Hope you have a good weekend everybody!
Hope you have a good weekend everybody!
Many, in the mental illness community, support SARDAA’s (Schizophrenia and Related Disorders Alliance of America) efforts to have schizophrenia reclassified as a neurological disorder. Read their background information and arguments. If you agree, click on the link below to submit your support of their letter. Thanks so much. Dede
May 21, 2018
Dr. Elinore McCance-Katz
Assistant Secretary for Mental Health and Substance Use
Interdepartmental Serious Mental Illness Coordinating Committee
Substance Abuse and Mental Health Services Administration
5600 Fishers Lane
Rockville, MD 20857
Dear Dr. McCance-Katz,
On behalf of the Schizophrenia and Related Disorders Alliance of America (SARDAA), we are writing to applaud the Interdepartmental Serious Mental Illness Coordinating Committee (ISMICC) on your work advancing the understanding and delivery of services to those with serious mental illness (SMI) and serious emotional disturbance (SED). In light of the scope of work outlined in your charter, we would like to submit our recommendations for the reclassification of Schizophrenia as a neurological disorder. One place to start is including schizophrenia in the implementation of the National Neurological Conditions Surveillance System with the 21st Century Cures Act (P.L. 114-255).
Founded a decade ago, the Schizophrenia and Related Disorders Alliance of America promotes improvement in lives affected by schizophrenia-related brain illnesses (mental illnesses involving psychosis). SARDAA promotes hope and recovery through support programs, education, collaboration, and advocacy. Our vision is that every person living with schizophrenia-related brain illness receives respect, appropriate treatment and an opportunity to live a meaningful and satisfying life in a compassionate community free of discrimination.
What is Schizophrenia?
According to current DSM-5 criteria, the diagnosis of Schizophrenia requires two of the following symptoms, with at least one from the first three:
Disorganized or catatonic behavior
Negative symptoms (e.g. diminished emotional expression or motivation)
Although the precise causes and mechanisms underlying schizophrenia continue to be actively researched, there is scientific consensus that the illness is a brain-based, highly heritable illness. There is also overwhelming evidence that schizophrenia is a neurodevelopmental disorder. (1,2) with disease processes commencing early in neurodevelopment and manifesting as subtle neurologic and behavioral abnormalities long before overt DSM-defined illness onset.
A landmark research study identified 108 genes associated with risk for schizophrenia, including those relating to dopamine receptors, glutamate transmission, synaptic plasticity and the immune system. (3) The prevailing hypotheses concerning the pathophysiology of schizophrenia include the dysregulation of the dopamine, glutamate and GABA neurotransmitter systems. Synaptic pruning — a critical process that refines neural circuits during neurodevelopment — is perturbed, in particular during adolescence, consistent with the typical onset of illness during this period and into young adulthood. (4,5)
Importantly, such disturbances in pruning have recently been linked to the Major Histocompatibility Complex (MHC), by far the strongest of the 108 risk gene associations in the aforementioned study. Specifically, certain variants of complement component 4 (C4) of the MHC have been found to lead to excessive pruning, (6) thereby providing a mechanistic link between genetic basis for schizophrenia and the observed neurobiological findings in the illness (for commentary, see https://www.youtube.com/watch?v=s0y4equOTLg).
Pruning anomalies are significant enough to show up as decreased grey matter volume in structural MRI studies of schizophrenia. (7) A myriad of functional MRI and electrophysiologic studies have shown disturbances in brain and cognitive functioning. (8,9) Thus, while much work remains in fully elucidating the origins and mechanisms of schizophrenia, there is consensus and overwhelming evidence of the genetic and brain basis for the illness.
What is the Personal and Public Health Impact of Schizophrenia?
Schizophrenia can be found in approximately 1.1% of the world’s population, regardless of racial, ethnic or economic background. Approximately 3.5 million people in the United States are diagnosed with schizophrenia and it is one of the leading causes of disability. Three-quarters of persons with schizophrenia develop the illness between 16 and 25 years of age, thus derailing affected individuals during this critical period in successfully reaching important educational, vocational and social milestones.
Unfortunately, the delays from the illness onset to receiving treatment is typically very long, ranging from 22 to 150 weeks, (10) with longer durations of untreated psychosis associated with poorer clinical and functional outcomes. (11,12) After the first episode, psychosis relapse rates are very high, up to 82% in the first 5 years. (13) At five years following the first episode of psychosis, only 13.7% achieve both symptom remission and adequate social functioning. (14)
The long-term consequences of this chronic illness can be devastating. Eleven percent of the homeless population have a diagnosis of schizophrenia, with higher rates in younger persons (13% for 18–30 years old; 21% for 31–40 years old), women (twice the rate of men) and the chronically homeless (18%), with slightly less than half not receiving treatment. (15) Individuals with schizophrenia are prone to premature death, with life expectancy 14.5 years shorter than the general population. (16) Sadly, 40% of this is due to suicide, (17) with 5% lifetime completed suicide rates in schizophrenia, (18) most being shortly following illness onset, with suicide attempts at 25-50%. (19,20) Whether patients receive timely, appropriate treatment has great consequences.
Treatment and other economic costs due to schizophrenia are enormous, estimated at $156 billion annually, with the largest
What is the Stigma Associated with Schizophrenia?
Patients with psychosis are frequently exposed to negative stereotypes, stigma and social exclusion associated with their diagnosis. Unfortunately, patients and their families often engage in self-stigmatization, blaming themselves for the disorder and wondering what they could have done differently to prevent the illness. Understanding schizophrenia and other psychotic illnesses as neurological disorders would help the community at large in viewing these illnesses as they do other medical illnesses such as cancer or diabetes.
To reduce stigma and increase understanding, SARDAA initiated the Hearing Voices of Support initiative. During Schizophrenia Awareness week in 2017, SARDAA spearheaded an interactive public art installation in New York City, entitled Psychosis: Changing Perceptions Through Art & Science. This exhibit, in coordination with creative agencies The Bloc Communication Partners, Cavort and Glowing Bulbs, Inc., allowed participants to step into “cones of light” where they experienced the associated symptoms of schizophrenia (lights, auditory effects, fog, etc.) while experiencing a personal story including suggestions of what is helpful.
Congressman John Culberson (R-TX) and Congresswoman Eddie Bernice Johnson (D-TX) are co-sponsoring a similar, smaller-scale installation in the first-floor foyer of the Rayburn House Building Offices June 27-29, 2018. The Capitol Hill installation aims to promote better understanding of schizophrenia among Members of Congress and congressional staffers; unfortunately, the larger obstacle of stigma for those with schizophrenia still remains. On June 28, 2018 in Rayburn 2103, SARDAA will present a Scientific Legislative Briefing presenting neurological evidence of schizophrenia and anosognosia.
Hiding in Plain Sight: Is Schizophrenia Not Already a Neurological Illness/Disease?
Some may ask — why is this even a question? Depending on the audience, it may not actually be a question. The defining feature of schizophrenia is psychosis, manifested primarily by delusions and hallucinations. Psychosis is not only associated with schizophrenia but also dementia, Parkinson’s disease, stroke, brain tumors, and the use of drugs or alcohol. With such clear associations with brain-based processes, it would seem clear that schizophrenia-related psychosis is also rooted in the brain. In the mental health treatment context, it is a no-brainer, so to speak — of course it is a brain disease! It is no more a question that it arises from disturbances in brain function than one questions whether Parkinson’s disease or epilepsy arises from the brain.
In the clinic, or even more poignantly, in a psychiatric inpatient unit or emergency room, a patient with severe auditory hallucinations or delusions is excused from any immediate responsibility or culpability for their symptoms. The symptoms are not simply a ‘behavioral problem’ — rather, any clinician with experience treating schizophrenia will recognize how a patient’s thoughts, emotions and behavior have been hijacked by a process that is beyond their control. Historically, the ‘hijacker’ may have been assumed to be the result of a demon or spirit (c.f. epilepsy which, historically, was attributed to demonic possession), or poor parenting; in the modern day, there is no question that it is a neurological process.
Stepping from the clinic and into the lab, one will find assumptions regarding the biological basis of schizophrenia even more firmly ensconced. We are well beyond what are now considered quaint notions of the ‘schizophrenogenic mother’ or psychosis as a social construction, and questions regarding the biological basis of schizophrenia have long since moved from ‘if’ to ‘how’. A plethora of genetic, post-mortem and neuroimaging studies have demonstrated clear evidence of the biological underpinnings. Perhaps one of the more simple, compelling facts that undergirds the biology argument is heritability and twin concordance: if one of an identical twin pair has schizophrenia, the other will have a 50% chance of also having schizophrenia, even if raised in a different environment. This number is comparable to that for Alzheimer’s disease and greater than that for Parkinson’s disease. (24,25,26)
If schizophrenia having a neurological basis is such an obvious given for clinicians and scientists — people that are ‘in the know’ — why does this question remain in the general public? The answer is likely to be a complex mix of factors that includes a lack of proper education of the public and historical inertia in the systems of care that cater to the schizophrenia population (e.g.psychiatry vs. neurology), as well as how this care is paid for (e.g. structure of reimbursement codes by Centers for Medicare and Medicaid Services).
Whatever the reasons for the disconnect between established clinical/scientific knowledge regarding schizophrenia and the inadequacies in the systems of care for the illness, there is utmost urgency in bridging this gap. As outlined above, for many individuals with schizophrenia it is literally a matter of life and death. We believe that re-classifying schizophrenia formally as a neurological disease will be an important first step for this urgent priority.
Why Should Schizophrenia Be Included in the National Neurological Conditions Surveillance System (NNCSS)?
We have general prevalence estimates indicating that 1.2% of all Americans – roughly 3.2 million people — have schizophrenia from the National Institute of Mental Health (NIMH). Beyond that broad approximation, we just do not know much more about this patient population. In particular, if we turn to public mental health agencies, who provide the vast majority of publicly financed inpatient hospital and community-based services for people living with schizophrenia, the lack of basic data is striking. For example, baseline demographic data on gender, average age of onset, race, religious affiliation, ethnic background and income are often completely absent. That lack of information often extends to the realm of service delivery. State mental health agencies often struggle to identify the specific type of care provided, the penetration rate for mental health and related support services in a given geographic area, the intensity of service delivery for each patient with schizophrenia and, most importantly, verifiable clinical outcomes. An amendment to the National Neurological Diseases Surveillance System could begin to help answer these baseline questions.
A comparison of schizophrenia to Alzheimer’s disease and Parkinson’s disease — two disorders that unambiguously have a neurological basis — quickly makes a compelling case for schizophrenia finding its proper diagnostic home in the neurological disorders (see Table below). All three disorders share multiple features including significant brain and cognitive deterioration, diagnostic approach, types of treatment, having a strong genetic basis, clearly speaking to the consideration of schizophrenia as a neurological disorder (interestingly, schizophrenia appears more heritable than Parkinson’s disease).
Where these disorders depart company, unfortunately, is the personal and social impact for diagnosed individuals. With a diagnosis of Alzheimer’s or Parkinson’s disease, the clinical paradigm of providing timely and appropriate care is robustly in place. With schizophrenia, a similar paradigm is far from guaranteed, especially in the longer term, with striking rates of patients being untreated, homeless and incarcerated. Thus, while schizophrenia appears to legitimately deserve consideration as a neurological disorder based on clinical and scientific grounds, the lack of recognition of this reality has sadly been associated with much suffering, debilitation and public health cost.
We believe that the inclusion of schizophrenia in the NNCSS could be an important first step towards understanding schizophrenia better, reducing stigma in the illness, and re-invigorating our orientation towards timely and appropriate treatment as well as making incarceration and homelessness unacceptable outcomes for schizophrenia. We appreciate the chance to provide our recommendations to you on this matter. We are happy to provide any additional information or comments that you may require.
Linda Stalters, MSN, APRN (ret)
Chief Executive Officer & Founder
Schizophrenia And Related Disorders Alliance of America
Raymond Cho, M.D., M.Sc.
Chair of the Board of Directors
Schizophrenia And Related Disorders Alliance of America
Click on the link below to sign on to support this letter. Thanks so much.
I spoke with my son Elliott last night. He was a little discouraged that he spent his birthday and Christmas and New Year’s Eve in jail this year.
Elliott has one roommate who is there for allegedly raping a man at gunpoint and just had nine embellishments added. One is a RICO (racketeering) charge. Another roommate is there for allegedly murdering someone. His own mother is testifying against him for the state.
So here is my son, with schizophrenia, sharing a cell with two people most of us wouldn't want to share a neighborhood with and he’s still in good spirits. He’s not delusional at the moment and is in much better shape than he was last year at this time. The state’s providing him with his shots and on time. We’ve learned to take this day by day. Every night he calls me and I always pray for him and the other inmates I’ve gotten to know. Some write to me and some I buy things for because their families have abandoned them. My son has shown me a world I never knew existed. He has grown my heart in ways I didn't know it could grow.
Elliott is my Daniel who lives in the lion’s den. He lives with hardened criminals — some have killed multiple people — and he does it with no fear. He actually moves past no fear to sympathy and empathy for many of them. He gives them his commissary when they first come in, makes sure everyone has coffee, and helps them in any way he can. He surmounts his own pain to help others. I can't imagine what his life is like, and I can’t imagine how I would handle the situation but he does it with such grace. He amazes me with all he’s been through. He amazes me.
Elliot remains my hero — he’s still the bravest person I’ve ever met. Our children, with broken minds, are beautiful souls in so many ways. If only the world could see…
Read Tamara’s post on this blog, “One Day at a Time,” September 20, 2018, in the archives on the right.
Read Tamara’s blog, Health Mind Ministry. Click here.
My story began in 1984 when my son was born with his heart backwards. After four months, open heart surgery, and a stroke which showed no damage, we came home with the love of my life. All was well. Then my son stopped learning at about age four. At about age seven, he started to see things that weren’t there.
My son was diagnosed with OCD when he went to a children’s hospital for an extended stay. They gave him play corn for being good. I could only see him for a short time in the evenings. He’d never been away from us before. I stood it for a week and I made the doctors mad but we took him home.
He started special education but that didn’t last long. The teachers said he tried to stab another child with a pencil. Then he was home schooled. The teacher came by maybe 30 minutes on Fridays. So my son stayed home with me and played with art dust. If not doing that, he sat on the floor and played with his hands. When he got older and tried to start high school, they told him he would have to stay in a one-room special ed class.
We left our home that was paid for, and moved 50 miles to find a high school our son could attend. He’s 34 now and has had one run-in with the law. He spent a week in a behavior center. He was diagnosed with schizophrenia and schizoaffective disorder. We moved from Texas to northern California to be near my older son so he could help us with his brother. We took him to Stanford Hospital to check his data and to see what’s really wrong with him.
Sorry for my going on and on. My husband will be 80 years old tomorrow and I am 71. We are so tired.
Stopping by Woods on a Snowy Evening by Robert Frost
Whose woods these are I think I know.
His house is in the village though;
He will not see me stopping here
To watch his woods fill up with snow.
My little horse must think it queer
To stop without a farmhouse near
Between the woods and frozen lake
The darkest evening of the year.
He gives his harness bells a shake
To ask if there is some mistake.
The only other sound’s the sweep
Of easy wind and downy flake.
The woods are lovely, dark and deep,
But I have promises to keep,
And miles to go before I sleep,
And miles to go before I sleep.
Hope you have a good weekend everybody!
Note: As of January 1, 2019, all works first published in the United States in 1923 entered the public domain including this poem by Robert Frost.
Remember the homeless kid I wrote about who had a really bad episode outside my apartment? The cops refused to take him to the hospital because he would, likely, be released.
Two months ago he had a similar episode. I hadn’t seen him since.
This A.M., Nick showed up at my door. Clean cut. Calm. He said, “I’m on meds and living in a group home a couple towns over.”
Omg! He looked so good.
He said, “The second episode made me realize I needed help. I went to the ER and asked to go to inpatient.”
He was an in-patient for a month. While there, he was connected with outpatient services and placed in a room and board home. He has 60 days clean.
Bless his heart. He looked so good and said, “I’m happy.”
I love happy follow ups.
Read Kathy’s story about Nick, September 19, 2018 — The “Right” to be So Ill
I'm taking a short break from my blogs. About a month. Have to catch up on things like computer maintenance, organizing files, researching publishing options for my book, Sooner Than Tomorrow - A Mother's Diary, personal correspondence, spending time with family and friends, and generally giving myself a mental health break. Your stories are intense and weigh heavily. I take long drives in the countryside several times a week to decompress. I'm always thinking of you.
The "Your Stories" blog is officially two years old. Starting from scratch, the blog is expanding at a respectable 150% growth rate on my website. In 2018, it's on track to reach over 20,000 readers in 75 countries including the US, Canada, UK, and Australia. We even have a couple readers in Bangladesh and the Republic of Moldova. And then there's the added exposure on Facebook. Stories on my author page, where I initiate blog posts, are now reaching 5,000-7000 viewers per week.
Sooner Than Tomorrow is still a baby blog, but it's a place to get our stories about serious mental illness out there to people who have no experience or comprehension of what our families live through. It's a public platform to call out the criminal state of our mental illness system.
As I pause, I want to acknowledge the individuals who've shared their stories on Sooner Than Tomorrow in the first two years, some more than once. In order of appearance: Teresa Pasquini, GG Burns, Heidi Franke, Janet Hays, Mike Gaeta, Kendra Burgo, Sherry Hunter, Joann Strunk, Mary Barksdale, Gloria Hill, Craig Willers, Deborah Fabos, Lynn Warberg, Linda Olivia, Mary Enos, Karen Riches, Val Greenoak, Christi Weeks, Gilbert Anderson, Jr., Sylvia Charters, Robin Burton, Donna Que, Maggie McGurck, Debra DeLash, Tama Bell, Maggie Willis, Kimberlee West, David L. Bain, Patricia Gager, Marie Abbott, Sonia Fletcher Dinger, Crystal Burkes, Jeanne Gore, James Callner, Anne Schmidt Francisco, Laurie Lethbridge Christmas, Mindy Willers, Amy Kerr, Kate Schultz, Ray Maternick, Laural Fawcett, Nikki Landis, Laurie Lasmus Vogel, Margie Altman, William Vogel, Laura Pogliano, Janet Wood Asbridge, Diane Rainbowitz, Sandy Turner, Joe IV, Elizabeth Courtois, Deborah Geesling, Kevin, Frank Robbins, Joyce Berryman, Sheila Ganz, Cheri Van Sant, Andrea Turner, Donna Hairston, Judy Waldo Bracken, Ryan Reyes, Lynn Nanos, Ray Weaver, Ron Powers, Harriet B., Kecia Bolken Speck, Kathy Baker, Travis Christian, Mary Sheldon, Emma's Mom, Melinda Nichols Balliett, Rhonda Hart, Laurie Mendoza, Mary Irwin Butler, Alison Letterman, Jorge Fajardo, Nicole Finn, Donna Erickson, Tania Irie, and Gwendolyn Bartley. Thank you for being brave and speaking out.
I'd also like to acknowledge Facebook groups whose members have contributed stories to the blog: CCAC (Circle of Comfort and Assistance Community), Advocates for People with Mental illness, Parents and Advocates for Families Seriously Mentally Ill, Parents Blogging About Addiction and Dual Diagnosis, OCD and Anxiety Awareness and Resources Around the World, and National Shattering Silence Coalition. NSSC is a new organization that speaks out about federal, state and local policies that impact adults living with SMI (serious mental illness) and children and youth living with SED (serious emotional disturbance). I'm proud to be a member of the Steering Committee.
I'm hoping I'll find a few of your stories in my inbox (on this website on the Submit Stories page, or sent to email@example.com) when I return from my break. Your writing can be as informal as a post on Facebook, as intimate as a letter to a friend, or as angry as a rant to a newspaper editor. Your voices, real and raw, are what give your stories so much power. I'll work with you and help you edit your stories, if necessary.
As we head full-tilt into summer, I wish you relaxing days, mental illness successes, and comfort in knowing you're part of a caring community. Thank you for all you do.
Kevin got out of the hospital Friday and was admitted to another hospital yesterday. When he got out Friday he was agreeable to the new treatment plan. Monday morning, when it came time to call and make some appointments, the agreeableness was gone. He got very agitated, started yelling, and broke our back door.
He left and started calling people trying to have our kids put in foster care. He's decided I'm a terrible mom and he can't take care of them, so they need foster parents. Unfortunately, the police showed up and questioned me in front of the kids. So they saw and heard too much. And his breaking the back door scared them badly enough that they don't want to see him. I worked for years to shelter them from the majority of his bad symptoms and, within 12 hours, it was all undone.
Yesterday, Kevin texted me not knowing what was going on, and he didn't seem to remember much of what happened Monday. He went to his psychiatrist and was admitted. This morning, I called him to see about meeting with his social worker about housing or residential treatment and he's a totally different person. He is not sick. I'm the problem. If we get a divorce then he will be fine. He has a whole alternate reality version of Monday that sounds like a typical marital fight — nothing like what actually happened.
Kevin is diagnosed with schizoaffective disorder, bipolar type, and severe PTSD (combat related). He can't come home. We've reached the point where I can't protect the kids from him anymore. But I'm a fighter and I'm not willing to throw in the towel. I believe he could become stable again.
The first time I read I Am Not Sick I Don't Need Help it was a library copy. Then I gave away the copy I bought. I overnighted a new copy that will be here tomorrow. This is a different situation than I've been in before. I'm more detached and he is sicker. While I wait for my new copy, his anosognosia comes and goes. He accepts that he is sick until it's time to see a provider. It's the same pattern every time. When it's time to see a new doctor or therapist he freaks out and causes major drama. Within a few days, he comes up with a plausible story of some typical fight couples have. Then he decides he's completely fine.
Have any of your loved ones accepted long-term that they are sick? This has become the biggest barrier to his care but it is evolving so fast that I can't keep up and I need advice.
To be continued.
April 2, 2014
I'm happy to tell you I'm feeling better. Ever since I got moved I've been able to talk to people in their cells next to me. I'm still in solitary but having other people around me going through the same things helps me endure the time.
I've been exercising almost everyday so I believe this is helping my depression. I still am suffering side effects from all the medication they had me on such as having difficulty processing my thoughts. I feel like I have major writer's block sometimes. I also feel like I don't have feeling. I feel numb, but other than that I'm doing good. I'm starting to write poetry which is a good sign of progress.
Thanks for putting my letters on your blog. I have gotten letters and cards from various people that tell me they heard about me through your blog. These people have touched my life and given me inspiration to live my life. I no longer feel hopeless but I am struggling with my purpose.
I like to sing, it's what make me the most happy. I want to make people feel better through my music but ever since my accident with the psych-tech, I haven't been able to sing. This deeply affects my relationship with God because I like to sing worship songs to him. I think God is testing me to see if I really love Him or not. I do. I love God.
The support I've gotten from people has encouraged me to keep my faith and belief that God has a purpose for me. These letters come at a time when I'm down and out. The love and support I feel is making me want to give back to society all my love and dedication. The key to my turn around is taking it one day at a time. Taking the advice from you and everyone else. And believing that God has a purpose for me. I'm still not as close to God as I want to be. I'm praying to get closer to Him.
Pat sounds like he was a nice guy. I wish he were still around. I'm sorry for your loss. But I'm sure he would be proud of your advocacy for people with mental health issues. I know if it wasn't for you and all the letters I've gotten that I wouldn't be as positive as I am. Thank you.
I hope your mother has a happy 100th birthday. She must be a tough old lady. Enjoy your time with your grandchildren. Have fun getting ready for your mom's birthday. Keep plugging away on your book and blog. I pray you get lots of work done.
Until next time, have a blessed time. Thank you for the card. I appreciate you putting my letters on your blog. I pray you are well in Jesus name.
You can write to Travis at this address. Thank you
California Men's Colony State Prison
P.O. Box 8101
San Luis Obispos, CA 93409-8101
Cell #: B-1
4-18 Travis' mother writes: Hi Dede, Travis is still at Men's colony in San Luis Obispo. He is most likely going to be transferred, tomorrow, to the new Folsom prison in Sacramento. His lawyer's been trying to stop the move but, so far, it's still continuing. I visited Travis on Sunday and he was pretty down about going and very frightened. He's going to a level 4 180. It's the highest level. The only higher level is solitary confinement. Travis said, "It's for the most violent offenders." Once again, I fear for his life. The mail from Men's Colony will follow him to Folsom. When I get his new address, I'll send it to you. Thank you for being a friend and a light for my son. Kathy
National Shattering Silence Coalition is collecting stories about people with serious mental illness who have encountered the criminal justice system and we will be sharing them for the National Stepping Up Day of Action on May 16th. This year we are showcasing stories that involve the criminal justice system and how it handles those with serious mental illness. By being brave enough to share your personal story or the story of a loved one, you are helping us to shatter the silence. You are encouraged to share pictures or videos of your loved ones with us as well. By telling our stories we shed light into the dark issues those living with serious mental illness face every day in America.
Your story is important, and we want to hear it.
Let's talk about hopeful voluntary admissions. We have had four very long ER visits (5-14 hours each) in the last couple of months trying to admit my fear-filled, very psychotic son voluntarily. When my son gets to the point that he's asking to go to the hospital, he's beyond ill and fearful. He battles monstrous auditory hallucinations while he's in crowded waiting rooms with the elderly, sick babies, and patients with infectious diseases. It's horrid for him and potentially horrid for them.
No beds were available in the Philadelphia metro/suburban area within a 50+ mile radius. These four useless ER visits led to exacerbated illness resulting in an involuntary admission which is always more heartbreaking and exhausting. Unfortunately, in our locale, we cannot call or look for available beds on our own. It must be done in a local ER as follows:
*Long waiting room wait
*Triage evaluation (psych patients are rarely prioritized)
*Back to the waiting room and possibly another long wait
*Med clearance including blood/urine tests, etc.
*Psych evaluation by social worker when available
*Insurance approval — usually a lengthy process
*Bed search (typically hours/sometimes days)
*Clinical review/approval by the admitting facility if a bed is available
*Wait for available transport to the admitting facility
*Lengthy wait/intake at the admitting facility whatever hour fatigued patient arrives
At times, very ill patients have been known to lay in ER beds from overnight to an entire week+ until a bed becomes available. How terrible that someone seeking mental illness treatment is left waiting so long. Imagine if this happened to someone with appendicitis or broken bones. Understandably, patients with serious mental illness become uncomfortable, frustrated, anxious, and further disturbed. They receive very little attention from ER staff unless they're acting out. Many, including my son, give up and walk out of either the waiting room or the examination room. The process is pretty much the same here for involuntary admissions. They involve the police, lengthy paperwork at the County Crisis Center, and legal approval. So tack on several more hours.
I've mentioned to several ER docs and nurses, to no avail, that these critically ill patients should have a separate waiting area, be triaged expeditiously to an ER bed, and not be left alone for long periods of time. It's a cumbersome and careless system. The entire process needs to be streamlined and more efficient. It needs to provide timely access to safe and attentive emergency care and in-patient beds.
The mainstream media paint the picture that if only these mentally ill individuals would seek/get the necessary help, then we wouldn't see these ongoing mass shootings. That may apply to a few but truly no one, especially the media, has a clue as to the availability of mental health care, let alone timely/quality care, unless they've walked in our weary shoes.
Bottom line: We're serving our seriously mentally ill in a very questionable and trepidatious manner, if at all. The availability of in-patient beds is in crisis. It's no wonder. Several of the better hospital psych units in this premier healthcare area have closed (not profitable) in lieu of expanding profitable cardiac units, etc. A crying and growing shame leaving personal and community tragedies in the making...