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Carroll: The stigma of mental illness

The MetroWest Daily News

By Iris Carroll, Guest columnist

GHS

Tue Jan 22, 2008, 12:19 AM EST


 

Have you ever wondered what lies buried beneath the stigma of mental illness?

Is it fear?

Maybe. But in spite of the media's tendency to sensationalize crimes committed by people who have been treated for mental illness, studies have shown that as a group, people living with mental illness are no more likely to be violent than the general population.

In fact, our country's own history includes people who have made major contributions to our society while at the same time struggling with mental health problems. Icons like Lincoln, Beethoven, Hemingway, Michelangelo, Churchill, and Dickens all experienced one of the major mental illnesses.

So why do we put so much distance between ourselves and other human beings who are obviously suffering and in need of comfort, instead of reaching out to them to help or offer support?

At Programs For People, clients recount stigmatizing events, painfully endured. They have lost friends after being hospitalized for psychiatric reasons. They have been ostracized by co-workers following a psychiatric hospitalization.

They say they have been stigmatized for being unemployed, been called "lazy" by family members, and pressured endlessly to get a job. They have even been asked inappropriate, probing questions by non-psychiatric, medical professionals.

It seems as though effects of stigmatization are almost as toxic as the illness, itself.

Why do kids pick on other kids who seem different? Why do adults denigrate others who appear to fall out of the norm?

Is it something deeply imbedded within the human psyche, some perverse Darwinian striving for survival of the fittest? Does it make us feel more sure of our own sanity to question the sanity of others?

In truth, relating to the strengths of anyone is much more personally rewarding than focusing on perceived weaknesses. In spite of our need for individuality and uniqueness, we all long to feel connected. We yearn to belong, to be understood, and to fit in somewhere.

Often when clients at Programs For People finally get up the courage to express the way they feel, they are absolutely amazed to find out that others have felt the very same way. When staff tell them that "lots of people, not just those with mental health issues, feel that way" they are incredulous.

Stigmatizing has lessened to some degree because, fortunately or unfortunately, these days almost everyone knows a relative, friend, or co-worker who has experienced mental illness.

In those instances, when we know and care about someone, it's easier to see them as a person who happens to have a mental illness. Too often, however, those whom we do not know are defined, in entirety, by the illness.

We need to look deep inside of ourselves about this, with greater compassion. What if it happened to us?

Once a client leaned forward and said to me, with incredible emphasis and feeling, "Do you know what it's like to hear someone whispering in your ear all the time?"

Even though I knew through my work that some people with mental illness hear voices, I was stunned. For the first time, I really imagined and felt what that would be like.

Put yourself there. Not easy to handle.

What helps people who have experienced mental illness feel better about themselves is knowing that there are people who care, understand, and stand by them - people who know that even with the illness, we are all still much more alike than different from each other.

Iris Carroll, MPH, is director of Programs For People, a Framingham-based agency that helps people to recover from mental illness and become employed.

F.D.A. Requiring Suicide Studies in Drug Trials - New York Times

The New York Times
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January 24, 2008
F.D.A. Requiring Suicide Studies in Drug Trials
By GARDINER HARRIS

After decades of inattention to the possible psychiatric side effects of experimental medicines, the Food and Drug Administration is now requiring drug makers to study closely whether patients become suicidal during clinical trials.

The new rules represent one of the most profound changes of the past 16 years to regulations governing drug development. But since the F.D.A.’s oversight of experimental medicines is done in secret, the agency’s shift has not been announced publicly.

The drug industry, however, is keenly aware of the change. Makers of drugs to treat obesity, urinary incontinence, epilepsy, smoking cessation, depression and many other conditions are being asked for the first time by the drug agency to put a comprehensive suicide assessment into their clinical trials.

In recent months, the agency has sent letters — it would not say how many — to drug makers requiring that they use such a scale. Merck, Sanofi-Aventis and Eli Lilly are all using a detailed suicide assessment in clinical trials being conducted now.

The seeds for the new federal effort were planted four years ago with the discovery that antidepressants may cause some children and teenagers to become suicidal. Top agency officials at first discounted the finding but commissioned researchers from Columbia University’s department of psychiatry, led by Kelly L. Posner, to reanalyze the drugs’ clinical trials. This work caused the drug agency and its experts to view the risk as real.

Then it received an application for rimonabant, a much-heralded obesity drug developed by the French drug giant, Sanofi-Aventis. As agency medical reviewers pored over the drug’s clinical trial data, they discovered hints that it could cause psychiatric problems, too.

Unsettled by their experience with antidepressants, agency reviewers again mandated the use of Dr. Posner’s system. The assessment found that the drug doubled the risks of suicidal symptoms. In June, an F.D.A. advisory committee voted unanimously that the agency reject rimonabant because of its psychiatric effects, and Sanofi-Aventis withdrew the application although the drug is sold in Europe.

Just this month, the results of a trial of Merck’s obesity drug, taranabant, were published showing similar psychiatric problems. Meanwhile, fears have grown that drugs used to treat epilepsy, seizures and mood disorders may have similar effects. An extensive examination of these medicines by the drug agency should be completed this year.

Suddenly, agency officials realized that multiple classes of medicines might cause dangerous psychiatric problems.

“Clearly we were somewhat surprised when this signal emerged in the pediatric antidepressant data,” said Dr. Thomas P. Laughren, director of the drug agency’s division of psychiatry products. “So various groups within F.D.A. are now looking at suicidality more broadly as a possible adverse event.”

The drug agency’s concerns are consistent with a growing body of research confirming that behavior is heavily influenced not only by genes but also by seemingly innocuous changes in body chemistry. Drugs not reaching the brain were once thought to be largely free of mental effects.

“One lesson from pharmacology is that you can see effects on emotion and cognition without the drug entering the brain if a drug leads to peripheral changes in” other chemicals that enter the brain, said Dr. Thomas R. Insel, director of the National Institute of Mental Health.

Some critics say that the agency’s new-found focus on psychiatric side effects is long overdue.

“The list of drugs that causes psychiatric problems is a very long one,” said Dr. Sidney M. Wolfe, director of Public Citizen’s health research group.

Medicines to treat acne, hypertension, high cholesterol, swelling, heartburn, pain, bacterial infections and insomnia can all cause psychiatric problems, effects that were discovered in most cases after the drugs were approved and used in millions of patients.

Some drugs cause depression so often that doctors prescribe antidepressants prophylactically with them.

Among medicines still for sale, the F.D.A. has determined that the drugs’ benefits outweigh their psychiatric risks. Still, the agency now wants to uncover such problems more reliably and before approval.

There are two reasons that the F.D.A. for years was inattentive to the psychiatric effects of new medicines. First, distinguishing between mental problems that spring from a disease and those that result from its treatment is often difficult. For antidepressants, many researchers suggested that suicidal behaviors resulted because, as patients’ depression lifted, they suddenly had the energy to carry out previous suicidal thoughts.

Second, drug side effects are often first identified in clinical trials when multiple doctors treating hundreds of patients record similar problems in trial notes. But terms to describe depression or suicidal thoughts can vary widely, making them hard to discern.

“The whole spectrum of suicidal thoughts, ideation and attempts is much more difficult to define and study than” other drug problems, said Dr. Eric Colman, deputy director of the drug agency’s division of metabolic and endocrine products.

Indeed, the agency’s initial review of the effects of antidepressants in children was plagued by inconsistent and erroneous observations by investigators. A 10-year-old boy who tried to hang himself was listed only as having a “personality disorder,” an overdose of 11 tablets was called a “medication error” and a girl who slapped herself in the face was labeled as having attempted suicide.

Dr. Posner’s team spent months reclassifying these events as either a suicidal symptom or not. The team created a detailed questionnaire called the Columbia Suicide Severity Rating Scale, now adopted by the drug agency as an often mandatory test to be used in clinical trials.

The last time one medicine’s side effect led the F.D.A. to broadly re-examine its drug approval process was in 1992, when it discovered that Seldane, a popular antihistamine, could cause dangerous heart arrhythmias. Tests revealed other drugs that could affect heart rhythms, and the agency soon mandated that nearly all experimental medicines be tested for heart rhythm effects.

Unlike the Seldane example, however, not every experimental drug program must use the new suicidal symptoms scale. Drug officials said that they looked at a drug’s molecular structure and its effects in animals before deciding whether to insist on the new test.

“That’s where it gets tricky,” said Dr. Colman. “It’s difficult to say where you draw the line.”

But Dr. Posner said in an interview that so many companies and academic research programs were adopting the suicide questionnaire that she was having trouble keeping up with the demand for its use. The questionnaire has been translated into 80 languages, and Dr. Posner has trained scores of teams of investigators from around the world on how to use it. On Jan. 4 she lectured a group of investigators at Yale.

Benjamin A. Toll, an assistant professor in the university’s department of psychiatry, was in the audience and said he planned to use the Columbia questionnaire in a trial almost immediately.

“It’s much more detailed than what we were doing before,” Dr. Toll said. “We used to ask, ‘Are you feeling down? Are you feeling sad?’ ”

Dr. Colman said that the new questionnaire, while important, would not end the uncertainty around suicidal symptoms.

“If a drug makes people depressed but doesn’t make them suicidal, what do you conclude?” he asked. “There will always be some degree of uncertainty.”

Globe Editorial: First, Try To Help

GLOBE EDITORIAL

First, try to help

February 8, 2008

'HE FELL on bad times and turned to the bottle."

"She's meds-seeking."

"He's relapsed eight times. . . . The hospital gave him Percocet."

"He has no problem getting a job when he's sober."

The details of the troubled lives of homeless clients flew quickly in a conversation held last week by a team of counselors, shelter and housing directors, an outreach worker, and a domestic violence specialist all crowded around a conference table in Framingham at the Common Ground Resource Center. It's a weathered and sprawling white house that serves as the first stop for getting housing services from the South Middlesex Opportunity Council (SMOC), an antipoverty agency. The house has the feel of an old railroad station: It's a good place to disembark before one's life veers completely out of control.

The talk is a part of a vital national effort to provide "trauma-informed care," which recognizes how much people can be harmed by addictions and physical abuse.

Two years ago, there probably wouldn't have been much talk at SMOC about the men and women who were failing at saving their own lives, because the situation was stark: Clients who broke the rules were simply kicked out of SMOC's housing.

"It was a lot easier," SMOC's director of planning, Gerard Desilets, says of the old approach.

The only problem was that these people still lived with daily crises. They could end up ricocheting through the public system, going to detox, jails, and other shelters. Family members would cut them off. Some might sleep in cars. And they'd still drink or use drugs and struggle with mental illnesses.

So SMOC changed course, training 400 of its staff members to provide trauma-informed care. And the resource center team was created so that no one staff person would go it alone. The new marching orders were to stop focusing too closely on clients' rule-breaking and reckless behavior, and to be conscious instead of their underlying trauma.

A different approach

The National Center for Trauma-Informed Care (part of the US Department of Health and Human Services) puts it this way: Don't ask people, "What is wrong with you?" But rather, "What has happened to you?"

The devastating answers include domestic violence, child abuse, witnessing violence as a child, and physical and sexual assault. Or it might be that a person has aged out of foster care or left juvenile detention, and suddenly has to build a life out of thin air.

If trauma is severe enough, it can impair people's cognitive, emotional, and physical well-being. With this in mind, the SMOC team keeps talking - about clients and to them; discussing strengths such as who has found housing and a job. When it comes to struggling clients, the team brainstorms about what other staff members or programs might help.

Among the guiding principles: Keep people engaged even if they do break rules, because rule-breaking, relapsing into an addiction, and other self-destructive actions may in fact be clients' attempts to cope with trauma or the result of trauma-impaired functioning.

For those whose lives are fractured by trauma, rhetorical sticks such as "zero tolerance" or "three strikes and you're out" are less likely to work. The words may only seem like so much breath to an adult who is plagued by the demon of chronic childhood beatings.

"We still push sobriety," says James Cuddy, SMOC's executive director. But there's also an effort to help clients understand that some old harmful habits - which might have helped them cope with an assault or chronic childhood abuse - are no longer necessary. SMOC doesn't require clients to reveal traumatic experiences, only to learn the skills they need to heal and function more effectively.

Realism and compassion

Instead of giving up on clients who relapse into addictions, SMOC staffers say "relapsing is part of recovery," and they ask clients, "How can we help you relapse less?"

The work is emotionally draining. Staff members say they invest their hearts and souls. Some are recovering from addictions themselves, so they know, first hand, about this struggle.

Not everyone succeeds. But more of SMOC's clients are achieving stability and independence as SMOC uses trauma-informed care as part of a larger effort to place and keep people in permanent housing.

It can sound like coddling. But Cuddy says it's a matter of treating clients with more respect. He adds that the approach can save money by keeping people out of jail, shelters, and other public facilities.

Trauma-informed care is also championed by the state's Bureau of Substance Abuse Services, which said in a 2006 report that, "While important work has been done both nationally and in Massachusetts to develop trauma-informed integrated care, it is clear that for consumers . . . multiple obstacles remain." Clients need more coordinated care, and more public entities, from courts to state agencies, should be involved.

In the report, the bureau and the Institute for Health and Recovery, a Cambridge nonprofit, (both of which provided technical assistance to SMOC) also pushed Massachusetts to do more to address trauma - by involving law enforcement, helping traumatized parents meet their children's needs, and providing more skilled care across gender, class, ethnic, and other socioeconomic lines.

The bureau already requires the agencies it funds to provide trauma-informed care. And the Department of Public Health is extending the approach to AIDS programs. Federal efforts include a conference in July that's being sponsored by the National Center for Trauma-Informed Care.

It's an effort that should grow. People can be remarkably fragile. And many of the poorest and most harmed don't respond to attempts to flog them into better lives. That's no reason to abandon them.

Mental Health Wards Restrict Access to Email

SPECIAL MENTION 2- Incommunicado: Mental Health Wards Restrict Access to Email (Spare Change News, USA)

Paul Rice
February 5, 2007

People living in certain mental health facilities in Massachusetts are not being afforded access to email, cutting them off from an important conduit of communication with the outside world.

The “Five Fundamental Rights Act,” passed in 1997, was a piece of legislation that guaranteed certain, mostly inalienable rights to inpatients at mental health facilities. These rights include the right to “sealed, unopened, uncensored mail,” as well as postage and stationary, the right to visitors of “your own choosing daily and in private, at reasonable times,” and the right to “reasonable access” to a telephone in order to make and receive confidential calls, and more.

Since the rights were enacted before the Internet was widely accessible, there is no mention of access to what has become the world’s greatest source for information and knowledge, not to mention the cheapest and fastest communication device ever fashioned: email.

Email has become analogous to traditional pen and paper writing, due to ease of use and increasing access to computers. Practically all communication in businesses operates around email, with only more formal or legal documents being held over to the mail system. Anyone who owns or borrows a computer can make a free account through a service such as Yahoo or Gmail. In 1999, researchers determined that 263 million people had an email inbox. Eight years later, with the growth of affordable high-speed connections and reduced price computers with internet access, it is conceivable that the number is nearing one billion.

But when a person enters a mental health facility, although they might have access to written letters and the telephone, administrators are not required to allow access to email and the Internet.

“It’s a huge issue to be cut off from the outside world – being bored out of your mind is not therapeutic,” says Cathy Levin, editor of the Voices for CHANGE Newsletter, a publication from MPOWER, a local mental health advocacy group staffed mainly by current and former psychiatric patients.

“When I was in the hospital, I called my father every night before I went to bed,” she recalls. “It was enormously helpful to feel loved, because the staff doesn’t love you.”

Levin believes that providing access to email should be a right taken as seriously as the telephone or receiving letters.

“This way, you can keep all your balls in play while you’re away.”

One hospital where there is no access to email is the Cahill ward at Cambridge City Hospital. Spare Change News editorial assistant Amanda Morley recently spent a few months at Cahill and found the lack of access to be a point of huge stress. She tells SCN that email would have made her time there much easier.

“It would give me a little sense of companionship, to get messages from people and not feel so alone,” she says. “It boosts your energy and your mood when you get messages from people.”

Morley has four or five close friends whom she only communicates with via email. “Even just a small message really makes a difference.”

As of press time, administrators at Cambridge City Hospital had not returned requests for comment on the issue.

Whether or not advocates inserted language into the “Five Fundamental Rights” about email, an issue may remain with the enforcement of those rights.

“People in psychiatric hospitals have very few rights at all and those rights can be taken away by a staff member instantly,” says Howard D. Trachtman, executive director of the Boston Resource Center at Boston Medical, a peer-to-peer meeting place for people dealing with mental illness issues.

Trachtman is concerned about hospitals’ lack of emphasis on the rights for their patients. “We know anecdotally that they’re very often flouted,” he tells SCN. “They’re not enforceable, and that’s what we’re trying to remedy.”

Jonathan Dosick is another patient advocate who is working on changing the legal text of the Rights to include more actual enforcement at the hospital level. The bill has been introduced to the legislature multiple times over the last few years, failing each time. Advocates are trying again this year, with a new draft.

“Basically, it provides for an appeal process for violations of the Five Fundamental Rights, something that doesn't happen now – generally, DMH complaints filed tend to disappear, or are ‘investigated’ by hospitals,” Dosick writes, in an email to SCN. “However, those at hospitals who are designated as ‘Human Rights Officers’ are, besides employees of the facility, also Risk Managers.”

With a lack of patient advocates (who aren’t employed by the hospital), even if the rights were changed to include email, there would remain no guarantee that the rights would be observed – something which, for people like Amanda Morley, would make all the difference in improving her mental stability.

“Sometimes when I’m walking down the street and there’s a guy panhandling and he tells me to smile, that really helps,” Morley says. “Someone saying something to you is heartwarming. It’s very lonely here and it’s scary because there are 27 people here and I don’t know anyone.” At the new facility she’s lodged at, they recently forbid her from taking her stuffed animals out of her room.

“You may only be in hospital for three days, but in that time you can lose your friends and your job,” says Cathy Levin. “It’s not unlike going into prison and having someone lock the door.”

The difference being that most prison inmates have access to email these days.

By Paul Rice

Reprinted from Spare Change News

© Street News Service: www.street-papers.org

Mental patients find understanding in therapy led by peers

Mental patients find understanding in therapy led by peers

By Carey Goldberg, Globe Staff  |  June 8, 2007

TAUNTON -- Years ago, Jess Zaller came to the Pathways mental health program as a day patient. In and out of institutions, he had fought mental illness since childhood. His life felt like a nightmare of chaos and despair.

Zaller, 45, was back in a Pathways therapy group last week, but this time as a leader, listening carefully as members laid bare the pain of their fears and compulsions. When he delicately pointed the way, it was often in the first person, using his own hard lessons learned:

"Our lives are at stake," he told members. "It takes a lot of courage to walk a path of recovery, and each one of us develops our own path."

Massachusetts is beginning to develop a corps of people like Zaller who have been through the depths of schizophrenia, bipolar disorder, or depression, and recovered enough that they can help others with mental illness.

Such comradely aid has long been exchanged informally, or scattershot at mental health venues. But now the state has launched a new job category -- certified peer specialist -- meant to formalize these relationships and gradually, they hope, get peer counseling reimbursed routinely by insurers and Medicaid.

"There's something about receiving support from someone who's gone through exactly what you're going through now that people find invaluable," said Michael O'Neill, the state's assistant commissioner for mental health services.

A few handfuls of Massachusetts residents, including Zaller, have completed the eight -day training session and exams to be certified as peer specialists. On Monday, they are to be recognized at a State House ceremony.

The new field must work through many possible problems, from the potential for relapse among specialists to the potential for resistance from more traditional mental health staffers. But O'Neill expects the state's corps to grow to hundreds.

Massachusetts is redesigning its mental health system to be more user-friendly, he said, and "peer support is a fundamental element of that redesigned system." In the coming months, Massachusetts will be setting up six regional centers where peer specialists will work with clients and support each other in their fledgling vocation, O'Neill said .

The concept has taken off in 30 states. In half a dozen, Medicaid, the public insurance program for the poor and chronically ill, pays for the services, said Paolo del Vecchio, associate director for consumer affairs at the federal government's Center for Mental Health Services.

"Over the past five years, we've really seen the development of a new mental health profession emerging," he said.

The growth of the peer specialist profession comes against the backdrop of a sweeping national shift toward greater optimism that those in dire condition may improve or recover, and toward giving people with mental illness more control over the help they get. People with mental illness are not passive patients, the thinking goes; they can help themselves and as they get better, they can help others .

In their work, peer specialists are expected to share their stories of recovery when relevant to their clients. They may have learned skills worth sharing, or simply inspire hope by being much better than they once were.

The work goes beyond a typical speaker at a 12-step meeting.

It can include helping a patient in a psychiatric hospital make the shift back to living at home, or supporting an emergency room patient in crisis. A specialist might remind a team of clinicians that their patient is in a kind of hell, or take a lonely client out for pizza.

Early research, which is just beginning to accumulate, suggests that peer specialists may be particularly useful with patients who would normally resist help from the mental health system, said Larry Davidson, a Yale professor who conducts studies on peer specialists.

People with mental illness sometimes feel disliked by the professional staff who treat them, he said; it appears that with peers, "they feel less disliked and more understood."

Studies show that "people in recovery can provide services at least as well as people who don't have that experience," Davidson said. Hard data are being collected now on whether they offer "value added," he said.

Anecdotal reports of successful work by peer specialists abound. In Georgia, which has 340, they have proven particularly useful in helping discharged state hospital patients build new lives at home, said Gwen Skinner, the state's top mental health official.

Though the new field is growing, resistance remains, Davidson and others said.

They worry that staff and clinicians without mental illness could feel threatened by the influx of newcomers whose experience with illness is considered an asset. Traditional staff could also worry about being replaced by peer specialists. Certified peer specialists are supposed to earn a typical mental health staff salary of $12 an hour to $15 an hour on an entry level, said Deborah Delman executive director of M-Power, the Massachusetts mental health advocacy group that runs the peer training courses. But some peer workers who are not certified may earn less, she said.

After they are certified, Massachusetts peer specialists will continue to be overseen by The Transformation Center, a statewide training organization that is supposed to ensure they maintain ethical standards and continue their education.

The peer specialists also pose staffing issues. What if, for example, a peer specialist works with patients at a state hospital, then has a relapse and is rehospitalized there, then resumes the job? Boundaries and definitions may get fuzzy; confidentiality may become a concern.

Also, Davidson said, if supervisors view their patients as problems, then adding peer specialists to their staff is asking for more problems. The challenge, he said, is for them to shift to thinking about all people with mental illness as "having assets and strengths to help solve problems."

Judging by responses in Zaller's small therapy group in Taunton, some people with mental illness immediately see the benefits of being helped by a peer.

"He's not looking at us through a book," said one group member, Diane Silvia. "He can relate to us, and we can relate to him."

Psychiatric patients feel strain

Psychiatric patients feel strain

State investigates complaints at ERs

By Liz Kowalczyk, Globe Staff  |  July 15, 2007

The state investigated at least 21 complaints over the last 18 months that emergency departments mistreated psychiatric patients, and officials cited hospitals in half those cases for problems that included wrongly forcing patients to undress, punching or hitting patients, and restraining others for hours without proper monitoring.

One patient died while in restraints, and a patient's arm was broken as a nurse forcibly removed his pants.

These cases are a sign of the growing strain on the state's overcrowded emergency rooms, doctors, nurses, patients and state officials said, and also reflect a shortage of services for the mentally ill, the challenge of caring for sometimes-aggressive psychiatric patients, and inconsistent training of harried ER staff.

Emergency rooms can be battlegrounds. They often are the last resort for psychiatric patients in crisis -- some patients are so out of control and aggressive that mental health facilities will not take them -- and ERs have responded by creating "safe rooms" to handle such patients and on occasion calling in police for help, according to inter views with 20 doctors, nurses, patients, and hospital administrators.

ER staff give psychiatric medications but are not trained to provide comprehensive psychiatric care, they said. And many of these patients stay in ERs for days without proper treatment because of backlogs in psychiatric facilities, creating potentially volatile situations for those patients, staff, and other patients. Hospital officials said nurses, too, have been injured in confrontations, and patients contend that they are humiliated by policies like the one requiring them to undress.

Patients "will be in the ER from hours to days and they get absolutely no care," said Linda Condon, an emergency room nurse who has worked at four hospitals in Southeastern Massachusetts. "You put a person with psychiatric problems in a room with four walls and nothing to do, and there are going to be problems."

Documents from the Department of Public Health -- which conducts investigations when patients or relatives complain or hospitals themselves report problems -- show that investigators cited 11 hospitals for a range of problems. Those cases include:

A blind, disabled patient who went to Lawrence General Hospital in April because he was suicidal. Hospital policy then required psychiatric patients to undress so that staff could look for hidden drugs or weapons, but the patient wanted to keep on his jeans. A male nurse "used excessive force" to remove them, the health department found, breaking the patient's arm. The patient required surgery and a three-week hospital stay.

In April 2006, a 49-year-old former nurse who arrived in the emergency room at Melrose-Wakefield Hospital at 10:30 p.m., intoxicated and uncooperative. Staff strapped down his arms and legs, gave him sedatives, and assigned a security guard to watch him. After a nurse called the security guard away to help with another violent patient, the first patient had a fatal cardiac arrest. The hospital's internal investigation determined that the patient was not properly monitored. Staff told state investigators that the ER was "very, very busy."

In June 2006, a male teen in the Merrimack Valley Hospital ER in Haverhill began pulling medical equipment out of a wall, kicking furniture, and biting staff. While he was biting a nurse, a staff member repeatedly punched him in the face. State investigators said the hospital did not properly train staff on how to restrain patients. Hospital staff said punching was a last resort because the patient was severely injuring the nurse.

State documents released to the Globe omitted the names of patients and staff for privacy reasons. When health officials find problems during investigations, hospitals must implement plans to correct them.

The state public health and mental health departments have been so concerned about the pattern of complaints that they sent a memo to hospital executives in September, detailing 21 steps they should take to improve care of psychiatric patients in ERs, including reducing waiting times, using trained mediators, and further training staff in techniques to calm patients.

But patients and advocates for people with mental illness say problems remain rampant. They are pushing legislators to increase the mental health department's role in regulating ER care and to require the public health department to develop "best practices" for treating psychiatric patients.

"When we get upset and don't want to take our clothes off, they think we're going to flip out," said Constance Surette, 57, of Plymouth, who has bipolar disorder and works with a group pushing for legislation. "But the way they treat us, of course they're going to get that reaction. The ERs should use peer mediators to talk to [psychiatric patients] because they are frightened of the authority figures."

Surette filed a complaint with the health department last month, alleging that city police officers at Quincy Medical Center sprayed one psychiatric patient with mace and handcuffed another to a bench while she was in the ER. Hospital spokeswoman Janice Sullivan said that she could not confirm Surette's account but that the actions taken were appropriate "for the safety of everyone involved."

Doctors and nurses say they have made improvements but are doing the best they can in an impossible situation. They said the number of complaints statewide is small considering the thousands of psychiatric patients who seek care in Massachusetts ERs each year.

In 2005, ERs reported 168,000 visits by psychiatric patients, 10 percent more than in 2003, according to the Massachusetts Health Data Consortium. And they usually have to wait longer for care. The average ER stay for patients who are eventually sent home or to another hospital is nearly three hours; it's nearly six hours for psychiatric patients. And many of these patients wait two to three days in the ER for an inpatient bed in a psychiatric facility to open.

"The emergency departments are overwhelmed," said Dr. Paul Bulat, medical director of the emergency room at St. Luke's Hospital in New Bedford. "We are seeing more violent patients and out-of-control patients. We're seeing mental health problems much worse than we should be."

ER directors are reluctant to acknowledge that overcrowding hurts patient care. But staff told the state health department that busyness was a factor in several of the cases investigated, especially those that involved inadequate monitoring of patients.

In the case of the former nurse who died at Melrose-Wakefield Hospital, not only did the security guard leave the patient alone for about 20 minutes, but the patient's condition was not checked every 15 minutes while he was restrained, as required by hospital policy. Monitoring is especially crucial for intoxicated patients who receive sedatives.

Hospital spokesman Richard Pozniak said he could not comment on the case because of regulations requiring patient information to be kept confidential. State investigators said in their report that 13 patients were in the ER when the man arrived, and 20 other patients arrived before he died 4 1/2 hours later.

Public health investigators also found that lack of training is an issue, including in cases where staff used excessive force. Better training in techniques to calm patients is especially important as frustrated psychiatric patients with no where else to go spend hours in the ER .

In the case of the patient whose arm was broken at Lawrence General Hospital, investigators found a range of problems, including that the hospital's internal investigation of the complaint did not include interviewing the patient. Investigators also found no evidence that staff and security had been trained in patient's rights. And they said the nurse should have explored the patient's reasons for wanting to keep on his jeans before resorting to force.

Hospital spokeswoman Ellen Murphy Meehan said the hospital "expressed deep regret to the patient" for what it considers an accident. She said Lawrence General has since changed its policy to allow some psychiatric patients to keep on their clothes and instead be frisked and scanned with a hand-held metal detector.

Paul Dreyer, director of the state Division of Health Care Quality, said "a culture change" is needed; he is organizing an educational summit for ER staff in the fall, hoping hospitals will improve on their own, making legislation unnecessary. Legislators expect to hold hearings this summer or in the fall.

We want "people to realize they don't have to call in security the first time someone looks at them cross-eyed," Dreyer said. "The ERs are in a production mode. Their aim is to process the patients as quickly as possible to get on to the next patient. These patients may not take well to being treated that way. They may act out."

A number of hospitals said they have improved care after serious encounters.

UMass Memorial Medical Center -- where campus police beat a psychiatric patient with a baton in 2004, injuring him, and, several months later, threw a patient against a wall and called her a "bitch," according to state reports -- said it has made significant changes. These include creating a secured, quiet area for psychiatric patients and training police to use calming techniques. Dr. Patrick Smallwood, medical director for emergency mental health services, also joined the hiring panel for campus police officers last year.

Dr. Bruce Auerbach, chief for emergency and ambulatory services at Sturdy Memorial Hospital in Attleboro, said hospitals need more resources, not more regulation. "When a patient who is having a behavioral health crisis is in my ER for four days not getting the intervention he needs -- it's a travesty in our healthcare system," he said.

Right to fresh air sought for patients

Right to fresh air sought for patients
By Felicia Mello, Globe Correspondent  |  July 8, 2007

It is not much -- just a 6-foot-by-12-foot space with a few chairs, a barbecue, and pots of basil and pink flowers. But to 47-year-old Gigi Alley, the garden she has built on the porch of her Medford home symbolizes everything she did not have during seven weeks of constant confinement in a psychiatric unit at Cambridge Hospital.

"Even in times of real distress, I can find moments of calm just by listening to the wind blow in the trees and seeing squirrels," said Alley, who suffers from depression and multiple personality disorder.

That is the idea behind a bill pending in the Legislature that would require psychiatric hospitals to provide patients like Alley with a right long enjoyed by prison inmates: daily access to the outdoors.

Dubbed the Fresh Air Bill and sponsored by Senator Patricia Jehlen , a Democrat from Somerville, and Representative Frank Smizik , a Democrat of Brookline, the legislation has met with opposition from medical centers and raised questions about the proper balance between patients' autonomy and doctors' clinical judgment.

"It's not that we're against fresh air, it's that we cannot guarantee safety," said David Matteodo, executive director of the Massachusetts Association of Behavioral Health Systems, which represents the majority of the state's private psychiatric institutions. "Many patients are in the hospital because they are dangerous to themselves and to others."

Massachusetts Department of Mental Health policy states that all public psychiatric hospitals should allow residents outdoors as long as it is safe.

But the guideline does not apply to the state's 64 private facilities, which range from high-rise, acute-care units in congested urban areas to a working farm in Western Massachusetts where people with severe psychiatric disabilities shovel hay and make cheese.

Consumers of mental health services and their advocates packed a hearing late last month before the Joint Committee on Mental Health and Substance Abuse, which is considering the bill, to make their case that sequestering patients indoors amounts to discrimination. It will be months before the bill reaches the floor of the Legislature -- if it ever does.

"I think in a way this is one of the last frontiers of the civil rights movement," Jonathan Dosick, founder of the Coalition for Fresh Air Rights, said in an interview afterward.

"Psychiatric patients in the larger picture are not being treated with decency and humanity. In our laws, prison inmates are guaranteed time outside per day, and then to have this population of people who are often labeled as violent and unstable and don't enjoy this right really angers a lot of people," he said.

Proponents and critics of the bill differ on how many hospitals would be affected. Matteodo says only two of the hospitals in his group completely ban fresh air breaks.

But many allow them infrequently, only when enough staff is available, or for patients who behave well, smoke, or stay for long periods. Advocates say such restrictions can make it all but impossible for residents to get outside.

"I have talked to parents who are getting calls from an adult child in a psychiatric unit who is told they cannot go outside because they don't smoke," said Dori Hutchinson , director of services for the Boston University Center for Psychiatric Rehabilitation. "Their child takes up smoking just to be able to go outside. To me that's outrageous."

Mary Milgrom, senior director of nursing at Cambridge Hospital, where Alley stayed, said the hospital works to provide patients with fresh air on a case-by-case basis and is currently reviewing its policies.

While few researchers have explored whether being outdoors speeds recovery, many mental health professionals see the idea as common sense -- especially practitioners of ecopsychology, a budding field that examines how the natural environment influences human behavior.

"People without psychiatric conditions seem to cope better and feel more hopeful when they have access to even a small amount of landscaping," Frances Kuo , an ecopsychologist at the University of Illinois at Urbana-Champaign, wrote in a letter to the committee. "Why, then, should people in a more vulnerable state be subjected to an often barren, institutional setting?"

A century ago, wealthy eccentrics flocked to sanatoriums in the countryside to recover from stress, while poor patients spent years on state farms where they got plenty of exercise even as the government exploited their labor.

In recent years, however, advances in medication and shrinking insurance payments have led to shorter hospital stays, usually indoors in urban environments.

With an average length of stay of nine days, some private hospitals argue, fresh air becomes less of an issue.

Administrators worry they will have to construct costly outdoor courtyards for patients, or else parade them through the hospital to reach the street, potentially endangering them and the public.

"We would never want in the name of fresh air to jeopardize a life," said Dr. John Herman , director of clinical services for the psychiatry department at Massachusetts General Hospital.

Those arguments do not convince patients like Alley, who called the unit where she stayed from February to April as insular as a space station.

Even the window blinds were kept closed at all times, she said.

Returning to the outside world was so jarring, she said, that every sound grated on her nerves.

"It's easy to feel freakish and different when you're locked inside," she said. "If I had been able to go out, it would have made me feel less disconnected."

(Correction: Because of a reporting error, a story in the July 8 City & Region section about psychiatric patients being given access to the outdoors incorrectly described state law. A Department of Mental Health policy mandates that state-run hospitals provide psychiatric patients with access to the outdoors if it is safe, but such access is not required by law. All but one of the department's five inpatient facilities have secure outdoor areas for patients.)
 


© Copyright 2007 The New York Times Company
 
  

Who is My "Peer" in a "Recovery Learning Community"?

Who is My "Peer" in a "Recovery Learning Community"? 

Cheryl Stevens MD, R.M.P. (Real Mental Patient – thanks to Jonathan Delman for this designation


As part of a developing recovery learning community in Western Massachusetts, I want to address the whole issue of who among us are our 'peers' and who is/are not our 'peers' but 'allies' or 'partners' instead - people who might have an interest in peer-run services but who do not have a personal recovery experience.  

Mary Ellen Copeland MS, MA refers to people who have been labeled with psychiatric diagnoses as 'key stakeholders' and she designates all other interested people (family, friends, non-peer mental health staff, researchers, policy makers, citizens) as 'stakeholders'.  I appreciate that distinction and I largely agree with it. 


Except that there remains the not-too-small dilemma of those who work in traditional mental health service roles but for whom full-disclosure of our personal recovery histories would place us at risk for further victimization on the jobs (than what we already experience as underpaid and overworked staff).

Before we get too far afield on the theoretical questions of "who is a peer" in the "peer-run" and "peer services" frenzy, I believe in letting each individual decide in their heart of hearts if they have the kind of lived experience that would give them the moral authority to join in our discussions and then letting all interested individuals generate that discussion without too much fretting over who is one of 'us' ('real mental patients') and who is not (then by default, they would be one of 'them' - whomever "they" is/are - wanna be mental patients?!).

These kinds of artificially declared divisions - 'us/them' stuff - are often what happen when we use labels (like "peers") as a communication short-cut which creates categories of people instead of just dealing with people as individuals.  Also, like it or not, the designation of "peer" in front of "worker" or "staff" still carries the oppressive yoke of one who has been labeled. Not everyone who has lived experience in recovery is going to be eager to embrace the mantle "peer"; nor should they have to just to have a seat at our table - which is of course, "their" table too.


I find discussions of these sorts of "boundary issues" about who is '"us" and who is not "us" to be difficult.  


Our boundaries have been repeatedly violated by an overwhelmingly threatening cast of characters that have felt free to parade through our bodies, minds and psyche (souls) – our emotional, intellectual, spiritual, physical, sexual and social boundaries - without any fight from us or any social consequences or sanctions. 


Then in some weird attempt to create a 'safe' place for 'us' to dialogue (as if there were such a thing as a 'safe place' when the source of one's terror has become internalized), we end up creating 'new and improved' labels ("peer") that continue to (inadvertently) exclude - and perhaps oppress - members of our own group!  That is an interesting turn to the cycle of violence! 


Can you see how the violence comes full circle when we internalize the label “peer” to mean a person who experiences psychiatric symptoms?  This is just one more broken identity!  Webster defines peer as “one that is of equal standing with another: EQUAL. 2. (archaic) COMPANION, FELLOW.”   


Whether we suffered childhood traumatic stress/family dysfunction, adult re-enactments of violence ranging from distressing symptoms and addictions to the twisted relations of domestic violence, sexual assault, caregiver abuse and non-trauma-informed psychiatric treatment (psychiatric abuse) by continuing to use the word “peer” to mean someone with a psychiatric history we not only trump all our other past experiences, talents, roles and identities, but we are being (once again) insidiously silenced and co-opted. 


First, we cramp our magnificent Essence into another little label/box that parrots the “master narrative” (to quote Pat Deegan, PhD) of traditional mental health services. We let our distressing experiences (symptoms) or our psychiatric histories define who we are, failing once again to speak the truth about the violence we experienced. 


Second, although some of us have accepted these labels and then turned them around to make them work for us politically, others do not buy into the terminology at all even though they have had the same kinds of experiences as we have – and equally valuable contributions. 


It is an ironic twist that we who have experienced the particular oppression of psychiatric labeling - and all of the doors that automatically close when someone accepts and internalizes these labels - not only corrupt the original meaning of the word “peer” with another broken identity, but then are quick to throw this corrupted label around to define yet another "in" group.  


Now who is doing the excluding? 


This is exactly what happens when we fail to speak the truth about violence – it gets re-enacted as the “victims” re-victimize themselves and/or go on to perpetrate the same kind of violence against others.   


Our boundaries have been so thoughtlessly trampled upon again and again by the very people we trusted, do we dare trust ourselves and one another without the use of a “code word” – peer – to define (limit) us??? 


In this way, the "peer/non-peer" issue becomes yet another opportunity to either re-enact the cycle of violence or to transform our past trauma by "doing it differently" - set ourselves and one another free.

Such semantic conflicts have ended up hurting (disabling) the “consumer/survivor/ex-patient (c/s/x)” movement, by co-opting us into spearheading some kind of  Psychiatric Reformation rather than keeping our original focus as a human and civil rights movement to end psychiatric violence (“treatment”). 

I belong to the Staff Survivors Network.We are c/s/x people who work in traditional mental health services - in either peer or non-peer designated roles – to speak our truth (“until we get sick and have to quit or until we make them sick and they have to fire us” to quote Jackie McKinney).  


Having been oppressed by the effects psychiatric labeling, my “post- recovery” transformation requires me to help others who are still stuck in services (on either side of the paycheck) in addition to my social action (political transformation). I am then an “enlightened witness” raising awareness among people receiving services and speaking my truth to power – a natural role for me given my lack of social skills - I am as "reactive, confrontational, unapologetic and inconvenient" as the MPOWER T-shirt declares me to be - even inappropriate, too


My point is that there are those among us who still work in these oppressive roles in the system trying to do our part in easing the burdens of those who are still caught up in it. Some are (appropriately) not comfortable disclosing our personal experiences on the job, but might seek to have a role in a recovery learning community in off-hours....do we have room for such internal change agents without checking their R.M.P. (‘Real Mental Patient) credentials or asking them to blow their 'cover' in their day jobs?

If not, then why not? 


Our movement should not exclude c/s/x’s who work in the system nor should we insist that they “out” themselves if I they have not widely disclosed their past on the job or to supervisors.  


Although it might be a crude parallel - and I do not wish to offend anyone - I am reminded that many people worked for the resistance throughout Europe during Nazism, not just individuals of certain targeted groups.  Schindler and other righteous people were not Jewish, gay, 'mentally defectives', intellectuals, artists, activists, etc. but were 'ordinary' German or French or Italian or English citizens (at least they didn't trigger the radar of the Nazi's) who could no longer remain silent and be another complicit cog in the oppressor's machinery.  Their strategic influence depended on them NOT being on the radar!

I say that as a recovery LEARNING community, we make a decision to DO IT DIFFERENTLY. Let’s be a haven for ANYONE who feels like they are an individual - perhaps a round peg in a square hole - who can no longer participate in the cruel charade we call “treatment” (non-trauma-informed services/system) as perpetrated by a naked emperor (psychiatry).


Before we define who "we" are as a peer community of people interested in building peer-run recovery-oriented services, I suggest that we open up the tent and see/learn who comes in.  Then we can be in a better position to meet one another and learn who we are - each one of us.  


Then maybe we won't have to create another category or label that people have to fit into in order to join the discussion.  We will be able to define who "we" are and exactly what we mean when we say something like "peer-run" because we will have forged respectful and mutually responsible (trauma-informed) working relationships with one another – something that people in traditional service systems fail to take the time to do, leading to continued traumatic repetition compulsions of the cycle of violence - further disabling (silencing) clients and staff alike.  


We don’t have to be a parody of the mental health system by forcing members of our movement to adopt or to remain in oppressive little boxes (“peers, staff, clients, consumers, survivors, ex-patients, activists, service-recipients…”) which victimize one another and maintain the silence about the effects of childhood traumatic stress – growing up with neglect, physical, emotional and sexual abuse including incest; growing up in a home affected by alcoholism, “mental illness”, the loss of a parent;, someone who was incarcerated, or seeing your mother hit even just once (see www.acestudy.org for details on the effects of childhood trauma on various health indices of the U.S. adult population).

I didn't climb out of one box to be put in another one, especially one that is self-defined and self-directed.