questions.

Minor Communication Errors can have dire consequences

It's the Little Things that Matter

Yes, many of the things that I have discussed are small things.  Little frustrations that we all face.  However, when we don’t say anything we facilitate the gap that exists between us (the patient) and our health care system.  There are many things we can do to engage our health care providers, establish relationships, and build trust.  If we don’t question policies & processes we are admitting failure before we even start.  It is important to challenge the status quo as we need to give our health care providers the feedback they need to improve and succeed.  They will never succeed if we aren’t providing feedback.  Even in an Emergency Room environment it is possible to make a connection with a doctor or nurse, engage with them for only a few hours in spite of the fact you may never see them again.  We are all capable of this.  Health care relationships should not be sterile and unfriendly. 

The whole point of addressing the small issues is so they don’t become big issues. 



Next Blog Post: Part 3: The Formal Complaint Process aka “The Slow Boat to Frustration”

Saturday, May 27, 2017

The Art of Complaining

Over the past few weeks I have been working on a series of blog posts.  A topic that is not talked about a great deal but that I have learned is an important skill for everyone who advocates within the health care system.  The “Art of Complaining.”

I strongly believe that most of my adult life I have been preparing to be a patient advocate and a caregiver.  That seems odd given that before our diagnosis a little over nine years ago I had almost no involvement in health care.  Let me explain.

In my entire professional care I have found myself in management positions with very little line authority (direct reports).  I have been an "influencer" but not in "command."  Only on rare occasions, in my career, have I had a large staff reporting to me that I could delegate work to.  I have usually been in situations where I have to "borrow" other people in the organization to get things done.  You are entirely dependant on other people.  I’ve mostly worked in Human Resources and as a Project Manager.  These are two roles where you are usually in a position of trying to support or enlist the support of others.  Both of these roles usually force you to try to enlist resources be it equipment, people, or time for you to be able to get your work or project done.  Many times I’ve worked in the background, doing things that many other people didn’t have the time to do.  Over time I’ve actually learned to enjoy the challenge.  Then I had the distinction of becoming a caregiver and having to do many of the same things that I did every day at work.  Try to advocate and support a patient in a system where I had little to know authority.

I laugh now when I look back at our first “serious” encounters in the health care system and realize how completely clueless we were.  In every sense of the word “we didn’t know what we didn’t know.”  Inevitably, we had some situations come up where we questioned what was happening.  Some issues were small like the “attitude” we got when we didn’t know something.  Then there were the bigger things where we felt significant pieces of information were being withheld from us.  These are serious issues that need to be addressed…but where do you turn to?  Who do you talk to?  When you are new to the system you have a difficult enough time trying to find a place to get a coffee never mind if you have a legitimate complaint.  Who is the right person to talk to?  What is the process?  No one teaches you how to do this.  However, the art of complaining is an essential skill that every patient and caregiver needs to know.  It is an essential Health Care Survival Skill.  I do not claim to have all of the answers or a magic solution but what I wanted to do was share some of our experiences when we had to learn how to complain…and in some cases it became a matter of life and death.  This is important.  Hopefully, from some of our experiences there can be some lessons learned.  There may be some people who may be just starting their health care journey can take something from it.  It is safe to say that we have had some successes and some failures.   It’s all about learning and improving and questioning the things that need to be questioned.



Why Complain?

The first thing I would ask anyone who feels they want to raise an issue in health care is…”why do you want to raise the issue?”  Is it to help themselves, to help others, or are they just angry?  Not everyone who complains has noble intentions.  Some people are angry and just want to tear a strip off of anyone who will listen.  I’ve encountered this many times.  I get it.  I’ve been there, but it’s not constructive.  There are many blog posts I have written, that have never been published, and that were definitely written in anger.  I was able to convey my feelings and write them down and “purge” them.  It works for me.  Others may have different coping mechanisms.  Going to the gym, music, confiding in a trusted friend.  They can all be legitimate means of “letting off some steam” in a way that will not jeopardize a relationship with a health care provider who you may need to rely on in the future.  

If you want to address a concern or go through the formal complaints process always ask yourself…”Why am I doing this?”  “Am I being part of the solution or am I contributing to the problem?”  “What do I hope to accomplish?”  These are important questions to ask as I have encountered many people who have less than genuine intentions when they complain, or write a nasty letter, vent on facebook, or go to the media.  If you are on a personal mission of self-promotion…just stop it.   You’re not helping.  This comment is directed at myself as much as anyone as I have asked these questions of myself many times.


It is vitally important that “real” issues be addressed.  This is how change happens.  Many positive changes can start out as a simple complaint from a patient or family member.  That is why it is so important when we decide to “take on” the system that we do so in an effective manner.  Being effective in an organization that you have little to no authority is not easy and we need every tip and trick possible.  This is why I want to share some of our experiences.  I know there are many out there who have their own ways of “getting things done.”  The experiences I share are just a few examples. 

...next post...Part 2:  Informal Complaints

Saturday, May 6, 2017

Who Speaks for the Patient?



The Lorax 2012, Universal Studios

"I am the Lorax.  I speak for the trees.  I speak for the trees for the tress have no tongues."
-Dr Seuss, The Lorax

In the remake of the Dr Seuss story of " the Lorax" the movie promos describe the Lorax as "the Legendary...Slightly Annoying...Guardian of the Forest."  The story of the Lorax is (at it's root) an environmental story but I take something else from it.  I see an interesting comparison between the Lorax, who speaks for the trees, and health care providers who claim to " speak for the patient."

The fundamental difference is that the "trees" in the story could not talk but "patients" in the health care system; can speak.  They can do it quite well.  If given the opportunity.

For the last 25 years the patient & family centred care movement has been steadily gaining acceptance within the health care system.  It has become so important that we are seeing many health care leaders speak fluently the language of patient centred care even if they have no idea what those words actually mean.  We are seeing quotes in the media and policies being written, all that espouse the virtues of "patient centred care."  It has evolved to the point where the words "patient centred care" are almost meaningless.  Today, we slap the label "patient centred" or "patients first" on any policy or promotional item without giving the words (and their meaning) a second thought.  Only in limited circumstances are patients allowed to truly be an effective partner in their own health care.

Patients need to participate and be heard.  To my esteemed friends who work in health care; you are NOT the "Lorax" and you DON'T speak for the "patients."

Photo Courtesy of the Winnipeg Free Press - April 26, 2017

I think early on, when patients started to gain their voice, they did so through sharing of their own stories.  A patient story is a powerful tool.  Typically, patients were brought in to share their story at the beginning of a meeting or at a conference.  They would spend fifteen minutes, or so, baring their soul and after everyone was suitably moved they would conclude their talk and would get up and leave.  Once gone, the "adults" of the health care system could get on with the job of managing the health care system.  I know this from experience. I've been one of those people.  Not a second thought would be given to trying to learn a lesson or derive some knowledge from a person who just opened themselves up and shared some of their darkest moments.  To listen to someone share some of their most personal experiences and not try to learn from them is about as insulting as it gets.

Realizing how powerful the patient experience can be, some brilliant strategists have taken a different approach.  If they could position their organization be it a union, drug company, hospital, government, or regulatory body as the "champion of the patient" they could promote their own organization and their own goals by positioning themselves as a group that is an "advocate for patients."  This has now become common place.  I find it ironic that there are so many groups out there from doctors to nurses to administrators who all claim to be fervent advocates for patients but are capable of treating patients with such disdain.  The reality is that there is no one group who speaks for the patient, but the patient.

And The Patient Will Lead Them

It is time to flip the tables on the health care power structure.  For many years patient advocacy groups including the Institute for Patient and Family Centred Care has been talking about collaboration.  Collaboration between patient and health care provider.  An excellent concept and I truly believe that some of our providers truly embrace this concept, but they seem to be the exception rather than the rule.  True collaboration in health care is rare as we have found out through personal experiences.

To move the cause of the "patient" a step further beyond collaboration I think it is time for the "patient" to lead.  Any great leader knows that they wouldn't get very far without superb staff supporting them.  Please don't misconstrue these comments as minimizing the wealth of knowledge that Doctors and Nurses can provide.  Any decent leader knows that they can't know everything and must rely on other's expert knowledge.  At the end of the day the patient should be the decision maker.  To make intelligent decisions the patients needs good information.  The question is where will that information come from?  Your Doctor or Dr Google?

The other benefit of taking on the role of leadership in your own health care is that you will look at your own health care much differently.  It is an unfortunate reality in today's health care system that unless you advocate for yourself you are likely to receive sub-par care.  Nurses and Doctors tell me this all the time.  As long as you are firm but respectful you will stand a much greater chance of getting better health care.  From my own experience, when I think I have been a little too "pushy" or might have crossed the line.  I invariably receive a comment from a Doctor or Nurse that "I am just being a good advocate."  Most competent health care providers welcome patients who "own" their own health care.  These are the people they want to work with because they know that empowered patients are the one's who will receive the greatest benefit from their expert care.  They also know that all of their hard work can be undone by someone who doesn't take self-care seriously.  A great deal of medical expertise, resources, and expense can be undone rather quickly by a patient without the resources (or information) to continue their care in their own home or community.  The reality is that in your health care experience you actually spend very little time in contact with Doctors and Nurses.  Would it be 1%?  Who is looking after your health care the other 99% of the time....that is you...the patient.  A patient should have a great interest in being engaged, educated, and empowered.

Patients can (and should) be leaders in their own health care!

My challenge to you...the next time you see your Doctor ask them a question.  "How can I help you do your job of providing care for me?"  I guarantee this will change the tone of your next visit.  Remember being leader does not mean being a dictator.  You can work collaboratively, but at some point someone needs to make the decisions related to you health.  Wouldn't you prefer that your health care decisions be made by you with the best information available?


NOTE:  This post is dedicated to Lea Legge, Nurse Clinician with the Variety Children's Heart Centre in Winnipeg.  She retired a few days ago and she will be greatly missed.  Thanks Lea for helping us find our voice.  Words cannot express the gratitude we feel toward your many years of service to the families of heart kids across Manitoba.







Saturday, April 8, 2017

Change in Winnipeg's Health Care

Every 6 months we go to Transplant Clinic, with my son, for his semi-annual “tire kick.”  Of the seemingly endless number of appointments we endure, this one is one of my favourites.  Not that we like clinic visits, this is just one that is much more enjoyable.  Why is that?  One unique feature of having a kid with a heart transplant is that your treatment is rather unique and that there are very few of us.  To make everyone’s life a little easier, Transplant Clinic usually involves bringing the transplant families in on the same day.  After doing this a few times we get the pleasure of meeting many of these unique families.  The waiting is made much more enjoyable as we get to know these people on a more personal level.  These are families who I know share a story similar to ours and who I know have been put through unimaginable horrors.  Most of us still have difficulty talking about our experiences without showing the frustration, fear, anger, joy, and depression that comes with complex medical journeys.  These people have my unending respect.  In addition, these are true health care experts who have extensive lived experience.  Their experience is much more compelling that any research study or "key metric" the health care system can conjure up.  They are also a group of people I will defend with every breath in my body or keystroke from my fingers.
Photo Courtesy Health Sciences Centre, Winnipeg MB
These were the families who were on my mind as I sat in the 4th floor Boardroom of the corporate offices of the Winnipeg Regional Health Authority (WRHA).  In this meeting, the Executive and Board discussed the plan ( http://healingourhealthsystem.ca/ ) to change the direction of health care in our city.  This was the plan that was made public yesterday by our Board Chair and CEO.  I had studied the plan for several weeks and I am well aware of the impact this direction may have on many families just like mine.  As was made public in the press release the vote from the board was unanimous.  So it doesn’t take a detective to figure out that I voted in favour of this plan.  A plan that will force many difficult changes in the health care system in Winnipeg. 

Last Tuesday night, after the vote, I spent a very sleepless night thinking about my decision.  I guess we all have moments when we second guess ourselves.  I wasn't second guessing the plan.  I think the changes identified in the plan are solid and long overdue.  The implementation is what gives me pause.  This is not a minor tweak to the system.  This is large scale change that will effect patients and providers alike.  Change is never easy.  Then I thought of the families I see every six months at Transplant Clinic.  What would they think?  Then I thought of the staff who we work with on an ongoing basis. Might some of them chose to retire rather than go through significant change in their job?  These are momentous changes with many consequences.  I don't believe the changes will stop there.  This is a first step.  I also believe our transplant families may understand this plan better than most.  They understand the impact of consolidation.  Especially pediatric cardiac families.  I think once the plan is explained without all of the political hyperbole, this plan will make sense to them.  Regardless, I am always willing to listen to their concerns.  I may get an ear full at our next Transplant Clinic.

In all of this change what I think is truly unique is that a caregiver...a patient family was given a voice at the decision making table.  It is a very different role to go from sharing your story at a conference or with a group of nurses, in a classroom, to sharing your opinion when health care policy is being deliberated.  When I share our story at a meeting or as part of a patient advisory group there is no risk for me.  I can quite literally share anything I want to.  I share positives and I also share negatives.  No one objects when I am critical of health care in that environment.  I am just a parent sharing a "feel good" story and when I leave, the "adults" can go back to making the "adult" decisions of health care.  My presence is quickly forgotten.  I have no authority there.

 It is a much different experience being a board member where you get a chance to be a decision maker.  Questions posed to executives must be addressed as we provide oversight to the management of the Health Region.  This role cannot be taken lightly.  It's also unique that an end user of the system is able to question health care managers with lived experience. Reality is sometimes a bitter pill to swallow.  However, I also have to realise that I have much to learn as well.  The most significant lesson I have learned being on the administrative side of the table is that many leaders in health care, the people we all like to criticise, are in reality very caring people who want the health care system to improve.  They have very sincere intentions but they just work in a very convoluted management structure where change is nearly impossible.  I have gained a great deal of respect for everyone working in health care.  They also need our help.  They need to see health care through the eyes of us who live the system on a daily basis.

Change is happening in Winnipeg.  Some patients and caregivers have and will be given some input to the process.  That input needs to be expanded.  I sincerely wish other caregivers and patients would take leadership roles in health care.  I hope that we can create many opportunities for families to give their input, especially in a time of significant change in health care.  I hope families like the one's I see every 6 months at Transplant clinic, get an opportunity to influence decisions though lived experience.  These are the true patient experts and they have a lot to offer.

Saturday, April 1, 2017

Don't Call Me "Shirley"

It's probably one of the more quoted lines in motion picture history.  The quote from the 1980 movie Airplane!
 -Airplane (1980) - Paramount Pictures

I think of this quote every time the subject of appropriate language comes up in health care. I have spent hours discussing the topic of how address each other and the terms we use.  I am hearing more and more about this issue and I think it is much bigger than some may think. There are many questions.  Is the term  "patient" a title to be revered or despised.  Is the term  "health care consumer" or "client" more appropriate?  Other subjects come up.  Should you refer to your Doctor by their first name without the "Dr" prefix.  I know many parents who dislike being referred to as "(name of child's) parent"  Many view that as a loss of identity or a minimisation of their role.

How we are addressed is something that is personal and many of us view this very differently.  In my own case, I am often referred to as "Russell's Dad" or "Nicole's Dad." I am someone who is immensely proud of my kids I am quite proud of that title (I may feel differently when they are teenagers).  That is my view; but I know it isn't shared by others.  The one thing I do know, that I think we all agree, on is that how we are addressed is something that does matter.

My argument is that if you were to review many critical incident reports or negative occurrence in health care you will find one striking similarity.  Many of these "incidents" have a root cause in basic communication. A misunderstanding or an omission.  Communication is absolutely critical in the health care process. How you address someone is the start of that communication process.  If that initial introduction goes poorly that can tarnish the entire process going forward.  I strongly contend that the first couple of sentences, out of your mouth, when you arrive at an Emergency Room Triage will influence your entire experience in that ER visit.

So how do we know what is the "right thing to do" or how do we know "what not to say?"  I have some very simple advice.  Take a few seconds and ask the question.  Yes...i know this is revolutionary thinking but it seems like we tend to over think most issues and I think we could really benefit by simplifying these issues.

Is it so difficult to ask a patient, whether they be a child or an adult, how they would like to be addressed.  This can be a great ice breaker to get to know someone.  When people discuss the "Doctor-Patient" relationship you need to emphasise the "RELATIONSHIP."  That means interaction between two people; not a one sided lecture.  In the health care environment I have experienced a connection with some people I have met for only a few minutes.  On the other hand I feel much less connected with some that I have dealt with for years.  The difference is simply because "we" took the time to interact as opposed to keeping each other at arm's length.  Isn't it an expression of respect to ask someone how they would like to be treated or addressed?  Isn't that what so many people who become patients want is just an ounce of respect. All it takes to satisfy that need is to show a small amount of interest in the person?

Hello Donald, is it OK to call you Donald...or do you prefer Don?

What I am saying here is that in many instances (in my opinion) it isn't what is said but how it is said that matters more in the long run.  I don't care for being called Mr Lepp, but it is my name and if someone is simply trying to be more respectful, by being a little more formal, by using that rather than my first name it doesn't bother me.  I can easily ask them to use my first name and life goes on.  No big deal.  I can also be called "Mr Lepp" in a derogatory or sarcastic manner and that has to be dealt with differently.  My point is that in many cases it is not what is said...but how it is said that can be offensive.  If you are being talked down to, that is completely different than someone using a term that is not your preference.

Health care is an intricate web of systems and organizations that are difficult to navigate at the best of times.  Basic communication is critical for enhancing the patient experience.  Don't start off the process by getting hung up on language that you may not care for.  If something bothers you...say so...don't let it escalate.  Chances are, you may not be alone in your concerns...but whatever you do..."Don't call me Shirley."