Category Archives: Parenting advice

“3 Lessons from the Gus Deeds’ Story” – A Psychiatrist Takes on America’s Failed Mental Healthcare Delivery System

By Shaili Jain, MD
Posted: February 6, 2014 on PLOS BLOGS, Mind the Brain 

From “60 Minutes,” CBS Television, January 26th, 2014

Creigh Deeds: There’s just a lack of equity in the way we as a society, and certainly as a government and insurance industry, medical industry, with the way we look at mental health issues.

Scott Pelley: Don’t want to fund it. Don’t want to talk about it. Don’t want to see it.

Sen Creigh Deeds on 60 Minutes

Creigh Deeds: Absolutely. That– that’s exactly right. But the reality is, it’s everywhere.

If inadequate access to mental healthcare in the US is a disease, and I would argue that it can certainly be seen that way in terms of the toll it has taken on American society, then medical school did next to nothing to prepare me to understand its causes; or, to deal with them. After 15 years of treating thousands of patients with psychiatric disorders, I have long struggled to concisely understand and articulate the confluence of factors that determine why my patients do (or do not) have access to mental healthcare.

Recently, whilst watching 60 minutes all that changed. From the story of a young man named Gus Deeds, a clear and concise picture emerged of cause and effect, depicting the factors that largely determine whether a patient in need of mental health care is likely to receive that care. 

In this segment, Scott Pelley interviewed Virginia State Senator, Creigh Deeds, about his son Gus, who was 24 years old and had been living with serious mental illness.  His struggle culminated, last November, in a tragic ending. The Deeds’ predicament with their son was echoed by other family members of mentally ill children and adults who were also interviewed for this segment.

I was deeply saddened and perturbed by the story and although I had never met any of the people involved and had no inside knowledge of the situation, Senator Deed’s narrative was all too familiar to my ears as a litany of causes for an avoidable tragedy : inadequate mental health resources; resistance to care by the patient; additional obstacles presented by insurance companies, and fragmented treatment options.

Watching the interview, my head reverberated with all the questions I had asked myself when attempting to provide care for patients with serious mental illness.

These were the types of questions that plagued me during the earlier days of my career.  Why am I not able to stop them falling through the cracks in the system? Why do I have to spend so much time persuading insurance companies to pay for their basic care? What am I doing wrong? What can I do better?  Why does the opinion of their loved ones not seem to count?

The causes behind inadequate access to mental health care in the US must be described with a terminology not taught in medical school. They hail from different worlds than the one in which I was trained: the worlds of law, healthcare policy, sociology and the insurance industry.

Gus Deeds and Craig Deeds, 2009

Gus Deeds and Craig Deeds, 2009

If this situation is going to change, the Gus Deeds story provides a tragic, teachable moment for all Americans.

Here are 3 key lessons we can all learn from what happened to the Deeds family.

#1 Despite reforms, mental health care services are inadequate or nonexistent to large segments of American Society

 Access to mental healthcare starts with the premise that, if services are available and there is an adequate supply of services, then the opportunity to obtain health care exists, and a population may ‘have access’ to services. Unfortunately, this assumption of adequate supply cannot be made with regards to services provided by mental health professionals.  There is a shortage of mental health professionals in the United States, And the situation is particularly dire in rural and underserved parts of the Nation.  Add to this the fact thatfunding for community resources such as inpatient psychiatric beds and long-term behavioral health facilities has been shrinking for decades and it is not hard to imagine why the issue of access has become problematic for many who are in urgent need of psychiatric attention.

# 2. Because of stigma and denial surrounding mental illness, patients who most need care don’t always seek it

Stigma can be societal and manifest as discrimination towards people with mental health problems. A response from one of the other parents interviewed by Pelley, says it all: When Pelley asked her what the difference between being the mother of a child who has mental illness and the mother of a child who might have heart disease or cancer was, she answered with one word. Sympathy.Predisposing factors such as patient race, age, and health beliefs also influence an individual’s decision to access mental healthcare. Specifically, in the case of those living with serious mental illness, it is not uncommon for the patient to deny that he/she is ill and, therefore, think that they do not need help or medical treatment, i.e. they choose not to access mental healthcare. This denial brings with it a layer of complexity to interactions between mental health professionals and the patients they serve for, unlike many other illnesses, our patients may hide or not fully disclose essential aspects of his/her symptoms for fear of the consequences of such disclosures.

Another layer of complication is that federal and state laws, surrounding the involuntary hospitalization of individuals with mental illness, whilst designed to protect patient’s rights, often leave loved ones and mental health professionals who understand the patient and their illness with no voice, and minimal sway and influence over decisions that get made in courts. This situation emphasizes why it is so important that mental health professionals have the necessary time to carefully evaluate patients; be able to provide them with the continuity of care they need so that they can, eventually, develop a trusting relationship with their patient.  Often, it is through this trust that some aspects of denial can be challenged to ensure a better outcome for the patient. And this brings us to the next lesson

#3. Current insurance policies create barriers to patient access and encourage providers to offer reductionist mental health care services

The issues surrounding access to mental healthcare are further compounded by discriminatory, and often illegal, barriers to mental health and addiction services imposed by the health insurance industry. One of the most consistentdebates that have raged in the psychiatric community, since the advent of managed care, has surrounded such insurance company policies and procedures.

Professional organizations have argued (successfully) that such policies appear to be designed to encourage psychiatrists to provide services that are reductionistic (as they are less time consuming and hence less expensive) and discourage approaches or treatments that: take more time; preserve continuity of care and build trust between patient and the professional caring for them. Americans with mental health disorders have been routinely discriminated against when they are required to pay higher copayments, allowed fewer doctor visits or days in the hospital, or made to pay higher deductibles than those that apply to other medical illnesses.

Whilst the signing of the 2008 Paul Wellstone and Pete Domenici Mental Health Parity Act has been viewed as breakthrough legislation to combat this discrimination it is important to note that the Act does not require employers to offer mental health or substance use disorder benefits, only that IF they are offered they must be offered on par with medical/surgical benefits. From 2014, under the Affordable Care Act, new individual and small group plans in and outside of the mandated insurances will be required to offer coverage. Barriers to the effective implementation of such requirements remain to be seen.

If a picture (in this case a 20 minute segment of TV news reporting) is worth a 1,000 words (in this case a 5,000 research or sober policy document) then this 60 minutes segment is that picture. I would encourage anyone with an interest in mental healthcare to watch it.

http://www.cbsnews.com/news/mentally-ill-youth-in-crisis/

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This work, unless otherwise expressly stated, is licensed under a Creative Commons Attribution 3.0 Unported License.

About Shaili Jain, MD

Shaili Jain, MD serves as a psychiatrist at the Veterans Affairs Palo Alto Health Care System, is a researcher affiliated with the National Center for Posttraumatic Stress Disorder and a Clinical Assistant Professor affiliated with the Department of Psychiatry and Behavioral Sciences at the Stanford University School of Medicine. Her medical essays and commentary have appeared in the New England Journal of Medicine, the Journal of the American Medical Association, public radio and elsewhere. The views expressed are those of the author and do not necessarily reflect the official policy or position of the Department of Veterans Affairs or the United States Government.

Why Mental Illness-Focused Gun Control May Be More Harmful Than Helpful

I’ve republished a Speaking of Medicine (PLOS Medicine) blog post I think you’ll find of great interest. In it, Sara Gorman explains the risks of increasing stigma and discouraging treatment, compared to other evidence-based screening factors, e.g. a record of domestic violence to deter gun violence.

By Sara Gorman
Posted: July 31, 2013

In the aftermath of the mass shooting earlier this year in Newtown, Connecticut, debates have been raging in the U.S. about what steps to take to prevent such tragedies in the future. In particular, policy officials and the public alike have been pondering whether more stringent controls on potential gun buyers and gun owners with mental illness should be implemented and what these controls might look like. Shortly after the Newtown shootings, Senator elect Marco Rubio called for guns to be “kept out of the hands of the mentally ill.” In a more extreme statement, the National Rifle Association (NRA) suggested an “active national database of the mentally ill.” A recent study by researchers at the John Hopkins Bloomberg School of Public Health found striking similarities in the opinions of gun-owners and non-gun-owners when it came to restricting the ability of people with mental illness to own guns. 85% of all respondents to the survey supported requiring states to report people to national background-check systems who are prohibited from owning guns because of a history of being involuntarily committed or being declared mentally incompetent by a court. Most respondents, whether gun-owners or non-gun-owners, were resistant to allowing people with mental illness to own guns. Clearly, the provision of tight restrictions on potential gun owners with mental illness is an unusual arena in which gun-owners and non-gun-owners can agree.

There is no question that guns pose a potentially serious problem for people with mental illness. Some forms of mental illness can be associated with heightened potential for violence, but, more importantly, the risk for successful suicide among depressed persons with guns is much higher than the risk for those without guns. Nevertheless, are gun control efforts that require the names of people with mental illness to be kept in a national database such a good idea?

The truth is, we have to be much more careful about gun control efforts that have the potential to target people with mental illness. There are two main reasons to approach these kinds of laws with a healthy dose of caution: one reason is that gun control efforts focusing on mental illness have the potential to exacerbate public stigma about the potential violence associated with mental disorders; the second reason is that gun laws that in particular involve collecting the names of people with mental illness in national databases have the potential to deter people from seeking the care they may desperately need.

Ample evidence has suggested that stigma and discrimination against people with mental illness is often correlated with perceptions that people with mental illness are inherently violent. People who believe that mental illness is associated with violence are more likely to condone forced legal action and coerced treatment of people with mental illness and may feel that victimizing and bullying people with mental illness is in some way justified. The idea that mental illness and violence are closely related is quite common. A 2006 national survey found that 60% of Americans believed that people with schizophrenia were likely to act violently toward another individual. Even so, research has repeatedly established that psychiatric disorders do not make people more likely to act in a violent manner. Gun laws targeting people with mental illness are likely to worsen the perception that mental illness and violence go hand in hand, and, as a result, stigma and discrimination are likely to be exacerbated.

Gun laws targeting people with mental illness may in some instances save lives. Successful suicides, or even suicide attempts, might be avoided, for instance. On the other hand, in addition to perpetuating a stigmatizing belief that people with mental illness are dangerous, gun laws that focus on people with mental illness might involve measures that deter people from seeking psychiatric care. If people are afraid that the government and other parties will have access to their confidential mental health information, they may be much more reluctant to seek help in the first place. In the end, this kind of deterrence could cause more harm than good, not to mention that increased stigma and discrimination also often lead to a decrease in help-seeking behaviors.

It is true that the U.S. mental health system is in need of reform and that strategies to detect people in danger of hurting themselves or others earlier are desperately needed. Even so, it is difficult even for mental health professionals to predict the future violence potential of their patients. Furthermore, it is not only misguided but also potentially harmful to focus gun control efforts on people with psychiatric disorders. What’s more, these kinds of efforts will probably make very little difference in the homicide rate in the U.S. It would be more worth our while to focus gun control efforts not on mental illness per se but perhaps more importantly on alcohol abuse. The association between alcohol abuse and gun violence is convincing. As a result, in Pennsylvania, for example, people who have been convicted of more than three drunk driving offenses may not purchase a gun. Keeping guns out of bars and other drinking establishments is also probably a wise move. Doing background checks fordomestic violence is also a useful measure in reducing gun violence in the home. As the U.S. reconsiders gun control legislation, it is important to recognize that some measures might do more harm than good. Paying closer attention to scientific evidence and remaining focused on the most effective strategies for targeting those most likely to commit violent acts must be the strategy going forward.

 

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About Sara Gorman

Sara Gorman, PhD, is an MPH candidate at Columbia University Mailman School of Public Health. She has written extensively about HIV, TB, and women’s and children’s health for a variety of public health organizations, including Save a Mother and Boston Center for Refugee Health and Human Rights, and has published on public health in a variety of peer-reviewed journals. She most recently worked in the policy division of the HIV Law Project and as a research assistant in the Department of Epidemiology at Harvard University. She holds a PhD from Harvard University. The author declares no conflicts of interest.

Aside

An excellent infographic explaining bipolar disorder: symptoms, prevalence, treatment   —  Find it here

A new 3 min. online self-test for depression, anxiety, PTSD, bipolar disorder

I just tried a new online tool from Mental Health America called “How’s Your Mood Today?” that can help you evaluate whether things you’re thinking,  doing, or feeling may in fact be symptoms of one of these four, perhaps not yet diagnosed, mental disorders.

mhaBecause of the continuing stigma about mental illness, one of the hardest things for many of us is to seek help for bonafide symptoms of depression, and anxiety — or one of the other two less-common disorders, PTSD or Bipolar Disorder. Here’s a simple way to find out if some bothersome or distressing symptoms you  may be experiencing add up to a possible mental health disorder for which you should seek help — right away!

Before recommending it to you I tried it myself. After filling out the quick multiple choice questionnaire (truly took 90 sec) with answers that described the me of 12 years ago —  before I began using antidepressants to treat my (lifelong) depression and anxiety disorder –I found the (instant assessment) that popped up to be very accurate. It described me as someone displaying symptoms of moderate depression and therefore in need of professional evaluation and possible treatment. One thing I like very much in this test is its emphasis on identifying symptoms that interfere with some aspect of your life.

If you haven’t yet found the courage and/or financial resources to actually go to a clinic or public mental health department for such a screening, taking this test would be a solid first step to give you a better idea of how serious your symptoms are right now.

Here’s how MHA describes the tool:

Mental Health America  provides the only online test that screens for depression, bipolar disorder, PTSD and anxiety. The innovative online mood-screening tool is offered in partnership with M3 which created this medically proven checklist for mental health well-being.

Visitors simply need to click on the box in the upper right corner of the Mental Health America home page labeled “How’s Your Mood Today” to start the three-minute self-assessment process. The customized assessment provides a score that a person can then share with his or her physician and monitor over time.

Among the most popular things I offer on this Mental Health Mom blog are the self and family member psych tests (on the top bar). This new test is worth doing and it’s free. Here again is the link: http://bit.ly/XVa3mS

A Footnote to the Jenny McCarthy Public Health Threat: MMR Vaccines NEVER Contained Thimersol

Jenny-The-View-132467-9094-300x215The following came today from one of our PLOS Bloggers, Seth Mnookin, whose book, The Panic Virus chronicles the rise of the antivaccine movement,  including its celebrity spokesperson du jour, Jenny McCarthy. In the book, and his recent blog posts, Mnookin profiles McCarthy and recounts how the antivaxx message has scared parents out of getting proper immunizations for babies and young children — in the process posing a grave threat to kids’ health; one that has already resulted in pertussis and measles outbreaks in the US and UK.

Needless to say, giving McCarthy a daily TV platform such as The View to spew such misinformation is a BAD IDEA. A petition to get ABC to reverse its Jenny McCarthy hiring is circulating and can be found here: http://www.change.org/petitions/abc-s-the-view-just-say-no-to-adding-jenny-mccarthy-to-the-view

 Although Seth addresses his post to other science and health journalists, its message is equally relevant to today’s parents.

A PSA to journalists writing about vaccines: Thimerosal was never used in the MMR vaccine

By Seth Mnookin
Posted: July 16, 2013

The shameless and lamentable decision on the part of ABC to hire Jenny McCarthy as one of its co-hosts for the daytime talk show The View has, once again, brought the topic of vaccines and autism into the news. Fortunately, the spineless “on the one hand, on the other hand” reporting that characterized this debate for so many years has, for the most part, been replaced by an almost universal acknowledgment that vaccines are a safe, life-saving public health intervention — and that there is not now and never has been the smallest shred of evidence showing a causal link between any vaccine and autism.

As someone who’s been reporting on and writing about this issue for five years, I know how confusing it all can be — and anti-vaccine activists (like McCarthy orRFK Jr.) take advantage of this confusion by moving the goalposts, throwing up smokescreens, and generally doing whatever they can to obfuscate the reality of the situation. (When there aren’t any facts on your side, your only hope is to create enough distractions so that the public forgets what the real issue was in the first place.)

Which is why I get a little nuts when I see well-meaning journalists who are attempting to grapple seriously with the issue make basic mistakes. Take thisLos Angeles Times story titled “Jenny McCarthy on ‘View’: A new forum for discredited autism theories.” After running through the sorry history of charlatan/opportunist Andrew Wakefield’s efforts to scare people into thinking the measles-mumps-rubella (MMR) vaccine could cause autism, the author writes (the emphasis, obviously, is mine):

Subsequent efforts to replicate Wakefield’s findings failed. But vaccination rates began a steep decline anyway, and a new generation of parent activists — skeptics of the biomedical industry’s claim on their children — was born. Meanwhile, the findings spurred additional research, which suggested that the specific culprit in the MMR vaccine was the widely used preservative thimerosol.

I’ll say this as clearly as I can: The MMR vaccine does not and never didcontained thimerosal. (This mistake is made so often that the FDA has included it as one of it’s FAQ’s about thimerosal.) It’s a small, niggling point in this larger debate — but when the anti-vaccine movement’s entire tactic is to blur reality, it’s crucially important that those of us dedicated to uncovering and reporting the truth make sure we get every last detail right.

HIGHLY RECOMMENDED… Here is Seth Mnookin’s four part series on McCarthy and her antivaxx movement:

http://blogs.plos.org/thepanicvirus/2013/07/15/a-jenny-mccarthy-reader-pt-1-the-birth-of-a-star-and-an-embrace-of-crystal-children/

The Diagnosis (Unfortunately) Left Out of DSM5: Attenuated Psychosis Disorder

DSM_5_2As the much debated DSM5 finally enters the hands of doctors, policymakers, insurers and other interested parties next month (MAY/2013), I am reposting an article I wrote last fall. It concerns what I and many other mental health advocates view as a grave DSM5 omission: keeping the  proposed diagnosis of Attenuated Psychosis syndrome out of the list of recognized diagnoses. Yes, unlike the many critics of this handbook who have decried its inclusion of what they view as too many conditions, my beef is the exclusion of one with which I’ve had personal experience as a mother. With treatment, my son made a complete recovery from attenuated psychosis syndrome. Now, I shudder to think what this omission means for young people who are suffering the symptoms of early stage schizophrenia. One thing I am sure of: too many will continue to lack the benefits of insurance coverage and medical expertise that would be conferred by a DSM5 diagnostic designation. My post follows…

Attenuated Psychosis Syndrome will be included in the new DSM5 but only in its “Section 3,” a category of conditions designated as “needing further research.” Oddly, others in this category include: Internet use gaming disorder, Non-suicidal self-injury, and Suicidal behavioral disorder.

The really bad news: Section 3 disorders generally won’t be reimbursed by insurance companies for treatment, since they are still undergoing research and revision to their diagnostic criteria.

So after some three years of pitched battle in the professional and popular press, the revised diagnostic manual of The American Psychiatric Association (APA), has not approved this still controversial diagnosis. And since the DSM is revised only once a decade)  that means it will be at least that long before the early stages of schizophrenia will again be considered for eligibility for reimbursable treatment. The very worst news in these developments is that even though early intervention is the best way to head off this chronic debilitating condition, many families will lack the information and resources to provide it.

10stimulants1-articleLarge

This young man and his mother appeared on PBS Newshour to speak about the benefits of his treatment for attenuated psychosis syndrome he received at the SF PREP Clinic

Attenuated psychosis is a condition most often applied to young adults showing their first (thus weak or attenuated) psychotic symptoms; symptoms such as hearing voices, disordered thinking, paranoia and social withdrawal that could, if left untreated, lead to full blown schizophrenia or bipolar disorder. I’d hoped this revision of the DSM would take the full step of classifying it as a disorder so that more young people, like my now grown son Alex, would be able to receive treatment earlier rather than later when remission is more likely.

However, the reality is that attenuated psychosis will still be treated in cases when young peoples’ families can pay out of pocket for care; when a state or city offers subsidized “early psychosis” care often under the rubric of a research study (for example the UCSF PREP program, see below). Another more likely scenario is that a mental health provider will diagnose someone as having full blown schizophrenia when, in fact, he or she has not yet reached that standard (the situation for Alex at age 18), but the provider knows the patient will not have covered care without this diagnosis. Or the affected person will be diagnosed and treated for one of the presenting symptoms that often accompany attenuated psychosis, with depression, anxiety being the most common.

To provide details on how and why I arrived at the point of view that attenuated psychosis should be recognized as a disorder, I’ll repost here my article of last spring in which I advocate for this outcome.

What’s At Stake for Parents and Children in the DSM-5 (or DSM6) Battle?

Fevered debate over the final terms of the DSM5  may now be officially over but I have no doubt that many of the fiercest arguments that have surrounded it will  continue unabated. I for one will continue to advocate for early recognition and treatment for psychosis. But even without this recognition, intervention for the first signs of psychosis is available on a limited basis worldwide.

There are now some 20 clinics and leading psychiatric hospitals in the U.S. (with many more in Europe, Canada, Australia and the U.K.) that have already established specialized treatment programs for treating early psychosis. Indeed, these are the programs that will likely produce the definitive data that will ultimately vindicate the change in diagnostic criteria that will enable wider treatment for early psychosis, thus sparing millions more youth from the full blown disorder of schizophrenia.

headerOne such pioneering program is the PREP program in San Francisco, affiliated with the University of California, San Francisco (U.C.S.F).  I participated as a keynote speaker on June 8, 2012 in the 1st Annual PREP (Prevention and Recovery in Early Psychosis) Conference held in San Francisco. The day-long free educational event was designed for mental health practitioners, youth, parents and anyone else interested in learning the theory, symptoms/warning signs, methods of treatment of early psychosis in the 16 to 30 age group. (Click on the conference title above for more information about the PREP CLINIC and the conference.)

One of the most confusing issues  at the heart of the dispute over early psychosis diagnosis and treatment concerns the “false positive” argument: that is, the possibility that young people whose symptoms don’t progress to a full blown state of schizophrenia would be stigmatized by the diagnosis and then receive unnecessary treatment.

To these arguments, I would say first that people should not be forced to make decisions about their mental health based on whether that care will stigmatize them in the eyes of others. Secondly, I take issue with this notion of “unnecessary” treatment.

The False-Positive Straw Man

The possibility of a young person receiving a false-positive diagnosis for schizophrenia has worried plenty of people inside and out of the psychiatric profession. And there is good reason to take a close look at this issue. Based on the available studies, only one-third of young people with early symptoms of psychosis actually progress to a full-blown, more serious disorder—without treatment. At the center of this debate is the cost-benefit analysis of the early intervention option, usually intervening with cognitive behavioral therapy and/or antipsychotic medication.

The noted Australian early psychosis researcher Patrick McGorry pinned the vehemence of the current controversy on residue from other recent disputes within the American psychiatric profession. In 2006, he complained to Time magazine that while research and funding to support early psychosis treatment is blossoming in other countries, “it has ground to a halt” in the United States. “They’ve clouded the issue with the whole business of overmedication of younger children for ADHD,” he said.

To confirm McGorry’s assessment of what’s behind American psychiatry’s hysteria around expanding the diagnosis for psychosis one need only listen to the dire predictions of Allen Frances, the editor of the last DSM edition, who has led the charge to exclude the “attenuated psychosis” diagnosis from the DSM-5.  Frances has written that early intervention would cause “a wholesale medical imperialization of normality,” and create a “bonanza for the pharmaceutical industry,” for which “patients would pay a high price [of] adverse effects, dollars, and stigma.” Frances said he regrets the role played by the DSM-IV in creating “the bipolar fad” of the last decade by opening up that diagnosis to children and adolescents. More recently Frances has characterized the concept of prevention in psychiatry as little more than a pipe dream, certainly grossly premature in the case of attenuated psychosis.

Defending his work with early psychosis and the concept of prevention, McGorry explained, “It’s unacceptable to wait for patients to slide into madness, though it’s impossible to predict with any certainty which ones will. You’ve got to do something.” By this, he seemed to mean adding an antipsychotic medication to the treatment mix.

I appreciated McGorry’s clear understanding of just how miserable his patients typically are while they struggle with the onset of psychotic symptoms. In the Time article, I found his description picture-perfect: “They’ve got no friends. They’re sitting alone in their bedroom, their lives passing them by. You’ve got to actively research what’s going to help them. The critics have been right to raise issues, but you can’t neglect people when they clearly have a disorder, just because you can’t technically fit them into our arbitrary system of classification.”

Since his original clinical trial, McGorry and his Australian colleagues have gone on to treat many more young people who are at ultra-high risk for psychosis. Some guardedly good news has emerged from these recent trials. The six-month transition rate to psychosis, which was a 34 percent rate in McGorry’s earlier trials, had, by 2010, dropped to 9.2 percent. What does it mean? McGorry speculates that this drop in conversions correlates with many of his patients being identified earlier in their disease processes. As a result, he thinks they respond better and quicker to the interventions they’re getting. McGorry does not think, as some of his critics assert, that most of these young people were “false-positives” when they first entered treatment.

Alex Self Portrait at 17

Alex Self Portrait at 17

I would like to put a human face on this concept of the “false-positive.” Let’s say  a young person comes for treatment with pre-psychotic symptoms including paranoia, weak hallucinations, depression, social withdrawal and the beginnings of disordered thinking–all would fit under an “attenuated psychosis syndrome” diagnosis. Depending on how long his symptoms had been going on and how frequently they occur, under the proposed treatment model, he would be deemed at “high risk” of developing full blown schizophrenia. As a first stage treatment, he would then receive up to six months of cognitive behavioral therapy and possibly participate in family therapy to help him and his loved ones manage and hopefully arrest these symptoms. He would not receive antipsychotic medication unless and until his symptoms worsened or continued unabated after several months of CBT. Without knowing whether this young man’s symptoms would have progressed to full blow SZ the question is then: was the treatment he received a net loss or gain to him and his family?

The Definition of “Staged Treatment”

These days, McGorry is very careful to describe his treatment approach as strictly “needs-based.” He outlines a clinical staging model, in which an individual’s treatment moves from one stage to the next only after his symptoms escalate. After determining that the individual meets the criteria of ultra-high risk—someone between the ages of sixteen and thirty who is experiencing attenuated symptoms of psychosis, or is within a year of a first psychotic episode—the first stage of care he receives at McGorry’s clinic is cognitive behavioral therapy and the daily intake of omega-3 fish oil, a readily available nutritional supplement that has been shown to be effective in treating early psychosis, likely by enhancing the ability of the brain’s synapses to communicate. Antidepressants will also be considered if the young person’s depression is present and severe, and she doesn’t respond to CBT. And then, if indicated, McGorry recommends a very low dose of antipsychotic medication, ideally for a limited period of time of six weeks.

If this approach to medical care sounds familiar, that’s because it is the way most medical conditions are treated. Think about the treatment of high blood pressure as a precaution against strokes and heart attacks. Consider the removal of pre-cancerous tissues as a defensive move against tumors.

This same staged model for treating early psychosis has now been replicated and studied in a growing number of national health systems and university-affiliated clinics in the United States, United Kingdom, Europe, Scandinavia, and around the world. From the outside, it looks to be a constant balancing act between risk and benefit; the codifying of each symptom and step of treatment into a fixed clinical protocol an ongoing process—with a high level of cooperation by clinicians working and communicating with each from early intervention clinics around the world.

TWho Seeks Early Psychosis Treatment and Why?

“Anywhere but here” is the refrain heard from the majority of teenagers who, if given a choice, would give serious thought to cutting off a finger before agreeing to see a “shrink.” Demian Rose in his role as medical director for PREP San Francisco offers an insight into how and why young people initially arrive at his clinic for care, explaining that most don’t come because they’re failing at school, or even because they’re hearing voices. These fleeting psychotic symptoms no doubt fuel their anxiety and depression, but most come for an evaluation, Rose says, “when they become socially isolated and emotionally distant from their peers.” Research confirms that mood fluctuations and stress trigger and exacerbate the recurrence of psychotic symptoms in those at risk.27

The good news may be that since friendships and budding romantic feelings are such a priority to adolescents, when this area of their lives gets messed up, they have a greater motivation to get evaluated and treated. In the process, they may stave off the psychosis that could be laying in wait.

The Important Role of Psychotherapy in Pre-Psychosis Treatment

The therapeutic goal at PREP is to help the psychologically distressed individual (around ten to one are male) retrain and reframe his thoughts and behaviors toward more socially acceptable habits.28 This is also the essence of the cognitive behavioral therapy (CBT) used with young people who are treated at PREP. This form of psychotherapy has been around for decades, but it has only recently been adapted by psychologists in the United Kingdom for the treatment of psychosis. (CBT in its original form is a widely used form of talk therapy to treat most other common mental disorders, including depression). As adapted for psychosis, CBT teaches an individual who becomes suspicious or paranoid to become consciously aware of a negative thought pattern that is about to escalate and then to learn how to “catch it, check it, change it.”

Imagine that a young man who is experiencing fleeting psychotic symptoms is sitting on a packed bus at rush hour. In his discomfort at the crowd pushing up against his knees, he might acquire the distinct feeling that the middle-aged woman standing a few feet away is staring at him, angry that he has a seat and she doesn’t. He may also fear that she’s scrunching up her nose because she believes he smells badly. He could go off even further on this paranoid tangent, becoming suspicious she will report him to the bus driver, who will request he get off at the next stop.

Before saying something inappropriate to the woman or getting up to leave the bus preemptively to avoid the feared outcome, CBT teaches this young man to stop and catch his wayward thought process. Checking to see if there’s any other viable explanation for the woman’s behaviors then reveals to him the more likely possibility that the woman simply has nowhere else to look but in his direction. Further, he realizes that there’s no concrete evidence to support the belief that she blames him for her situation or judges his appearance negatively—nor that she has any intention to speak to the bus driver about him. This reframing allows the young man to change his thoughts and to then relax his mind and body for the duration of the bus ride. It’s the CBT mantra in action: “Catch it, check it, change it.”

Demian Rose, Rachel Loewy, and their colleagues writing in Current Psychiatry use a continuum model to demonstrate how the human spectrum of thought and perception ranges from ordinary to heightened and then on to varying degrees of psychosis. They demonstrate how a clinician can respond to a young person’s unusual comments or behaviors without “pathologizing” his behavior and risk alienating him. This approach offers the client perspective and a choice. On one hand, he can continue expressing his unusual thoughts openly and risk alienating others. Or he can choose to keep these thoughts to himself and gain social acceptance. Rose points out that in the prepsychotic stage, this interactive discussion and decision-making process is much more viable.

This same advice can be useful to parents of an adolescent or a younger child whose altered behavior or speech might suggest that he is close to this outer edge of the continuum. Putting science aside, I remember as a parent watching Alex in this state, and it was terrifying. As he left “reality” behind, I felt him slipping away from me, too. But the alternative to pathologizing this behavior, Demian Rose points out, is normalizing it,which allows you to open up an honest conversation with your child (or another adult) about thoughts and feelings that may not fit our definition of normal but may in fact be very human. I didn’t have this insight to guide me at the time, but it made perfect sense when I heard Rose explain that this sort of conversation is the best way to find out what someone in this state is feeling and thinking, and what he really needs from you.

In addition to training their clients to use this thought-reframing drill, the PREP program also includes family members and caregivers in ongoing treatment. The model calls for bringing the clients’ parents and other family members together in a regularly meeting “multi-family group.” There they receive psychoeducational treatment, meaning they learn about psychosis and how they can help the affected person stay on track. Getting together with other families provides much-needed emotional support to parents faced with the often daunting task of providing care a troubled adolescent.

hThe Role of the Family

The man credited with developing this model is William McFarlane, a pioneer in early intervention for psychosis whose PIER Clinic (Portland Identification and Early Referral) was established in Maine in 2000. McFarlane’s studies show that ongoing support groups made up of several families meeting together significantly reduces relapse rates for the schizophrenic family member—when compared to not involving families in care or offering psychoeducational support to one family at a time. The PIER program was also the first to demonstrate that teachers, social workers, pediatricians, and therapists in a community could be trained to successfully identify psychotic symptoms in distressed young people and then intervene by referring them to PIER for an evaluation.

The Medication Issue

When an adolescent is diagnosed properly as “ultra-high risk,” he may be as little as a month or as long as one to two years away from developing full-blown schizophrenia—if he is going to convert at all.Demian Rose put the clinician’s dilemma succinctly: “The problem with the current diagnostic standard is that it ‘waits’ until it’s absolutely sure that dysfunction has been present for 6 months before confirming schizophrenia; so the message to parents and patients is all too often: ‘Let’s wait this out. You’re either going off a cliff. Or you’ll be okay. We’re not sure which.’ The real question should be how can clinicians reduce the risk of conversion while minimizing the risk and burden of any treatments.”

One guiding principle at PREP is to use as small a dose of antipsychotic medication as possible to keep the individual stable, and to err on the side of less is more.31 Convincing clinical data is accumulating on the positive outcomes coming from clinics using the approach practiced at PREP. Those who get treatment within the first six months to a year of the appearance of symptoms of psychosis show a much higher rate of remission and long-term recovery. If their symptoms convert to a diagnosis of full-blown schizophrenia (the usual diagnosis if they do) or bipolar disorder, their treatment is usually more effective, meaning their impairments are less, and their recovery is greater over the long term. But if they receive the same treatment from one to three years after psychosis has firmly taken hold, the rate of remission is lower, and the risk of side effects from long-term use of the medication goes up.32

Now in its second year of operation, the PREP program has treated thirty young people, ages sixteen to thirty, with a mean age of twenty-two years. Twenty-one of these patients had already progressed to full-blown schizophrenia before coming to PREP, but they were recent-onset patients. Nine hadn’t yet reached that threshold, and so were considered ultra-high risk.33 In the future, if the PREP-PIER model is permitted to become the standard for mental health care, we could reasonably expect this ratio to reverse; more young people could receive help before going “over the cliff” into a full psychotic episode, not after. Then their care could begin with CBT and be far less likely to progress to medication, at least not for a long period. The important thing is that they would learn the necessary self-regulating skills to stay safe.

In a professional journal, Thomas McGlashan, who led a clinical trial in early psychosis treatment at Yale and came out with what he saw then as disappointing results, nonetheless laid out the evidence for argument to treat young people for their symptoms of early psychosis as follows: (1) the patients are currently ill, (2) the patients are at high risk for getting worse, (3) no DSM-IV diagnosis accurately captures their current illness or future risk, (4) the diagnosis has been made with reliability and validity in the research setting, and (5) placement in DSM-5 would help promote the needed treatment and prevention research to enable articulation of a standard of care to benefit these patients and their families. He closed by pointing out that any potential harms can be minimized by patient, family, and provider education.

To my ears, this debate comes down to the question of who has the right to decide when an individual and a family have suffered enough. By continuing this now very public, fever-pitch argument over the difficult choice of whether to give a child or teenager a psychiatric medication, I think we’ve lost sight of what’s really at stake here. As Doctors McGlashan, McGorry, and Rose make clear, these young people are already very ill when they come seeking help. My sense of urgency comes from having watched my son Alex’s two painful years of decline until he became a shadow of his former self. And having the joy of watching him climb out of that state after three years on medication and in intensive CBT therapy. No young person should have to stay in that state any longer than necessary.

I think many of the dire predictions of those opposed to recognizing attenuated psychosis as a diagnosable and treatable syndrome — those fearing its over diagnosis and the over medication of young peple — should in fact be accepted as valid cautionary messages for their professions — not as a reason to deny people care who desperately need it.

The lack of a recognized diagnosis for early psychosis in the DSM-5 will not stop parents and their affected adolescents from seeking and getting help for those symptoms. It will just keep the process of getting help expensive and difficult and limited the number who can be helped in time to stave off the possibility of developing a full blown disorder.

In other words, it will stay par for the course for American medicine. But that doesn’t mean parents and advocates shouldn’t continue the campaign to educate and lobby for change.

For comprehensive NEWS on early treatment of schizophrenia and a list of hospitals and clinics treating early psychosis in the US and around the world visit the website http://www.schizophrenia.com

For more information on the PREP Clinic.

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[Some of this article is drawn from my book, A Lethal InheritanceA Mother Uncovers the Science Behind Three Generations of Mental Illness.]

Praising the child’s effort… “you tried hard!”, not the person…”you’re a good boy!” far more effective, says new study

I just caught this TIME article covering a new Stanford/Univ of Chicago parenting study…it’s something that makes a lot of sense but as parents we need the “proof” to really get us to adhere to the “better way” of doing something. The study looked at toddlers, an especially challenging time for working on behavior modification if I recall (who can forget!)…

“Praising the efforts, actions and work of the kid is going to be more beneficial in their long-term persistence and [desiretb-120330-danny-hmed-2p.380;380;7;70] to be challenged and work hard in the future.”

Such “process praise” includes comments such as “You worked really hard” or “You’re doing a great job,” which emphasize the child’s actions. “Person praise” includes comments like “You’re so smart” or “You’re so good,” which focus on a child’s inherent qualities. These distinctions aren’t new in the field of psychology, but exactly how they affect children’s development over the years hasn’t always been clear.

Read more: http://healthland.time.com/2013/02/12/good-boy-theres-a-better-way-to-praise-your-kids/#ixzz2P8YPR5R7

“A Mind in Danger” Wins 2013 ASJA June Roth Best Medical Journalism Award

a-mind-in-danger_1 (1)I’m thrilled to share today’s news from the American Society of Journalists and Authors (ASJA) that my 2012 article in Scientific American MIND, “A Mind in Danger,” is the 2013 winner of the June Roth Prize for Medical Journalism.

The article is drawn from my book, A LETHAL INHERITANCE, A Mother Uncovers the Science Behind Three Generations of Mental Illness published in 2012 by Prometheus Books. It goes into the extraordinary research now available showing the subtle and not so subtle early signs of mental illness in children as young as five and twelve years of age.

I’m excited and honored to be recognized by my journalist peers with this prestigious award. Here’s the lede from the article — Thanks to the folks at Scientific American for making it free access for this occasion:

Cover Image: March 2012 Scientific American Magazine

A Mind in Danger

Signs of incipient psychosis show up early in life. Reading them is key to rescuing kids from the abyss of a serious mental illness

By Victoria Costello

In Brief

  • Signs of a mind in danger—including social deficits, impaired body sensations and reduced tolerance to stress—may show up anywhere from two months to 35 years before schizophrenia strikes.
  • The prevalence of schizophrenia is 1.1 percent, but if a parent has the disorder, the child has a 10 to 12 percent increased risk and a 17.1 percent chance of developing a related personality disorder.
  • Physical abuse, bullying by peers and ingesting cannabis can push a genetically vulnerable child toward psychosis.

From the moment he was handed to me in the delivery room, Alex, my firstborn, seemed not happy to be here. His eyes were bottomless, his expression grave. He spent his first three months writhing and screaming inconsolably, the word “colic” wholly insufficient to describe our collective suffering. It wasn’t until his brother, Sammy, arrived that I realized just how different Alex was compared with other babies. Sammy cried only when he was hungry or wet. He made easy eye contact and loved to be stroked, hugged and kissed—all the things Alex recoiled from as an infant.

Later, when I took Alex to playgroups, he crawled away from the other toddlers to do his own thing, so we quit going. It wasn’t that Alex appeared unhappy. He would sometimes sit and smile with satisfaction for no apparent reason. At age two and three, Alex attended a Montessori preschool. Although he enjoyed the hands-on activities, his teachers often commented that he usually ignored them as well as the other children. His first grade teacher thought he must be hard of hearing because he routinely ignored her directions, especially the daily reading and writing drills she assigned. In one of the first studies ever done with families afflicted with schizophrenia, the Edinburgh High Risk Study, Scottish mothers commonly described children who went on to develop the disorder as occupying a world of their own.

I had so often thought of Alex the same way.

Alex first began to manifest the so-called negative symptoms of schizophrenia in puberty. These included a loss of motivation, social and emotional withdrawal, a disinterest in hygiene and dress, and trouble sleeping. The term “positive symptoms” refers to the more obvious behaviors we think of as “crazy”—hearing or seeing someone who is not there, for example, or holding fixed, illogical beliefs—and they would unfortunately come, too, a little later, as they are known to, right before the first psychotic break.

Knowledge of schizophrenia as a long-term disease process has existed since the early 20th century. The initial signs of this process—the impaired body sensations, reduced tolerance to stress, increased emotional reactivity and, especially, social deficits—“can appear more or less continuously between two months and 35 years prior to their progression to the first psychiatric symptoms,” wrote German researcher Joachim Klosterkötter of the University of Cologne in a 2001 essay.

Although much of the profession still focuses on the debilitating full-blown illness, paying attention to its origins and early stages provides the greatest chance of altering its course. In particular, adjusting a child’s environment is one important way of minimizing the impact of this serious mental illness. Parenting does not cause schizophrenia, at least not on its own, but that does not mean that parents and other adults are powerless to protect children from it.

Weighing the Chances
In an 1896 treatise German physician Emil Kraepelin observed that many of the children of his schizophrenic patients, especially those who would go on to develop the disease themselves, were “a little different in character and behavior from their peers—beginning in early childhood.” The accumulating evidence now backs up Kraepelin’s observation that a significant number of individuals later diagnosed with schizophrenia display some common and often peculiar traits and experiences as children or adolescents.

Here’s the full article link:

http://www.scientificamerican.com/article.cfm?id=a-mind-in-danger

New Study: Significant genetic overlap found for 5 different mental disorders: SZ, depression, autism, BP, ADHD

What comes to my mind after reading of this sort of genetic finding is that it lends support to the view of mental illness as a cluster of related but different disorders that play out over generations — the view I present in my book, A LETHAL INHERITANCE.

Here’s the key excerpt for me:

“This study, for the first time, shows that there are specific genetic variants that influence a range of childhood and adult-onset psychiatric disorders that we think of as clinically different,” said lead researcher Dr. Jordan Smoller, a professor of psychiatry at Harvard Medical School in Boston.

“We also found that there was significant overlap in the genetic components of several disorders, especially schizophrenia with bipolar disorder and depression, and to a lesser extent autism with schizophrenia and bipolar disorder,” he said.

Here’s the complete article discussing the study which, being on Lancet, is paywalled…meaning we’ll have to wait a year or longer to read without payment.

http://consumer.healthday.com/Article.asp?AID=673910

Here’s how the NYT covered the same study:

Same Genetic Basis Found in 5 Types of Mental Disorders

The psychiatric illnesses seem very different — schizophreniabipolar disorderautismmajor depression and attention deficit hyperactivity disorder. Yet they share several genetic glitches that can nudge the brain along a path to mental illness, researchers report. Which disease, if any, develops is thought to depend on other genetic or environmental factors.

http://www.nytimes.com/2013/03/01/health/study-finds-genetic-risk-factors-shared-by-5-psychiatric-disorders.html?hp&_r=0

Is PTSD Contagious? from Mother Jones

I’ve excerpted a piece from an important article on PTSD in active duty381IN_PTSD_A_300_0 and veterans’ families — showing it as a contagious mental disorder. A friend of mine is one of the therapists the military has brought in to treat these family members and she is one of the few treating children (under age 7) — she talks about “secondary PTSD” as a grave and deepening problem. I also think this story sheds light on how any mental disorder in one member can affect entire families — a whole new area requiring more research.

—By January/February 2013 

We await the results of the 20-year, 10,000-family-strong study of impacts on Iraq and Afghanistan veterans’ kin, the largest of its kind ever conducted, that just got under way. Meanwhile, René Robi­chaux, social-work programs manager for US Army Medical Command, concedes that “in a family system, every member of that system is going to be impacted, most often in a negative way, by mental-health issues.” That was the impetus for the Marriage and Family Therapy Program, which since 2005 has added 70 therapists to military installations around the country. Mostly what the program provides is couples’ counseling. Children are “usually not” treated, but when necessary referred to child psychiatrists—of which the Army has 31. Meanwhile, the Child, Adolescent and Family Behavioral Health Office has trained hundreds of counselors in schools with Army children in and around bases to try to identify and treat coping and behavioral problems early on. “We’re better than we were,” Robi­chaux says. “But we still have a ways to go.”

Read the whole story here.