Opinion: The State of Mental Healthcare in North Carolina
by Sarah Hoffman
The views and opinions expressed in this article are those of the author and do not necessarily reflect the policy or position of the Sanford Journal of Public Policy.
I was diagnosed with a panic disorder and Bipolar I during my sophomore year of college. The National Institute of Mental Health defines panic disorders as episodes that “occur out of the blue” and are “characterized by unexpected and repeated episodes of intense fear accompanied by physical symptoms.” NIMH defines Bipolar Disorder as involving “clear changes in mood, energy, and activity levels.” Bipolar I uniquely involves“ manic episodes that last at least 7 days [or] manic symptoms that are so severe that the person needs immediate hospital care.” Bipolar I also usually involves depressive episodes that typically last at least 2 weeks, and “episodes of depression with mixed features (having depression and manic symptoms at the same time) are also possible.”
My first manic episode was in the fall of 2012. The trigger: an SSRI prescribed by my student health center to treat symptoms of depression. The counselors were sure I was experiencing situational depression following a break-up—apparently common for college students—and they thought some time on an antidepressant would be the cure.
Presumably, none of the people I saw at the student health center were trained in psychiatry. I say “presumably” because nobody asked whether I had a family history of depression or bipolar disorder. I say “presumably” because the doctor told me cynically, “you don’t look depressed” as she wrote out the prescription. But, I didn’t know any better. I knew I had a family history of bipolar disorder, but I didn’t understand the significance.
Two days after I began taking the SSRI, I had a panic attack in the middle of the night. I had never had a panic attack before and literally thought I was going to die. My roommate drove me to the ER where I waited several hours to see a doctor. By the time I actually spoke to a doctor, my physical symptoms had dissipated. He told me that I had an “adverse” reaction to the SSRI and sent me home.
My first manic episode was triggered that same night. During the day, despite only getting a few hours of sleep per week, I was full of positive energy. I felt powerful, intelligent, superior to my peers. At night, I tried my best to distract myself from sinister hallucinations and suicidal thoughts. I walked around campus for hours. I watched endless hours of lighthearted shows on Netflix. I started smoking cigarettes. But nothing helped. I would call my mom when my hallucinations felt particularly real. My mom would spend as much time as I needed, at any hour of the day, on the phone with me. And, soon after my episode began, she scheduled me an appointment with a psychiatrist.
I had excellent health insurance and I saw a doctor immediately. She was an exceptional provider and spent hours speaking with and evaluating me. She gave me a list of lifestyle changes I could make that would potentially help—exercise, proper diet, etc. She prescribed medication for my anxiety at our initial appointment and had me fill out mood charts for a couple of months before she prescribed any other psychiatric medication. I emailed her frequently, and she wrote back within hours. I wrote to her once that although I was not feeling better, it was reassuring to know I had a legitimate doctor I could talk to.
I would go on to try several medications and see many other specialists over the next months. I saw out-of-network doctors and paid for medications that didn’t yet have generics—$1,300 for a month’s supply. I developed a good idea of the illnesses I had and my symptoms. And, while I was still fairly miserable, it became more manageable. I began to do better in class and could sleep each night.
The exception to my very gradual improvement came in February of 2014. And it was at that time that I first came into contact with the public mental healthcare system in North Carolina.
On the Monday after the Superbowl, I began having intrusive, suicidal thoughts. I didn’t want to die and was scared that I would hurt myself against my will. I called campus safety, who referred me to a health crisis center that sent someone over to evaluate me. I think the representative was a volunteer and I truly believe he was trying his best, but his evaluation was arduous and unhelpful. The process consisted of going through thirty different forms over the course of two hours. I was not allowed to fill them out myself, and much of the time was spent dictating my address and listing medications. Eventually, he brought me to the local hospital and spoke to the staff on my behalf. The staff put me on suicide watch.
The hospital had me strip, took my possessions, and put me in a small room with a door and a tiny window—like what you would see in a movie. I sat in the room for a while and, after a lot of back-and-forth, I convinced the guard to let me take my prescribed medications. Eventually, I was moved to a bed in the mental hospital wing, which was closed off from visitors.
The wing had about fifteen rooms with beds. There was a phone, but the staff controlled all incoming and outgoing calls. Except for the occasional rounds, the staff stayed in inaccessible rooms and talked to patients through glass panes. Shortly after my arrival, I was led to a room where I had a teleconference with a psychiatrist. She asked me a few questions, and I told her I had bipolar disorder—it seemed like an easy explanation and I wasn’t looking for long-term care. She quickly diagnosed my suicidal thoughts as symptoms of bipolar depression.
Around 4:00am a nurse came by my room and offered to get me something to help me sleep. When she had not returned forty-five minutes later, I went into the common area to find her. “Why would I give you anything to help you sleep!? It’s morning now, you don’t need to be sleeping.”
The woman across the hall from me didn’t leave her room while I was there. She read a book, and she slept. The only other woman in the wing appeared to have some developmental differences, and she told me her name was “Sarah” too. Sarah spent a few hours moving the cushions around in vacant rooms, increasingly irritating the staff.
Later that morning, after asking several times about where I was going to be transported, I found out that I and the two other women were going to be taken to a hospital that was about an hour-and-a-half away. While I was upset, the other Sarah was excited— “I’m going home today!” Sarah told me she continuously admitted herself into psychiatric wards because being back in hospitals felt like being “home.”
I had not read about the mandatory 72-hour holding periods that follow hospital admissions for suicidal thoughts, and I was pretty upset. I already had doctors and diagnoses and an excellent health care team—this wasn’t a type of care that I wanted or needed. I had been seeing a nationally renowned expert in the field before admitting myself into the hospital—a reflection of my privilege. The psychiatrist who met with me that morning knew of my doctor. He agreed with my assessment of my needs and told me that, although technically against the rules, he was going to discharge me to my parents that day. “You won’t get good care at the hospital you’re going to. You will be much better off seeing your own doctor.” I was, and am, grateful for this doctor—he kept me from having an experience that would have undoubtedly exacerbated my mental health issues. My parents met me outside the hospital thirty minutes later and took me home.
Truthfully, I was not looking for medical care when I reached out for help. I was just afraid I would hurt myself and wanted to be monitored to ensure my safety. In that sense, I was successful—I got what I needed. And, while it came at a cost, my privilege lowered that cost considerably. I had to argue with nurses and guards to get my prescribed medication on time and make phone calls, but I was listened to and believed. And when my well-known psychiatrist called the hospital, he was taken seriously. I was a calm, collected college student with enough medical connections to get me out of a difficult legal process. It’s not lost on me that my brief experience with public care in North Carolina was different than what most others experience—due in large part to all of the resources available to me outside the scope of what the state provides.
After observing how some of the staff treated individuals in the ward and how many of the procedures were conducted, I developed the will to change public care in this state. I spent months learning about the history of mental healthcare in North Carolina, trends in funding, and the processes the average person has to go through to receive help. I was left with a picture of a grim—and increasingly worsening—state of care.
North Carolina delivers mental healthcare primarily through Local Management Entities – Managed Care Organizations (LME-MCOs) and inpatient treatment facilities. Currently, seven LME-MCOs and three hospitals service the entire state. Even though the LME-MCOs are the primary—and only, for many—source of public mental healthcare, the state continues to cut millions from the budgets every year. Medicaid is also a primary support for state mental healthcare services, and the state’s decision to not expand it under the Affordable Care Act was yet another blow to the system. On top of all of this, as the government has contracted with private companies, LME-MCOs have increasingly emphasized services based on profit rather than care. Beyond limiting the wellbeing of North Carolinians, my research revealed a relationship between the dwindling care resources in the state and the prevalence of mental illness in the criminal justice system. For instance, jails across North Carolina have reported that 50-70% of their inmate populations have mental illnesses.
In short—North Carolina has a statewide mental healthcare crisis. And, as I hope has been revealed through sharing my personal experiences, mental illness affects every facet of one’s life. It changes the way you perceive the world. Beyond producing serious physical symptoms, it may limit basic daily activities for months or years on end. At best, it is unpleasant and at worst, it is traumatic. There are many personal barriers people experience in attempting to access care—geographical and financial limitations, stigma, lack of education about symptoms and treatment options, and so on. The state of care in North Carolina only exacerbates these obstacles.
It is a failure of our society that only some people have the chance to heal and receive quality care for often-lifelong mental health issues. It is unacceptable that recovering from mental illness in North Carolina is a privilege afforded only to those who can pay. A person’s chance of recovering from symptoms of mental illness should not depend on their socioeconomic circumstances. North Carolinians deserve better—people like me and Sarah deserve better. We all do.
Sarah Hoffman is a first-year at Duke’s Sanford School of Public Policy and second-year at the University of North Carolina School of Law focusing on the intersections of mental health and the criminal justice system.