What is Good Standard of Health Care?
The specialist wasn’t in. The specialist was busy. His assistant would let him know I’d called, and she suggested I try again on his patient day or I could fax a note. I’d learnt from previous experiences with others that faxing notes gets me nowhere. Physician reads it (maybe), files it, doesn’t talk to me. So I called again on his patient day. Gave my cell number. Ensured I was available to take his call anytime that day. No call. Friday I was at the hospital. I tried doing the really annoying ambush thing (but to be absolutely honest, another specialist had suggested it since time was ticking down) and asked him politely for two minutes to discuss what to do as I could not come off this drug Tuesday. The changes were too dramatic, too important to my quality of life. I didn’t get that far. He looked peeved and interrupted me. Well, okay maybe he was having a bad day and obviously stopping him in front of his office would not be the happiest moment of his life. But he hadn’t called me back.
Let’s talk about that for a moment. Physicians today do not call patients back because OHIP doesn’t pay them to. Medicare used to pay physicians and surgeons to telephone patients because the bean counters understood phone calls were part of patient care. But no longer. I had heard that if a patient initiates a call that OHIP will pay but don’t quote me on that. So if a physician calls a patient today they’re doing it pro bono, and they’re doing it because patient care is that important to them. To compare: lawyers don’t even talk to clients for five minutes sans billing them, and lawyers can have as big an effect, if sometimes not bigger, on a person’s life as a doctor can. However, I’m not just a patient, I’m a guinea pig. In a drug trial. For a drug that’s not commercially available. It doesn’t matter whether or not it’s derived from one that’s out in the marketplace, they still don’t know its full effect. Thus when a patient-guinea pig calls saying that there have been dramatic changes that have affected internal body functioning and cognition, it’s important from both a clinical and research point of view – and most of all for good patient care – to take the effing call.
He agreed to speak with me after his meeting. I stared at posters in the waiting room, made queries about an advertised non-drug research study (I need money), and was finally called in to “discuss” it with him. He’d spoken to the chief researcher about my changes – who, by the way, did not know about them all to say the least, but neither the researcher or the specialist knew that – and to his assistant – who also knew only some of the details – but he didn’t speak to me. And so he knew only part of the story because I was waiting to speak to him to tell him the discreet details. I didn’t feel like bandying them all over the place. I’d had enough of that during my insurance fight. The two people he spoke to were also unaware of my financial situation, and not being my physicians they didn’t understand how much this drug was changing my life. Problem number three; blew up in my face today.
After speaking to them about my situation and only them, he told me that I would be enrolled in the second half of the trial, that if I was enrolled in the placebo portion and after a couple of weeks didn’t feel too good, they’d discuss what to do about drug options then. It’s the best way. Bye. What about the changes? Have you seen them before? Bonus. Bye.
To recap: zero discussion with me, the primary source, about my pain levels, dramatic changes, staying on the drug, and taking and paying for its approximation.
Today, the computer told the researchers I was ineligible for the second half of the study. Big surprise. Well, it seemed to be for them. Not to me. I knew what my pain levels were. I knew that once I was no longer reminded of being in pain every verse end, I’d go back to my ignore-it-and-it-will-not-interfere-with-my-life attitude, which would not actually drop the pain levels in my diary entries enough for it to show that the drug had affected them, if you follow that. So I don’t know why they were so sure last week I’d remain in the trial. They could see my diary entries in real time, but I guess they’re not good ballparkers whereas numbers being my friend and having saved my ass many a time since my brain injury, I’d sensed it.
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