Mental Health No-care

mental health

My international readers may want to sit this one out, as it is basically a rant about the poor access to mental health treatment in the United States.

I am not a fan of complaining to “let off steam” and then going back to the previous behaviors without working to affect positive change. So be assured, dear readers, that I will be lobbying my elected representatives and voting my conscience on these issues in the future. The thing I can do right now is tell this person’s story and educate others about change that needs to occur. Maybe I can influence your vote too.

My friend noted a worsening of her mental health a year and a half ago. She went to her primary physician who prescribed some medication. My friend took it for a short while, but felt it did nothing to help her and stopped taking it. The physician may have told her that it takes awhile for some medications to be affective, he may not have. Either way, my friend was unaware of the need to stay on the medication for some weeks before expecting some effect. There was no follow-up from the physician’s office.

In the following year, my friend’s mental health deteriorated to where she could no longer hold a job. So before she was only mentally ill, and now she is mentally ill without health insurance. In July of 2018, she made an appointment with the community supported mental health clinic in her rural county. Because they were/are short-staffed (i.e. they have an open position for a psychiatrist and have for almost a year) the earliest appointment they could give her was in August, five weeks in the future. She took the appointment and asked that if someone cancelled, that her appointment be moved up.

She got a job at a fast food restaurant (small income, no health insurance) and when the week of her August clinic appointment came up, her boss scheduled her to work that day. She didn’t want to tell her boss that she had an appointment at the mental health clinic, so she rescheduled her appointment, again five weeks in the future, now the first week of October.

Labor day (that was September 4th, for any international readers who persisted this far) my friend was taken to the ED for erratic behavior, tested for illegal drugs (results: negative), counselled by a social worker (“you should take the medication that the primary doctor prescribed”) and discharged to the community psychiatrist who had not seen her yet.

During the first week of October, my friend’s erratic behavior worsened. She cut herself with a knife and was found confused, wandering near a highway. The police took her to the ED and she was hospitalized for a week. So, now she has missed her community psychiatrist appointment and still does not have health insurance. Plus she has a bill for a week of hospitalization. She is discharged to the community mental health center that still has not seen her as a patient. Oh, and the hospital staff did not make a post-hospitalization appointment for her. I did that when I got involved with helping her negotiate things after her hospitalization. That appointment is for early December, because they are still short a psychiatrist.

My friend lost her fast food job when she was in the hospital, but she is able to secure a very part-time job (16 hours per week, at $9.25 per hour) after her discharge. She starts getting hospital bills for thousands of dollars and her paycheck is not enough to pay her rent. These bills upset her so much that at first she just throws them in the trash. I convince her to save them for me and I will help her deal with them.

Having worked in the health care system for decades, I am aware of the possibility of charity care, which is basically forgiveness of the debt, of someone that the hospital is not going to be able to collect from anyway. My friend meets this scenario: she has no assets and disabling mental illness. She doesn’t make enough money to pay for rent and food. They can dun her from here to Antarctica, but there is no blood to be had from this turnip.

I throw myself into filling out these charity care applications. Because there is not just one. There is one for the hospital, and one for the psychiatrist’s group, and one for the ED pathologist’s group and one for the service that read her EKG in the ED…you get the idea. There are ten discreet bills that I fill out charity care applications for or negotiate a reduced rate for my friend. And it works. $30,000 of bills becomes $952. Which she still can’t pay…but her family is willing to assume some of the costs.

The December appointment got cancelled by the clinic because they called my friend’s phone to confirm the appointment and got no response. My friend is not paying attention to her phone (again–disabling mental illness) and does not have voicemail set up. When I visit to take her to the December appointment, the phone is not charged, may have not been charged for days. I didn’t know the December appointment was cancelled, so when my friend and I show up and are told that there is no appointment that day for her, I explain that she doesn’t answer her phone, due to her illness. They ask her permission to add my phone to the contact list. She grants it.

Here is where my rant gets ugly. I get the importance of HIPPA privacy issues. Especially regarding mental health, which is so stigmatizing, because people do not understand it.

But it is a frigging Catch-22 to expect someone that can’t even hold a fast food job due to their mental illness to negotiate the labyrinth that is mental health “care” in this country.

So, because my friend allows the mental health clinic to put my phone on their “okay” list, we are able to get a new appointment (remember, my friend has not yet seen the community psychiatrist) in January 2019. And because they have my phone number, the day of the appointment they call me to cancel it, as the “psychiatrist will not be in the clinic today.” And I go off on the poor support staff person who gives me this news. Not in an ugly way. I was exceedingly polite. But I tell the support staff person that my friend has been trying to see the psychiatrist since August 2018 (six months ago) and that she has been hospitalized in the interim and without care the entire time, except for when she was in the hospital.

And the office support staff person takes pity on us and puts me on hold for about 5 minutes and when she comes back has worked some kind of bureaucratic magic and offers us a visit with the nurse. I grab it like a life line. It is a clinical appointment in the bowels of the mental health center and I think that it is an entry ticket. My friend is less than enthused. She says, “I really don’t want to come back to this place any more. They can’t help me.”

We go to the nurse visit. As the nurse looks at his computer and asks the questions imprinted there on the software: Are you sleeping okay? Are your taking any recreational drugs? Are you thinking of hurting yourself? I interrupt him. “Let’s ask some open-ended questions.” “That is for the psychiatrist,” he says. Oh yeah, I think…the psychiatrist that we can’t get access to. So I ask my friend, in front of the nurse, “How much time do you spend in bed each day?” (answer 20 hours) “How often do you leave your apartment?” (answer 2-3 times per week) “How many times a week do you have interactions with people outside of work and buying food?” (answer not many, maybe one.)

My eyes are filled with tears as this truncated version of a life is described. Before her illness, my friend was a creative and brilliant person. She played multiple instruments and wrote music. The nurse pays attention (thank God) and instructs my friend to pee in a cup to test for drugs. When the drug test is negative, we are ushered in to a teleconference with the elusive psychiatrist.

This is the holy grail. After six months of appointments, we have a video conference with the person who can give us access to the system.

She asks the expected questions. And gives the textbook answers. My friend needs medication. My friend needs a guardian to make her take the medication. My friend is not buying it.

We leave.

My friend is in limbo. She is not employable at this time. Her family can support her for a bit, but they do not have unlimited resources. The medication that can make my friend functional can not be forced on her. The resources available to her without her taking the medication are her family and friends.

There are many unknowable things. Here is what I do know: I love my friend. I will help her to the best of my ability. I will support people and governments that do research on mental illness. And I will do my best to convince you to do the same.

15 thoughts on “Mental Health No-care

  1. Jane Hall says:

    Mental health is a pressing issue. Everyone but me in my family is bi polar and I am the main support system. My two children are compliant and want to get better (and have gotten better.) My husband fought the medication for many years but he finally surrendered and now he is much better. I am like you – I never gave up getting them the things they needed. If a person with mental illness doesn’t have an advocate, he/she is screwed. Very frustrating because the drugs available these days are incredible – they restore people to their true selves. Keep at it – your friend is lucky. Reach out to NAMI – they are helpful.


  2. Lou Phillips says:

    Fawn, I’m so sorry that your friend has had such difficulty. While it’s wonderful that you are there for her & understand the complexities of the system that is (basically not) serving her needs, your narrative brings to the fore the painful isolation of those with mental illness. Thank you for being there for your friend. So many don’t have a friend who can help.


    • Fawn says:

      Thank you. One of the worst aspects of mental illness is how it isolates those that suffer with it. And secondarily, how it isolates those that care for those who suffer with it.


  3. Anne says:

    You are a wonderful friend. Please check to see if her community has a council on aging, they may have ideas for resources and programs she would qualify for. Has she applied for Medicaid? She may need a disability determination from social security first. Some states have a Medicaid waiver program specifically for the elderly, disabled, and mentally ill which includes a nurse and social worker team. Some participants can work a limited number of hours a month. The waiver program can provide in home care including PCAs (med reminders, housekeeping, personal care), life coaches, medical transportation, and private duty nursing or pay for assisted living. Talk to her local office of public assistance. Best wishes and care for yourself as well!


  4. Elizabeth says:

    Fawn, I’m so sorry about your friend. This is hard stuff. My family has suffered greatly from mental illness and the difficulty in getting treatment. Agree with you that it is an extremely difficult problem. Many people in prison are there because of lack of mental health care. It’s a terrible situation. Agree with everything you say.


    • Fawn says:

      Thank you, yes. And many people are homeless because of mental illness. And the balance between self-determination and the possibility of a somewhat normal life (taking medications) is difficult and problematic and likely does not have a single solution.


  5. Elizabeth says:

    PS During a difficult time, I once joined a support group that was part of NAMI, as a relative of someone with mental illness. It was extremely helpful.


  6. Adrienne says:

    Similar issues here -lack of psychiatrists in NZ Luckily we don’t have hospital bills as we have a free public system. Plus our sick pay is not bad.
    I once tried to get a crisis team to come and help a young single Mum with a new baby (her parents were deceased and her brothers at a loss as what to do) I was concermed for both their safety. When they refused because it was a half hour drive for them and they didn’t think their was any danger I posed this question to them. ” In a court of law when the judge asks you why didn’t you attend what will be your answer ? If she harms herself or her baby today?” They arrived 30 minutes later. She was later diagnosed to have bipolar.
    Hopefully you are able to help your ffriend and I think it is wonderful that you are a true friend for her.
    I wish you both all the best.
    And I agree with the statement about the homeless and prisoners definitely a lot of them with mental health issues. The system seems to have forgotten its legal “duty of care”!


    • Fawn says:

      Good for you for finding the correct questions to motivate your crisis team. I find the barriers to access of care so frustrating and infuriating. People with mental illness need help, not more obstacles thrown in their way. Average daily problems are challenging enough with mental illness.


Leave a Reply

Fill in your details below or click an icon to log in: Logo

You are commenting using your account. Log Out /  Change )

Google photo

You are commenting using your Google account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s