Background: I am 27 and have had migraines since as long as I can remember, around age 5. It sucks. I was formally diagnosed at 19, and the pain has been worsening since I was about 22. I love the idea of helping other migraine sufferers, especially since I know there’s a good chance that my future children will be afflicted. I also need money due to a big move and a pay cut.
About two weeks ago, I made an appointment for a screening to enter a clinical trial for a new migraine medication (a triptan, for those who care). The appointment was yesterday, and I was told on the phone that the screening would take “up to four hours,” but probably closer to three. It would require a discussion of my medical history, some basic tests (urine, blood draw, EKG, etc.), and a discussion of the clinical trial. I was told to fast for eight hours beforehand, so I took an 8 a.m. appointment so that I wouldn’t be starving during the day. I also brought my boyfriend with me because I get nervous about anything involving needles and always do better with a hand to hold.
I arrive at 8 and do my initial paperwork, which takes about 15 minutes. Then I wait for about 45 until they finally call my name. Annoying, but that’s not the suck.
I am taken back to a room with Intake Man (IM). For 30 minutes, we discuss my medical history (I’m 27 and have nothing wrong with me – not even a broken bone – other than migraines, so 30 minutes was a bit long, but again, this is not the suck). He gives me the consent booklet to read over and says he’ll fetch the doctor. My bladder is about to explode, so I ask to give my urine sample now. He gives me the cup, I do my biz, and then I’m left alone. I begin reading, which outlines exactly how the testing will proceed (it involves multiple blood draws – this is relevant), how and when I’ll be paid (also relevant), and the potential side effects (nausea, vomiting, leg pain, clotting problems, all that kind of fun stuff). I keep checking my watch because I have been waiting a while, and when it hits an entire hour of me in a room with the door closed, I get up, open the door, and begin looking for IM periodically. I finally find him 30 minutes later and ask where the doctor is. He said the doctor’s been in a meeting but that Intake Woman (IW) will come see me.
Less than five minutes later, a doctor comes in (yay!) to clarify one thing on my sheet from IM. He’s gone in less than a minute. Immediately, IW comes in to . . . do the exact same intake AGAIN. She even has IM’s version in her hand. Apparently he sucks at his job. She did a much better, more concise job. She expresses concern, totally fairly, over one aspect of my medical history. I have twice lost consciousness after encountering a needle: once in 2006 after getting my ears pierced (funny story) and once again in 2008 after a botched attempt to insert an IV for a CT scan. I explain that the latter episode occurred at the end of a stressful day of medical testing relating to my migraines and that the nurse had inserted the needle three times unsuccessfully and had finally started rooting around in my vein, which drew a decent amount of blood. I also reiterated that I’ve had blood draws since that have gone fine and I’ve found good coping mechanisms. She said it will be up to the doctor to decide, which, again, is totally fair.
IW then sends me to a nurse to check my blood pressure and do an EKG. I have my arm squeezed and show my boobies to the nurse. Good times. She’s nice. She tells me to go wait in the main waiting area for IW. It is now 11:45, and I’ve been there for three hours and 45 minutes. I sit down next to my boyfriend, who fell asleep waiting for me, and he mentions that everyone else who arrived at the same time as me has left, as well as a lot of people who came after. At the four-hour mark, IW tells me she’ll be right back to get me.
Forty-five minutes later, I am fed up. IW hasn’t reappeared. I have been fasting for almost 17 hours and can’t even have a snack because of the still-pending blood work. Low blood-sugar is a common migraine trigger, which they well should have known given the nature of my clinical trial. I am trying not to cry, which always happens to me when frustrated, but I get up to speak with the front desk. I tell the women that I’ve been waiting a really long time and want to know how much longer it will be. I mention, too, that the woman who booked my appointment said I would be here for about three or up to four hours. The woman finds my name on the list – I was #5 to check in, and they were already on page 2 – and says, “Wow, you have been here a while.” She pages IW, and two minutes later, she fetches me.
We head to another exam room, and I frustratedly mention that I’ve been waiting a very long time. She apologizes for the delay and explains that the doctors had been at lunch. That was the end of my patience. I remind her that I’ve been fasting since dinner last night and have very low blood sugar and want to know how much longer I’m going to wait. She said she doesn’t know for sure. I tell her that’s not an acceptable answer when I should have been done an hour ago. She said there’s no way to predict delays, and I again ask how much longer. She said about another hour. Had that been true, that would have meant I was there for six entire hours, though I imagine her estimate was generous. I tell her the six-hours bit, and she says, “I can tell you’re upset.” I corrected her that no, in fact, I was pissed and was leaving.
I left the room and went back to the front desk to complain about how long I was left waiting and told them I had to get back to work. They apologized and asked if I wanted to speak to someone. I said yes, as long as they came right at that moment since, as I just said, I had to leave. I stand in front of the front desk so I’m not forgotten again, and while I wait, another intake person is mocking my complaints about everything as if I’m not two feet in front of her. Two minutes later, I ask for a phone number to call to complain. My boyfriend and I leave, and I burst into tears from frustration and hunger.
On the way home, a supervisor calls me and apologizes that she couldn’t speak with me in person since she was in a meeting. Apparently the staff does nothing but meet. She was polite, but her explanation only made things worse. Essentially she said that things had been much busier lately because more people had been showing up for their scheduled appointments. When I tell her that they shouldn’t schedule so many appointments then, she tries to turn it around on me and say that there was doubt over whether or not I would be a good candidate for the study because of my needle troubles. I ask her why me not being a good candidate would mean I wait hours longer than everyone else. Why didn’t they just send me home? I would have understood that. To her credit, she did listen to me (though she kept trying to talk over me) and tried to make it up to me by offering me $25 for my transportation. I really wasn’t after money, and I told her – frustratedly, admittedly – that I was just not happy with how little respect I was offered. I was abandoned over and over, and no one seemed to know what anyone else was doing. Then she tells me that they normally don’t do this, but they would send me a check for half of the $80 I was supposed to receive for consenting to the study. I correct her that my study would have paid me $140, not $80, so she said she’d send a check for $70. I accepted because I can still really use the money, and there was nothing else either of us could say.
I think the thing that bothers me the most is that I was willing to take a potentially serious medical risk (and, hey, face my fear of needles) in order to help other people who suffer from migraines. I know delays happen, but I genuinely think both IW and IM totally forgot about me. More than once. And leaving a migraine sufferer without food for that long is just stupid and cruel, not to mention a needle-phobe who screwed up her courage but is getting more anxious as each
TL;DR: I am ignored, abandoned, and spoken to rudely by staff at a research-trial clinic and not happy about it.
Edited to fix LJ cut because I haven't posted in a while and apparently don't remember how to do things.