Last week I called a patient advocate at our local children’s hospital. I was having trouble getting a shot scheduled for my daughter and had been trying for over a month. I’d sent several messages through the patient portal, called the nurse line a few times and I was still not connecting with a shot nurse. I needed her to help me facilitate the process because I was starting to get frustrated. It shouldn’t be so hard to navigate the system and get the person that you need to get something scheduled, right?
In the course of me explaining my frustration, I gave her another example. My daughter’s had blurry vision ever since she had a lumbar puncture in February. Our pediatrician got us into Opthalmology. That doctor didn’t think the problem was with her eyes and suggested that we follow-up with neurology. I did through our social worker. When I didn’t get a response, I sent her another email. She called me back asking for me to call the nurse line. I did. The following day I got a message back from our neurologist through a nurse that she didn’t think it was neurological and she’d follow-up with our pediatrician and our vestibular therapist to come up with a plan of care. It was ten days later and neither of them had been contacted. The advocate was going to look into that issue as well.
A shot in the dark. That’s what came to my mind after the story spilled out.
A shot in the dark is a wild guess. That’s what the neurologist was doing. Since she hadn’t examined my daughter, she was making a guess. Granted it was based on her expertise and knowledge but it was still an educated guess.
After I hung up the phone, I realized that a guess wasn’t good enough for me. My child has had dilated pupils and blurry vision for six weeks. She’s having trouble seeing and it’s impacting every facet of her life. In fact, we had to make the difficult decision to take her homebound for school because it’s just too difficult for her to read in the classroom. The more I mulled it over, I came the decision that I wanted her seen by a neurologist and since ours declined to see her, we’d like to see another one. A couple of days later, I called the advocate back with that request. We get our Botox injections from a different neurologist. Could we switch since he sees her four times a year for injections? This to me made logical sense. It would not only get my daughter seen by a doctor, it would eliminate a provider and two appointments a year. I also told her if that didn’t work out, that we’d have to take her to another hospital because we wanted her to be examined.
An hour later I got a call back from her. She spoke with neurology and they felt that the best person to see Rosie was our current doctor “in light of what’s going on.” Essentially, we couldn’t see another doctor. She said in the voicemail that we need to get an appointment at another hospital. I was stunned. I immediately sent an email to our pediatrician, Vestibular therapist and the patient advocated stating that I was displeased. It was very matter-of-fact outlining the situation and then I called the other hospital to set an appointment.
I was pretty diplomatic and professional but as the weekend wore on, I decided that I was pissed. If I were a doctor and had a patient with blurry vision after she leaked spinal fluid for 11 days and had a concerned mom (and vestibular therapist. I wasn’t the only one), I’d at the very least take a look at the patient and make a 100% informed decision. After an exam, if I didn’t think it was neurological, I’d explain in detail why. I’d put everyone’s mind at ease. Isn’t that what a doctor is supposed to do?
As a hospital, if I had a request to change physicians based on the fact that the current doctor will not see her, I’d honor that request. Especially since we explained in the email that our teenager doesn’t like her current provider and wants to change. Shouldn’t our 15 year-old be able to have some control over her healthcare?
The more I thought about the advocate’s voicemail, the angrier I became. Essentially, we were told that the doctor who is best to see her won’t see her and we needed to go somewhere else. For me, going somewhere else wasn’t a problem because that answer proved to me what I, and my daughter, felt all along. Our current neurologist doesn’t care about her and if that’s the case, we definitely need a new doctor but I also felt that the patient advocate needed to know how I felt after thinking about it over the weekend.
This morning, I called our advocate and after asking how her weekend went, I told her we set an appointment at another hospital. I also told her that our current neurologist’s guess of what’s going on better be right, because if it’s not and something is wrong, I will not hesitate to file a lawsuit. I also informed her that we would probably migrate all our providers to the other hospital so we could have our physician’s communicate with each other and that would result in thousands of our insurance company’s money going out the door. And, then I apologized for my anger because it wasn’t her fault. She’s just the messenger.
There’s a huge problem with our medical system. If an appliance repair guy came to my home and I didn’t like the service, I could fire him and call another. However, doctors hold pediatric patients hostage because there aren’t a lot of options. In this case, it was even worse because we have no options at our current hospital. That stinks because my teenager really doesn’t want to go anywhere else. She just wants to switch doctors and we just want her seen. A pretty simple scenario made incredibly complicated by doctors.
As we’ve gone through this journey, I’ve said “this shouldn’t be so hard” a lot. It’s incredibly difficult to have a chronically ill child in the first place and it’s emotional. It’s terribly tough on a teenager to be chronically ill and in pain much of the time. The entire situation is frustrating and difficult. You would think that doctors that deal with kids like this, would be able to put themselves in our shoes. To understand that as a mom, guesses don’t work for me. As a patient, my child wants to know that someone cares about her and wants to find answers.
Over the past couple of years, I’ve heard our neurologist say to Rosie, “first, do no harm” as she discussed potential medications with her. It’s part of the Hippocratic oath. Guess what? This entire situation has done harm to my child. She not only is physically suffering with unexplained blurry vision, emotionally she’s suffering too. She’s worried something’s wrong. She’s frustrated that no one cares and she’s stressed and upset. All of this could have been avoided with a simple exam and educated answer. Not a shot in the dark.