In today’s mental health care, the patient is always coming up against the system. There is a sharp, painful dichotomy between the nurturing feeling of an appointment with a trusted doctor, therapist, or social worker, and the iron-clad unreasonable laws of the mental health system itself.
I’ve had a couple weeks of butting heads with the system, and I have some good examples to illustrate my point.
But, first, I need to explain a central concept of mental health care: compliance. Compliance means exactly what it says it means. A mental health patient who is compliant takes all of their medications on time, every time; a compliant mental health patient arrives on time for every appointment. A compliant mental health patient gives 48 hours notice if s/he must cancel an appointment. A compliant mental health patient will always reschedule a cancelled appointment. These are the terms under which the patient may receive services. In many cases, my own included, non-compliant patients may be denied services. So, sadly the patients who most need help, but are not in a position to be very compliant can find themselves back at square one. I am glad to say that where I receive my services seems to be very flexible about accommodating patients’ needs and allowances appear to be made for people who are going through bad times.
However, in general, the terms of compliance do not offer flexibility. Even if your medication is making you sick to death, you take it, then whine about taking the medication and being sick to your therapist. Even if you live miles below the poverty line and rely on a cantankerous, un-inspected car to get to appointments, you go-even if you get a ticket you can not afford, you go. If the doctor gives you instructions on how to get your prescriptions refilled which deviate from the standard protocols, you comply, even if you come smack up against a brick wall of baffling administrative process. Mental health patients are often deemed worthy or unworthy to receive help based on their compliance.
Objectively, this seems fair. It seems to reward the patients who are working the hardest to get better. Unfortunately, the reality is quite different. In practice the system is nearly impossible to navigate for me, and I know that, comparatively speaking, I’m pretty high functioning. And nearly every other visit, I see patients at the breaking point from frustration, from fear, from poverty, or from pure D bafflement over how the system works. And remember, I just commended the system where I receive services for its outstanding flexibility. The realities elsewhere are much harsher.
Here are my personal examples to try to make this less abstract for you:
At my last visit with the psychiatrist, over two weeks ago, the psychiatrist ordered me to see my regular MD, to hand carry a copy of a recent EKG to the MD and get a clean bill of health before he would refill my prescriptions and add a new prescription for recurring nightmares. Seems reasonable enough. I was told to call the RN at the psychiatrist’s office to arrange my refills after I had seen the MD.
When I got to the psychiatrist’s front office, the trouble started. They could not find my chart. After they rooted and rammed all over the office, I was told that my chart had ‘probably’ been sent to another office to be ‘audited.’ So I had no copy of the EKG to carry to my MD, and now I had to worry about my missing chart. That chart is full of sensitive information, and I’m uncomfortable that 1)The System had NO idea where my chart was, and 2)The System has the authority (somehow) to send my chart ‘somewhere else’ for some person unknown to ‘audit’ and it is unclear what they are auditing the chart for. Not gonna lie here, I’m losing sleep over that chart still.
After my visit to my MD proved that I had a clean bill of health, I attempted to call the psychiatrist’s RN to renew my prescriptions. The front office will not allow me to speak to the RN on the telephone. All I may do is to leave a voicemail, and hope the RN will call. Two weeks later , three voicemails later and the RN has not called me, and my refills have not been submitted. I do not blame the RN. The message addressed three or four detailed fussy details applicable to different prescriptions. If I could have simply TALKED to her, where she could ask questions, and I could answer them, it could have been sorted. Instead she got the ‘term paper equivalent’ of a voicemail. The front office informs me that the RN will not call, and that to get my refills, I need an appointment with the psychiatrist. I HAVE an appointment with the psychiatrist for when he wants to see me-in the latter half of March. But my prescription will run out in two weeks. This is called being between a rock and a hard place.
Example Number 2:
If I need to cancel an appointment with my therapist, I am expected to give a minimum of 48-hours’ notice, and to reschedule for the same week. Seems simple enough, right? In order to be seen for the aforementioned appointment with the MD, I needed to reschedule my therapist appointment. So I called. The Front Office-remember them? told me that my appointment had been cancelled, and that I could not reschedule as I had an appointment scheduled for the following week. (Actually it was today.)
Imagine my surprise last week when my therapist called to confirm the appointment I had cancelled four days prior. She had not been told that I called and cancelled, that I had not been allowed to reschedule.
So, here I sit. For the first time in my life really taking my recovery seriously, finally recognizing that getting better might just be my life’s work. And here I am being non-compliant on several fronts. And struggling not to be. Seeking a way to point out the brokenness of the system without sounding like a paranoid crazy person.
These systems are set up by the government, or by the hospitals ostensibly to protect some of society’s most fragile members. The office where my therapist and psychiatrist are located is an old school. It is a rabbit warren of offices that also serve the WIC program to provide nutritious foodstuffs to pregnant women, nursing mothers and small children. The same building houses a food pantry to feed the hungry. The same building provides free meals and enrichment activities to senior citizens living in poverty. And as I said, the building is a rabbit warren. Offices seem randomly placed, and signage is often minimal, unhelpful, or unclear. People are frequently simply not in the proper place. People do try to help, but not everyone knows where everything is, and sensible sounding advice can get you more lost.
And every other time I’m in there, or nearly every other time, someone is flipping out-either angry, or sad, or hurt, or frustrated, or confused. And I know that they serve people who have a high level of crisis, and I know that MH/MR clientele can be reactionary…but it can be really frustrating and stressful to be there even if you are not in crisis or meltdown mode.
It is not the people who provide the actual services-they are kind and compassionate people who go above and beyond to help. It is this system of efficient office personnel with their keyboards, and their clipboards. And their protocols of how to deal with every situation-protocols that are blindly followed instead of taking a moment to listen, then responding accordingly. The secretaries are nice people, but they are, shall we say…hidebound? These secretaries who are so quick to hang up the phone, so quick to mouth the words, ‘you can’t,’ ‘it isn’t possible,’ ‘we are not authorized to…’ Those words are automatic, they do not check, they simply apply the system’s walls.
It is not the end of the world. By enlisting the help of my therapist, I was able to see the RN in person, and all should be well with my meds. The therapist was also not surprised that she did not get word that I had cancelled my appointment. It was not the end of the world, nobody died, nobody cried. But it was stressful, and it was very frustrating. And I have a very real world fear of running out of all these pills.
Since I began my journey with mental health care over thirty years ago, the care has increased immeasurably in competence and in compassion. It is time that the systems that control and administer the caregiving also move into a more functional and compassionate model.