Posted by Maria Mangicaro
Mental Health Advocate
Susannah’s talk reveals the serious flaw in our mental health care system of how patients suffering from psychosis and mania are simply labeled with generic DSM5 diagnoses using with what psychiatrists refer to as a “Chinese Menu” approach.
This unscientific approach fails to use Best Practice Assessment standards and leaves patients at risk of unnecessary and prolonged suffering.
It has been known for several years that persons with serious mental illness die younger than the general population and recent evidence reveals that the rate of serious morbidity (illness) and mortality (death) in this population has accelerated. In fact, persons with serious mental illness (SMI) are now dying 25 years earlier than the general population. 
The failure of psychiatry to use Best Practice Assessment standards must be considered as a contributing factor in order to fight this epidemic of premature death among persons deemed “mentally ill”.
The use of generic labels for psychotic disorders also subjects patients to harmful side effects of antipsychotic medications. Patients with underlying medical conditions must face the painful stigma of being labeled a “mentally ill” person and large mental health advocacy groups promote the concept of being a life-long mentally ill person.
Psychiatrists who fail to diagnose their patients using Best Practice Assessment of Psychosis guidelines place their patients at risk of lengthy and expensive forced hospitalizations. In most cases, regardless of effectiveness, patients are responsible to pay for forced treatment.
In Susannah case, she claims her parents were adamant that her treatment take place in a hospital setting and they fought to keep her from being admitted into a psychiatric facility. She now believes her family’s advocacy to keep her out of a psychiatric hospital is what saved her life.
During her speech, Susannah states to the “untrained eye” she would have been considered a schizophrenic. She even reads out loud the DSM5 criteria for schizophenia which matched up to her symptoms.
Susannah explained that her treating psychiatrists considered her to be an otherwise healthy, normal 24-year old woman. In some of her interviews she claims, the first neurologist she saw told her there was nothing wrong with her. A psychiatrist told her she had bipolar disorder and prescribed antipsychotic medications. A second neurologist diagnosed her with “alcohol withdrawal syndrome” and prescribed different psychiatric medication. While hospitalized, her psychophamacologist diagnosed her with schizoaffective disorder, what she describes as a combination of schizophrenia and bipolar disorder.
In her TEDxTalk, Susannah admits that she was extremely lucky to come under the care of a neurologist with an excellent reputation. Her doctor, Dr. Souhel Najjar, is a Neurologist, Neurophysiologist, Epileptologist and a Neuropathologist at NYU Langone Medical Center. He is also the Clinical Associate Professor of Neurology at the NYU School of Medicine.
While the other doctors and psychiatrists ignored many of Susannah’s physical manifestations, which included seizures and high blood pressure, Dr. Najjar took that information seriously and spent a considerable amount of time obtaining information about her case from her parents.
After a month-long hospitalization and very costly testing, a very simple “Draw a Clock” test put Dr. Najjar on the path to making the correct diagnosis. This no-cost test alerted the neurologist to Susannah’s underlying condition of anti–NMDA receptor autoimmune encephalitis
For Susannah, it took only a relatively simple combination of steroids and immune therapies for her to recover from symptoms that were considered a severe mental illness.
Susannah now believes it is exceedingly important for psychiatry to adopt a greater vigilance in diagnosing patients to rule out possible neurological causes of behaviors that can be misdiagnosed as severe mental illness.
Dr. Najjar estimates that nearly 90 percent of those suffering from autoimmune encephalitis go undiagnosed.
“It’s a death sentence when you’re still alive,” Najjar said. “Many are wasting away in a psych ward or a nursing home.”
Susannah writes this about the stigma of being labeled with severe mental illness:
Another, less obvious outcome is that early on in my treatment, when I was thought to be suffering from a psychiatric disorder, my care was less sympathetic than it was later, when I was diagnosed with a neurological disease. Why is this? And how can we remove this stigma attached to mental illness? At the height of my disease, nothing distinguished me from a person with schizoaffective disorder or schizophrenia—the only difference came later: when I was cured. I don’t know how we change the systematic treatment of mental illness in this country, but clearly it needs to be rethought.
I first read about Susannah’s case on the blog of mental health advocate Pete Earley. It was shocking to realize that Pete failed to comprehend the importance of her case. Even more upsetting was Pete made a joke out of it and stated, “Susannah’s constitutional right to be crazy was clearly violated.”
Mental health advocates must take seriously the problems created by the generic use of psychiatric labels used to describe and treat symptoms of psychosis.
If we consider Susannah’s case and the decision in Wyatt v. Stickney 325 F.Supp. 781 (M.D.Ala. 1971), a key issue was that patients have a “constitutional right to receive such individual treatment as will give each of them a realistic opportunity to be cured or to improve his or her mental condition.”
Our mental health patients under observation for psychosis have the fundamental right to know their diagnosis based on Best Practice Assessment standards.
By consensual agreement within the American Psychiatric Association (Diagnostic and Statistical Manual III-revised, 1987), psychiatric diagnoses are descriptive labels only for phenomenology, not etiological or mechanistic explanation for syndromes. Thus, a psychiatric diagnosis labels a pattern of signs and symptoms, but offers no hypothesis concerning the mechanism(s) of the clinical phenomena.(Davidoff et al., 1991).
Our citizens loose their personal freedom and right to contract services when they are rubber-stamped with generic psychiatric labels based on descriptions only. Psychiatric labels create a class of people who can be legally forced into contracting the services of mental health facilities and limited providers of psychiatric services.
The “Chinese Menu” approach of using the DSM5 is an unfair and unethical medical practice that seriously jeopardizes the health, safety and welfare of the public.
Psychiatry must move towards adopting Best Practice Assessment Standards and integrative care for their patients.
Published on Dec 7, 2013
“Lucky” is how Susanna describes the fact that she is here, today, with us at TEDxAmsWomen. She remembers all the people who suffered the same before 2007, the year that the diagnosis was given a name. “Lucky” that this happened to her only 2 years after that, which meant she wasn’t put in a mental institution.