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Drug Abuse: Antipsychotics in Nursing HomesBy Jan Goodwin, AARP Bulletin, 
These dangerous medications are prescribed at an alarming rate without the patient’s consent
When Patricia Thomas, 79, went into a Ventura, Calif.,nursing home with a broken pelvis, the only prescriptions she used were for blood pressure and cholesterol, and an inhaler for her pulmonary disease. By the time she was discharged 18 days later, she “wasn’t my mother anymore,” says Kathi Levine, 57, of Carpinteria, Calif. “She was withdrawn, slumped in a wheelchair with her head down, chewing on her hand, her speech garbled.” Within weeks, she was dead.
Thomas, a former executive assistant, had been given so many heavy-duty medications, including illegally administered antipsychotics, by the Ventura Convalescent Hospital in November of 2010 that she could no longer function. If one drug caused sleeplessness and anxiety, she was given a different medication to counteract those side effects. If yet another drug induced agitation or the urge to constantly move, she was medicated again for that.
"Yes, my mom had Alzheimer’s, but she wasn’t out of it when she went into the nursing home. She could dress and feed herself, walk on her own. You could have a conversation with her,” says Levine. “My mother went into Ventura for physical therapy. Instead, she was drugged up to make her submissive. I believe that my mother died because profit and greed were more important than people.”
A Ventura County Superior Court judge agreed that Levine had a legitimate complaint against the nursing home. In May, attorneys from the law firm Johnson Moore in Thousand Oaks, Calif., joined by lawyers from AARP Foundation, agreed to a settlement in an unprecedented class-action suit against the facility for using powerful and dangerous drugs without the informed consent of residents or family members. “It is the first case of its kind in the country, and hopefully we can replicate this nationwide,” says attorney Kelly Bagby, senior counsel for AARP Foundation Litigation.
A national problem
Tragically, what happened to Patricia Thomas is not an isolated incident. According to Charlene Harrington, professor of nursing and sociology at the University of California, San Francisco, as many as 1 in 5 patients in the nation’s 15,500 nursing homes are given antipsychotic drugs that are not only unnecessary, but also extremely dangerous for older patients. The problem, experts say, stems from inadequate training and chronic understaffing, as well as an aggressive push by pharmaceutical companies to market their products.
"The misuse of antipsychotic drugs as chemical restraints is one of the most common and long-standing, but preventable, practices causing serious harm to nursing home residents today," says Toby Edelman, an attorney at the Center for Medicare Advocacy in Washington, D.C. "When nursing facilities divert funds from the care of residents to corporate overhead and profits, the human toll is enormous."
Kickbacks to doctors
Last November, in what the U.S. Department of Justice called “one of the largest health care fraud settlements in U.S. history,” Johnson & Johnson and its subsidiaries were fined more than $2.2 billion to resolve criminal and civil charges because of their aggressive marketing of drugs, including antipsychotics, to nursing homes, when they knew the drugs had not been approved by the U.S. Food and Drug Administration (FDA) as safe and effective for a general elderly population. The corporation also allegedly paid kickbacks to physicians, as well as to Omnicare, the nation’s largest long-term-care pharmacy provider. Omnicare pharmacists were recommending Johnson & Johnson’s drugs, including the antipsychotic Risperdal, for use by nursing home residents.
Back in 2009, Eli Lilly did the same thing with its antipsychotic Zyprexa, marketing to older people in nursing homes and assisted living facilities, federal prosecutors charged. In a settlement, the company agreed to pay $1.4 billion. “This case should serve as still another warning to all those who break the law in order to improve their profits,” Patrick Doyle, special agent in charge of the Office of Inspector General for the U.S. Department of Health and Human Services in Philadelphia, said at the time.A report released in March by the inspector general of Health and Human Services charged that one-third of Medicare patients in nursing homes suffered harm, much of which was preventable. “Too many nursing homes fail to comply with federal regulations designed to prevent overmedication, giving patients antipsychotic drugs in ways that violate federal standards for unnecessary drug use,” Inspector General Daniel Levinson said. “Government, taxpayers, nursing home residents, as well as their families and caregivers, should be outraged — and seek solutions.”Antipsychotic drugs are intended for people with severe mental illness, such as patients with schizophrenia or bipolar disorder. As such, they carry the FDA’s black-box warning that they are not intended for frail older people or patients with Alzheimer’s or dementia. In those populations, these drugs can trigger agitation, anxiety, confusion, disorientation and even death. “They can dull a patient’s memory, sap their personalities and crush their spirits,” according to a report from the California Advocates for Nursing Home Reform.
Kept in the dark
What’s more, the law requires “informed consent” by a patient or, if that is no longer possible, by his or her family before such drugs are administered. Yet advocates say that, all too frequently, this doesn’t happen. Levine, for example, says she didn’t know about all her mother’s medications until she transferred her mom to another facility. “When I saw the list of what she’d been given, I freaked out. I was upset and angry, in tears,” she recalls.
How can such things happen? One explanation is that many facilities don’t have enough properly trained staff: Most of the patient care in nursing homes falls to certified nursing assistants (CNAs) who need as little as 75 hours of on-the-job training to get certified. “Yet if you want a license to be a hairdresser, you need 1,500 hours of training,” Harrington points out.What’s more, CNAs are paid low wages so many of them work long hours. “They are totally exhausted, with extremely heavy workloads,” she says. That leads to high employee turnover and caregivers who don’t know their patients well enough to recognize their needs.Compounding the problem, many nursing home patients require a high level of care. Some are incontinent, and an estimated 60 to 70 percent have some form of dementia. There should be one CNA for every seven patients, but in some cases, the ratio is 1 to 15 — or even more, Harrington says. There also tend to be too few physicians actually present in nursing homes. “These facilities are highly medicalized, but doctors are rarely there,” says Tony Chicotel, staff attorney for California Advocates for Nursing Home Reform. He says that because of their low rate of reimbursement from Medicare, nursing homes are too often seen as a place where few top doctors practice.The result of all this can be so-called behavior problems among patients — which is the explanation nursing homes cite for giving patients unnecessary antipsychotic drugs, according to the U.S. Centers for Medicare and Medicaid Services (CMS). And pharmaceutical companies have been aggressively marketing their products as an easy and effective way to control these issues.
"There was a push by drug manufacturers, claiming these medications work for seniors when they knew, in fact, that it doubled their risk of death," Chicotel says.
CMS, which oversees the nursing homes that receive funding from federal programs, says it has been working to correct deficiencies in nursing facilities, including the inappropriate use of medications. The agency achieved the goal of reducing the inappropriate use of antipsychotic drugs by 15 percent over a recent two-year period, and hopes to get to a 30 percent reduction in the next few years, according to spokesman Thomas Hamilton. But Edelman points out that initial goal was reached more than a year late, and some 300,000 patients are still receiving the drugs inappropriately. Hamilton acknowledges that more needs to be done, but lack of funding from Congress is making even the most preliminary work difficult.
A better way
Fortunately, a growing number of nursing homes have begun to look for more effective — and more humane — ways to care for patients. Better training for caregivers is key: According to Cheryl Phillips, M.D., a geriatrician at LeadingAge, an organization representing nonprofit services for older people, nursing home staff can be trained to deal with behavior issues thoughtfully and creatively, without resorting to drugs.
She cites an example of a male patient who was spending his days in a noisy nursing home activity room. One day, he grew more and more agitated and tripped an aide with his cane. To calm him down, the staff took him to his private quarters. Over the following days, his behavior in the activity room became increasingly aggressive; he began randomly hitting caregivers and fellow patients. Each time, he was taken away to spend time in his room.
"The staff initially thought he had become violent and needed an antipsychotic," Phillips recalls. "But they ultimately realized that the cacophony in the activity room was stressing him out. Caregivers inadvertently rewarded him by giving him quiet time in his room, which is what he wanted. When they did it repetitively, they reinforced his aggressive behavior." Once the staff discussed the problem and began finding peaceful activities for the patient, the problem was solved — no drugs needed.
Putting patients first
Another success story is the Beatitudes facility in Phoenix, which dramatically changed its way of handling patients with dementia based on Tom Kitwood’s book Dementia Care Reconsidered: The Person Comes First. “What happens here is not for our systems, our convenience, but for the people we care for,” says Tena Alonzo, the director of education and research at Beatitudes. “People with dementia have disturbances in their sleep/wake cycle, so we let them be comfortable and decide when they want to sleep or eat, or not. Or how they want to spend their time,” she says. As a result, patients stop resisting care, and the facility runs more smoothly.
The Beatitudes’ philosophy is now being taught to a growing number of nursing homes around the country. “We’ve created a softer, gentler approach, acknowledging that we are not in charge of a person’s life — they are. In allowing them to retain their dignity, and adopt a comfort level of care, we’ve had better outcomes,” says Alonzo. That paradigm shift has not increased operating expenses, or required a higher staff-to-resident ratio. “We discovered that better care was better business,” Alonzo says.
For Kathi Levine and her mother, these encouraging developments are coming too late. “I want our lawsuits to impact nursing homes all over the country,” Levine says. “We need to protect our family members. They don’t have a voice, they can’t speak for themselves. So we need to speak out for them and help other people know what to look for. I want to make sure that what happened to my family doesn’t happen to anyone else.”
Jan Goodwin is an award-winning author and investigative journalist for national publications.
For more mental health resources, Click Here to access the Serious Mental Illness Blog.
Click Here to access original SMI Blog content

Drug Abuse: Antipsychotics in Nursing Homes
By Jan Goodwin, AARP Bulletin

These dangerous medications are prescribed at an alarming rate without the patient’s consent

When Patricia Thomas, 79, went into a Ventura, Calif.,nursing home with a broken pelvis, the only prescriptions she used were for blood pressure and cholesterol, and an inhaler for her pulmonary disease. By the time she was discharged 18 days later, she “wasn’t my mother anymore,” says Kathi Levine, 57, of Carpinteria, Calif. “She was withdrawn, slumped in a wheelchair with her head down, chewing on her hand, her speech garbled.” Within weeks, she was dead.

Thomas, a former executive assistant, had been given so many heavy-duty medications, including illegally administered antipsychotics, by the Ventura Convalescent Hospital in November of 2010 that she could no longer function. If one drug caused sleeplessness and anxiety, she was given a different medication to counteract those side effects. If yet another drug induced agitation or the urge to constantly move, she was medicated again for that.

"Yes, my mom had Alzheimer’s, but she wasn’t out of it when she went into the nursing home. She could dress and feed herself, walk on her own. You could have a conversation with her,” says Levine. “My mother went into Ventura for physical therapy. Instead, she was drugged up to make her submissive. I believe that my mother died because profit and greed were more important than people.”

A Ventura County Superior Court judge agreed that Levine had a legitimate complaint against the nursing home. In May, attorneys from the law firm Johnson Moore in Thousand Oaks, Calif., joined by lawyers from AARP Foundation, agreed to a settlement in an unprecedented class-action suit against the facility for using powerful and dangerous drugs without the informed consent of residents or family members. “It is the first case of its kind in the country, and hopefully we can replicate this nationwide,” says attorney Kelly Bagby, senior counsel for AARP Foundation Litigation.

A national problem

Tragically, what happened to Patricia Thomas is not an isolated incident. According to Charlene Harrington, professor of nursing and sociology at the University of California, San Francisco, as many as 1 in 5 patients in the nation’s 15,500 nursing homes are given antipsychotic drugs that are not only unnecessary, but also extremely dangerous for older patients. The problem, experts say, stems from inadequate training and chronic understaffing, as well as an aggressive push by pharmaceutical companies to market their products.

"The misuse of antipsychotic drugs as chemical restraints is one of the most common and long-standing, but preventable, practices causing serious harm to nursing home residents today," says Toby Edelman, an attorney at the Center for Medicare Advocacy in Washington, D.C. "When nursing facilities divert funds from the care of residents to corporate overhead and profits, the human toll is enormous."

Kickbacks to doctors

Last November, in what the U.S. Department of Justice called “one of the largest health care fraud settlements in U.S. history,” Johnson & Johnson and its subsidiaries were fined more than $2.2 billion to resolve criminal and civil charges because of their aggressive marketing of drugs, including antipsychotics, to nursing homes, when they knew the drugs had not been approved by the U.S. Food and Drug Administration (FDA) as safe and effective for a general elderly population. The corporation also allegedly paid kickbacks to physicians, as well as to Omnicare, the nation’s largest long-term-care pharmacy provider. Omnicare pharmacists were recommending Johnson & Johnson’s drugs, including the antipsychotic Risperdal, for use by nursing home residents.

Back in 2009, Eli Lilly did the same thing with its antipsychotic Zyprexa, marketing to older people in nursing homes and assisted living facilities, federal prosecutors charged. In a settlement, the company agreed to pay $1.4 billion. “This case should serve as still another warning to all those who break the law in order to improve their profits,” Patrick Doyle, special agent in charge of the Office of Inspector General for the U.S. Department of Health and Human Services in Philadelphia, said at the time.A report released in March by the inspector general of Health and Human Services charged that one-third of Medicare patients in nursing homes suffered harm, much of which was preventable. “Too many nursing homes fail to comply with federal regulations designed to prevent overmedication, giving patients antipsychotic drugs in ways that violate federal standards for unnecessary drug use,” Inspector General Daniel Levinson said. “Government, taxpayers, nursing home residents, as well as their families and caregivers, should be outraged — and seek solutions.”Antipsychotic drugs are intended for people with severe mental illness, such as patients with schizophrenia or bipolar disorder. As such, they carry the FDA’s black-box warning that they are not intended for frail older people or patients with Alzheimer’s or dementia. In those populations, these drugs can trigger agitation, anxiety, confusion, disorientation and even death. “They can dull a patient’s memory, sap their personalities and crush their spirits,” according to a report from the California Advocates for Nursing Home Reform.

Kept in the dark

What’s more, the law requires “informed consent” by a patient or, if that is no longer possible, by his or her family before such drugs are administered. Yet advocates say that, all too frequently, this doesn’t happen. Levine, for example, says she didn’t know about all her mother’s medications until she transferred her mom to another facility. “When I saw the list of what she’d been given, I freaked out. I was upset and angry, in tears,” she recalls.

How can such things happen? One explanation is that many facilities don’t have enough properly trained staff: Most of the patient care in nursing homes falls to certified nursing assistants (CNAs) who need as little as 75 hours of on-the-job training to get certified. “Yet if you want a license to be a hairdresser, you need 1,500 hours of training,” Harrington points out.What’s more, CNAs are paid low wages so many of them work long hours. “They are totally exhausted, with extremely heavy workloads,” she says. That leads to high employee turnover and caregivers who don’t know their patients well enough to recognize their needs.Compounding the problem, many nursing home patients require a high level of care. Some are incontinent, and an estimated 60 to 70 percent have some form of dementia. There should be one CNA for every seven patients, but in some cases, the ratio is 1 to 15 — or even more, Harrington says. There also tend to be too few physicians actually present in nursing homes. “These facilities are highly medicalized, but doctors are rarely there,” says Tony Chicotel, staff attorney for California Advocates for Nursing Home Reform. He says that because of their low rate of reimbursement from Medicare, nursing homes are too often seen as a place where few top doctors practice.The result of all this can be so-called behavior problems among patients — which is the explanation nursing homes cite for giving patients unnecessary antipsychotic drugs, according to the U.S. Centers for Medicare and Medicaid Services (CMS). And pharmaceutical companies have been aggressively marketing their products as an easy and effective way to control these issues.

"There was a push by drug manufacturers, claiming these medications work for seniors when they knew, in fact, that it doubled their risk of death," Chicotel says.

CMS, which oversees the nursing homes that receive funding from federal programs, says it has been working to correct deficiencies in nursing facilities, including the inappropriate use of medications. The agency achieved the goal of reducing the inappropriate use of antipsychotic drugs by 15 percent over a recent two-year period, and hopes to get to a 30 percent reduction in the next few years, according to spokesman Thomas Hamilton. But Edelman points out that initial goal was reached more than a year late, and some 300,000 patients are still receiving the drugs inappropriately. Hamilton acknowledges that more needs to be done, but lack of funding from Congress is making even the most preliminary work difficult.

A better way

Fortunately, a growing number of nursing homes have begun to look for more effective — and more humane — ways to care for patients. Better training for caregivers is key: According to Cheryl Phillips, M.D., a geriatrician at LeadingAge, an organization representing nonprofit services for older people, nursing home staff can be trained to deal with behavior issues thoughtfully and creatively, without resorting to drugs.

She cites an example of a male patient who was spending his days in a noisy nursing home activity room. One day, he grew more and more agitated and tripped an aide with his cane. To calm him down, the staff took him to his private quarters. Over the following days, his behavior in the activity room became increasingly aggressive; he began randomly hitting caregivers and fellow patients. Each time, he was taken away to spend time in his room.

"The staff initially thought he had become violent and needed an antipsychotic," Phillips recalls. "But they ultimately realized that the cacophony in the activity room was stressing him out. Caregivers inadvertently rewarded him by giving him quiet time in his room, which is what he wanted. When they did it repetitively, they reinforced his aggressive behavior." Once the staff discussed the problem and began finding peaceful activities for the patient, the problem was solved — no drugs needed.

Putting patients first

Another success story is the Beatitudes facility in Phoenix, which dramatically changed its way of handling patients with dementia based on Tom Kitwood’s book Dementia Care Reconsidered: The Person Comes First. “What happens here is not for our systems, our convenience, but for the people we care for,” says Tena Alonzo, the director of education and research at Beatitudes. “People with dementia have disturbances in their sleep/wake cycle, so we let them be comfortable and decide when they want to sleep or eat, or not. Or how they want to spend their time,” she says. As a result, patients stop resisting care, and the facility runs more smoothly.

The Beatitudes’ philosophy is now being taught to a growing number of nursing homes around the country. “We’ve created a softer, gentler approach, acknowledging that we are not in charge of a person’s life — they are. In allowing them to retain their dignity, and adopt a comfort level of care, we’ve had better outcomes,” says Alonzo. That paradigm shift has not increased operating expenses, or required a higher staff-to-resident ratio. “We discovered that better care was better business,” Alonzo says.

For Kathi Levine and her mother, these encouraging developments are coming too late. “I want our lawsuits to impact nursing homes all over the country,” Levine says. “We need to protect our family members. They don’t have a voice, they can’t speak for themselves. So we need to speak out for them and help other people know what to look for. I want to make sure that what happened to my family doesn’t happen to anyone else.”

Jan Goodwin is an award-winning author and investigative journalist for national publications.

For more mental health resources, Click Here to access the Serious Mental Illness Blog.

Filed under drug drugs med meds medication medications antipsychotic psychosis psychotic schizophrenia schizophrenic abilify psychiatry psychology counseling social work mental health mental illness mental health illness recovery healthy wellness mind body brain treat treatment therapy

30 notes

Mentally ill people need to be helped, not houndedBy Polly Toynbee, The Guardian
Ministers promise ‘parity of esteem’ for mental and physical health services. Instead the reality is scandalous cruelty
Once upon a time, David Cameron said that general wellbeing matters as much GDP. What’s it all for if a country grows richer but its people feel no better? A genuine attempt at prioritizing wellbeing would be revolutionary, because the happiest people live in more equal societies, are less ridden by anxiety, enjoy good employment, are well housed and more trusting. Yet in Britain all those fundamentals indices of wellbeing are in retreat.
If aiming for happiness is beyond this government, minimizing extreme pain could be within reach, if it began by prioritizing scarce NHS resources entirely according to suffering. If pain was measured in a Benthamite way – the relief of the greatest suffering for the greatest number of patients – mental illness would trump most other conditions. One sufferer describes getting his broken leg slammed in a door as less excruciating than the agony caused by his depression. Yet an ingrowing toenail gets treated within a mandatory 18 weeks, while there is no waiting limit at all for treating mental illness. More than half of those referred by GPs never get any treatment, and of those who do, some wait for over a year in the deepest despair. It’s even more shocking that so often children get no help.
Professors Richard Layard, an economist, and David Clark, a clinical psychologist, ratchet up their campaign for better mental treatment with their new book, Thrive. These champions of cognitive behavioral therapy have done more to turn mental health into practical politics than anyone before, though progress is slow. Their skill has been to produce evidence that a course of CBT, costing £650, can permanently rescue half of those who take the course from disabling mental illnesses. For politicians, their evidence shows that a highly systemized treatment with specifically trained therapists saves lives and money. Nice guidelines say everyone with depression and anxiety should referred for CBT – but that’s not binding, so most are not. The mechanized approach invites criticism, but this strictly evidence-based therapy has the best chance of gaining political traction.
The coalition promised that mental health would get “parity of esteem" with physical health, but so far there is little sign of it. Instead the government has just cut the tariff paid for mental healthcare by more than it cut the tariff for physical treatments. Norman Lamb spoke at the launch of the Layard and Clark campaign in the Commons, protesting that mental health "was first to be cut and isn’t getting a fair share of attention". Had he forgotten that he is himself a health minister who could say no?
On some other planet, Nick Clegg made an eye-catching announcement in December that all mental patients could choose where they go for treatment – NHS or private – but most wait for anything, anywhere, and many get nothing. A shortage of beds means in-patients are now often sent hundreds of miles from home, certainly not by choice. NHS England’s website claims “parity of esteem” but only promises that 15% will get CBT by 2015.
As it is, cancer and heart disease rule the roost, surgeons are king and psychiatry is low in the pecking order. Politicians are not entirely to blame; they know that mental and community services, where 90% of patients are treated, should get priority, but NHS politics is governed by front-page demands for every new drug, and for intensive care to prolong the miserable last six months of life. Oppositions protest at rising waiting lists or ambulance waiting times. Jeremy Hunt doesn’t call community mental services to ask who they’re neglecting, he calls A&E to bellow at them for overstepping a four-hour wait. Can mental health be made as politically sensitive?
Neglect of the mentally ill is bad enough, but now consider how the Department for Work and Pensions deliberately torments them. I just met a job center manager. It had to be in secret, in a Midlands hotel, several train stops away from where she works. She told me how the sick are treated and what harsh targets she is under to push them off benefits. A high proportion on employment and support allowance have mental illnesses or learning difficulties. The department denies there are targets, but she showed me a printed sheet of what are called “spinning plates”, red for missed, green for hit. They just missed their 50.5% target for “off flows”, getting people off ESA. They have been told to “disrupt and upset” them – in other words, bullying. That’s officially described, in Orwellian fashion, as “offering further support”. As all ESA claimants approach the target deadline of 65 weeks on benefits – advisers are told to report them all to the fraud department for maximum pressure. In this manager’s area 16% are “sanctioned” or cut off benefits.
Of course it’s not written down anywhere, but it’s in the development plans of individual advisers or “work coaches”. Managers repeatedly question them on why more people haven’t been sanctioned. Letters are sent to the vulnerable who don’t legally have to come in, but in such ambiguous wording that they look like an order to attend. Tricks are played: those ending their contributory entitlement to a year on ESA need to fill in a form for income-based ESA. But job centers are forbidden to stock those forms. These ill people’s benefits are suddenly stopped without explanation: if they call, they’re told to collect a form from the job centers, which doesn’t stock them either. If someone calls to query an appointment they are told they will be sanctioned if they don’t turn up, whatever. She said: “The DWP’s hope is they won’t pursue the claim.”
Good advisers genuinely try to help the mentally ill left marooned on sickness benefit for years. The manager spoke of a woman with acute agoraphobia who hadn’t left home for 20 years: “With tiny steps, we were getting her out, helping her see how her life could be better – a long process.” But here’s another perversity: if someone passes the 65-week deadline, they are abandoned. All further help is a dead loss to “spinning plates” success rates. That woman was sent back to her life of isolation: she certainly wasn’t referred for CBT. For all this bullying, the work program finds few jobs for those on ESA.
Failing to treat the mentally ill is bad enough, but this is maltreatment. There has been much outrage about lack of kindness and care in hospitals. Neglect of mental patients is every bit as bad, but deliberate cruelty by the DWP defies any concern for the wellbeing for the most vulnerable, let alone “parity of esteem”.
Picture credit: seasidestudiosblog.blogspot.com
For more mental health resources, Click Here to access the Serious Mental Illness Blog.
Click Here to access original SMI Blog content

Mentally ill people need to be helped, not hounded
By Polly Toynbee, The Guardian

Ministers promise ‘parity of esteem’ for mental and physical health services. Instead the reality is scandalous cruelty

Once upon a time, David Cameron said that general wellbeing matters as much GDP. What’s it all for if a country grows richer but its people feel no better? A genuine attempt at prioritizing wellbeing would be revolutionary, because the happiest people live in more equal societies, are less ridden by anxiety, enjoy good employment, are well housed and more trusting. Yet in Britain all those fundamentals indices of wellbeing are in retreat.

If aiming for happiness is beyond this government, minimizing extreme pain could be within reach, if it began by prioritizing scarce NHS resources entirely according to suffering. If pain was measured in a Benthamite way – the relief of the greatest suffering for the greatest number of patients – mental illness would trump most other conditions. One sufferer describes getting his broken leg slammed in a door as less excruciating than the agony caused by his depression. Yet an ingrowing toenail gets treated within a mandatory 18 weeks, while there is no waiting limit at all for treating mental illness. More than half of those referred by GPs never get any treatment, and of those who do, some wait for over a year in the deepest despair. It’s even more shocking that so often children get no help.

Professors Richard Layard, an economist, and David Clark, a clinical psychologist, ratchet up their campaign for better mental treatment with their new book, Thrive. These champions of cognitive behavioral therapy have done more to turn mental health into practical politics than anyone before, though progress is slow. Their skill has been to produce evidence that a course of CBT, costing £650, can permanently rescue half of those who take the course from disabling mental illnesses. For politicians, their evidence shows that a highly systemized treatment with specifically trained therapists saves lives and money. Nice guidelines say everyone with depression and anxiety should referred for CBT – but that’s not binding, so most are not. The mechanized approach invites criticism, but this strictly evidence-based therapy has the best chance of gaining political traction.

The coalition promised that mental health would get “parity of esteem" with physical health, but so far there is little sign of it. Instead the government has just cut the tariff paid for mental healthcare by more than it cut the tariff for physical treatments. Norman Lamb spoke at the launch of the Layard and Clark campaign in the Commons, protesting that mental health "was first to be cut and isn’t getting a fair share of attention". Had he forgotten that he is himself a health minister who could say no?

On some other planet, Nick Clegg made an eye-catching announcement in December that all mental patients could choose where they go for treatment – NHS or private – but most wait for anything, anywhere, and many get nothing. A shortage of beds means in-patients are now often sent hundreds of miles from home, certainly not by choice. NHS England’s website claims “parity of esteem” but only promises that 15% will get CBT by 2015.

As it is, cancer and heart disease rule the roost, surgeons are king and psychiatry is low in the pecking order. Politicians are not entirely to blame; they know that mental and community services, where 90% of patients are treated, should get priority, but NHS politics is governed by front-page demands for every new drug, and for intensive care to prolong the miserable last six months of life. Oppositions protest at rising waiting lists or ambulance waiting times. Jeremy Hunt doesn’t call community mental services to ask who they’re neglecting, he calls A&E to bellow at them for overstepping a four-hour wait. Can mental health be made as politically sensitive?

Neglect of the mentally ill is bad enough, but now consider how the Department for Work and Pensions deliberately torments them. I just met a job center manager. It had to be in secret, in a Midlands hotel, several train stops away from where she works. She told me how the sick are treated and what harsh targets she is under to push them off benefits. A high proportion on employment and support allowance have mental illnesses or learning difficulties. The department denies there are targets, but she showed me a printed sheet of what are called “spinning plates”, red for missed, green for hit. They just missed their 50.5% target for “off flows”, getting people off ESA. They have been told to “disrupt and upset” them – in other words, bullying. That’s officially described, in Orwellian fashion, as “offering further support”. As all ESA claimants approach the target deadline of 65 weeks on benefits – advisers are told to report them all to the fraud department for maximum pressure. In this manager’s area 16% are “sanctioned” or cut off benefits.

Of course it’s not written down anywhere, but it’s in the development plans of individual advisers or “work coaches”. Managers repeatedly question them on why more people haven’t been sanctioned. Letters are sent to the vulnerable who don’t legally have to come in, but in such ambiguous wording that they look like an order to attend. Tricks are played: those ending their contributory entitlement to a year on ESA need to fill in a form for income-based ESA. But job centers are forbidden to stock those forms. These ill people’s benefits are suddenly stopped without explanation: if they call, they’re told to collect a form from the job centers, which doesn’t stock them either. If someone calls to query an appointment they are told they will be sanctioned if they don’t turn up, whatever. She said: “The DWP’s hope is they won’t pursue the claim.”

Good advisers genuinely try to help the mentally ill left marooned on sickness benefit for years. The manager spoke of a woman with acute agoraphobia who hadn’t left home for 20 years: “With tiny steps, we were getting her out, helping her see how her life could be better – a long process.” But here’s another perversity: if someone passes the 65-week deadline, they are abandoned. All further help is a dead loss to “spinning plates” success rates. That woman was sent back to her life of isolation: she certainly wasn’t referred for CBT. For all this bullying, the work program finds few jobs for those on ESA.

Failing to treat the mentally ill is bad enough, but this is maltreatment. There has been much outrage about lack of kindness and care in hospitals. Neglect of mental patients is every bit as bad, but deliberate cruelty by the DWP defies any concern for the wellbeing for the most vulnerable, let alone “parity of esteem”.

Picture credit: seasidestudiosblog.blogspot.com

For more mental health resources, Click Here to access the Serious Mental Illness Blog.

Filed under england uk united kingdom mental health physical health health healthy wellness mind body brain Health Care happy happiness psychology psychiatry counseling social work treatment recovery hope therapy social news suffer suffering mental illness diagnosis disorder therapist

37 notes

It Gets Better!By Bertel Rüdinger, Mad in America
A little more than 10 years ago, when I was 29 and 2 weeks away from turning 30, I was a patient in the psychiatric system here in Copenhagen. I am a pharmacist and I specialized in neurochemistry and psychotropics throughout my studies.
While I was working in the labs at The Royal Danish School of Pharmacy I was intent on getting a job as a medicinal chemist at Lundbeck – the Danish pharmaceutical company behind Celexa and Lexapro and in their own words the only company specializing solely in developing drugs for the treatment of neurological and psychiatric disorders.
At the university we were taught that psychiatric disorders were diseases just like diabetes and hypotension. We were told all the ‘truths’ that the psychiatrists now admit were myths about the so-called chemical imbalances in the brain and the clear genetic component of schizophrenia and other psychiatric disorders.
I have been hearing voices since I was 14 and I always knew that if I told anybody about them there was a significant risk that I would be labeled schizophrenic. I had kept that part of my life hidden for many years. I was so skilled at disregarding the fact that I heard voices that I could joke with my friends about “not ending up in there” when we passed the local psychiatric ward.
Life is not without a sense of irony. I never got to the point where I could contribute to Lundbeck’s prosperity in any other way than as a customer at my local pharmacy and I did end up in that local psychiatric ward. The first time I ‘visited’ that ward I stayed for 8 long months.
In June 2004 I had just moved back to Copenhagen and was living with my mother after an 11 month stint at various psychiatric wards across Denmark. In those days I rarely wrote anything and I have very little memory of writing this letter to myself. Yet somehow throughout the years I managed to keep safe the envelope that I had carefully labeled, “To be opened June 19th 2014”.
I don’t remember writing the letter. That process is bogged down in a neuroleptic mist and benzodiazepine-induced haze but somehow I had both the strength and the insight to write this letter to my future self.
I remember seeing the envelope when I moved to a supported living facility in 2006 and again in 2009 when I moved into my own apartment and lastly when I bought my current home and moved there in 2011.
In 2006 and in 2009 I was still heavily medicated so I quickly forgot about the envelope and in 2011 I had finally come off the meds and life was so full of new impressions, colors and conquests that I almost forgot about the letter.
Wednesday June 18th 2014 I opened the letter. It was a poorly phrased note telling myself that if I was still a patient in the psychiatric system and on disability there was really no reason to have my 40th birthday. I would then have spent more than 12 years as a psychiatric patient and if they hadn’t found the right combination of meds by then I was going to write a goodbye letter to my family and take the necessary overdose.
In 2004 my medication was a crazy mix of Risperdal, Zeldox, Nortriptyline, Mirtazapine, Chlorpromazine, Clonazepam and Movane and yet despite being so heavily drugged, I was clear enough in my head to know that never waking up again would be easy.
Earlier in June 2004 my family and I had had the first of many talks with the psychiatrist who emphasized that I was chronically ill, that I would never work again, that I would always need psychiatric care and the necessary psychiatric drugs and that I had to accept that life would be very different from what I had dreamt of.
I remember my mum telling me afterwards not to listen to the psychiatrists. “Doctors say so many things and no one knows what the future brings.”
I listened to my mother’s advice but had made a decision that if ten years hadn’t brought sufficient improvement then I had earned the right to end this misery.
Even though psychiatrists are more skilled at predicting the future than they are at discovering the cause of ‘schizophrenia,’ the dismal future the psychiatrist predicted in that small office in 2004 was not to be.
In 2007 my mum needed a homepage and even though I could not do programing my mum asked me to design it. When I presented the design to the woman who eventually programmed it, I can remember thinking that coding a web page can’t be so difficult if she can do it.
She might not have been a computer genius but she excelled at billing and her invoices showed me a promising way to earn some extra money. In November and December 2007 I started taking all the e-learning courses about web programming I could get and in February 2008 I attended an evening class on advanced HTML programming. In May 2008 I started the first of five six-week-courses on web design and DTP and that changed my future. In January 2009 I moved out of the supported living facility where I had stayed for almost 3 years.
On the 15th of March I started working as a webmaster at a psychiatric residential home where I learned about recovery and heard about a completely different approach to mental distress. The fact that severe mental distress and traumatic experiences were linked resonated deeply within me. When I became part of the Hearing Voices Network in Denmark I learned of their approach in dealing with the voices. I created a homepage for the Hearing Voices Network in Denmark and in October 2009 I attended the first International Hearing  Voices Conference in Maastricht. I suddenly realized just how emotionally numb the drugs had made me as I heard Jacqui Dillon telling her story and saw how it affected the people around me, while I was more focused on getting my next shot of caffeine.
When I got back from Maastricht I started the process of tapering off my medication. I also came back with a clear understanding that as a pharmacist with personal experience of about 40% of the psychiatric medications used in Denmark, I could play a valuable role in helping people who felt handicapped by their psychiatric medication.
I spoke with Jørn Eriksen, the head of the facility where I work, about changing my job from webmaster to becoming the first clinical pharmacist working with users in social psychiatry in Europe.
For the last four and a half years I have been fighting for the rights of the mentally distressed to get off their medication and have helped many people find a new life without psychotropics. I have seen how people change and thrive as they come off their medication and have supported them in their consultations with psychiatrists throughout the country.
Dan Savage launched the ‘It gets better’ campaign after three LGBT teens committed suicide all within three months. The campaign focuses on bringing the message of hope to gay teens and helping them understand that life might be hard right now but if they make it through the hell of high school, then what seems like a troubled life will change and they will have a chance to fulfill their dreams of a good life.
The campaign features videos of individual LGBTs and LGBT celebrities and allies telling their personal stories as well as corporations promising gay rights by ensuring a fair and inclusive work environment for LGBT people and politicians promoting their views on how to improve civil rights for the LGBT community.
For a long time now I have wanted to launch a similar campaign for people undergoing psychiatric treatment. Having experienced the process of coming out as a gay man and the stigma associated with having a psychiatric label, my experience is that coming out as gay is easy compared to fighting the stigma associated with one or more psychiatric diagnoses.
Mad In America is abundant with stories of hope and recovery and it becomes clear that for those who want to recover from mental distress they must stop the chemical treatment and their beliefs in a biological cause.
For those who read this post and are still on medication – trust me, IT GETS BETTER – even if right now it seems impossible. Even if the all-knowing men and women in white tell you differently. Even if your family tells you you’re chemically imbalanced. Even if staying awake more than 6 hours a day seems impossible or writing messages to your future selves takes more energy than you have − IT GETS BETTER!
It gets better the day you leave the psychiatric system and find your own way – not back to who you were but to the beautiful person you are without the drugs!
Photo credit: ivoh.org
For more mental health resources, Click Here to access the Serious Mental Illness Blog.
Click Here to access original SMI Blog content

It Gets Better!
By Bertel Rüdinger, Mad in America

A little more than 10 years ago, when I was 29 and 2 weeks away from turning 30, I was a patient in the psychiatric system here in Copenhagen. I am a pharmacist and I specialized in neurochemistry and psychotropics throughout my studies.

While I was working in the labs at The Royal Danish School of Pharmacy I was intent on getting a job as a medicinal chemist at Lundbeck – the Danish pharmaceutical company behind Celexa and Lexapro and in their own words the only company specializing solely in developing drugs for the treatment of neurological and psychiatric disorders.

At the university we were taught that psychiatric disorders were diseases just like diabetes and hypotension. We were told all the ‘truths’ that the psychiatrists now admit were myths about the so-called chemical imbalances in the brain and the clear genetic component of schizophrenia and other psychiatric disorders.

I have been hearing voices since I was 14 and I always knew that if I told anybody about them there was a significant risk that I would be labeled schizophrenic. I had kept that part of my life hidden for many years. I was so skilled at disregarding the fact that I heard voices that I could joke with my friends about “not ending up in there” when we passed the local psychiatric ward.

Life is not without a sense of irony. I never got to the point where I could contribute to Lundbeck’s prosperity in any other way than as a customer at my local pharmacy and I did end up in that local psychiatric ward. The first time I ‘visited’ that ward I stayed for 8 long months.

In June 2004 I had just moved back to Copenhagen and was living with my mother after an 11 month stint at various psychiatric wards across Denmark. In those days I rarely wrote anything and I have very little memory of writing this letter to myself. Yet somehow throughout the years I managed to keep safe the envelope that I had carefully labeled, “To be opened June 19th 2014”.

I don’t remember writing the letter. That process is bogged down in a neuroleptic mist and benzodiazepine-induced haze but somehow I had both the strength and the insight to write this letter to my future self.

I remember seeing the envelope when I moved to a supported living facility in 2006 and again in 2009 when I moved into my own apartment and lastly when I bought my current home and moved there in 2011.

In 2006 and in 2009 I was still heavily medicated so I quickly forgot about the envelope and in 2011 I had finally come off the meds and life was so full of new impressions, colors and conquests that I almost forgot about the letter.

Wednesday June 18th 2014 I opened the letter. It was a poorly phrased note telling myself that if I was still a patient in the psychiatric system and on disability there was really no reason to have my 40th birthday. I would then have spent more than 12 years as a psychiatric patient and if they hadn’t found the right combination of meds by then I was going to write a goodbye letter to my family and take the necessary overdose.

In 2004 my medication was a crazy mix of Risperdal, Zeldox, Nortriptyline, Mirtazapine, Chlorpromazine, Clonazepam and Movane and yet despite being so heavily drugged, I was clear enough in my head to know that never waking up again would be easy.

Earlier in June 2004 my family and I had had the first of many talks with the psychiatrist who emphasized that I was chronically ill, that I would never work again, that I would always need psychiatric care and the necessary psychiatric drugs and that I had to accept that life would be very different from what I had dreamt of.

I remember my mum telling me afterwards not to listen to the psychiatrists. “Doctors say so many things and no one knows what the future brings.”

I listened to my mother’s advice but had made a decision that if ten years hadn’t brought sufficient improvement then I had earned the right to end this misery.

Even though psychiatrists are more skilled at predicting the future than they are at discovering the cause of ‘schizophrenia,’ the dismal future the psychiatrist predicted in that small office in 2004 was not to be.

In 2007 my mum needed a homepage and even though I could not do programing my mum asked me to design it. When I presented the design to the woman who eventually programmed it, I can remember thinking that coding a web page can’t be so difficult if she can do it.

She might not have been a computer genius but she excelled at billing and her invoices showed me a promising way to earn some extra money. In November and December 2007 I started taking all the e-learning courses about web programming I could get and in February 2008 I attended an evening class on advanced HTML programming. In May 2008 I started the first of five six-week-courses on web design and DTP and that changed my future. In January 2009 I moved out of the supported living facility where I had stayed for almost 3 years.

On the 15th of March I started working as a webmaster at a psychiatric residential home where I learned about recovery and heard about a completely different approach to mental distress. The fact that severe mental distress and traumatic experiences were linked resonated deeply within me. When I became part of the Hearing Voices Network in Denmark I learned of their approach in dealing with the voices. I created a homepage for the Hearing Voices Network in Denmark and in October 2009 I attended the first International Hearing  Voices Conference in Maastricht. I suddenly realized just how emotionally numb the drugs had made me as I heard Jacqui Dillon telling her story and saw how it affected the people around me, while I was more focused on getting my next shot of caffeine.

When I got back from Maastricht I started the process of tapering off my medication. I also came back with a clear understanding that as a pharmacist with personal experience of about 40% of the psychiatric medications used in Denmark, I could play a valuable role in helping people who felt handicapped by their psychiatric medication.

I spoke with Jørn Eriksen, the head of the facility where I work, about changing my job from webmaster to becoming the first clinical pharmacist working with users in social psychiatry in Europe.

For the last four and a half years I have been fighting for the rights of the mentally distressed to get off their medication and have helped many people find a new life without psychotropics. I have seen how people change and thrive as they come off their medication and have supported them in their consultations with psychiatrists throughout the country.

Dan Savage launched the ‘It gets better’ campaign after three LGBT teens committed suicide all within three months. The campaign focuses on bringing the message of hope to gay teens and helping them understand that life might be hard right now but if they make it through the hell of high school, then what seems like a troubled life will change and they will have a chance to fulfill their dreams of a good life.

The campaign features videos of individual LGBTs and LGBT celebrities and allies telling their personal stories as well as corporations promising gay rights by ensuring a fair and inclusive work environment for LGBT people and politicians promoting their views on how to improve civil rights for the LGBT community.

For a long time now I have wanted to launch a similar campaign for people undergoing psychiatric treatment. Having experienced the process of coming out as a gay man and the stigma associated with having a psychiatric label, my experience is that coming out as gay is easy compared to fighting the stigma associated with one or more psychiatric diagnoses.

Mad In America is abundant with stories of hope and recovery and it becomes clear that for those who want to recover from mental distress they must stop the chemical treatment and their beliefs in a biological cause.

For those who read this post and are still on medication – trust me, IT GETS BETTER – even if right now it seems impossible. Even if the all-knowing men and women in white tell you differently. Even if your family tells you you’re chemically imbalanced. Even if staying awake more than 6 hours a day seems impossible or writing messages to your future selves takes more energy than you have − IT GETS BETTER!

It gets better the day you leave the psychiatric system and find your own way – not back to who you were but to the beautiful person you are without the drugs!

Photo credit: ivoh.org

For more mental health resources, Click Here to access the Serious Mental Illness Blog.

Filed under hope recovery treatment treat psychiatry psychiatric psychology counseling social work disorder diagnosis voices hearing voices schizophrenia schizophrenic med meds medication antipsychotic disability rethinking madness drug drugs mind body brain wellness healthy misery sadness

47 notes


Comment on NYT.com about a New York Times article:

As a psychotherapist, helping teens and young men like the one featured in this article requires more than simply finding the right diagnosis and medications; it requires an empathic understanding of the unhappiness and anger that they experience. Too often, mental health personnel, let alone the insurers, focus solely on the externals of problematic behaviors and imagine these as merely the manifestations of a malfunctioning brain. This perspective—often akin to trying to wedge the round peg of a troubled individual into the square hole of the DSM and biological psychiatry—just leaves the young person feeling more alienated and adrift… and even more pessimistic about any mental health intervention. And the families in these situations need expert consultation on an ongoing basis to help them provide the optimal balance of support and structure that can help their child develop their self-regulatory capacities and interpersonal skills. Each of these situations is quite unique and manualized “cookie cutter” interventions rarely work. Successful interventions require a persistent trial-and-error approach over a period of several years, not fits and starts with a revolving door of psychiatrists, therapists and treatment programs.

Joel Kanter, Silver Spring, MD

Read the New York Times article HERE


For more mental health resources, Click Here to access the Serious Mental Illness Blog.
Click Here to access original SMI Blog content

Comment on NYT.com about a New York Times article:

As a psychotherapist, helping teens and young men like the one featured in this article requires more than simply finding the right diagnosis and medications; it requires an empathic understanding of the unhappiness and anger that they experience. Too often, mental health personnel, let alone the insurers, focus solely on the externals of problematic behaviors and imagine these as merely the manifestations of a malfunctioning brain. This perspective—often akin to trying to wedge the round peg of a troubled individual into the square hole of the DSM and biological psychiatry—just leaves the young person feeling more alienated and adrift… and even more pessimistic about any mental health intervention. And the families in these situations need expert consultation on an ongoing basis to help them provide the optimal balance of support and structure that can help their child develop their self-regulatory capacities and interpersonal skills. Each of these situations is quite unique and manualized “cookie cutter” interventions rarely work. Successful interventions require a persistent trial-and-error approach over a period of several years, not fits and starts with a revolving door of psychiatrists, therapists and treatment programs.

Joel Kanter, Silver Spring, MD
For more mental health resources, Click Here to access the Serious Mental Illness Blog.

Filed under violent violence mental health mental health illness mental illness psychology psychiatry counseling mind body brain wellness healthy diagnosis disorder child children kid kids son sons daughter daughters parent parents aggressive fight treatment

30 notes

An Open Letter to Persons Self-Identifying as Mentally IllBy Andrew L. Yoder, MSW, Mad in America
Hello,
My name is Andrew, and like you I have experienced severe cognitive and emotional distress in my life.  This distress was sufficient that I once received a psychiatric diagnosis of Major Depressive Disorder and Generalized Anxiety Disorder, though I imagine other diagnosis could have easily been applied as well.
I know what panic attacks feel like.  I know how it feels to experience a “dissociative episode” from the inside out.  I know what it feels like to believe that you are going crazy.  I know what it feels like to convulse in sobs so intensely that you tear muscles.  I know what it feels like to want to die.
I remember that in the midst of my terror and confusion there came a point where I desperately wanted a label – a diagnosis.  I wanted someone to tell me, in explicit terms, what was wrong with me and how to fix it.  I can recall scouring the internet through tears trying to find a diagnosis that described my symptoms.  I needed to believe that I was ill, just like if I had a disease or a virus, so that I would have hope of a “cure.”  It felt like the only thread of hope I had.
I have been on (admittedly mild) psychiatric medications, and those did help to some degree, especially in the short term.  I was also blessed to find a therapist who practiced compassionately and genuinely listened to my voice as I expressed my needs.  Many of you were never so lucky, and many others across the world are also less fortunate.
While I felt that I needed the label of mental illness to give me hope that I could be “treated,” my therapist was surprisingly less eager to give me what I wanted.  She managed to express genuine empathy for my distress and show her willingness to partner with me on a path to healing, but did so without ever willingly giving me a diagnosis.  It was only at my strong insistence that she finally conceded, and shared with me the diagnosis she gave for me, and which medical insurance demand be assigned to people.
My physician was not so cautious.  He was a very pleasant man that always seemed to take his time with me and did not talk down to me.  Yet as I described some of the emotional distress I was experiencing, and the ways it was affecting my life, he told me with great certainty that mine was a totally common experience.  He told me that I had a biological condition in my brain, one in which certain chemicals were “imbalanced.”  He told me that there should be no stigma about asking for assistance from him.  Specifically he told me, “Trying to not be depressed is like telling a diabetic to just make more insulin.”  He prescribed an antidepressant medication, saying that this was no different than taking medication to regulate blood pressure or manage cholesterol.  I was told of the likelihood that I would need to remain on some form of medication for an indefinite future.
Today I can share with you the good news that I have experienced what I call “deep healing,” but others might call ”recovery” from even these most extreme of cognitive and emotional states.  And yet, my pathway to this place of healing did not come through a diagnostic label as I thought it might.  Nor did it come through psychiatric medications (though I understand that medications might be a helpful and important part of your own healing, if that is what you choose.) Instead, the primary source of my recovery was the genuine empathy expressed by those partnering in my recovery.
My path was also not through the intervention of behavioral therapies , or solution-focused or problem fixing therapies (though I accept that any or all of this may be helpful to someone else.)  Rather, I was lucky enough to find a therapist who altered her plans for a cognitive-behavioral intervention after truly listening to me express my own sense of what I needed.  We engaged in the now largely out of favor psychotherapy, or “talk” therapy.  The path to my recovery was primarily talking to someone willing to genuinely listen and explore emotions and experiences.  Meaning-making of my experiences, and understanding the hows and whys of how I came to experience myself and the world in the way I did was what was most healing to me.
I’ve shared my background story, because I wish to persuade you not to hold the label of “mental illness” too tightly.  Again, I’ve lived the experience of feeling a desperate need for a psychiatric diagnosis.  I understand the feeling.  I only ask that you keep an open mind and consider what I have to say.
If you’ve spend any time at Mad in America, you’ve noticed a strong critique of a medical model of mental illness.  In fact you’ve probably noticed a strong critique of the term “mental illness” itself. You may have read persons arguing that mental illness is a mere social construct, or that mental illness is a myth.  I worry that this may feel frightening, or possibly even create a sense of powerful loss.  I could even see how hearing such things, depending on what you presently experience, might even feel like it threatens to take all your hope away.  I would like to try to ease those fears.
I feel confident in saying that there are few (if any) people arguing against the medical model or label of “mental illness” who deny the absolute reality of your real experience of distress.  I certainly do not.  I’ve lived the experience, and while not identical to your own, I feel it is fair to say we have some common ground.  I believe that anyone, given the right context and circumstances, can experience even the most extreme forms of cognitive and emotional distress.  What we sometimes call hallucinations or suicidal thoughts or deep sadness or panic and all the like – these are not experiences that you must accept as “just the way things are” without any hope of easing suffering.
However, I believe that treating the term “mental illness” as a literal truth does more to harm that hope of recovery than it does to help it.  You see, along with the popular claim that mental illness is a literal organic brain disease “just like diabetes” is a set of other dogmas unproven and unsupported by evidence.  These include, being regularly told that not only do you have a disease but that this disease also has no cure and that you will struggle with it for your entire life.  I have trouble imagining anything more hopeless than that.
It also includes being told that you must take psychiatric medications, and often many different psychiatric medications for the rest of your life, and you should never ever consider stopping them.  This despite what we know about the limited efficacy of these medications (anti-depressants are barely more effective than placebo in clinical trials; anti-psychotics have a short term effectiveness but increase susceptibility to psychosis, have major medical side effects and decrease brain size over the long term.)  Where is the hope in this?
Looking back now, I wish the physician who prescribed me anti-depressants would not have told me stories of “chemical imbalance” that are simply not based in science.  In truth, most psychiatric medications alter normal brain activity, and there’s no evidence of an identifiable chemical imbalance of any sort at the root of emotional suffering.  Research suggests that there are some risks associated with long-term use of antidepressants, including the possibility of decreasing benefits from the drug and something referred to as “treatment resistant depression.”
I believe that psychiatric medications did assist me in my process over the short term.  However I also believe that I was on them far longer than needed because of misinformation from my physician.  I believe my long term use of antidepressants has impacted my overall range of emotional expression.  I believe that my long term use of antidepressants has made discontinuing them entirely much more difficult.  I feel that I was robbed of my right to make a fully informed decision, and that has had consequences for my life that I still feel.
Thankfully, those consequences are minor compared to the tragic experiences of many who are denied their right to informed consent.  Overall, I am a happy, healthy human who has experienced significant emotional healing.  But I still cannot help but feel anger and resentment at the disinformation presented to me by doctors which took away my right to choose.
Professionals that subscribe to the belief that mental illness is a literal thing, also by and large subscribe to the belief that genuine recovery is impossible.  Instead, recovery is redefined to mean “effective symptom management” and persons labeled as mentally ill are encouraged to have “realistic expectations and goals” related to their lives that appreciate the limitations of their “illness.”  This is not hopeful at all.  It is false-hopelessness.
Those of us challenging the evidence-absent medical model and the objective “mental illness” label that goes with it are not trying to take away something hopeful and healing from you.  Instead, we wish to counter the false-hopelessness of a system that sees you as second-class people who will never be “normal.”
I am not here to minimize your real experiences of deep suffering.  I know they are real, and my heart aches for those of you who experience that pain.  But I am here to tell you that people can and do experience healing, restoration, or “recovery” from even the most extreme forms of distress!  You are not “ill” in any objective or literal sense.  The term “mental illness” is at best a metaphor.  You are not an “other” – one of the sick people, the “less than people.”  You are a fellow human being whose experiences have led to intense and distressing mental and emotional experiences.  Any one of us could experience the same.
Those of us challenging the mental disease model are the ones emphatically declaring that there is hope!  You can fully recover from even the most difficult distresses.  I know this because of my own journey of healing, and because persons who have experienced even more intense distress than I have also experience such recovery.  You can be free to make the decisions that feel right to you, including whether or to take or not take, continue or discontinue, any medication whatsoever.  You can experience the support of a community not married to a medical model that sincerely believes in you and honors your voice.
So as you continue to hear from people who challenge convention – namely the evidence-absent claim that “mental illness” is an objective thing, that there are literal mental diseases with clear biological causes, that people who have these “diseases” can never fully recover and must take powerful and dangerous medications for the rest of their lives whether they want to or not – remember that we also fully validate the reality of your lived experiences, both beautiful and painful.
We know that mental and emotional suffering is a real experience that many, many people face.  We also know that nothing good comes from convincing people that they have a biological disease when no evidence supports that.  Questioning the legitimacy of “mental illness” doesn’t make the reality of the pain any different.  But it does help people avoid the pitfalls of misinformation and powerlessness in their own recovery and wellness.
I am not saying that you are not hurting.  I am saying that you are not broken.  I am saying that there is always hope.
Love and best wishes to you,
Andrew
For more mental health resources, Click Here to access the Serious Mental Illness Blog.Click Here to access original SMI Blog content

An Open Letter to Persons Self-Identifying as Mentally Ill
By Andrew L. Yoder, MSW, Mad in America

Hello,

My name is Andrew, and like you I have experienced severe cognitive and emotional distress in my life.  This distress was sufficient that I once received a psychiatric diagnosis of Major Depressive Disorder and Generalized Anxiety Disorder, though I imagine other diagnosis could have easily been applied as well.

I know what panic attacks feel like.  I know how it feels to experience a “dissociative episode” from the inside out.  I know what it feels like to believe that you are going crazy.  I know what it feels like to convulse in sobs so intensely that you tear muscles.  I know what it feels like to want to die.

I remember that in the midst of my terror and confusion there came a point where I desperately wanted a label – a diagnosis.  I wanted someone to tell me, in explicit terms, what was wrong with me and how to fix it.  I can recall scouring the internet through tears trying to find a diagnosis that described my symptoms.  I needed to believe that I was ill, just like if I had a disease or a virus, so that I would have hope of a “cure.”  It felt like the only thread of hope I had.

I have been on (admittedly mild) psychiatric medications, and those did help to some degree, especially in the short term.  I was also blessed to find a therapist who practiced compassionately and genuinely listened to my voice as I expressed my needs.  Many of you were never so lucky, and many others across the world are also less fortunate.

While I felt that I needed the label of mental illness to give me hope that I could be “treated,” my therapist was surprisingly less eager to give me what I wanted.  She managed to express genuine empathy for my distress and show her willingness to partner with me on a path to healing, but did so without ever willingly giving me a diagnosis.  It was only at my strong insistence that she finally conceded, and shared with me the diagnosis she gave for me, and which medical insurance demand be assigned to people.

My physician was not so cautious.  He was a very pleasant man that always seemed to take his time with me and did not talk down to me.  Yet as I described some of the emotional distress I was experiencing, and the ways it was affecting my life, he told me with great certainty that mine was a totally common experience.  He told me that I had a biological condition in my brain, one in which certain chemicals were “imbalanced.”  He told me that there should be no stigma about asking for assistance from him.  Specifically he told me, “Trying to not be depressed is like telling a diabetic to just make more insulin.”  He prescribed an antidepressant medication, saying that this was no different than taking medication to regulate blood pressure or manage cholesterol.  I was told of the likelihood that I would need to remain on some form of medication for an indefinite future.

Today I can share with you the good news that I have experienced what I call “deep healing,” but others might call ”recovery” from even these most extreme of cognitive and emotional states.  And yet, my pathway to this place of healing did not come through a diagnostic label as I thought it might.  Nor did it come through psychiatric medications (though I understand that medications might be a helpful and important part of your own healing, if that is what you choose.) Instead, the primary source of my recovery was the genuine empathy expressed by those partnering in my recovery.

My path was also not through the intervention of behavioral therapies , or solution-focused or problem fixing therapies (though I accept that any or all of this may be helpful to someone else.)  Rather, I was lucky enough to find a therapist who altered her plans for a cognitive-behavioral intervention after truly listening to me express my own sense of what I needed.  We engaged in the now largely out of favor psychotherapy, or “talk” therapy.  The path to my recovery was primarily talking to someone willing to genuinely listen and explore emotions and experiences.  Meaning-making of my experiences, and understanding the hows and whys of how I came to experience myself and the world in the way I did was what was most healing to me.

I’ve shared my background story, because I wish to persuade you not to hold the label of “mental illness” too tightly.  Again, I’ve lived the experience of feeling a desperate need for a psychiatric diagnosis.  I understand the feeling.  I only ask that you keep an open mind and consider what I have to say.

If you’ve spend any time at Mad in America, you’ve noticed a strong critique of a medical model of mental illness.  In fact you’ve probably noticed a strong critique of the term “mental illness” itself. You may have read persons arguing that mental illness is a mere social construct, or that mental illness is a myth.  I worry that this may feel frightening, or possibly even create a sense of powerful loss.  I could even see how hearing such things, depending on what you presently experience, might even feel like it threatens to take all your hope away.  I would like to try to ease those fears.

I feel confident in saying that there are few (if any) people arguing against the medical model or label of “mental illness” who deny the absolute reality of your real experience of distress.  I certainly do not.  I’ve lived the experience, and while not identical to your own, I feel it is fair to say we have some common ground.  I believe that anyone, given the right context and circumstances, can experience even the most extreme forms of cognitive and emotional distress.  What we sometimes call hallucinations or suicidal thoughts or deep sadness or panic and all the like – these are not experiences that you must accept as “just the way things are” without any hope of easing suffering.

However, I believe that treating the term “mental illness” as a literal truth does more to harm that hope of recovery than it does to help it.  You see, along with the popular claim that mental illness is a literal organic brain disease “just like diabetes” is a set of other dogmas unproven and unsupported by evidence.  These include, being regularly told that not only do you have a disease but that this disease also has no cure and that you will struggle with it for your entire life.  I have trouble imagining anything more hopeless than that.

It also includes being told that you must take psychiatric medications, and often many different psychiatric medications for the rest of your life, and you should never ever consider stopping them.  This despite what we know about the limited efficacy of these medications (anti-depressants are barely more effective than placebo in clinical trials; anti-psychotics have a short term effectiveness but increase susceptibility to psychosis, have major medical side effects and decrease brain size over the long term.)  Where is the hope in this?

Looking back now, I wish the physician who prescribed me anti-depressants would not have told me stories of “chemical imbalance” that are simply not based in science.  In truth, most psychiatric medications alter normal brain activity, and there’s no evidence of an identifiable chemical imbalance of any sort at the root of emotional suffering.  Research suggests that there are some risks associated with long-term use of antidepressants, including the possibility of decreasing benefits from the drug and something referred to as “treatment resistant depression.”

I believe that psychiatric medications did assist me in my process over the short term.  However I also believe that I was on them far longer than needed because of misinformation from my physician.  I believe my long term use of antidepressants has impacted my overall range of emotional expression.  I believe that my long term use of antidepressants has made discontinuing them entirely much more difficult.  I feel that I was robbed of my right to make a fully informed decision, and that has had consequences for my life that I still feel.

Thankfully, those consequences are minor compared to the tragic experiences of many who are denied their right to informed consent.  Overall, I am a happy, healthy human who has experienced significant emotional healing.  But I still cannot help but feel anger and resentment at the disinformation presented to me by doctors which took away my right to choose.

Professionals that subscribe to the belief that mental illness is a literal thing, also by and large subscribe to the belief that genuine recovery is impossible.  Instead, recovery is redefined to mean “effective symptom management” and persons labeled as mentally ill are encouraged to have “realistic expectations and goals” related to their lives that appreciate the limitations of their “illness.”  This is not hopeful at all.  It is false-hopelessness.

Those of us challenging the evidence-absent medical model and the objective “mental illness” label that goes with it are not trying to take away something hopeful and healing from you.  Instead, we wish to counter the false-hopelessness of a system that sees you as second-class people who will never be “normal.”

I am not here to minimize your real experiences of deep suffering.  I know they are real, and my heart aches for those of you who experience that pain.  But I am here to tell you that people can and do experience healing, restoration, or “recovery” from even the most extreme forms of distress!  You are not “ill” in any objective or literal sense.  The term “mental illness” is at best a metaphor.  You are not an “other” – one of the sick people, the “less than people.”  You are a fellow human being whose experiences have led to intense and distressing mental and emotional experiences.  Any one of us could experience the same.

Those of us challenging the mental disease model are the ones emphatically declaring that there is hope!  You can fully recover from even the most difficult distresses.  I know this because of my own journey of healing, and because persons who have experienced even more intense distress than I have also experience such recovery.  You can be free to make the decisions that feel right to you, including whether or to take or not take, continue or discontinue, any medication whatsoever.  You can experience the support of a community not married to a medical model that sincerely believes in you and honors your voice.

So as you continue to hear from people who challenge convention – namely the evidence-absent claim that “mental illness” is an objective thing, that there are literal mental diseases with clear biological causes, that people who have these “diseases” can never fully recover and must take powerful and dangerous medications for the rest of their lives whether they want to or not – remember that we also fully validate the reality of your lived experiences, both beautiful and painful.

We know that mental and emotional suffering is a real experience that many, many people face.  We also know that nothing good comes from convincing people that they have a biological disease when no evidence supports that.  Questioning the legitimacy of “mental illness” doesn’t make the reality of the pain any different.  But it does help people avoid the pitfalls of misinformation and powerlessness in their own recovery and wellness.

I am not saying that you are not hurting.  I am saying that you are not broken.  I am saying that there is always hope.

Love and best wishes to you,

Andrew

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