Category: psychiatry

Welcome to the 911 Club for Parents of Troubled Kids

Welcome to the 911 Club for Parents of Troubled Kids

You may already be a member of the 911 Club, a community of parents who depend on emergency services for managing their mentally ill child. Our T-shirts are black and blue like bruises. Only people raising a mentally ill child or young adult join. Club rules are simple:

1. Focus on safety first.
2. Continually manage the trauma you and your family experience.
3. Accept that no one is guilty or a failure.
4. Ask others for emotional and physical help.

Every day, an emergency is just around the corner.

Parents with troubled children, no matter the age or diagnosis, are forced to make difficult decisions and take extreme actions… like calling 911.  It’s not something they choose, and they’ll avoid it if possible.  They are like any other parent with a severely disabled or physically ill child—they will do anything to help their child, but instead of wheelchairs or chemotherapy, they need emergency responders.

Ten things that parents of troubled children often do:

  1. Call police
  2. Call an ambulance
  3. Call a crisis line repeatedly
  4. Search a child’s room, especially if the child is a teenager or may be suicidal
  5. Spy on their child: read their email, texts, social media or search histories, read their journals
  6. File criminal charges or get a restraining order
  7. Lock up common household items (matches, knives, scissors, fuel, chemicals, and anything conceivably dangerous in the wrong hands)
  8. Participate in endless meetings, appointments, and therapy sessions. Complete dozens of forms and continually pursue financial or community mental health resources
  9. Block out people who used to be friends, block their child from troubled friends
  10. Never share stories with ‘normal’ people to avoid bombardment with uninformed and unsolicited opinions.


Parents can see an emergency coming, but can do little to prevent it.

All parents of troubled children have barriers to getting help, even when it’s blatantly obvious that the child needs it.  Why?  The aftermath of a recent high school shooting in Florida by provides details:

  1. The tragedy has to happen first: “A neighbor warned the sheriff’s office …and begged them to intervene. She was told there was nothing deputies could do until Cruz actually did something.”
  2. Mental health professionals don’t take history into account; and they are ignorant that children can behave well in their presence: “An investigator … spoke to Cruz, and advised that he was “not currently a threat to himself or others” and did not need to be committed.
  3. Family and other eyewitnesses are ignored by the people and institutions they depend on. “Lynda Cruz’s cousin warned deputies Cruz had rifles and pleaded for them to “recover these weapons.”


Policymakers, mental health professionals, and emergency responders out there:  fix this!

Part of the reason parents or family of the mentally ill person can’t get timely help is because of civil rights laws.  To those in the mental health community, start talking about how to handle this.  The present situation is unacceptable!  Stop protecting an acknowledged dangerous person’s rights over those of innocent victims.  It’s not OK.  This is just like some gun advocates who think it’s more important to sell assault rifles to protect their personal rights over those of innocent victims.

True Story

An upsetting thing happened in my city about 10 years ago that could have been my story. A man took his grown son to the emergency room because the son had been insisting he was going to stab someone—he suffered from untreated schizophrenia. When there, the staff found no reason to hold the son despite his history of violence and his father’s testimony. The father pleaded with them to put his son in a 72-hour hold and they refused.

Within minutes, the son ran off into the surrounding neighborhood, and within an hour, had stolen a steak knife from a restaurant, and ran out and stabbed a man walking on the sidewalk. (The victim lived, fortunately.) The father told the reporter that he’d been trying every possible means to stop this from happening in the hours before the event. Getting the son to go with him to the ER was an extraordinary feat in and of itself. He was beside himself with frustration and sadness and anger.  Now his son had aggravated assault and attempted homicide charges, and faced prison instead of a hospital.

–Margaret

 

U.K. needs to be a “999 Club”; Germany needs a “112” Club; a “110 Club” in China…

What to know about psychiatric residential treatment

What to know about psychiatric residential treatment

residential centerHave you been searching for psychiatric residential treatment for your child?  Do all the programs sound wonderful?  Ads include quotes from happy parents, and lovely photos and fabulous-sounding activities.  But what’s behind the ads?  Residential treatment programs are diverse, but there are important elements they should all have.  Here’s how to avoid low quality residential treatment.

Psychiatric residential treatment is serious stuff–it’s difficult to do–especially when troubled children and teens are put together in one facility.

Should you ask other parents for their opinion of a program?  In my experience with a child in psychiatric residential care, and as a former employee of one, word-of-mouth is not a reliable way to assess quality or success rate.  There are too many variables: children’s disorders are different; acuity is different; parents’ attitudes and expectations are different; length of time in the facility is different; what happens once a child returns home is different…  It’s most helpful to ask questions of intake staff and doctors or psychologists on staff.  Quality psychiatric residential care facilities have important things in common.

What to ask about the staff:

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  • What is the training and licensure of staff?  Are there therapists with MSW degrees, registered nurses, psychiatrists and psychiatric nurse practitioners, and is a medical professional available on site 24/7?
  • There should be a high staff to patient ratio, and a physically comfortable environment with lots of emotional support.
  • Do the staff seem mature to you?  Do they support each other, are they a team? There is often heavy staff turnover at residential treatment centers because the work is emotionally draining, so staff cohesion is as important as the qualities of each individual.
  • Safety is paramount.  What are the safety and security plans in the facility?  Staff must be able to safely manage anything that can go wrong with troubled kids.  They should be trained in NCI (Nonviolent Crisis Intervention), “training that focuses on prevention and offers proven strategies for safely defusing anxious, hostile, or violent behavior at the earliest possible stage.”

What to ask about programs:

  • Does the program specifically identify parent/family involvement as part of treatment?  Does it emphasize parent partnership with staff?  Ask.  Whether you live close or far from the center, even out-of-state, you should be regularly included in conversations with staff about your child’s treatment.  You should also be included in a therapy session with your child periodically; some facilities can connect with you over Skype.  Your child’s success in psychiatric care depends on their family’s direct involvement.
  • The program should coach you in specific parenting approaches that work for child’s behavioral needs.  While your child is learning new things and working on their own changes, you must know what to establish back home when they return.
  • You should be informed why your child is getting the treatment or behavioral modifications he/she is receiving.
  • Last and most important: when your child leaves, there should be a discharge meeting and a discharge plan.  What this means:  all staff who worked with your child get together with you and discuss what treatment should continue once they go home.  Medication management and therapy is identified in advance, appropriate school accommodations are discussed, changes in the home environment are discussed if needed…  You should never leave without knowing what comes next in the months following care.

Body health is brain health, and vice versa.

  • residential programsMental health treatment will include medication and therapy, but must also include positive activities and an educational program.  The whole body needs care:  exercise, social activities, therapeutic activities (art, music, gardening), healthy food, restful sleep, etc.

Is your child emotionally safe as well as physically safe?

  • You should be able to visit the unit or cottage where your child will live, see their bedroom, and see how the other children interact with staff and how staff interact with each other.

What to ask about the business itself:

  • Can you take a tour ahead of time?  Can your child or teen visit too if appropriate?
  • Are emergency services nearby (hospital, law enforcement) that can arrive quickly?
  • Does the facility have a business license in their state?  Do they have grievance procedures?  Is the center accredited as a treatment facility, and by whom?  In the U.S., the main accreditation authority for healthcare facilities is The Joint Commission.

Psychiatric residential treatment works miracles, but it doesn’t work for all children.  Some need to go into treatment more than once to benefit. Some fall apart a few weeks or months after discharge.  These are common.  What’s important is that staff observations and advice help you and your child with insight and skills for managing his or her unique symptoms, and for communicating effectively.

Good luck.

 

What was your experience when your child was in residential care?  Please share your comment so others can learn.

On child psychiatry and stigma

On child psychiatry and stigma

When parents complain about psychiatrists, it’s often because the psychiatrist treats them as being the cause for child’s problems.  Doctors often do not understand what life is like in the family’s home, and how impossible it is to follow through on their recommendations.  Interestingly, psychiatrists who themselves have a troubled child are keenly aware of the challenges.  In fact, they too can go crazy with grief, and guilt, and a sense of failure… just like parents who aren’t medical doctors.  A doctor’s negative attitude towards parents has huge emotional consequences for them.  If parents aren’t listened to, or if they are talked down to, it adds a load to their emotional baggage and is debilitating.  It weakens their capacity for caring for their incredibly stressful child, and for themselves.  To be fair, the medical field has lots of practitioners who aren’t helpful or people-friendly.  What’s different about psychiatry is that The Rest Of The World stigmatizes anything related to mental health or brain health… it’s as if brains are always healthy, and if someone has a behavior problem it’s their fault.  Many also think mental health treatment itself is sinister and evil, and that psychiatrists and psychologists themselves are provide fake or harmful treatments to unsuspecting people.

Our Own Worst Enemies
Nada Logan Stotland, MD, MPH

“Oncology manages to cloak the most primitive possible treatments—poison and burning—with elaborate protocols. Yet the mention of psychiatry conjures ECT, and ECT conjures images of the snake pit.  …We are the only specialty with our own dedicated hate group. We shouldn’t be our own worst enemies.”  May 18, 2010, Blog @ www.psychiatrictimes.com

o        Dr. Stotland, above, mentions ECT  (electroconvulsive therapy), or “shock therapy.”  It reboots the brain and is the only thing that keeps some people alive and eases their suffering.  So how is ECT worse than shocking a stopped heart with a defibrillator–two paddles on the chest and BOOM!  Which is more barbaric?

o        In the TV medical dramas, there’s this common scene:  a patient is in a hospital bed surrounded by doctors, and the patient is bleeding, or screaming in pain, or convulsing.  Somehow this is acceptable in prime time.  What if the scene was different.  Instead, an agitated, hallucinating patient is being restrained, and injected with a drug that immediately calms and relaxes them.  My guess is the public would find it sickening and unethical.

o        When a sweet-looking child loses all of his or her hair after being poisoned by chemotherapy, it evokes sympathy and compassion.  But if this same  child’s hair was lost while taking a psychiatric medication, then it would be seen as a barbaric side-effect of forcing drugs on children to send them to zombie-land.  Cancer treatment is forgivable; treatment for brain diseases is not.

This public attitude must change.   It victimizes the victims who live with mental disorders, and the confrontations and insinuations families experience is emotionally debilitating.   Mental health treatments are no more barbaric than those of other medical illnesses, but the stigma unique to mental health manifests itself in blame, prejudice, and the cruel insensitive comments of others.  Let the public dialogue discuss improving lives instead of finding fault with doctors, sufferers, and their families.

–Margaret

Youth with mental disorders demand rights!

Youth with mental disorders demand rights!

Troubled young people have rights, and a national organization is there to support them. Youth ERA (Mission:  “Youth ERA works to empower young people and create breakthroughs with the dedicated systems that serve them.”)  Youth ERA offers peer support, social and educational support, and advocacy for youth with brain disorders.  The Oregon Chapterin  partnership with Portland State University, wrote a Youth Bill or Rights for teens to young adults between ~16 to mid 20’s.  As you can see in the Rights document below, they believe youth should be allowed to guide their mental health treatment, and receive respectful, humane care.

“YOUTH ERA BILL of RIGHTS  –  We believe that all youth should have the following rights in their mental health care:

1) Youth have the right to be leaders of their psychiatric treatment plans.

Youth should be informed of the possible side effects of medications, how long recommended medications take to go into effect, and the possible long-term effects of recommended medication. Service providers should work with youth to explore possible alternatives to using psychiatric medication before medication is given. Communication between youth and all medical providers should be collaborative, clear, and with limited use of medical terminology.

2) Youth have the right to evaluate their mental health services.

Mental health counselors, social workers, psychologists, and other service providers should provide opportunities for youth to evaluate the satisfaction of their services throughout the duration of care in a respectful and non-threatening manner. This includes evaluation of the relationship with the provider, counseling plans, and implemented treatment models.

3) Youth have rights to services that are as noninvasive as possible.

When youth are transitioning into new services, mental health programs should strive to make the transition as accommodating as possible for the youth. Youth should be consulted on the ways they would like to end their relationship with the current provider and whether they would like the current provider to share their file with their new provider. Providers should share if there will be any changes in the costs of services and/or insurance coverage.

4) Youth have rights to get treatment from trained, sensitive providers.

Youth should have access to mental health professionals that are familiar with the unique needs and challenges of youth with mental health needs. All mental health professionals should have specialized training that fosters positive youth development and support. Youth mental health service consumers should be included in the creation and implementation of these trainings.”

This document was created and signed in 2009 by 30 mental health service-experienced youth gathered in Portland, OR, from the following states: California, Hawaii, Idaho, Illinois, Kentucky, Maine, Massachusetts, Missouri, Michigan, New York, North Carolina, Oregon, Texas, and Washington.

Youth ERA rights are similar to the “Mental Health Consumer Rights” developed by adult mental health consumers, which is appended at the end of this article.

Parents should support these rights

I say “bravo,” these are appropriate and necessary–anyone receiving treatment must be comfortable and safe with care providers, and treated with dignity and respect, period  But I’d like to see something similar for parents and caregivers, too, who also participate in treatment and need to feel respected and heard.

 – – – – – – – – – –

Adults with mental illness had already developed a bill of rights for the same reasons as the youth–to receive sensitive, humane services and participate in all aspects their treatment.

Adult Consumer Bill of Rights – for adults in mental health service systems

  1. Information Disclosure:  Consumers have the right to receive accurate, easily understood information and may require assistance in making informed health care decisions about their health plans, professionals, and facilities.
  2. Choice of Providers and Plans:  Consumers have the right to a choice of health care providers that is sufficient to ensure access to appropriate high-quality health care.
  3. Access to Emergency Services:  Consumers have the right to access emergency health care services when and where the need arises.
  4. Participation in Treatment Decisions:  Consumers have the right and responsibility to fully participate in all decisions related to their health care.
  5. Respect and Nondiscrimination:  Consumers have the right to considerate, respectful care from all members of the health care system at all times and under all circumstances. An environment of mutual respect is essential to maintain a quality health care system.
  6. Confidentiality of Health Information:  Consumers have the right to communicate with health care providers in confidence and to have the confidentiality of their individually identifiable health care information protected.
  7. Complaints and Appeals:  All consumers have the right to a fair and efficient process for resolving differences with their health plans, health care providers, and the institutions that serve them, including a rigorous system of internal review and an independent system of external review.
  8. Consumer Responsibilities:  In a health care system that protects consumers’ rights, it is reasonable to expect and encourage consumers to assume reasonable responsibilities.

The federal Substance Abuse and Mental Health Services Administration (SAMHSA) established the Consumer Bill of Rights Workgroup to promote and implement the Presidential Advisory Commission’s Consumer Bill of Rights and Responsibilities in health care. http://mentalhealth.samhsa.gov/consumersurvivor/billofrights.asp

 

–Margaret

Mental illness is more deadly than cancer for teens, young adults

Mental illness is more deadly than cancer for teens, young adults

Why isn’t everyone more upset?

A disease is killing our children and it’s more deadly than cancer and leukemia!  Did you know it was mental illness?

Out of curiosity, I did some research on child mortality rates from various causes because I wanted to know how death from mental illnesses compared with other fatal illnesses of childhood and adolescence. The results were astonishing, unexpected, and disturbing.

Look at the highest bars in this graph. They are 3-4 times the height of average cancer and diabetes rates in children. There are gaps in the available data, but this simple comparison is disturbing.

* The starting point for the mortality rates of medical illnesses was the website for the Center for Disease Control and Prevention www.cdcp.gov  in Atlanta; the starting point for the mental illnesses was the website for the National Institute for Mental Health, www.nimh.gov.

** The suicide data was from those with depression, bipolar disorder, schizophrenia, and psychotic disorders-unspecified.  (Suicide from other mental health causes, such as borderline personality disorder and co-morbid substance abuse is also prevalent, but I could not find data for children to young adult age ranges.)

On suicide:

  • It’s often normal for children and young people to think about suicide, but just in their imagination. They might consider it during some painful time in their lives, but there are no plans made or steps taken.  When the difficult times are over, they don’t think about it any more.
  • Young people with early onset mental illness can’t endure much stress; thoughts of suicide recur over time, starting as early as age 6 or 7.  These children are vulnerable to repeated intrusive suicidal thoughts because they live with a combination biological, psychological, and social/relationship causes (called “biopsychosocial”).  More about this is explained here: “Use the “S” Word: Talk with your Child about Suicide.”
  • There are ‘fast’ and ‘slow’ suicides in young people.
    • The ‘fast’ ones are 1) direct self-harm that has been planned, or 2) spur-of-the-moment suicide due to an extreme emotional reaction to a single intolerable event (examples: a boyfriend/girlfriend or best friend dies; a teen has a serious fight with a parent and (without planning) wants to ‘get back’).
    • The ‘slow’ suicides result from a persistent pattern of harmful behaviors that eventually lead to death.  Young people struggling with anorexia can die by heart failure or other causes due to their weakened body.  Others abuse substances and/or participate in extremely risky activities that expose them to multiple lethal situations:  overdose, criminal environments, disease.

The chart above screams out for a changes in attitude, policy, and investment in children’s mental health treatment and suicide prevention.  I had no idea that death rates from mental illness could be 3 to 4 times higher than most cancers and leukemia.  It is imperative that young people with mental health issues receive as aggressive and sensitive treatment as is expected and demanded of medical systems that treat cancer in children.

 

Parents: talk about this. Talk to your child; share it on social media; and talk to mental health organizations about what you can do.

The data on mortality rates for mental illnesses was difficult to find, and it required searches in many different medical journals and websites.  I chose to use the data on cancer, leukemia, and diabetes because the mortality rates from these are high and because deaths from all other causes were insignificant by comparison (motor vehicle accidents are the one exception).  In this graph, the death rates for cancer and leukemia are averages for the different forms of each, and in the medical journals they were presented together.

I welcome additions or corrections of this data from any other sources, and encourage readers to investigate this for themselves.

–Margaret