Recently I had the pleasure of doing presentation for the pharmacists for the Winnipeg Regional Health Authority. I have told our story many times but I always like to change things up a bit. One point that I try to make is that our experiences in health care are far from over. The really spectacular stuff happened years ago but the aftermath of those years are still very much with us. It is likely that there may be some big challenges ahead and if you have followed this blog over the past month you will find that is certainly the case.
In trying to illustrate all of the support and specialities we have to manage I developed a simple diagram to show all of the people who are involved in our lives. This is what you get when you have two medically complex people in your house. What I created shocked me ( a little.)
When I went through the litany of appointments we go to and the number of clinics, organizations, and specialities that are integrated into our lives it started to make my head hurt (or explained why my head hurts.) In fact the slide that I show here isn't complete. I did not list our GP or the Eye Clinic at Children's Hospital. I just didn't have room for them all.
Yes...we deal with a lot of different people and it does make for a very interesting visual but it also reveals something that is very important and something we should remember about how to support people with complex health issues.
Most people who deal with multiple specialities have to become a conduit for everyone who supports them. If we have a change in treatment from one of our Doctors it can effect 3 or 4 other groups who support us. As an example, we change medications with some regularity. What if that medication has to be given at school (during the day). This means we have several administrative steps to overcome to ensure that happens. The school needs formal instructions and a directive. By itself it is not a huge deal but when you add it to all of our other activities it becomes a daunting task.
As I stated previously we have to manage all of these stakeholders who are involved in our family's health care. Yes, they are their to support us but many times it feels like we are supporting (or managing) them. Many of the people we deal with are absolutely excellent, I am not complaining. Comparing our situation to what many others have experienced I think we are very lucky to have the team we have. However, they do tend to be a needy bunch. They need to write reports, then require follow-up appointments, and they all have bosses to report to. This means they need an awful lot of our time and input.
There is also another component to this. Our life has become much more public. When you deal with so many people and they impact how you do everyday activities it feels very intrusive. This has been a huge adjustment for us because when we started into this over 7 years ago we were fairly quiet people who enjoyed living our lives in quiet anonymity. I cannot imagine the number of people who have played a role in our care. It could easily be over a hundred and could be as many as two hundred. All of this non-optional.
I distinctly remember very early on in our experience, another parent telling us "that if you are the type of person with control issues; this may not work out very well for you." Truer words have never been spoken. In many aspects of our lives we have lost total control. We do have our occasional rebellion. When our clinic asks us to go for blood work in two or three weeks re pretend we never heard the two and then we have been known to stretch it to four. Probably not the smartest thing in the world...but it feels so good to rebel just that little bit.
So What is my Point
I didn't write this to whine and moan about how tough our life is. If someone reads this and wonders how they could help someone who is going through some difficult times. I have a few suggestions.
Be a Help; Don't Provide More Work
Many people have great intentions of trying to provide some help but sometimes they add to the stress. If you want to help someone you have to know something about them and what they truly need. I don't want to discourage anyone but you have to be pragmatic about how you want to help someone. Sometimes even asking them "How can you help" can be a stressful question. Having been through that type of situation, sometimes I have no idea how someone could help. My suggestion is try to match what abilities or resources you have that may help someone else. Secondly, don't add to someone's workload. Here is an example. You may be a great cook and you want to cook someone a meal. However, you don't drive. Offering someone a cooked meal is a great idea but if you ask them to come and pick it up you have just added another task to their busy day. Great intention but it's not ideal. It's very hard to turn down someone's generosity. Especially when you know the intent is genuine.
Listen
All people want to feel important. All people want to feel valued. The best way of doing this is to listen to their story. I remember several situations when i've talked to other patient families. Very early in the conversation I got the message loud and clear that these people had something to say. Not sure why they chose me, but they would unload on me. I have been dumbfounded at how open some people have been with their experiences. It is clear to me that people need to share their experience including all of the fear, frustration and angst they have endured. It was well worth my time to take a moment, shut my mouth, not try to solve their problem....and just listen. Invariably I have learned a tremendous amount by keeping quiet. This is a great opportunity to listen and as a result; learn. If you find yourself wanting to help this person, this may be a great opportunity to hear what they are saying and what they truly need. I use this technique to figure out what to buy my wife for Christmas. If I engage in conversation and listen to what she is saying, I can get some pretty good clues as to what she wants. Use the same technique with someone you may want to help through a difficult situation. Ask yourself; what are they telling me? Why are they telling me this?
Care for the "Whole" Family/Care Team
One of the failings of the health care system is that many areas of health care work in Silos and don't talk to each other. From my graphic above you see illustrated many of those silos. It also becomes apparent that these people should be talking to each other, but rarely do. When you admit a family member into a hospital you affect far more than the patient in the hospital. You turn the whole family upside down. If you are stuck in the hospital you can't be home taking care of all of the tasks that are involved in keeping a house. Dishes don't get done. Carpets don't get vacuumed. Life still has to go on. The kids still need to get to school. It isn't just about the treatment of an illness. Most people can survive a short hospital stay of a few days, but when that stay stretches into weeks that is a huge challenge. When Russell was airlifted to Edmonton it actually simplified our lives. There was no option to try to maintain our house or even go back to work. We were 1400 kms from our day to day lives. All we did was eat, live, and breath hospital which allowed us to focus. Thankfully there were some very kind and generous people in Winnipeg who stepped up and took care of a lot of details for us.
Lessons Learned:
1) Navigating health care is about a lot more than understanding illness and treatment. It's about living a full and complete life and understanding how a chronic illness will affect even some of the small things in your life. Imagine breaking your big toe. In the grand scheme of things a fairly minor issue but when it happens you realize how much that toe does for you. One of our huge obstacles when we have a health issue going on is child care. If Susan is in the hospital and I am with her. Who is looking after the kids. With the prospect of Susan and I having to travel to Toronto, the question becomes what about our kids; what will they do. Without any prompting, Russell's cardiologist has already let us know that if we want to take Russell and Nicole with us, she will make arrangements with SickKids to takeover Russell's care for however long we are in Toronto. What an awesome Doctor. We hope this never happens but do you know what a relief it is to know we have some options? Now that is someone who is stepping up and filling a need.
2) You have to own your own health care. You can't let things "just" happen to you. If a clinic calls you to make an appointment and it is at a really inconvenient time; you have to ask to re-schedule and not take the first appointment that comes along. You also have to politely question some hospital policies. Many policies are so old and entrenched that no one recalls why they exist in the first place. If something doesn't work for you you have to question it. Things like visiting hours and "quiet time" border on the ridiculous. If you are caring for a loved one you should just assume you have 24/7 access until someone tells you different.
3) As an HR practitioner I have to emphasize how important it is to find out how your benefits at work can assist you. Most people do not have any idea what there benefits will cover. Canadians mistakenly assume "Health Care is Free" and it most certainly not. Many components of our health care system are not covered through our provincial medicare. This is where benefit plans can help. Know what is in your plan and learn how to negotiate with insurance companies.
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