For those that missed Bedlam, it will air on PBS on April 13th at 10PM
From Bedlam- When Dr. Kenneth Rosenberg trained as a psychiatrist in the late 1980s, the state mental hospitals, which had reached peak occupancy in the 1950s, were being closed at an alarming rate, with many patients having nowhere to go. There has never been a more important time for this conversation, as one in five adults – 40 million Americans – experience mental illness each year. Today, the largest mental institution in the United States is the Los Angeles County Jail, and the last refuge for many of the 20,000 mentally ill people living on the streets of Los Angeles is L.A. County Hospital. There, Dr. Rosenberg begins his chronicle of what it means to be mentally ill in America today, integrating his own moving story of how the system failed his sister, Merle, who had schizophrenia. As he says, “I have come to see that my family’s tragedy, my family’s shame, is America’s great secret.”
Dr. Rosenberg gives readers an inside look at the historical, political, and economic forces that have resulted in the greatest social crisis of the twenty-first century. The culmination of a seven-year inquiry, Bedlam is not only a rallying cry for change, but also a guidebook for how we move forward with care and compassion, with resources that have never before been compiled, including legal advice, practical solutions for parents and loved ones, help finding community support, and information on therapeutic options.
“I thought it did an excellent job of looking at things from various perspectives and humanizing both the ones with mental illness and those trying to help them. I did think that it was somewhat skewed in the sense that the cases it presented all dealt with people who never were able to get to a sustained recovery, and that isn’t an accurate reflection of the trajectory of the entire group of people with chronic severe mental illness. I think that might make people feel a little hopeless, as even those who temporarily stabilized and were in a good place in their lives, always fell back within a few years.
However, I understand that this reflects accurately the experience of a significant number of patients, and that is what the group that the filmmaker wanted to show. It also reflected accurately the dedication of family members, and how hard it must be to see one’s loved one fall back into psychosis and chaos over and over again.
I thought what was shown about seclusion and restraint incidents in the hospital ED was sad, as I felt that they were not using this intervention as a last resort and that they could have changed their approach, as well as the ED environment itself, to make it less agitating for patients and thus less likely to trigger the kind of behavior which would require seclusion or restraint. However, I think many or most of those scenes were filmed several years ago, so perhaps things have changed there since then. I did think that one very relevant topic which it did not touch on much was involuntary treatment, whether it was used and how it helped or did not help.” A prominent psychiatrist
“One issue I had with the video is the patient management it showed seemed backward compared to our standards and practice here in Arizona. The use of restraints (the process of applying them and the actual physical restraints) gave me discomfort as I watched them failing to attempt to reassure and de-escalate the situation. Also, there was a lack of peer supports. I am also unsure why there was no mention of the use of long-acting injectables and they seemed to repeatedly use the same management with oral medications despite the fact that the strategy was clearly failing. We have many things to be thankful for in Arizona! We need to be vigilant of the growing issue of homelessness and feelings of hopelessness in patients with SMI. Always thankful for people like you and ACMI in general for the true altruism you show in making things better for the patients and the people who support them.”A prominent psychiatrist
Here are my thoughts on Bedlam:
It did a great job of explaining the history of the problem and how we are still dealing with it today
It respectfully yet truthfully portrayed some of the rawness of untreated psychosis that most people will never see
It showed some of the successes the individuals experienced (like graduating from college)
It focused more on the failures that successes and ended on a low note
To end on a high note, it could have talked about some of the improved best practices and emerging practices to better address schizophrenia such as First Episode Treatment programs for young adults aged 16-25, the success of long-standing antipsychotic injectables, and perhaps some of the newer medications that are always coming out
It did not include anyone from ACMI to discuss secure residential!! As I was watching it, I kept thinking how secure residential could be very beneficial to avoid the “churn” that Dr. Olson described. Perhaps ACMI need to meet with the Bedlam producer to develop a new documentary called Bedlam 2: A New Hope (sorry for the Star Wars reference). It could feature lighthouses, secure residential, first episode psychosis programs, new medication approaches, supportive legislators/system leaders, and interviews with people who are passionate for this population.
Enjoyed the discussion panel.CEO of a behavioral health agency
“The film was timely, realistic and at least for me somewhat hopeful. Everyone I spoke to felt it was an accurate portrayal of the system we have today.” Prominent psychologist
“I felt it was a heavy movie to watch. I can only image how it felt as former patients. I thought that the hospital did not always try to de-escalate the situation. They had – security interacting primarily instead of the hospital staff when crisis arose.” ACMI board member
“This is the second time I have viewed it and it was harder to watch this time. Very emotional.” ACMI board member
“I thought Bedlam was strong on portraying the problem but weak on solutions. That’s where ACMI comes in. We and our mission (Lighthouses and Secure Residential) are major pieces of the solution.” ACMI board member
“For me, Bedlam told a sad story powerfully in the way only film can.” ACMI board member
“I liked the way the movie followed individuals over years. That was compelling to see the decline, the toll that having a serious mental illness takes. I also liked how the movie provided insight into the life of the caregivers and impact to the care providers. Terrible (even conflicting) descriptions of the systemic issues/gaps and totally disjointed explanations of potential solutions.” ACMI board member
“Honest portrayal of the lifelong burden of chronic serious mental illness for many people. No sugar coating. Most important-it showed that when the pendulum swings too far one way (our old asylums), it can be equally destructive to slam it back the other way (our current delivery system).”ACMI board member
“As a former practicing emergency department physician, and as a parent of an adult son with Schizoaffective disease, this film was almost a timeline of my own life through the behavioral health system. Tragic at times and hopeful at other times. “ ACMI board member
“It was a very heavy movie. Not a popcorn movie.” Chick Arnold
“I personally felt the movie was well made and it depicted what it’s like for some living with a mental illness and their quest to obtain help, the people I attended with spoke to me about how they felt parts of the movie compared to their experiences years ago as well, thank you for the invitation.” Housing supervisor
“Bedlam was a powerful documentary in both its presentation of three people in LA suffering from SMI and the environments they were living in.
I had a visceral response to the first person shown, a woman, after she was brought into a psych (I think) hospital ED, exhibiting signs of mania and psychosis. She exhibited the same behavior as my son has that I have seen more times than I wish to recount. The documentary showed the three people over the five-year period it was filmed.
Numerous times when Ian was manic and we could not reach him, I would take a friend with me to do a “welfare check,” scared that he might have committed suicide, which he threatened to do many times. I would find that Ian was not there (and was wandering the streets, behaving strangely). His apartment would be like, if not worse, those scenes shown of Jane’s home. A total mess with the entire apartment floor covered. Clean clothes and dirty clothes everywhere, garbage overflowing, food growing mold etc.
Many psych meds are not weight friendly. The viewer could see Jane’s weight gain once she was on meds. George’s heft may also have been due to meds. Both of their sizes resonated with me as we have seen our son put on a significant amount of weight over the years, due to med changes, meds thrown at him each time he was hospitalized. Ian’s weight gain is both from meds and poor food choices. Our son’s mental health and stability is our primary concern. After that, we also want our son to be as healthy as he can be. He already has high cholesterol and is at risk of developing diabetes. I suspect Jane and Ian are at risk of developing those and/or significant medical issues.
From a more global perspective, seeing the appalling conditions these three individuals with SMI are living, what services they are or are not getting, and how the mental health system is so inadequate and basically screwing them. Our country is doing nowhere near enough to have them live better lives – off the streets, out of the jails, and to stop the cycling in and out of psych hospitals, jails and the streets.
Bedlam is an eye-opener for those who have little or no involvement with the SMI. I, as well as others I spoke to after the screening, noted that there was nothing said about where we go from here. That would be a good subject for the next documentary.“ACMI board members
Depression- feeling discouraged and hopeless about the future.
Low motivation, energy, and little or no enthusiasm.
Suicidal thoughts or suicidal ideation.
Rapidly changing mood- from happy to sad to angry for no apparent reason (called labile mood).
Changes in behavior associated with schizophrenia:
Dropping out of activities and life in general.
Inability to form or keep relationships.
Social isolation- a few close friends, if any. Little interaction outside of the immediate family.
Increased withdrawal, spending most of the days alone.
Becoming lost in thoughts and not wanting to be disturbed with human contact.
Neglect in self-care- i.e., hygiene, clothing, or appearance.
Replaying or rehearsing conversations out loud- i.e., talking to yourself (prevalent sign).
Finding it difficult to deal with stressful situations.
Inability to cope with minor problems.
Lack of goal-directed behavior.
Not being able to engage in purposeful activity
Functional impairment in interpersonal relationships, work, education, or self-care.
Deterioration of academic or job-related performance.
Inappropriate responses- laughing or smiling when talking of a sad event, making irrational statements.
Catatonia- staying in the same rigid position for hours, as if in a daze.
Intense and excessive preoccupation with religion or spirituality.
Drug or alcohol abuse.
Smoke or have the desire to want to smoke (70-90% do smoke) – note: this is a very typical behavior for people who do not have schizophrenia also!
Frequent moves, trips, or walks that lead nowhere.
Examples of cognitive problems associated with schizophrenia:
Ruminating thoughts- these are the same thoughts that go around and around your head but get you nowhere. Often about past disappointments, missed opportunities, failed relationships.
Making up new words (neologisms).
Becoming incoherent or stringing unrelated words together (word salad).
Frequent loose association of thoughts or speech- when one thought does not logically relate to the next. For example, “I need to go to the store to buy some band-aids. I read an article about how expensive AIDS drugs are. People take too many street drugs. The streets should be clean from the rain today, etc.” The need to go to the store to buy band-aids is forgotten.
Directionless- lack goals, or the ability to set and achieve goals.
Lack of insight (called anosognosia). Those who are developing schizophrenia are unaware that they are becoming sick. The disease damages the part of their brain that should recognize that something is wrong.
In conversation, you tend to say very little (called poverty of speech or alogia).
Suddenly halting speech in the middle of a sentence (thought blocking).
Trouble with social cues- i.e. not being able to interpret body language, eye contact, voice tone, and gestures appropriately.
Often not responding appropriately and thus coming off as cold, distant, or detached.
Difficulty expressing thoughts verbally. Or not having much to say about anything.
Speaking in an abstract or tangential way. Odd use of words or language structure.
Difficulty focusing attention and engaging in goal-directed behavior.
Poor concentration/ memory. Forgetfulness.
Difficulty understanding simple things.
Thoughts, behavior, and actions are not integrated.
Obsessive-compulsive tendencies- with thoughts or actions.
Thought insertion/ withdrawal- thoughts are put it or taken away without a conscious effort.
Conversations that seem profound, but are not logical or coherent.
Examples of delusions:
The most common type of delusions or false beliefs is paranoid delusions.
These are persecutory in nature and take many forms:
Overpowering, intense feeling that people are talking about you, looking at you.
Overpowering, intense sense you are being watched, followed and spied on (tracking devices, implants, hidden cameras).
Thinking that someone is trying to poison your food.
Thinking people are working together to harass you.
Thinking that something is controlling you- i.e. an electronic implant.
Thinking that people can read your mind/ or control your thoughts.
Thinking that your thoughts are being broadcast over the radio or tv.
Delusions of reference- thinking that random events convey a special meaning to you. An example is that a newspaper headline or a license plate has a hidden meaning for you to figure out. That they are signs trying to tell you something.
Religious delusions- that you are Jesus, God, a prophet, or the antichrist.
Delusions of grandeur- the belief that you have an important mission, special purpose, or are an unrecognized genius, or famous person.
Delusions that someone, often a famous person, is in love with you when in reality, they aren’t. Also called erotomania or de Clerembault syndrome.
Examples of hallucinations:
Hallucinations are as real as any other experience to the person with schizophrenia. As many as 70% hear voices, while a lesser number have visual hallucinations.
Auditory hallucinations can be either inside the person’s head or externally. When external, they sound as real as an actual voice. Sometimes they come from no apparent source; other times, they come from real people who don’t actually say anything; other times, a person will hallucinate sounds.
When people hear voices inside their heads, it is as if their inner thoughts are no longer alone. The new voices can talk to each other, talk to themselves, or comment on the person’s actions. The majority of the time, the voices are negative.
Visual hallucinations operate on a spectrum. They start with the over acuteness of the senses, then in the middle are illusions, and on the far end are actual hallucinations.
Disclaimer: The following symptoms overlap with many other diseases such as bipolar disorder, major depression, the various kinds of personality disorders (specifically paranoid and schizotypal personality disorders), and other problems such as brain tumors and temporal lobe epilepsy. There is no “typical” case of schizophrenia. Everyone has different symptoms. Seek the opinion of your doctor always.
Moreover, it is always essential to keep the big picture in mind. Having just a few of these symptoms does not necessarily mean that a person has schizophrenia or any other sort of psychiatric disorder. Almost all of the signs below can be present to a “normal” degree in people; it is when someone displays them to a significant degree that they can become psychiatric symptoms. Think of all of these behaviors as being on a continuum, in which the middle 99% of people displaying varying degrees of the behavior but are still within the “normal” range. The 1% of people on the outer edges have the behaviors in extreme proportion, and/or a significant proportion of the time, and that is when they can become debilitating.
A diagnosis of schizophrenia requires that continuous disturbance (i.e. debilitating symptoms) be present for at least six months, including at least one month of specific key symptoms (active symptoms: delusions, hallucinations, disorganized speech, disorganized/catatonic behavior, negative symptoms such as severe emotional flatness or apathy).
Ken Rosenberg becomes a filmmaker to show the national health crisis mental illness has become. The film delves into what is happening in LA as Rosenberg follows people suffering from bipolar disorder, schizophrenia, and other chronic conditions. The people have shown repeatedly cross the paths of ER doctors and nurses, police officers, lawyers, and prison guards, receiving inadequate, little or no care. Rosenberg depicts the gritty view of the mentally ill encounter in Los Angeles County.
Association For The Chronically Mentally Ill (ACMI) believes there is sea change going on around mental illness and what has worked and what has areas for improvement. Among the most promising changes is that SAMSHA and mental health “think tanks” as well as community-based organizations like ACMI are discussing the need for additional research on biomedical aspects of serious mental illness rather than just focusing on “stigma” or general mental health or “wellness.” Not enough research dollars are targeted to investigate the root causes of mental illness and effective treatment modalities from medication to effective interventions in housing and social supports. People living with serious mental illness like schizo-affective disorder are trying to survive this devastating biological brain illness. Often without adequate support.
ACMI is encouraged by the proceedings of the White House Mental Health Summit (Dec 2019) which will provide additional funding dollars designated towards research on Mental Illness research.
Some advocates believe that “mental health problems tend to be under-researched, undertreated, and over-stigmatized.
We need to start focusing on treatment over punishment. Research that will lead to better treatment and outcomes – measured by changes in jail and prison incarceration rates, number and length of hospitalizations, and treatment compliance over a sustained period of time. Mental health treatments remain largely inaccessible to many, especially those from lower socio-economic or disadvantaged groups. These families often lack advocates for their ill family member and can not afford private attorneys to make the system “bend” to become more patient-focused. One estimate by the Epidemiologic Catchment Area Survey reported that 40 percent of adults with severe mental illness did not receive any psychiatric care within a one-year period. Many individuals will continue to suffer from serious mental illness until we can reduce barriers to treatment access. This is a tragedy — and a likely reason for the recent tragedies in which untreated individuals living with serious mental illness engaged in acts of violence against others in the community. The National Institutes of Mental Health (NIMH), the nation’s largest funder of mental health research, has seen flat budgets since 2003, and currently funds less than 20 percent of the proposed research trials it receives. This tight funding environment discourages new researchers from entering the mental health arena and slows research progress.
Stigma is important in the general conversation to ensure parents, teachers, physicians and other primary caregivers identify the early signs of mental illness; most are present before the late teenage years.
But, importantly, in Thomas R. Insel, M.D. director of National Institute of Mental Illness directors’ message he indicates the real need for basic research.
This is promising!
If we want to offer the most effective mental health treatments, we need cutting-edge research to test those treatments and understand how they work.
We think it is beneficial for all families to submit comments asking for more research dollars target research for serious mental illness.
From the Treatment Advocacy Center- (December 18, 2019) The National Institute of Mental Health (NIMH) has a history of failing to prioritize serious mental illness in its research. Unfortunately, their recently-released five-year strategic plan draft signals their intention to continue to ignore those with the most impairing disorders.
Despite seeking public comment, the NIMH’s plan, even by the standards of federal reports, is almost unreadable. While the issues are complicated, the explanation of why they are vital shouldn’t be. However, it is not written in a way that is easy to understand or make sense of. For example, Strategy 3.3.C on page 28 reads “Enhancing the practical relevance of effectiveness research via deployment focused, hybrid effectiveness-implementation studies.”
Spearheaded by our founder, Dr. E. Fuller Torrey, the Treatment Advocacy Center has put together a comprehensive analysis of the five-year strategic plan, highlighting how it would fail those with severe mental illness. We identify sixteen concrete examples of research initiatives the NIMH should be pursuing today, initiatives that could help people with serious mental illness recover and live better lives.
Yesterday, the Treatment Advocacy Center submitted our public comment to the NIMH. However, we urge you to submit your own here. Use our comments, but also share your story of how the decisions of NIMH affect you and your loved ones. These stories are vital to help NIMH understand why their proposed priorities are misplaced.
Here are some points to consider:
The report fails to reflect the urgency of our national mental health crisis: As Dr. Torrey summarized, “Overall, I would say that this report is promising for people who plan to be affected with a serious mental illness in 2050 or beyond, but for anyone who is currently affected, the report offers no hope. I personally find this unacceptable and inexcusable.”
Where are the people who are experiencing the consequences of our failed mental health system? Except for one paragraph on the increasing national suicide rate, there is no indication whatsoever that mental health services for individuals with serious mental illnesses are an increasing public disaster. There is no mention of homelessness, criminalization of mental illness, the fact that emergency rooms are overrun with people with mental illness, or the burden of the failures of the mental health system on law enforcement.
Continued misplaced and unbalanced priorities: The strategic plan is strongly weighted towards basic brain science, with a continued strong emphasis on genetic research. It ignores the fact that the genetic research to date has been remarkably unproductive and likely to continue to be so, as described in a paper by Dr. Torrey and Dr. Robert Yolken published in Psychiatry Research in August.
You can submit feedback online via the NIMH request for information page, or mail your comments to: NIMH Strategic Planning Team 6001 Executive Boulevard, Room 6200, MSC 9663 Bethesda, MD 20892-9663
From the National Institute of Mental Health Strategic Plan- here are the four priority areas.