April 23, 2009Arlington, VA— The National Alliance on Mental Illness (NAMI) has launched a new Web site, www.nami.org/soloist, as part of a social action campaign with Participant Media surrounding Friday’s release (April 24) of The Soloist, starring Jamie Foxx and Robert Downey, Jr.
"The movie will help humanize people who live with schizophrenia and are homeless," said NAMI executive director Mike Fitzpatrick. "It will help people look beyond stereotypes and create better understanding of the challenge for treatment and recovery."
"The mental health care system is in crisis. After people exit theaters and leave popcorn behind, we want to translate new awareness into action."
Schizophrenia is a mental illness that affects about 2 million Americans—twice the number living with HIV/AIDS.
The Soloist is based on the true story of the unlikely friendship between Nathaniel Ayers, a street musician living in Skid Row, and Steve Lopez, a columnist with the Los Angeles Times. In a series of columns, Lopez reports on Ayers’ journey as a gifted student from the Julliard School of Music to the streets of Los Angeles, living with schizophrenia.
On NAMI’s special Web site, visitors can:
- Watch The Soloist trailer
- Test their schizophrenia knowledge
- Listen to Dr. Ken Duckworth, NAMI’s medical director, answer questions about schizophrenia, diagnosis and recovery
- Learn more about NAMI’s education programs
- Alert state and national representatives to NAMI advocacy goals
- Register for a local NAMIWalk to support people living with mental illness
OTHER RESOURCES
Participant Media: Take Part
NAMIWalks
NAMI Schizophrenia Report
NAMI 2009 Grading the States Report
By Madison Park
(CNN) -- The intrusive voices popped into William "Bill" Garrett's head. "They're coming for you," the voices told the 18-year-old. "Find somewhere to hide; they're going to get you."
They told the Johns Hopkins University freshman that his father had poisoned the family dog, his sister had injected crystal methamphetamine into his pet lizard and his grandmother had put human body parts into his food.
As schizophrenia took hold, the Maryland teenager became lost within his own mind and had to leave college after winning a full, four-year scholarship.
Garrett's experience echoes the teenage years of Nathaniel Ayers, a promising string bass player whose musical training at the Juilliard School was cut short by schizophrenia, a brain disorder that blurs a person's ability to distinguish between reality and delusions.
Ayers became homeless and played Beethoven pieces on a broken violin in the streets of Los Angeles, California. His struggles with schizophrenia and his friendship with a Los Angeles Times columnist inspired the movie "The Soloist," which releases Friday.
His sister, Jennifer Ayers-Moore, hopes the movie will raise awareness about schizophrenia and has established the Nathaniel Anthony Ayers Foundation for the artistically gifted mentally ill.
Jennifer Ayers-Moore plays an air violin next to her older brother, Nathaniel Ayers, in San Diego, California.
The inquiry into the death of Howard Hyde [pictured], the Dartmouth man who died in a Nova Scotia jail 30 hours after he was shocked with a Taser, will be broadcast live on the internet.
It will be the first time a fatality inquiry in Nova Scotia will be visible to people outside the hearing room.
Lawyers agreed to the webcast on Tuesday.
Kevin MacDonald, who represents Hyde's sister, said it would give Hyde's father a chance to follow the proceedings from his home in the U.S., and also provide Nova Scotians with a front-row seat.
"The public are interested," said MacDonald. "The inquiry's going to be held in Halifax. But for the webcast it really would be closed off to many members of the public, even in rural Nova Scotia."
Halifax Regional Police used a Taser to subdue Hyde, 45, after responding to a domestic abuse complaint on Nov. 21, 2007. He was taken to the Central Nova Scotia Correctional Facility in Dartmouth, where he died 30 hours later after struggling twice with corrections officers.
Last fall, Nova Scotia's chief medical examiner ruled that Hyde died of excited delirium due to paranoid schizophrenia, and declared his death accidental.
MacDonald said Hyde's relatives have many questions.
"The family wants to know what those people did and why they did it, or why they didn't do what they didn't do?" said MacDonald.
There are also issues about mental-health crisis intervention, said Blair Mitchell, the lawyer acting for the Schizophrenia Society of Nova Scotia.
"Everyone's concerned about the Taser. Everyone is concerned about the use of force and the use of restraint, particularly in the case of a person in a situation of distress," said Mitchell.
Lawyers and court officials will meet again in June to discuss procedural issues, though Judge Anne Derrick won't hear from witnesses until early July.
Derrick can make recommendations relating to any matter that arises during the inquiry.
In the fall of 2007, Howard Hyde died 30 hours after he was tasered by Halifax police. Now an inquiry into his death is about to begin. Jim Nunn speaks with Dan MacRury, the lawyer for the inquiry. (To view, please click here; runs 3:14, requires RealPlayer.)
By Sharon Murphy
Imagine that you are living with terrifying delusional thoughts that some unspeakable tragedy is about to devastate you or those you love. Or you are living with unsettling auditory or visual hallucinations that give you no peace. These are facts of life that many people who live with untreated schizophrenia, or some other untreated psychosis disorder, must deal with daily.
Schizophrenia and psychosis are highly treatable brain disorders. Psychosis, a common manifestation of schizophrenia, affects a person’s ability to distinguish what is real from what is not. Symptoms of psychosis include delusions (false beliefs that are not part of reality), hallucinations (sensing things that aren’t actually there), disturbances in thinking and communication, and withdrawal from normal social activities. These symptoms are thought to be caused by disturbances in the flow of information in the brain. Schizophrenia and other psychotic disorders often first develop among people between the ages of 15 and 25 – a critical period in a young person’s life.
While the exact causes of schizophrenia and other psychotic disorders are not yet known, many advances have been made in the past few years. Researchers are looking at a number of factors that may affect brain development, such as genetic factors and gene expression, maternal illness, and viruses. Environmental factors, such as stress or the use of marijuana, have also been implicated.
There remains much stigma and discrimination associated with schizophrenia, even when a person living with the illness is very well along in their recovery journey. Stigma can be defined as a negative attitude – characterized by a lack of compassion – towards someone living with schizophrenia. Schizophrenia and psychotic disorders continue to be stigmatized because having a mental illness somehow implies a distinction from being physically unwell, although, as neuroimaging studies have recently shown, the two are intimately entwined. To some, the term "mental" also suggests something besides a legitimate medical condition, something that results from the person’s own doing. That somehow the person should just get over it.
For someone with schizophrenia or some other psychotic disorder, the consequences of stigma can be devastating in many cases – almost as devastating as the illness itself. This results in people not seeking treatment because they fear being labelled and rejected by family, friends, co-workers and employers. And some people become socially isolated because of the shame engendered by the stigma.
Stigma also leads to discrimination in the workplace and inadequate health insurance coverage compared with coverage for other illnesses. The evidence indicates that the time has come to shift the focus of research and action from stigma to discrimination. So instead of asking an employer if they would hire a person with a mental illness, we should ask if they actually do so!
Language is also important – that is, the messages conveyed by everyday words that are tossed about without a care, and how this language contributes to negative stereotyping. We are all familiar with this language; it includes such words as "loony," "crazy" and "schizophrenic." Schizophrenia is not a religion (i.e., I am a Catholic), and it is not multiple personality disorder. It is interesting that such negative stereotyping language is rarely used now in reference to physical illness. It is difficult to fathom why it is still used in relation to the mentally ill.
Michael Kirby, in his report on mental illness called Out of the Shadows at Last, quotes from another report entitled More for the Mind: "In no other field, except perhaps leprosy, has there been as much confusion, misdirection and discrimination against the patient as in mental illness … Down through the ages, they have been estranged by society and cast out to wander in the wilderness. Mental illness, even today, is all too often considered a crime to be punished, a sin to be expiated, a possessing demon to be exorcised, a disgrace to be hushed up, a personality weakness to be deplored or a welfare problem to be handled as cheaply as possible."
Dr. Kirby notes these words were written in 1963, nearly half a century ago. He also notes, incredibly, that the 2,000 submissions to the standing Senate committee on social affairs, science and technology from 2004 to 2006 made it clear that these opinions still ring true today. Society still has a long way to go in combating stigmatization and discrimination of the mentally ill.To help stamp out old prejudices and to raise awareness about schizophrenia and other psychotic disorders, the Schizophrenia Society of Nova Scotia invites you to lace up your sneakers and join us on our five-kilometre Road to Recovery Walkathon. The walkathon takes place on Saturday, May 9, from 12 noon to 6 p.m., and starts at St. Matthew’s Church Hall, 1479 Barrington St., Halifax. Registration is free. To register to participate, and to obtain an official pledge sheet, please contact Donna Methot at 902-462-8658 or email hrmchapterssns@accesswave.ca. For more information, visit www.ssns.ca.
The Schizophrenia Society of Nova Scotia is a community-based not-for-profit organization incorporated in April 1982. Its mission is to improve the quality of life for those affected by schizophrenia and psychosis – including families and friends. The society has over 25 years of solid history providing education and support services to individuals living with schizophrenia and other psychotic disorders, as well as their families and friends. The vast majority of its current work is focused on providing education and support, as well as influencing public policy relating to the timely provision of mental health services.
Sharon Murphy is director, Schizophrenia Society of Nova Scotia.
The following poster series examines the relationship between mental illness and stigma. These posters encourage others to help put an end to stigma.
Click on the image to enlarge it.
Please Don’t Judge Me
The left-hand poster emphasizes the various misperceptions and stereotypes that exist today. For those dealing with a mental disorder, stigma can decrease the possibility of recovery.
This is Reality
The middle poster reveals the truth about mental illness. Many will be surprised by the facts and may begin to view mental illness in a positive light.
Proud of Who I Am
The right-hand poster puts a face on recovery and shows that a person should not be defined by his or her illness.
A series edited by Thomas R. Insel published in The Journal of Clinical Investigation:Mental disorders such as schizophrenia, bipolar illness, depression, and autism are the number one source of medical disability for people 15–44 years of age in the U.S. and Canada. In the past, these disorders have been considered psychological conflicts or chemical imbalances, but, as highlighted in this Review series, recent research indicates they are brain disorders, developmental disorders, and complex genetic disorders.All papers in the series are free to download by clicking here.
Click on the image to expand it.
Page 6 of the March 2009 issue features a profile of Dr. Zenovia Ursuliak (pictured, right), a regular guest educator on motivational interviewing at meetings of the HRM Chapter of the SSNS.To download the entire article, please click here (PDF).By Paul H. Lysaker [pictured] and Kelly D. Buck
Contrary to long-standing pessimistic views regarding the prognosis for people with schizophrenia, emerging literature suggests that many with this condition can meaningfully recover over time.
Using increasingly complex models of recovery with clearly defined operationalized criteria, numerous longitudinal studies have provided data pointing out that progressive deterioration is more of an exception than a rule for people with this condition.
To address the issues of the definition and likelihood of recovery from schizophrenia, this article reviews evolving definitions which stress that recovery must involve the development of a sense of hope, self-reliance, and a personalized awareness of current strengths and challenges.
Empirical research indicates that while many with schizophrenia experience significant bouts of disability, more people experience long periods of relatively good functioning, including symptom remission, healthy levels of self-esteem, and meaningful community participation.
Implications for how clinical practice can reinforce and promote recovery are discussed.
To download the full text of this article, please click here (PDF).By Amy C. Watson (1), Patrick Corrigan (2), Jonathon E. Larson (2), and Molly Sells (3)
- Jane Addams College of Social Work, University of Illinois at Chicago
- Joint Research Programs in Psychiatric Rehabilitation, Illinois Institute of Technology
- University of Chicago
Persons with mental illnesses such as schizophrenia may internalize mental illness stigma and experience diminished self-esteem and self-efficacy. In this article, we describe a model of self-stigma and examine a hierarchy of mediational processes within the model.
Seventy-one individuals with serious mental illness were recruited from a community support program at an outpatient psychiatry department of a community hospital. All participants completed the Self-Stigma of Mental Illness Scale along with measures of group identification (GI), perceived legitimacy (PL), self-esteem, and self-efficacy. Models examining the steps involved in self-stigma process were tested. Specifically, after conducting preliminary bivariate analyses, we examine stereotype agreement as a mediator of GI and PL on stigma self-concurrence (SSC); SSC as a mediator of GI and PL on self-efficacy; and SSC as a mediator of GI and PL on self-esteem.
Findings provide partial support for the proposed mediational processes and point to GI, PL, and stereotype agreement as areas to be considered for intervention.
Rutgers geneticist Linda Brzustowicz [pictured] and her colleagues have identified a specific DNA change that is likely to increase risk for developing schizophrenia in some people. It provides a potential mechanism that may be a point of entry for drug therapy, consistent with the growing trend of personalized medicine.
The research findings are reported in the April issue of the American Journal of Psychiatry (AJP). An accompanying editorial highlights the significance of this work.
Brzustowicz, a professor of genetics at Rutgers, The State University of New Jersey, and board-certified psychiatrist, said that the research has demonstrated a functional DNA change that increases gene expression. This conclusion is based on its presence in the genes of a Canadian study population of 24 families where multiple individuals had been diagnosed with schizophrenia. The gene in question, NOS1AP, previously known as CAPON, is one which Brzustowicz has been studying for six years.
The paper also presents an innovative statistical method, Posterior Probability of Linkage Disequilibrium (PPLD). This is the work of co-author Veronica Vieland of The Research Institute at Nationwide Children's Hospital, Columbus, Ohio. The new analytical technique quantifies the statistical evidence for association, in this case between the altered gene and schizophrenia. The researchers evaluated 60 variants of the gene or single nucleotide polymorphisms (SNPs).
"Our use of the PPLD was really helpful in sorting the evidence. It showed that of the 60 SNPs we were evaluating, three had a much higher probability of association with the illness," Brzustowicz said. "This paved the way for our next step – doing a functional analysis using cells grown in culture – which is much more labor intensive. We had reduced our 60 candidates down to a short list of three, which greatly simplified this next step."
Each of the three candidate SNPs was introduced into separate cultures of identical cloned cells derived from human brain tissue. The cultures differed only in which of the SNP variants was introduced. The challenge was to measure the quantity of overexpression, that is, how much excess protein was being produced by each of the three variants.
To each culture the researchers also added DNA that contained the gene that produces the enzyme which makes a firefly glow, along with human regulatory DNA which would control the production of that enzyme. The three kinds of DNA (the SNP, the firefly and the human regulatory) were all joined together prior to insertion into the brain-derived cells. Thus, the amount of expression of each SNP would be reflected (via the regulatory DNA) in the intensity of the light produced. An instrument known as a luminometer measured the glow produced and showed a dramatic increase in gene expression in one variant over the others. These results echo the increased expression of NOS1AP that has been observed in postmortem brain samples from individuals with schizophrenia.
Bonnie Firestein, a professor in Rutgers' Department of Cell Biology and Neuroscience, though not an author on the AJP paper, is conducting complementary research. She is investigating the consequences of increased expression of the NOS1AP gene. Firestein is looking at this gene in cells in culture and examining how the overexpression of this protein alters the way neurons branch.
Identifying this specific functional genetic variant is an important step, but there are qualifiers. Schizophrenia is not a single-gene disorder, and there are environmental factors that are also important. "It is not as though, if you have this altered gene, you will get the disease," said Brzustowicz.
The frequency of this variant in the general population is more than 40 percent. Approximately 1 percent of the general population has schizophrenia but not all of those with the illness will have this altered gene. Brzustowicz estimates that the frequency of the altered gene in people with schizophrenia is going to be higher than the average in the general population. For example, the frequency of this variant in people with schizophrenia in the Canadian families is 55 percent.
To refine this estimate, Brzustowicz and her team will be looking at the altered gene's frequency in DNA samples from the National Institute of Mental Health collection of cell lines housed in the Rutgers University Cell and DNA Repository. The collection includes samples drawn from large populations of Asian, Caucasian, African American and Hispanic individuals with schizophrenia.
Adapted from materials provided by Rutgers University.
The Mental Health Commission of Canada Announces a Request for Proposals for a study of Types of Interactions, Attitudes, Experiences and Feedback: When People Living with Severe Mental Health Illnesses Interact with the PoliceFor the complete document, please click here (PDF)The Mental Health Commission of Canada (MHCC) is requesting proposals from qualified candidates to conduct a study of types of interactions and experiences with, attitudes towards, and feedback for the police from the perspective of persons living with severe mental health problems and illnesses.
Background
The MHCC is an arms-length, federally-funded, non-profit organization. It was created to focus national attention on mental health issues and to work to improve the health and social outcomes of people living with mental health problems and illnesses. The Government of Canada established the Commission in 2007 in response to the findings of a Senate-generated report Out of the Shadows at Last – Transforming Mental Health, Mental Illness and Addiction Services in Canada (Standing Committee on Social Affairs, 2006).
Purpose of the Study
Therefore, the purpose of the study will be (1) to examine the perceptions of persons living with severe mental illness1 of their interactions with the police, (2) to determine the attitudes of persons with a severe mental illness* toward police in general and (3) to solicit feedback that persons with a severe mental illness would like to convey to police. It is hoped that these data will contribute to the development of evidence-based best practice guidelines for police services.
* “Severe mental illness” in this study will refer to disorders such as schizophrenia, bipolar disorder (manic-depression), and Alzheimer's disease which significantly disrupt a person's ability to think, feel, and relate to others and to their environment [Cotton, D. & Zanibbi, K. (2003). Police officers’ knowledge about mental illness. Canadian Journal of Police and Security Services, 1: 136-143.].
Caution urged when using stun guns on young people, mentally illAlso see:
By Jim Bronskill, The Canadian PressOTTAWA — The RCMP complaints commissioner says the Mounties should be more careful about using stun guns on young people and the mentally ill.
In a final report on RCMP Taser use last year, Paul Kennedy also says the force’s tracking and analysis of incidents still needs improvement.
The findings come 10 months after Kennedy, chairman of the Commission for Public Complaints Against the RCMP, called on the police force to rein in Taser use and better monitor how officers use the potent device.
In his report Monday, the RCMP watchdog said there has been commendable progress on his 22 recommendations to the force, "however, more needs to be done in order to alleviate many of the concerns repeatedly expressed by the commission."
To that end, the commission is working with the RCMP on member training, reporting and policy development "with the view to providing a more in-depth analysis of the RCMP’s progress on all of the recommendations."
Some of the commission’s figures, released in a preliminary report last week, show the Mounties were far less likely to fire their Tasers last year. Use dropped 30 per cent from a peak of 1,583 incidents in 2007.
The statistics suggest police officers were more cautious about firing the stun guns following a public furor.
A B.C. inquiry is probing the case of Polish immigrant Robert Dziekanski, who died in October 2007 after he was stunned five times with an RCMP Taser at the Vancouver airport.
The RCMP says it has limited Taser use to situations involving a threat to officer or public safety.
The new Mountie policy warns officers that Taser use carries a risk of death, particularly for agitated people.
But Kennedy says it’s too early to tell whether the changes will address the issues he’s outlined. "While the revised policy is a positive step forward, the commission remains concerned."
The report flags two specific groups — young people and the mentally ill.
"It is not that (Tasers) should never be used with these groups, but rather, that there should be a higher threshold for usage where these subjects are concerned. This higher threshold is not always observed."
It says the RCMP still appears to define "at-risk populations" as acutely agitated and delirious people and, before using the Taser, the force needs to consider those experiencing mental health crises or people who’ve taken large quantities of drugs or alcohol.
"This is problematic as there is a higher statistical likelihood that these persons will die in police custody and therefore any effort made to mitigate this outcome should be adopted by the RCMP."
The report also notes that while members reported that use of the Taser avoided the use of lethal force — that is, a conventional gun — in over half of the reports, "there is reason to be suspicious of this figure."
In many cases, the summaries of these Taser incidents "did not support the members’ statement" that lethal force would have been used if not for the Taser.
Finally, Kennedy said the RCMP has not fully addressed how it will tackle the issue of under-reporting by members who use stun guns — a problem identified in his previous report. And while the force has begun to share Taser usage reports with more people inside the force, it is not clear how the information is being incorporated into training.
The RCMP had no immediate comment on the report.
Hilary Homes, a human rights campaigner with Amnesty International Canada, says there is a lack of clarity about RCMP policy on Taser use.
"Until there is clear policy, and a demonstration that that clear policy is followed, there simply won’t be the confidence that the police would like to see in their own work."
‘While the revised policy is a positive step forward, the commission remains concerned.’
An article published in the April 3rd edition of Psychiatric News:By Mark Moran
American Psychiatric Association (APA) leaders involved with the report say it points to a "paradigm shift" in the way medicine and psychiatry approach mental health and illness in the future.
Prevention of mental illness and promotion of mental health are scientifically feasible, and the time is ripe to transfer the science into practice.
That is the conclusion of a landmark report by the Institute of Medicine (IOM) titled "Preventing Mental, Emotional, and Behavioral Disorders Among Young People: Progress and Possibilities."
Prevention practices have emerged in a variety of settings, including programs for selected at-risk populations—such as children and youth in the child-welfare system—school-based interventions, interventions in primary care settings, and community services designed to address a broad array of mental health needs and populations, according to the report.
The report updates a 1994 IOM book, Reducing Risks for Mental Disorders, and focuses attention on the research base and program experience with younger populations that have emerged since that time.
The book-length report includes chapters on (among other subjects) using a developmental framework to guide prevention and promotion; perspectives from developmental neuroscience; preventive intervention research—including family, school, and community interventions; prevention of specific disorders; screening; benefits and costs of prevention; and implementation and dissemination of prevention and promotion practices.
APA leaders are hailing the report saying it points to a paradigm shift in the way psychiatry approaches mental illness in the future.
"Both prevention and psychiatry have always been the stepchildren of medicine," said APA President Nada Stotland, M.D. "It is not as glamorous as open-heart surgery or restoring a brilliant individual with bipolar disorder to her career and family. It is much easier to get credit for fixing something that is broken than for keeping it from breaking in the first place. However, most of the improvements in life span are the result of preventive, rather than treatment, measures—immunizations, pap smears, clean air and water, smoking cessation.
"Most health professionals are unaware of the crucial data in the IOM report," Stotland said. "Now that it has been published, and we know that there are effective ways to prevent psychiatric disorders in children, there is no excuse for our country's continued failure to implement the policies that would protect our children from lifetimes of suffering and disability."
Child psychiatrist William Beardslee, M.D., a member of the IOM committee and chair of APA's Corresponding Committee on Prevention of Mental Disorders and Promotion of Mental Health, echoed Stotland.
"This is a landmark report and deserves to be read with care by every psychiatrist," Beardslee told Psychiatric News. "Psychiatry has an opportunity to provide extraordinary leadership in the prevention of mental illness, and we strongly urge APA and individual psychiatrists to support the report's recommendations."
Those recommendations include a call for a coordinated national strategy originating in the White House for implementing prevention and promotion practices.
The IOM report stated, "The White House should create an ongoing mechanism involving federal agencies, stakeholders (including professional associations), and key researchers to develop and implement a strategic approach to the promotion of mental, emotional, and behavioral health and the prevention of mental, emotional, and behavior disorders and related problem behaviors in young people."
Psychiatrist Carl Bell, M.D., also a member of the IOM committee, said that recommendation was modeled on the success of a similar White House cabinet-level strategy during the Clinton administration concerning violence against women.
"What the IOM is saying is that it is possible to prevent psychiatric disorders, substance abuse, and problem behaviors," Bell told Psychiatric News. "The challenge for psychiatry is to shift its paradigm and stop thinking of itself as a field that only treats the sick, but begins to think in terms of a public-health model."
Beardslee and Bell both stressed that the IOM report underscores the importance—and scientific basis—not only of preventing or preempting the occurrence of major mental disorders among individuals who exhibit preclinical symptoms, but also broad population-based strategies aimed at promoting mental health.
Beardslee stressed as well that in the background of all behavioral disorders are the issues of poverty and health disparities.
"Prevention should be a part of regular psychiatric practice," Beardslee said. "I see three levels at which psychiatrists can be putting prevention into practice. As social scientists, we should be embracing the public-health perspective and broad reforms to address health disparities and poverty. A second level where psychiatrists can have a very large impact is in working with adults with mental illness who have children, doing preventive work using psychoeducational models.
"And the third level is the use of preventive strategies that have been designed for people at very high risk."
An article published online by the journal Archives of Psychiatric Nursing:Loss and Grief in Patients With Schizophrenia: On Living in Another WorldPosting of this abstract is for the purposes of research into schizophrenia.
By Maria Mauritz (a, b) and Berno van Meijela (b)
(a) Support and Psychosis Programme of the Mental Health Care Unit GGNet in Zevenaar, The Netherlands
(b) Inholland University in Amsterdam, The Netherlands
Aim
Schizophrenia enormously impacts the lives of the patients who have this psychiatric disorder. This study addresses the lived experience of grief in schizophrenia.
Method
A qualitative study based on the grounded theory was designed. Ten patients were interviewed in depth on their feelings of loss and ways of coping.
Results
All respondents experienced significant feelings of loss. Internal and external losses were distinguished. Respondents dealt with their losses by accepting their diagnosis and treatment, identifying with other patients, learning about schizophrenia, and searching for meaning.
Discussion
Respondents were able to identify their significant losses and verbalize the accompanied feelings. They went through an intensive grieving process that to a certain extent led to coming to terms. During the interviews, the presence of grief was evident, whereas clinical depression was excluded.
Clinical implications
Interventions may be improved by the following factors: (a) optimal assessment and treatment of symptoms; (b) adequate information about symptoms, treatment and its effects, and prognosis; (c) opportunities to identify with other patients; (d) strengthening of social support; and (e) a relationship of trust with care providers based on an accepting attitude.
Critics say supposed cause explains nothing
By Ben Gelinas, with files from Laura Drake
A crazed man brought down by a police Taser last October died from what the medical examiner calls excited delirium caused by drugs.Trevor Grimolfson [pictured], 38, was hit twice by the Taser after he attacked a man who came into his Stony Plain Road tattoo parlour and then smashed up a nearby pawnshop. Witnesses said Grimolfson was combative, violent and couldn't be calmed. After he was hit with the Taser, police handcuffed him. He soon lost consciousness and was declared dead in hospital.
"The cause of death was excited delirium brought on by drugs he'd taken," Alberta Justice spokesman David Dear said.
No further details on the ruling were released.
A representative from the medical examiner's office could not be reached for comment.
Asked about excited delirium, Michael Webster, a police psychologist who gave testimony at the inquiry into the death of Polish immigrant Robert Dziekanski at Vancouver's airport, said that "it's a fantasy.
"Police and medical examiners have taken something that was initially descriptive and have made it into something prescriptive. And that's where the controversy comes from, because it's just not a diagnosis, nor is it a cause of death."
Webster said the vast majority of physicians, psychologists and psychiatrists do not recognize that excited delirium exists.
"I would challenge your medical examiner to show me excited delirium in that corpse."
It is Webster's opinion that the continuing diagnosis of excited delirium as a legitimate cause of death further drives a wedge between law enforcement and the majority of the medical community.
Alberta's chief medical examiner has been outspoken in his belief that excited delirium is a legitimate condition. Someone in the state could die without being touched or even when alone. It seems to have nothing to do with the method of restraint, Dr. Graeme Dowling told the Canadian National Committee for Police in November.
"They may die in spite of what we do."
Dowling said that it wouldn't be uncommon to need six to eight police officers to restrain someone in an excited delirium, as it is characterized by abnormal strength.
Following Grimolfson's death, the use of a Taser promptly became the public focus.
The medical examiner's ruling "once again shows that when these arrest-related deaths occur, jumping to conclusions is the wrong way to go," Taser International spokesman Steve Tuttle said. "We have seen this time and time again repeatedly, and it has sadly affected public opinion."
The Arizona company has been under intense public scrutiny in Canada since Dziekanski's death was captured on amateur video.
Tuttle said that incident ignited something that borders on hysteria in this country.
"We call it a crisis in Canada."
A fatality review board will determine whether a fatality inquiry will be recommended in Grimolfson's case.
The Alberta Serious Incident Response Team which looks into deaths involving police is still investigating.
Alberta Solicitor General spokesman Andy Weiler said no one from the response team will comment on the medical examiner's report until the investigation is complete.
Leading mental health charity Rethink severe mental illness today (March 24) welcomed a new guideline on the treatment of schizophrenia from the National Institute for Health and Clinical Excellence (NICE), but warned that it would fail unless local services were forced to offer real choice.
Rethink Director of Public Affairs Paul Corry said: "The guideline sets out 21st century treatment options that, if implemented, would support people's early recovery from an illness that too often condemns people to a life of isolation and poverty.
"The guideline promotes choice in medication, access to the latest psychological treatments and help to be made available as early as possible.
"Unfortunately, the reality on the ground is that too many people are denied choice of any kind, face 18 month long queues for their first contact with a psychiatrist and can’t even get on a waiting list for the latest psychological treatments.
"It is going to be an uphill struggle to get these guidelines implemented on the ground and NICE still lacks the teeth to enforce its guidelines within a National Health Service that treats mental health as the poor relation."
NICE has reversed its previous advice to make modern atypical medicines a first line of treatment for schizophrenia. It now says that doctors should offer a choice between a range of older and newer medications, because newer medications have been shown to have worrying side effects as serious as those associated with older medication.
Mr Corry said: "The newer medications can cost up to £2,000 for a year’s treatment. This is cheap by comparison with cancer drugs but still up to 10 times as much as the older drugs.
"Our worry is that unless NICE is given the teeth to insist on choice, the NHS will opt for the older, cheaper drugs that are associated with long-term debilitating and stigmatising side effects."
NICE calls for the psychological treatment Cognitive Behavioural Therapy (CBT) to be made available to people with schizophrenia.
Mr Corry said: "CBT should be available to everyone who can benefit from it. The government is investing over £170 million in making it available to people with anxiety and depression – which is welcome – but so far people with schizophrenia have missed out.
"The government needs to come up with the extra resources to enable clinicians to offer CBT as a matter of course to people with schizophrenia, otherwise NICE will leave a nasty taste in the mouth of those whose expectations are dashed."
FOR COMMENT OR CASE STUDIES CONTACT
Hilary Caprani 020 7840 3144 / 07870 204583 hilary.caprani@rethink.org
Mental health care "consumers" are taking a greater role in their own recovery, moving beyond merely being patients to being providers.
By Marcia MeierFred Frese was a young Marine Corps officer and graduate student when he started experiencing the psychotic delusions of paranoid schizophrenia. He was hospitalized, the first of what would be 11 such institutionalizations. But he also managed to complete graduate school and earn a doctorate in psychology from Ohio University. He married and had four children, and 12 years after his first hospitalization, he became a chief psychologist for the Ohio mental health system.
That was 30 years ago. Today, Frese is director of the Summit County Recovery Project in Akron, Ohio, and one of the most articulate and outspoken national advocates of mental health recovery programs.
A crucial part of that recovery is battling the stigma of mental illness, he said. About 6 percent of the population, or one in 17 Americans, suffers from a serious mental illness. One in five families are affected.
"It's important for us to get out on Front Street and talk about our experiences," Frese said. "Many of us have long experiences with hospitalization, institutionalization. In the '70s, many of us were simply put away."
Frese knows what he's talking about. When he had his first psychiatric breakdown, he was 25 and in the Marines. He started to experience classic symptoms of paranoid schizophrenia: delusions, hearing voices, inability to separate fact from fantasy, inability to think logically, an all-consuming paranoia. He came to believe that enemy nations had hypnotized American leaders in a plot to destroy the United States. He was sent to the naval hospital in Bethesda, Md., where he stayed for five months.
Since then, he has been hospitalized numerous times, but he's also been able to function with the help of medication. He earned graduate degrees in international business management and psychology, and served as director of psychology for the Western Reserve Psychiatric Hospital in Sagamore Hills, Ohio, for 15 years until he retired in 1985. Since the early 1990s, he has directed the Summit County Recovery Project.
An abstract from the February issue of Mental Health and Substance Use: dual diagnosis:Self-reported reasons for substance use in schizophrenia: a Q methodological investigation
Mental Health and Substance Use: dual diagnosis, Volume 2, Issue 1 February 2009, pages 24-39.
By Lynsey Gregg, Gillian Haddock, and Christine Barrowclough
Division of Clinical Psychology, School of Psychological Sciences, University of Manchester, UK
Abstract:
Large numbers of people with a diagnosis of schizophrenia use drugs and alcohol, resulting in poorer symptomatic and functional outcomes for many.
Aims: To examine the reasons that people with a diagnosis of schizophrenia give for their own alcohol and drug use.
Method: Q methodology was used to examine reasons for use. Forty-five people with a diagnosis of schizophrenia or schizoaffective disorder and comorbid substance misuse completed the sorting procedure.
Results: Analysis of the Q Sorts revealed three distinct groups of substance users:Conclusion: People with a diagnosis of schizophrenia who use substances explain their substance use in different ways. The identification of subgroups of users may be useful in the development of interventions aimed at reducing substance use in this group.
- those who predominantly used for social and enhancement reasons, to 'chill out and have a good time with others';
- those who used to regulate negative affect and alleviate positive symptoms, to 'cope with distressing emotions and symptoms';
- those who used substances to augment themselves and intensify their experiences, to 'feel bigger, better and inspired'.
An article posted today by BBC News:Two studies have pinpointed a single gene as key to the development and treatment of schizophrenia.To read the entire article, please click here.
A US team from the Howard Hughes Medical Institute found that a mutated version of the DISC1 gene disrupts the growth and development of brain cells.
And a team from the University of Edinburgh showed that the gene affects how patients respond to treatment.
Both studies, published in the journals PLoS One and Cell, raise hopes of more effective treatment for schizophrenia.
Kings County Chapter of the Schizophrenia Society of Nova Scotia board members Pat MacLean (left) and Margaret Burton are raising awareness of an information program and a self-help group in our community dedicated to offering support to the family members and friends of people living with mental illnesses. Photograph by Kirk Starratt.
By Kirk Starratt
Sometimes dealing with a mental illness can make you feel isolated or leave you wondering where to turn for support.
Recognizing a need to share information, provide support and help debunk the myths and stigma associated with mental illness, the Kings County Chapter of the Schizophrenia Society of Nova Scotia is offering a 10-session information program and a self-help group to reach out to affected members of the community.
“We’re concerned about the fact that families often are the key caregivers to someone with a serious mental illness,” board member Pat MacLean said. “It’s not always easy to get the information they need.”
Because of this, the society has launched the information program, called “Strengthening Families Together”. It’s free to attend and is geared toward family members and friends of people experiencing serious mental illnesses. The sessions are being held at the offices of the Kings County Branch of the Canadian Mental Health Association (CMHA) in Kentville. The first will be held Tuesday evening, March 24 at 7 p.m. and each runs for two hours.
The sessions will provide information about mental illnesses, skill-building and support. Participants will learn about early intervention and recovery, treatments and supports, coping with challenges of daily living, navigating the mental health system and the importance of taking care of one’s self.
‘Not talking about a few people here’
MacLean said it’s important to reach the general public with information on what is available in terms of supports and services.
“We’re not talking about a few people here,” she said. “A lot of people have serious mental illnesses.”
There are about 600 people in Kings County living with schizophrenia, about 600 living with bipolar condition and about 1,000 living with depression. However, because of the stigma, people often remain quiet and don’t seek help.
Board member Margaret Burton said that one in five people will experience mental illness at some point in life and the numbers are much higher when you consider how many people will be affected indirectly. She said that, as a society, they see three components to their work: advocacy, education and support.
She said her family took the “Strengthening Families Together” program and recognized a need for ongoing support for family members and friends of those living with mental illness.
This past fall, a group of family members from within the society formed a self-help group. All the members are people who have been touched directly or indirectly by mental illness.
Burton said families need information about mental illness and about the services that may be available to them. They need help in coping over the long-term with the illness and its consequences, including acquiring skills for problem solving, conflict resolution and stress management.
Confidentiality a must
They need support to be able to cope with the challenges of caring for someone with a mental illness as well as to be able to address their own emotional needs.
As with other self-help groups, confidentiality is a must. Meetings take place once a month at the CMHA offices in Kentville.
If you or someone you know might be interested in the information sessions or the self-help group, call the Schizophrenia Society of Nova Scotia toll-free at 1-800-465-2601 for more information or visit www.blog.ssns.ca.
The society believes there is a greater need for understanding among members of the general public in order to overcome the myths and stigma associated with mental illness. They extend thanks to the Kings CMHA for providing their facilities for the information program and the self-help group.
Schizophrenia is a complex brain illness that affects one per cent of the general population and can be particularly devastating to young people. The Federal Kirby Report of May 2006, “Out of the Shadows at Last”, states that family members play an essential, sometimes lifesaving, role in caring for persons living with mental illnesses.
Almost 60 per cent of the families of people living with serious mental illnesses are estimated to serve in the capacity of primary caregiver, usually with little guidance, support, relief or respite.
By Annette Osted, Executive Director, Registered Psychiatric Nurses of Canada
Two terrible tragedies have vaulted into public awareness during the past few weeks. Both involved individuals who suffered from a mental illness and elicited much response from the Canadian public. These tragic events have also highlighted grave weaknesses in our understanding and approach to mental health in Canada.
The first event was the court trial of Vince Li who carried out the horrendous killing of Timothy McLean on a Greyhound bus in Manitoba, but was found not criminally responsible for the murder because he suffers from a mental illness.
The other was the public release of a report on the death by suicide of 19 year old Ashley Smith in a federal women’s prison. The report concluded that her death was “preventable”, and partially provoked by instructions to correctional staff that they should not intervene with Ms Smith when she attempted to asphyxiate herself.
In the first case, we must ask ourselves whether the early diagnosis and appropriate treatment of Vince Li’s mental illness could have averted the death of an innocent person. Certainly the evidence is strong that people suffering from schizophrenia are rarely a danger to other people and, with proper treatment, can recover to live relatively normal lives.
Sadly this tragedy has mostly served to reinforce public stereotypes about the dangers of people with mental illness.
In the Ashley Smith case, a lack of understanding about the effects of prolonged emotional distress and the impact of incarceration on the emotionally vulnerable led to a situation where correctional officers stood by and watched as a young woman killed herself. It seems clear that better mental health training and protocols that protect people in emotional crisis could have averted this tragedy.
These two serious events reflect our society’s approach to mental health and mental illness. Mental health is, for the most part, ignored. We have programs that promote physical health, but little has been done to actively promote mental health, despite the fact that mental health challenges affect us all in one way or another.
One in four persons in Canada will require treatment for a mental illness and/or addiction. Most of us know someone who has suffered from depression, anxiety or other mental health problems. And yet mental illness is still an issue avoided in conversation.
Some have compared this avoidance to the vast public silence around HIV and AIDS twenty-five years ago or the hush that surrounded cancer in the past. With both diseases fear was a common factor: fear that we could ‘catch’ it; fear that the person who had ‘it’ was incurable and therefore doomed. Today, thanks to research, and open discussion on the part of survivors, we know that cancer and AIDS are illnesses that can be treated.
Mental illness today suffers from stigma that is at least comparable to that of cancer or AIDS in the past. There is still a tremendous reluctance in Canadian society to talk openly and learn about mental illness – and this must be overcome.
A strong mental health literacy program for all age groups would be a good beginning. Such a program would teach people what good mental health is, how to maintain it; how to identify the signs of declining mental health; what resources are available; and how to identify and assist people requiring help for their mental health issues.
We can only have tremendous compassion for Timothy McLean, his family, and all of the other victims on the bus that day. This compassion compels us as a society to use our institutions to investigate and institute measures that will safeguard Canadians from similar harm in the future.
But our compassion should also lead us to challenge the stigma against mental illness and other obstacles that so profoundly interfere with the treatment and recovery of affected people. We must also accept responsibility as a society to care for the victims of mental illness just as we care for people who have cancer or HIV/AIDS.
We cannot truly say that justice will be served in the cases of Timothy McLean and Ashley Smith until we also examine the fact that gaps in treatment, stigma, fear, discrimination and cultural perceptions of mental illness also played a role in these tragedies.
For additional information please contact:
Christopher Wilson
Media Relations
Canadian Alliance on Mental Illness and Mental Health
(613) 298-5464
By André Picard (pictured)
The trial of Vince Li, the so-called "Greyhound bus killer," garnered a lot of media attention. There is no need to rehash the gruesome details.
But let's linger on one aspect of the case, because much was made of the fact that Mr. Li suffers from a severe mental illness, schizophrenia.
This is the story of someone else who suffers from schizophrenia.
His name is Matt. Like most [people with schizophrenia], he has never harmed anyone physically - except himself.
But he and his illness have caused his family and friends untold pain - a pain made more searing by the coverage of Mr. Li's trial. The descriptions of him as "psycho," a "sicko," a "nutcase" and so on hurt profoundly; so, too, did the focus on Mr. Li's "crazy" symptoms and the lack of attention paid to the fact that he was untreated for a treatable condition.
"Nobody deserves to die like that young man on the bus. But seeing the way schizophrenia was reported made me sick," said Steve, Matt's father.
They have a last name, but have asked that it not be used. There is a lot of stigma surrounding mental illness, and vilification of the mentally ill. "I'm self-employed and I can't afford having people think of me as the father of a 'freak.' That's the sad reality," Steve says.
But, at the same time, Steve wants the public to see another side of schizophrenia, one that will never be front-page news.
It is a story of frustration with Canada's patchwork mental-health system, one in which care is not available until there is a crisis. It is the story of the devastated family of the person with schizophrenia.
It is a story of anger with a legal system that gives people with severe mental illness the right to refuse treatment, and affords families no right to help their loved ones get well.
The family has lost count of how many times Matt, who is only 20, has attempted suicide, how many times he has overdosed.
Matt will ingest any drug he can get his hands on, from NyQuil to ecstasy. When he does, the demons that haunt him recede into the shadows for a while.
Like many people with severe, untreated mental illness, Matt has an ever-lengthening criminal record, most of it related to shoplifting over-the-counter drugs at pharmacies and public intoxication.
He spends nearly as much time in prison as he does in hospital - essentially jailed for being ill.
Who could have imagined it would come to this?
At one time, Matt lived a comfortable middle-class existence in suburban Toronto. He was a star athlete, a gifted musician, an army cadet, a popular classmate. But things began to unravel in high school.
He became withdrawn. Smoked and drank and did drugs with a little more gusto than his peers. Began acting weird. Dropped out of school. At first, it was dismissed as the growing pains of adolescence, but his behaviour soon spiralled out of control.
Matt bounced around various group homes and court diversion programs. The stress and frustration were such that his parents' marriage almost collapsed.
Then the diagnosis came - schizophrenia.
"Finding an explanation for his behaviour was a relief," Steve says. After all, parents tend to blame themselves.
"But then you find out what it really means - a mind-altering disease destroying a person you love - and it's heartbreaking," Steve says.
Trying to get his son the care he needed was more heartbreaking still.
The wait to get Matt into a psychiatric bed in the region of Ontario where he lives was 12 weeks or more. He bounced from crisis to crisis. When there was a glimmer of hope and the young man was willing to be treated, care was not available.
After a suicide attempt, Matt was treated in the emergency room then sent home. Not because he didn't need help, but because all the hospital's psychiatric beds were full.
Matt has now deteriorated to the point where he is hospitalized against his will; he has been committed, or "formed" as they say in the jargon of the milieu.
But he can still refuse treatment and he can still wander away from hospital to shoplift and get high. "He has lost the capacity to make rational decisions, but he still has the legal right to make those decisions," Steve says.
He is exasperated by this paradox, as are many parents of adult children with severe mental illness.
"In the end, all I want is my son back," Steve says mournfully.
He has nothing but praise for the health professionals who have cared for his son. The nurses and doctors, he says, have been phenomenal. So are the volunteers and staff from the Canadian Mental Health Association.
"But their hands are tied by consent forms and legal nonsense," Steve says. "The Charter of Rights and the Mental Health Act give my son the right to be sick."
Vince Li, too, had the right to be sick, the right to be guided by psychotic visions, the right to refuse treatment. In that case, the tragic consequence was the senseless death of Tim McLean on a Greyhound bus.
Two more victims of untreated schizophrenia, of a mental-health system with screwed-up priorities.
But there are many more victims of untreated mental illness, of a profoundly flawed system.
Far from the headlines, they are dying deaths by a thousand cuts, deaths by a thousand pills, deaths by a thousand missed opportunities to treat.
