the pharmacy that wouldn't follow through

Here is the kind of situation that comes up occasionally in the life of any parent of a medically fragile child. On the up side, this kind of thing hasn't happened very often. On the down side, these situations can quickly consume a lot of time and energy and leave you realizing the vulnerability of being dependent on someone else's competence for the well being of your own child. There are some strategies that are useful in preventing or minimizing the problems. I will share the coping strategies I have learned, and if you have your own to add I would love to hear them.

About two weeks ago, on the weekend, I tried to order Aidan's anti-rejection medicine using the automated refill line to his pharmacy, and found that the hospital pharmacy we had gotten our meds from for several years had changed hands and become part of a national chain of drug stores. It doesn't matter which one it was because I doubt if this is a systemic problem, just a localized one. Anyway, Aidan's old Rx number wouldn't work under their new system.

So the next Monday I called to place the order by voice, and the person who I spoke to said it would be ready later that day. I didn't take her too seriously about "that day" because the medication has to be prepared under a chemotherapy hood and usually the pharmacists tell you to give them a 48 hour window. But we weren't coming to town until Wednesday, anyway (the pharmacy is in town 60 miles away), which would easily give them time.

I neglected to call that day to make sure that they had it ready. I usually do call, but life was busy and we had to be in town anyway so we just went. After Aidan's clinic at the hospital I went to the pharmacy and found that they had absolutely no record that I had called. So they didn't have the medicine prepared. The staff member I spoke to apologized profusely and asked if we could stay in town for 2 more hours while they got it ready, assuring us it would have top priority. One of the pharmacists passing by while we were talking mentioned under his breath that this sort of thing had been happening too often, which made me feel better because up till then I wondered it they were thinking me a flake who wanted to shove off my forgetfulness on them.

Two hours later I went back -- I spoke to a different person behind the counter and found that she knew nothing of the whole episode two hours before. The medicine was not ready, not even started. She told me with raised eyebrows that it would take at least two more hours to prepare the medicine because it had to be put under the chemo hood, etc.

My eyebrows raised in turn. By this time it was evening and we had a snowstorm going on up in our area. So I told her very seriously indeed that we couldn't really afford to wait any longer and asked what the pharmacy could do about it, given that they had failed to deliver twice now. She said they could give us a week's dose right then (they usually keep some prepared on hand for emergencies and hospital intakes, etc) and they would have the rest made by the next day. I said we weren't going to need the balance until next week, since they had provided the week's supply, and that we weren't going to be in town until the next week anyway. We waited about 30 more minutes and finally got the small bottle to bring home. I thanked them very sincerely since I felt they had had a hassle to deal with this, too, and I felt I should have called ahead seeing that they were obviously in transition, taking over the former pharmacy's clientele.

The next day the pharmacy called to tell me that the medicine wouldn't be prepared that day as they had told me. I explained again that we weren't coming into town until the next week anyway so we were fine.

So fast forward a week, to yesterday. Kevin was going to drive into town to see Sean's track event. Learning from past experience, I made sure to call the pharmacy that morning. The staff member that answered the phone said, "There is no medicine prepared here for him!" Astonished, I said that it had been promised to be ready four days ago and that we needed the medicine that day since it was to keep Aidan from rejecting his liver. She went off to consult in the back and came back: "Oh, it's here. It was in the refrigerator."

After I hung up I thought: "In the refrigerator???" The medicine is NOT usually supposed to be in the refrigerator. It generally has a label that says on it in no uncertain terms "DO NOT REFRIGERATE." I talked to Kevin and told him to check when he went to the pharmacy if the medicine was cold.

That afternoon, he called from town and said, "The medicine was cold; the worker got it from the refrigerator; and it has a label right on it saying "DO NOT refrigerate."

So I quickly put in a call to the transplant nurse at the GI clinic, who is a great resource for me in getting things done. I wanted to ask if the medicine was OK if it had been refrigerated. I left a voicemail message, at the same time asking if she could send in the prescription to a different pharmacy. We have a pharmacy closer to our house (20 miles instead of 60) but just hadn't had the motivation to make the change until then since the hospital pharmacy had always been so good to us.

Then I looked online but couldn't find anything about temperature range. Kevin came home with the medication that night.

The next morning I got the call back from the transplant nurse, and we chatted a bit. She was very sympathetic and said she couldn't find anything that said whether the med would be still OK or not. While talking to her I realized I could have just called the pharmacy and asked to speak with a pharmacist who would know more about the specifics of the compound than she did. She agreed that this was probably the thing to do. So after talking to her, I called the pharmacy and left a message that explained the problem and asked them to call back and let me know whether the medicine was OK or not.

Shortly afterward, someone called back. Here is where I should have been careful to write down a name, but naively didn't. This lady said that according to the pharmacist the medicine would have to be replaced and she promised that it would be ready that afternoon. I mentioned "It has to be made under a chemo hood. Are you SURE it will be ready today?" She said they were going to make it right away. She sounded confident and competent.

So, you guessed it. We got through with Aidan's appointment in town and drove to the other side of town to the pharmacy, and they had absolutely no record of any of this. The medicine wasn't ready. They didn't know who had talked to me. The manager came and said she would have some medicine started right away but it would take a while. She said "I wish you could remember who you talked to" and it sounded to me like "IF you really DID talk to anyone." It was frustrating, and made me realize that I had slipped up again in not taking down a name.

But at that point, you can guess I felt like I was in our own particular version of Groundhog Day. "We've DONE this already! This has been going on for almost two weeks! " I told her we couldn't wait (it was again, evening by now and we had a long drive ahead of us). I told her we would need to draw from their extra supply again. We needed medicine that very day and we needed to not have to worry about it anymore. It was agreed quickly. Gosh, I'm not usually the type to make a scene but I was in the late-beginning stages of one by then. The manager said they would give us some to take home and then send us the rest by UPS. She had the bottle quickly ready, and I doublechecked whether they still had our address. I asked Kevin if he thought I looked sane, because having the same thing happen so many times made me start feeling like one of those women in movies that are suspected of having some mental disorder and start wondering if they really do.

So at this point we have the two week's supply of medicine, which is nice, with promise of more. Sigh, I am questioning whether it will come ... and now am brooding over whether or not this bottle I have now came from the fridge, too. I joked to Kevin "maybe they just poured a bit from the bottle I brought back into the smaller bottle to make it look like they were giving me a fresh supply". That's not a good joke. It makes you realize how much you depend on the competence of your pharmacist, especially when your child's health is at stake, and so I'm glad that I asked the nurse to switch over our prescription to the other pharmacy.

So what I've learned or rather, reinforced, in my mind, in dealing with medical care providers, insurance companies and the like -- any place where it really matters to your wellbeing that they get it right:

• Take down names! Most of the time, especially during insurance hassles, I write down a log of the phone conversation, time and date, and ask them to please repeat their name so I can make sure I got it right at the beginning of the conversation. The reason I wasn't careful this time was because I had some residual trust of our very excellent hospital pharmacy before it changed hands.
  
• Doublecheck to make sure the other party has followed through with what he or she was supposed to, especially if it's you who is going to be inconvenienced by their errors.
• Be resolute, but polite, assertive but not aggressive. Pay no attention to "you're a pain, please go away" signals, because they're irrelevant. You want a solution, not new friends. But don't make enemies gratuitously, either. Be polite and positive.
• A little bit of transparency in emotion doesn't seem to hurt, though. When I'm surprised and dismayed and show it, it puts pressure on them to take me seriously and solve the problem, which American service personnel are instinctively geared towards doing. I'm sure in some countries you would just get laughed at, but most of the time not here. If you do get treated with contempt, that is a dysfunctional business place and you ought to break of all ties as thoroughly and quickly as you can. (I think it's different when you're dealing with a doctor -- I try to stay very cool and substantial in those situations, because "emotional parent syndrome" can disempower you with a doctor who's not on your side).
  
• Present the problem and ask them if they can come up with a solution. This is neutral and puts the thinking process where it belongs, because you usually can't tell them how their business is run and it isn't your job, anyway. If the person you are talking to shrugs that off, ask if you can talk to someone who can solve the problem. Persist until you get something you can live with.
• Provide closure. Try to leave the place on a positive note. Then resolve the case in your mind. Venting a bit to someone or writing a blog : ) can help with the emotional side, which is important. Evaluating the situation objectively to figure out what you could have done in light of what you now know can help you be prepared in future situations. Decide whether the situation needs a letter of complaint, a change to a different business, or some other follow-up action.