Tomorrow is race day. I should be excited about running my first 5K and the only thing that’s exciting about tomorrow is the prospect of running. I consider running like Forrest Gump. I want my simple Long Beach life back. How long would it take me to run to Long Beach, do you think?

Instead I’m writing out this list of my top 10 tips for a mental health clinic that treats mostly poor people.

How to Improve Client Satisfaction:A list

1-      Don’t  blame the client when you fuck up, even for a minute. At least not to our face. Apologizing later is the right thing to do (and they did) but that first bit still hurts, and is hard to overlook.

2-      Don’t cover your mistakes up with lies. We’re sick, not stupid.

3-      Don’t blame us when you make a mistake. We’re sick; We don’t have amnesia.

4-      Don’t reprimand us. We’re sick, not children.

5-      Don’t judge our financial situation by our clothes, purses, or how intelligent we sound . You have formulas and they exist for a reason.   If you have grant money or samples available and you judge your client able to afford it and send them out with a paper prescription, the message you are giving is “eh-you might be approved for this other thing, but we’ve seen your check stubs. We think you can find a way to pay for this. Good luck” (I heard this once: “you should be able to get this, it’s not very expensive. Your PAP should be here soon”) We’re sick. That doesn’t mean we don’t know how to use a thrift store, or that we were always poor. We’re allowed to have nice clothes and purses and even a cell phone with a data plan. Using social welfare programs does not mean we have to live in a camper trailer and wear slippers to the grocery store. Stop stereotyping us as moochers, comparing your paycheck to my husband’s,  glaring at my iPhone and do your fucking job.

6-      Don’t wait for a threat of cc’d letters to your board to  give us attention. For every one of us, there are probably 50 low functioning patients who stopped treatment, are getting their drugs on the black market, are taking off-label unprescribed medication or are dead. We’re sick, we’re not incapable of intelligent communication.

7-      We’re sick.  We have a disease just like your grandma who has high cholesterol. Stop treating us like drug seeking street criminals that are trying to get over on you. Most of us know more about our disease and our treatment than you do. I’m looking at you, staff behind the front desk, administrative staff, and nurses. Listen when we talk to you, and consider that we might have something relevant to say.

One thing Big Pharma does well is Patient Assistance. They hate getting caught with their pants down on this because they make SO SO MUCH MONEY that they can afford to give away a shitload of medication. Big Pharma doesn’t waste time getting poor people their free drugs. The turnaround time is quick, so I was surprised when I went back and there was no medication waiting for me in the office. I’d filled out the application for my uppers 30 days ago and waited dutifully, slogging through a month of cognitive side effects on half of what is supposed to be a combination treatment for bipolar disorder. Get it? Bipolar. I need an upper and a downer.   I was told how difficult this new program is and how the program sucks now since they restricted the allowed formulas.

Don’t blame the patient when you fuck up

I’m a good liar, a smart woman, and the mother of a teenager. But I’m also a kind person and as ballsy as I make myself out to be I’m afraid of authority figures and confrontation so I didn’t know what to say the first time I suspected I was being lied to by the staff in the admin office. I just…..left. Without medication.  The second time, when  the supervisor looked around for my application & found it where it didn’t belong  the person in charge of my application told them that she was waiting for me to do something. (bring financial information) -I was like OH HELL NO. I walked over to the desk, invaded her personal space, flipped through the papers until I found the financials that I’d given her TWO MONTHS ago, flicked them, and walked out.  (see tip #1 above)

From October to Mid-December I was in the downer fog. I was fine. I mean… It was better than unmedicated. Sort of  flatlined. Once, they apologetically gave me a paper prescription and advised me to go buy my meds because they didn’t have any resources for me and the Big Bad Pharma had failed me once again. “Shouldn’t be too much” they said.  I declined. I’ve been on that upper before with poor results and it’s a pretty expensive drug, even in the generic and we were saving for Christmas. Since  I’d filled out an application SEVERAL MONTHS ago, I was hopeful that my medication would soon be shipped to the clinic. Why didn’t I just go buy it? I ask myself that a lot. I could have. I could have put it on a credit card. I mean, it was my mental health we were talking about-it’s a priority! But I thought the meds were being shipped to the clinic any day. That’s what we were waiting on. It was “any day now, they will be here.” And any day stretched into weeks and then months.

The clinic found some money from another grant to get me a bottle of medication and I started my uppers a few days before Christmas.  My travelogue shows that the holiday was pretty up and down for us.

When I came into the clinic in January it was time to fill out a “renewal application” for Patient Assistance. I signed it and had to turn in new financial info. Hint: It wasn’t a renewal.

Don’t fumble through mistakes with bloated language . We’re sick, not stupid.

I would have been super shocked when I went to the clinic Wednesday and found no medication if I hadn’t already received a denial in the mail from big Pharma, stating the scrip had been written wrong. That’s OK. They just have to write a new one.  Learning curve, right? How could I expect them to know the right formula they’d need to use on the prescription they mail in. Oh, wait. Because it’s their job to know that.

Once again I’m handed a paper scrip and told to buy the meds because they don’t have any samples to give me or grants to provide me with medication. I say “but I filled out this paperwork four months ago. I don’t understand.” They say, “This company is so hard to work with. Oh, and we can’t give you any meds, either. No resources. Here’s your prescription, it shouldn’t cost too much. Sorry. your meds should be here soon.” I say “You’ve been telling me that for four months” and I leave, in tears.

Don’t make statements that are easily fact checked with a phone call

I come home and call the number on my letter. I find that this program received my application on January 21^st 2010. No application from me in October, November or December 2009. I ask “What can I do to get this medication?”  They say “Easy. Have your doctor call in a 15-day supply and your pharmacist can call us for an emergency fill. Wait. How did your doctor not know about this option?” (as it turns out, I don’t qualify for this option since I was not enrolled in their program until Jan 22 and have not been receiving medication-another consequence of them not receiving an application from me in 2009. )

Don’t reprimand us. We’re sick, not children.

Don’t judge our financial situation by our clothes, purse or made up standards in your head.

I call the clinic and leave messages threatening  to copy the clinic’s board and their CEO on the letter I have drafted. Suddenly the clinic finds resources they did not have yesterday;  I get a phone call. They don’t want patients to go without, so they’ve done me this favor: if I will come pick up a prescription which they have stamped I can go to a pharmacy on the island and get a sample bottle of my upper. While on the phone, I mention to the med supervisor that I question now whether my other application (for my 3^rd med) made it into the mail, and she says “You know what Summer? From now on Why don’t  you do your own applications and mail them yourself?”   I tell her I’m sending my husband to pick up the scrip because I can’t look at anyone in that office, and that’s when I hang up while she’s talking because I’m crying and I don’t want her to hear me. My husband goes and he’s mad because he knows that this series of events doesn’t end with a phone call and a blog entry and he just watched me miss yet another holiday season.

In the end we get some satisfaction from the profuse apology. They really are sorry, and they really are upset that a client was hurt by a mistake.  No one knows what happened to my original application.  I want to be understanding about that because mistakes happen.

But what if this happens A LOT? What if it happened last week to a woman who went home sad, sick and unmedicated and  won’t ever go back there? Because she thinks that the whole clinic is just stonewalling her and hates her and doesn’t want her to get her medication? Because that’s what I thought yesterday when suddenly the grant appeared to give me the medication, where 24 hours prior there was none.

I still haven’t been able to get anyone at the clinic to understand this: It isn’t about the free medication, you idiots! It’s the gross mismanagement of my medical chart! I want you to investigate that! I want someone to figure out, acknowledge, and answer for what HAPPENED HERE! I wanted someone to TALK to us about how every step of the way through this entire event, I was misled, misdirected, practically blamed for what was happening.  It’s not about the money.

Here’s what sucks about this story: It’s boring because it’s not news. It might interest my friends because it’s about me but it’s so common. It might be more interesting if I’d come home and killed myself and some people have done that- have stopped treatment, have given up on the system, or have simply been unable to navigate the red tape involved in advocating for themselves and have died from that inability to get through it all. They aren’t here to blog about it, obviously. This story is so common it’s just not even interesting anymore. I wish the clinic would talk about it but they don’t have time, they’re too busy handling 2500 cases just like mine.

What is the answer to that? Health care reform? I don’t know. Would that change anything in this office? Would a lower case load fix this or was this a mistake  that only happens sometimes? Who knows. I know all they can do is try. We’re all trying. Trying to be better at our jobs. Trying to be better people. Better listeners, better consumers, better advocates. Yesterday and the day before I was a good advocate for myself but for four months before that I wasn’t and here’s the reason I was a poor advocate:

I don’t have another option. There is one clinic, and I am on a financial need based grant to go there. There’s one woman in charge of my chart, my paperwork, and my patient assistance plans. Until yesterday I didn’t know I could handle those myself. For four months I’ve been afraid of pissing her off. That’s like pissing off the girl who handles payroll, or the hostess in a restaurant. You just don’t do it. I’ve got no choice but to be nice to the people who hold the keys to my sanity so I glossed over their mistake(s) and I didn’t advocate for myself.

No one should be in that position, and if health care reform can fix that somehow-give me another choice, or give them more money so they can pay for more staff, or better training for the staff they have- then please for the love of god pass it. Why  would you deny people that dignity?