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?"
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 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.
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.
|Twitter Exchange between myself and the Minster of |
Health for Manitoba, Sharon Blady
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.
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.