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How New Standards Would Fail People with Severe Mental Illnesses

As the window for public input nears closing, the mother of a person with schizophrenia weighs in.

Susan Inman 25 Oct

Susan Inman’s memoir, After Her Brain Broke, Helping My Daughter Recover Her Sanity, has been recommended by NAMI and EUFAMI, which are the largest organizations in the world advocating for family caregivers of people with severe mental illnesses.

Canada is close to adopting new mental health standards. If they are approved, people with the most severe mental illnesses might receive even worse care.

The draft standards have been prepared for Accreditation Canada by the new Health Standards Organization (HSO) that is now advising it. The public can respond to this draft until Oct. 28.

As the parent of a young adult with schizophrenia and author and advocate for families affected like ours, I am disappointed by what the HSO standards ignore and the controversial services that health authorities will now mandate. HSO minimizes the impact of severe illnesses and then fails to suggest needed services. It’s important to note that the committee creating these standards did not include any psychiatrists.

Many people with severe mental illnesses like schizophrenia rely on family caregivers. In conversations with other families across the country, I see patterns to the problems people encounter. Families are not prepared for the arrival of a severe mental illness, because we have poor national mental illness literacy campaigns. In the recently completed Mental Illness Awareness Week, schizophrenia is ignored.

HSO should promote the kind of public education that is needed about serious mental illnesses, but it doesn’t.

When families see physicians, they will likely learn that they will have to wait months to see a psychiatrist. Vancouver has opened a valuable new Access and Assessment Centre for non life-threatening conditions; this makes connecting to a psychiatrist easier, but this kind of resource is unusual. Psychotic people arriving in ERs too often experience lengthy, chaotic wait times for the too few acute psychiatric beds. Most people with psychotic disorders do respond to anti-psychotic medications, if they are admitted and allowed to stay until stable. HSO doesn’t address acceptable wait times or appropriate numbers of acute psychiatric beds.

People trying to learn to manage severe psychotic disorders also need, but can’t find, high quality psycho-education about their illnesses. None of the meager array of current programs, for instance, let clients know about anosognosia and reason people don’t accept treatment . This is the brain-based inability of most people in psychosis to understand that they are ill. This is the main reason they may not seek or accept treatment and stop taking medications that they need to stay well. Good psycho-education can help people understand, accept and learn to manage their illnesses. The HSO doesn’t address this issue.

Blocking out families

Many families are shocked to find that, even if they had a very positive relationship with their family member prior to the onset of their illness, they are often excluded from talking to service providers in both inpatient and outpatient settings. This occurs even when communication is allowed under the varying provincial mental health acts. The HSO’s strategy does support communication when the client consents. However, it doesn’t encourage clinicians to connect with families to see if helpful support is available.

Many clients develop paranoia as part of their illness. Appropriately trained clinicians can work to rebuild familial relationships that have been damaged by the illness. Even when a client isn’t ready to include family in a meeting with clinicians, the family should be encouraged to offer information about how the person is doing in their daily life. This information is very valuable to enable service providers to make both the best medical decisions and psychosocial rehabilitation suggestions.

While failing to articulate the new skills staff need to cooperate with families, the guidelines seek to offload even more responsibilities on to families. Families are now to be trained to handle violence, instead of health authorities ensuring that easy access to appropriate emergency services is provided.

Concerns about ‘peer support’

Despite these problems, the most alarming part of the HSO guidelines is its approach to peer support. I see the value of having people who have learned to live with their own mental illnesses offering assistance to others. However, Canada has been making poor choices in its approach to peer support. Its 2016 national guidelines for training don’t require or even recommend that peers learn about mental illnesses; people are assumed to be experts based on their own lived experiences. Some peers don’t believe that mental illnesses exist. While not addressing this serious problem, the HSO guidelines go on to support the most extreme options for implementing peer support. This includes having peers avoid current forms of supervision; “supervisors of peer specialists should ideally be peer specialists….”

Peer support organizations in Canada and the U.S. are highly politicized. In the U.S., the over-empowerment of the peer movement has created a network of peer service providers/advocates who frequently undermine the use of medically based treatments. The U.S. has been confronting the disastrous consequences of its previous emphasis on de-medicalizing mental illnesses; enormous numbers of people with mental illnesses have ended up homeless, victimized and incarcerated. The federal agency in charge of mental health finally has its first psychiatrist as its leader.

Taxpayer funded peer advocacy groups in the U.S. have vehemently opposed any involuntary treatment. Peers groups promote the notion that people are always capable of making treatment decisions. Access to any involuntary treatment has almost disappeared in the U.S. and this has resulted in many severely ill people ending up in the criminal justice system. There are now ten times as many people with mental illnesses imprisoned as there are in any remaining psychiatric units. Some peer groups argue that the imprisoned are people who have chosen to be criminals.

Those peer groups don’t want attention to be paid to the incarcerated mentally ill. In fact, theirs have been the loudest voices protesting this kind of reporting. They argue that calling attention to the incarcerated mentally ill creates stigma against the peers. For example, they responded vociferously to a series of articles, “The Desperate and the Dead,” written by the Boston Globe’s famed Spotlight team. The series focused on the devastating consequences of policies that have left too many people in Massachusetts with untreated severe mental illnesses. The series included accounts about the widespread incarceration of this population.

The Spotlight series was met with vigorous opposition from organized peer groups. In an effort to stop this reporting, 150 peers protested in front of the Boston Globe offices, a demonstration that included blocking the entrance. It’s alarming to note that the HSO guidelines specify that, “Recovery must be accomplished using the client’s choice of services….” This endangers access to involuntary treatment. Involuntary treatment, which is protected under BC’s Mental Health Act, allowed my daughter, who lives with schizophrenia, to receive the treatment she was too ill to understand she needed. This treatment enabled her to build a life she enjoys. The public should hear about some of the taxpayer-funded services that peers are now supplying in Canada. In Vancouver, for example, the peer-led Hearing Voices Network has a study group that frequently focuses on the work of people like Will Hall. Hall is known for his leadership in persuading people to stop anti-psychotic medications.

HSO’s standards don’t recognize the extreme challenges that can affect people with severe mental illnesses like schizophrenia. Psychiatrists see schizophrenia as a serious brain disorder. Perhaps if HSO included a psychiatrist dedicated to those with severe mental illnesses, we could see the kinds of services that are needed.  [Tyee]

Read more: Health

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