Stigma/Mental Health/Medical 2016
By – Sheri de Grom
Notes From My Journal – Conway, AR Dec – 2015
My Grandmother Fromm taught me the importance of keeping a journal when I was 8. She said, “It is never simply a record of daily events. Write with conviction, feel and believe in who you are. It’s okay if others don’t agree.
I remember well that first mental health hospital admission of Tom’s on December 7, 1987. We didn’t know we had other options to gain admission other than the ER.
Those memories of that first admission linger in my heart as if it were yesterday. I first saw the brutality and stigma among not only the general health profession but more tragically, mental health professionals. You may read that blog here.
I reference that first mental health admission of 1987 because I’m infuriated so little has changed since that time. I’m surprised individuals with mental health concerns seek care as often as they do considering how badly they are treated.
I wouldn’t have the proof of this callous, indifferent care continuing 17 years later if I weren’t deeply involved with Tom’s medical records covering the past 30 years.
Why have I spent thousands of hours advocating on behalf of those with mental illness when the health industry continues to turn their backs with indifference on millions who desperately need their help?
I’ve been absent from the blogging world more than I’ve liked due to the responsibilities I have of preparing two case files for Tom and me that will decide our future. We both want to stay in our present home and that will be possible if I’m able to present the specific combination of information the VA requires.
To prepare the cases, I studiously reviewed each page of Tom’s medical records since he retired from the military, along with his complete active duty medical records. Together, the medical records span 50+ years. I wish I could detach my mind from what I’ve read. This is the man I love and what I read is more often than not, barbaric. He wasn’t in an institution nor a patient in any system. He was a full-paying client and no one cared.
In the particular medical record I’m enraged about today, I’d adhered to every regulation required by HIPPA and I still don’t have all the records I requested 3 times from the same hospital. What I do have is a record I specifically stated I didn’t need at this time and it makes me wonder if a copy clerk somewhere wanted to pass the information on or if it was simply a mistake by an outside agency providing the record.
Speaking of the outside agency, forget about your medical information being protected. It’s Not. Investigative research has led me to the conclusion that HIPPA does not protect the patient’s privacy. It does, however, make it almost impossible to obtain a copy of your own medical records and causes far too much work for in-house administrative staff.
You are entitled to a copy of your medical records. I’ve paid as much as $5.00 per page for some of Tom’s copies. The cost of preparing one case file for a VA claim will be a few thousand dollars before I finish. The few thousand dollars will be for each claim and that doesn’t compensate me for my professional time or administrative expenses. It’s no wonder veterans feel they have to hire attorneys to represent them. I understand their frustrations.
I’d requested a copy of all emergency room visits for Tom with the exception of psychiatric and one specific outpatient surgery record from Baxter Regional Medical Center in Mountain Home, AR. It’s the hospital we used the 2 years we lived in the Arkansas Ozarks.
What I received, after all the proper exchanges of HIPPA forms, was the one outpatient surgery record and one ER visit. I specifically asked not to be sent any psych ER records. I didn’t need them. I only needed records about Tom’s many pulmonary related visits. The one ER visit enclosed was for a psych visit and no others.
I hadn’t asked for this outpatient ER medical record but I’m glad I received it.
I stormed around my winter gardens for hours wishing I had weeds to pull or some such thing. I even had a few times when I’m sure I could have uprooted a tree with my bare hands.
The official final record reads: “A 57-year-old white male who presents to the emergency department with worsening shaking presents to the emergency department with worsening shaking hyperventilation, headache, and shortness of breath. He has been diagnosed with bipolar symptoms for approximately 2 months. He is on the bed just shaking the whole bed quivering, sweating. He also complains of leg pain. He has these same symptoms. Apparently, he has been admitted to the sixth floor for this in the past. He is very anxious, hyperventilating, just shaking from head to toe. It is hard to tell if this is intentional shaking or whether he actual does have a tremor.
I talked to Dr. Dollins, who normally takes care of him. The family requests a psych evaluation. He will be admitted to the sixth floor for severe anxiety versus psychosis versus bipolar.” End of Official Record.
Many have argued with me that negative conditions toward the mentally ill could not possibly continue at the rate I’ve witnessed and reported over the years. I had no idea the negative remarks were becoming a part of Tom’s official medical record. It’s critical for all patients and those who love them to join together to ban stigmatizing reporting in all health records.
Remarks such as the ones quoted above are not only erroneous, they are misleading and can cause an insurance company denial of a claim.
The inaccuracies in the record other than grammatical included: the length of time Tom had been diagnosed bipolar. Tom had been a patient in this hospital before and bipolar was a disease listed in his permanent chart. Tom was diagnosed in 1987 and not 2004.
The sixth floor the report refers to is the locked geriatric unit for dementia and Alzheimer’s patients. Baxter Regional Medical Center in Mountain Home, Arkansas did not have a Mental Health Unit. Therefore, all mental health patients were admitted to the geriatric unit.
The geriatric unit is not the ideal place for ANY individual to recover. Mental health patients are fragile and anxious plus the atmosphere alone is distressing.
The closing sentence of the medical report: “It is hard to tell if this is intentional shaking or whether he actual does have a tremor.”
During this same time period Tom was diagnosed with Parkinson’s Disease and the same as Bipolar Disorder, there’s no definitive test to diagnose the ravages to the brain both diseases cause.
The ER doctor reported he’d talked with Tom’s psychiatrist at the time, a Dr. Dollins. I had already spoken with Dr. Dollins and he’d agreed a direct admit for Tom was the best plan. When we’d arrived at the admissions office that dreadful night in 2004, they did not have an admission order on file for Tom and we were left with no choice but to face the dreadful emergency room.
I was so stressed and concerned for Tom that night, I didn’t remember my normal protocol when the hospital staff was telling me what I had to do! I knew I didn’t have to agree to anything. Dr. Dollins had written an order and I wasn’t holding them accountable.
I’d talked with Dr. Dollins earlier that evening and he’d instructed me to take Tom to the hospital where a direct admit order would be waiting for us.
I SHOULD HAVE called Dr. Dollins myself and asked him what happened to the direct admission orders he’d promised. I had the right to demand more. Tom was his regular patient and saw him every week.
Often it’s difficult to remember your own playbook.
Miracles do occur.
As a result of this hospitalization, I knew I had to forget all of my old ideas about using only providers covered by Federal BC/BS. It hit me; I’d been practicing my stigma about all the negatives I’d developed over the years about the VA. It was our one remaining resource. It was time for me to stop being a snob and reach out.
Tom has now, as of today’s date, been with the same psychiatrist at the VA for 11 years and after that first admission when he was taken off all medications, he’s never had another mental health admission. The relationship we have with Tom’s psychiatrist at the Veteran’s Hospital at Fort Roots is one we both treasure. Tom has been free of mental health admissions for 11 years. We’re convinced Dr. Kuo’s treatment is one of the main reasons Tom’s alive today. The 3 of us have a partnership. We have a great working relationship and if that means we must live in Arkansas and not the Central Coast of California, then so be it.
We’ve made progress in educating the public about mental health but I have grave concerns about healthcare professionals. They continue to allow mentally ill patients to die 25 – 40 years ahead of the general population.
I’m estimating it will take an additional two months for me to complete the VA Claims mentioned earlier. As I read Tom’s medical records, I’m amazed that one man has survived so much.
Thank you for reading with me. I cannot specifically write about what’s going on in Tom’s and my world at present. It’s just too painful. My hours as a caregiver are long; I see the pain in Tom’s eyes and would give most anything to ease the spasms of pain that rack his body daily 24/7.
Our precious Bailey divides his time between being doctor dog and my sidekick. On those days when Tom has an especially difficult time both getting enough air and a problem swallowing, Bailey stays extra close to Tom.
May I impress upon you the importance of acquiring a complete copy of all your medical records [a copy of each doctor visit to include labs, x-ray and other tests]. Additionally you need the interpretation of the labs, x-rays, etc. This information is vital to your welfare. We cannot rely on electronic records. They are crashing faster than they are created and stolen at an even greater speed. Tom’s records alone present far too many problems. It would take a lifetime for me to have the mistakes corrected.
I’ll not stop fighting for equitable care for the mentally ill and I pray you won’t either.
Thank you for reading with me.