The points where our system could lose women needing care.
by Emily Willingham
I found a lump under my left breast two days ago. It’s painful and moveable, so probably not That Thing. But being middle aged and near the one-year point since my last mammogram, I decided to schedule a mammogram and get this checked out. Here’s what happened next.
I went online last night and signed up for someone from the local mammography clinic to call me to make an appointment. Seemed delightfully easy, but it’s the first time I’ve ever tried the online approach.
To my surprise, they actually called this morning while I was in the midst of eating a croissant. I knew they’d need my records from my previous mammogram so they could have context for the findings. What I did not know was that when I mentioned having found the lump, they would refuse to schedule an appointment and told me I’d need to arrange through my primary care physician to be referred for a diagnostic mammogram. This is a point at which a lot of women without my resources or time would probably drop the issue, likely delay or wait, possibly too long. I’m at about 20 minutes expended in my effort to schedule a mammogram appointment, and it looks like my delay will be at least a few days before I get back to achieving that.
Then they also said I’d need to call the center (in another state) where I had my previous mammogram and have those records transferred. I’d anticipated that.
I call Mammography Center in Other State. They want Mammography Center in Current Location to send the request instead of doing it the other way. This is another point at which a lot of women without my resources or time would probably drop the issue, likely delay or wait, possibly too long. Then it turns out that my most recent mammogram was a diagnostic one at a different clinic, and I need to call them. I’m now at about 30 minutes of trying to schedule my mammogram appointment that I now probably won’t get until a considerable delay because I still have to make and keep an appointment with my primary care physician first.
I call Mammography Diagnostic Center in Other State. They tell me that I need to access a fax machine if I want my medical records transferred. Why? Because they have to fax me a HIPAA release (I filled one out already; I always do that at any counter at any clinic, but they don’t seem to have it) so that I can fill it in and fax it back. Otherwise, they won’t be able to send my records to another mammogram clinic. This is really a point at which a lot of women without my resources or time would probably drop the issue, likely delay or wait, possibly too long. A woman without a fax machine at home would have to find a place that takes faxes, take the fax, fill it in, and fax it back, paying for the entire thing and expending a good deal of time in doing it. And I’m unclear about how being forced to fax medical information from a public place retains one’s right to medical privacy. Did I mention that I already have a HIPAA release on file with them? At this point, I’m about 45 minutes in to trying to make an appointment for a mammogram.
They don’t have the form available online. They won’t email it.
So what started off as a morning with some coffee and a croissant and a couple of editing jobs ahead of me has turned into an impossible labyrinth of healthcare bullshit. Of all things-of all things-transferring mammography results, making a mammography appointment ought to be as streamlined and as smooth as possible. All subsequent studies require comparison to previous results-they need this context for the best understanding of any changes in the breast.
Yet in the last 45 minutes, I’ve encountered not one but three time-consuming, bureaucratic twists, every single one of which will delay my ability even to schedule this preventive care, much less actually receive it. And I’ve not even gotten to any issues about insurance yet.
I’m lucky. I have time. I’m incredibly stubborn. I have a fax machine, unplugged and tucked away in some closet that I will dig out, and plug into my landline. I will call Mammography Clinic in Other State and ask them to fax the form. If they’re doing their job right-if-I will receive it soonish. I will complete it, and fax it back. Presumably, in a few days, Mammography Clinic in Current Location will receive the results.
In the meantime, I now have to call my primary care physician and make an appointment for her to poke around and confirm that yes, I have a palpable lump under my breast. Then she will make a referral-I’m on a PPO and am not supposed to need referrals-so that I can have a diagnostic mammogram. By the time I achieve all of the faxing and other appointment making, I’ll have spent at least 2 hours on the “simple” act of trying to make an appointment for a mammogram and have waited likely several days so that I can have that appointment in primary care first. Women who don’t have two hours at their leisure to work all of this, who don’t own fax machines, who would find it difficult to have not one but two appointments to obtain preventive healthcare? Where would they simply stop at a dead end in this labyrinth?
Once I’ve seen my primary care physician and have the referral, I will again call Mammography Clinic in Current Location and try, again, to make an appointment. Except: My last mammogram was in June 2012. It was diagnostic. My insurance company could determine that I need to wait until that full calendar year has passed before I need another mammogram. So for that last bend in the labyrinth before I see the light at the end, I have to hope that my insurance company finds a palpable lump under my breast sufficiently compelling to warrant said mammogram a scant three weeks before that calendar year ends.
Not for me, but for many women, that would be the point at which the obstacles become insurmountable, at which they never find their way out alive.
I will keep phoning and faxing and stay on this, of course. But what about the woman who don’t own a fax machine, whose time is considerably less flexible, whose acute work and family responsibilities simply demand her attention away from her own healthcare? I know women who put off healthcare-especially preventive care-all the time for exactly these reasons. And at any step in the above, women will do exactly that. Shrug, drop it, get distracted by something more immediate, plan to come back to it in a week or two. Or a month. And sometimes, that will simply be too long and too late.
[Image credit: Radial labyrinth image public domain via Wikimedia Commons. Mammogram image also public domain, US Govt., via Wikimedia Commons.]
I noticed that my local health clinic (where my allergist, ob/gyn, and primary care physician, as well as a full blood lab and medical imaging center, are all located) is now prominently advertising no appointment/walk-in mammograms every Wednesday now. I poked my head when I was in to see a doctor earlier this week and asked what’d prompted this change. They basically cited everything you just listed.
While I’m glad that my medical center is being so pro-active in reaching patients, the problem is really exactly what you highlight in this post: it’s fixing a problem that for many people is an irritation, rather than an actual barrier to access. Realistically, the people being seen at my women’s health-focused branch of a major regional medical system are already being decently-served. While it’s definitely good that they’re taking steps to remove accessibility barriers for people who might find delays aggravating, it’s a complete other level than things like simple access to a fax machine (which actually, I don’t even have – and I sure as hell would not fax a HIPAA form from say, Kinko’s) – or even the time to jump through each small but progressively more prohibitive hoop.
(The question about HIPAA and faxes is actually really interesting. I hope that they asked for some kind of proof of you being you, before agreeing to fax things around. If the request is coming from a medical center, there seems like less issue with fraud – or someone otherwise getting records they should not have access to.)
I went through the exact same thing on Valentine’s Day, of all days. Except I was already at the mammogram site for my screening mammo when I naively responded “yes” to the receptionist. As in, Yes, I do have a tender spot that I’d particularly like checked out. Thus began several hours of back-and-forth with staffers and insurance company reps until finally I basically said: Look, I came here to take care of my health. You are asking me to leave and go see my primary care doc so that I can tell her exactly what I told you: I have a tender spot in my breast. Then she will send me right back here. It was health care at its absolute poorest and most bureaucratic. P.S. After much insistence and a surprising degree of sight-unseen cooperation from my gyn, I got my mammo that day.
Update: I wrote the above post a full week ago and called my primary care physician about a referral that same day. On Tuesday of this week (4.5 days later), I got a call back from my primary care physician. They were trying to avoid having to send the referral, and here’s how: They were hoping that the lump I found had been discovered by my OB-GYN (I don’t have one here) so that the OB-GYN would have to do the referral instead. Sadly for them, I had found the lump, so the referral really was their problem. They seemed disappointed but called the next day (Wednesday) to confirm having sent it.
I faxed-FAXED (1993, anyone?)-my HIPAA form to Breast Cancer Diagnostic Center in Other State. Asked for confirmation by phone-never heard from them. So I called just now. Yes, they sent them. I can feel, somewhere deep in my ducts, that paths are all converging and that lo, someday, I will an appointment make.
Today, Friday, two days after my PCP said they’d sent my referral to Local Breast Diagnostic Center, I called said Local Center. They have my referrral. Is appointment-making at long last imminent?
No.
Evidently, they don’t accept referrals for diagnostic mammograms unless the referral also states that it’s for an ultrasound, too. Mother of Mary.
It’s a three-day weekend. They’re sending my referral back to my PCP, who will have to add in “ultrasound” before I can even make an appointment for a mammogram.
Friday afternoon, Memorial Day Weekend. A full week has passed so far, and I still have not been able to make a mammography appointment since I first initiated the process, which I did because I found a new lump. I’m almost certain at this point that two weeks will have passed before I am even able to just make an appointment.
Every time I think, “Forget it. I just give up,” I think about the fact that I have three sons. As I noted in the original post, I don’t *think* this is a worrisome lump, but I’m due for a mammogram in a month anyway. Even though I’m not a ball of worry about this-although I am becoming an increasingly bemused wad of frustration-I have to do what’s appropriate to guard my health because … I have three young sons. What’s baffling is how hard the people who are supposed to facilitate that are making it.
Radio silence from all medical entities since my last update, so I called Local Diagnostic Mammography Center where a woman last Friday pinkie swore to me on the phone that she would personally call my primary care physician and make sure my referral got turned around quickly.
Guess what? Here we are, a scant week later and … nope. My primary care physician has *not* turned the referral around with the word “ultrasound” added to it, and Local Diagnostic Mammography Center did *not* personally do one damned thing to ensure a quick turnaround.
So then I called my primary care physician’s office. It’s a group office with about a half dozen doctors. It’s 3 pm on Thursday afternoon. The answering service takes the call. “When do they get back,” I ask, thinking that’s a hell of a long lunch hour. “Tomorrow,” he says. “They’ve been out all day. They’re closed today.” “Is that something they just DO on Thursdays?” I ask, really wallowing in a vat of disbelief. “Nope. Just today.”
Prediction that I made that almost two weeks would pass from when I first tried to make this appointment? A little off. It will be, at the least, EXACTLY two weeks, if not far longer. WHEN DO I GET TO MAKE A MAMMOGRAM APPOINTMENT?
Today’s update: Called PCP office this morning. They said they’d sent a referral. I pressed them, and it turns out, the referral they mean was the original, the one without the all-important ULTRASOUND word on it. And then? My PCP is *out* today. I’m promised that the person I’m talking to will consult with another physician in the practice right then and get it taken care of. It’s 10 a.m.
I call back at 4 p.m. Answering service. All MDs gone for the weekend. Do these people ever actually doctor?
So then I call Local Diagnostic Mammography Center to see if they’ve received it. Scheduler-same one who pinkie swore a week ago to shepherd my referral to ULTRASOUND completion-at first says, “Nope. No referral.” She references having sent it a week ago and suggests I call my PCP. I say, “I did. This morning.” She says, “Oh. Maybe it’s in this STACK OF REFERRALS FROM TODAY in front of me on my desk.” She didn’t check all the referrals? WTF? Turns out, no. It’s not in that stack. Except how can I trust that when she didn’t even think to check it in the first place? What if she has five such stacks she hasn’t checked? What if there are referrals in some cubby somewhere she doesn’t even remember? What if she put the referrals in the trash? At this point, I wouldn’t dismiss the possibility.
So then I ask, “Can I just make my appointment, which surely won’t be for a few days, and meanwhile, the ULTRASOUND word can get added to it?” She says, “No. It’s the LAW. Can’t make the appointment without that word.” I google around. I can’t find confirmation that there is some LAW requiring that PCP referrals for diagnostic mammograms contain the word ULTRASOUND.
Then, she tries to tell me that this requirement is special to diagnostic mammograms, perhaps I don’t know that. I inform her that I’ve had three diagnostic mammograms and never, never have I run into this. Ever. In fact, the decision to perform the ultrasound was always made on the spot, after the radiologist read the mammogram.
While I’m saying this, she says, “yes, yes” dismissively, interspersing it approximately every three words I say. It is very, very frustrating. I tell her, “Saying ‘yes, yes’ like that over and over again isn’t useful.” She says, “Yes, yes. We’re on your side.” I say, “You’re NOT (‘yes, yes’) on my (‘yes, yes’) side. You are (‘yes, yes’) the one who promised (‘yes, yes’) me last week that (‘yes, yes’) you’d ensure the referral came (‘yes, yes’) back in a timely way (‘yes, yes’). That was ONE (‘yes, yes’) WEEK AGO.”
“Yes, yes.”
No. No.
Meanwhile, my peanut M&M lump sits there, unidentified and unimaged. For reasons I won’t get into, if I don’t get an appointment for the coming week, I won’t be able to have the mammogram for a month. In other words, I won’t get a mammogram for a lump I found for at least 6 weeks after I found it, even though I *called to schedule a mammogram within 24 hours of finding it.*
Thanks for posting this. Another item that will put off many women: the cost of going to your primary care physician just to get a referral. Last year I was sent a reminder and called the PCP office to say I had nothing wrong with me and could they just call/email a referral. I was told – no – I had to come in to get a referral. I did so (paying a copay) and spent all of 3 minutes while the PCP confirmed there was nothing wrong and this was just a referral. She tapped into a computer and said I was all set. Two weeks later I get a bill for $65 (my copay – at 30%) for the office visit I called the office to object to this and basically was told – tough. This is just so wrong I could cry.
So pissed. Not least of all because I’m worried about you, but also because if this is happening in a ~best case scenario — assuming you are insured, you are obviously not intimidated or overwhelmed by the labyrinthine process and roadblocking, and you are working within your culture and in your primary language, etc. — WTF. WTF. How many women give up and don’t get the care they need.
“You are working within your culture and in your primary language.” Exactly. With every obstacle, I think of exactly that.
Update: PCP office faxed over the referral with the all-important word “ultrasound” on it. Called mammogram center today. After a few more faint attempts at some more stonewalling-“but we need the films!” from the last diagnostic mammogram (I had them sent weeks ago) and “can’t find referral!” (again; oh, it was in a different stack)-I *finally* got to schedule an appointment. As predicted, it is now too late to get an appointment for this week so … I now must wait THREE WEEKS until my actual appointment. Yep. That’ll be just short of *six weeks* from when I first called to schedule an appointment for a mammogram, one I wanted to schedule because *I found a lump*. Amazing.
EDIT: WOW! The scheduler I just spoke with was so unthrilled about my saga-I have mentioned to everyone on the phone the time frame here-that she checked around and got me in for an appointment TOMORROW, instead of three weeks out. I’m so relieved. I wasn’t edgy when I started this process, but all of this runaround has really added some stress.
FINAL UPDATE: Mammogram and ultrasound acquired. All clear. “The palpable mass is not detectable on imaging.” In other words, “We can feel it, but it’s not anything to worry about.” My vote: Lipoma.