For the most part our life is routine. We go to work, we come home, we get groceries; its all very normal. However, there are symptoms that things aren't quite so "normal." Whatever "normal" means.
As we fetch groceries we park in the handicapped spot. I'm sure we get the evil stares from people who see a family with young kids using a handicapped spot. After all; things look so perfect. Looks can be deceiving.
Those that know us; know we have two cardiac patients in our family. My wife and my son. My son will be celebrating his 6th anniversary of his heart transplant on Dec 30th. Thanks to modern medicine we can lead a relatively normal life. Relatively.
I find myself routinely taking someone to medical appointments or on the phone with the pharmacy. There always seems to be something going on. I am a patient advocate, not by choice, but by necessity, but what does being a patient advocate mean?
Patient advocacy is another term that gets bandied about in medical circles without a lot of real understanding. We talk about patient engagement, family centred care, in similar terms. They all sound good and have become the trend in health care policy. All part of "politically correct" health care. When people ask me what my thoughts are on these topics I try to give practical examples from my personal experience.
Today was patient advocacy day for me.
It started at about noon today. I received a phone call from my son's cardiology clinic with my son's blood test results. He gets blood tests every couple of weeks to monitor the level of anti-rejection
in his system. We have been having issues the past couple of months maintaining his levels. This is odd seeing that his levels have been rock solid steady for more than 5 years. In discussion, with our Doctors and discussing all of the potential issues we suspected that we may have received a bad batch of medication. It is unlikely; but possible. We got a new batch and we managed to get things somewhat stable. Today, we encountered the same strange levels that we encountered almost two months ago. Could we have received a second bad batch? That seemed truly unbelievable. Again, we discussed every possible explanation and came to the same conclusion. Bad medicine.
For the second time we had to rush to get a new batch of medicine in time for the evening dose (My son takes his med twice a day.) This time we wanted to get a new compound made at a different pharmacy. Despite our best efforts we would not get a new batch until the next day. Our son would miss two doses. Not great news.
My first question to our cardiologist was a question I have used many times before. "On a scale of 1 to 10; how worried should I be?" After that discussion I felt a lot better as I was re-assured that this was a manageable situation and that, although not ideal, it wasn't the cataclysmic apocalypse that i might have feared. My second question was how could we get medication to my son and not have him miss two doses. I explained that if my son were sick and I presented at Emergency, the hospital would be obligated to provide his medications if we had forgotten ours at home. I asked if there was any way we could get the med from the hospital. I would even agree to admitting him to hospital if it would satisfy hospital policy. I really like our cardiologist and have a tremendous amount of respect for her. She realized that missing two doses was not an acceptable scenario to me and she also realized that admitting us to hospital or going to Emergency would be a huge waste of hospital resources. She left me in the clinic waiting area and called the hospital pharmacy and asked if they could make up enough medicine for a couple of days; to ensure we had enough med until we could get our medication from our community pharmacy. We had a small batch of medication in about 10 mins.
The story I have shared is an experience we have had many times. I have had to advocate on behalf of my family on many occasions. Patients cannot sit back and expect the "system" to meet their needs. The process has to be interactive. There is also no way I could advocate for my family without educating myself. Through every experience I have had in health care I have learned and I try to apply that knowledge when I support my family and how they are cared for.
This was just one day in the life of someone who the health care system has become an integral part. I live in constant fear of how others are able to navigate health care because I know many people do not have the experience or support to effectively advocate. Every patient whether they be 8 or 80 need effective advocates to help support them and either help them be their own advocate or advocate for them if they are unable.
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