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.






About Sheri de Grom

Retired Fed/JAG, 5 yrs. on Capitol Hill. Former book buyer for B and N. Concerned citizen of military drawdown. Currently involved in mental healthcare reform, health care strategist and actively pursuing legislative change wherein dual retirees are exempt from enrolling in Medicare at their own discretion without losing tertiary healthcare benefits. Monitor and comment on Federal Register proposed legislation involving Mental Health, Veterans Affairs, Health and Human Services, Medicare and rural libraries. Licensed OSHA Inspector to include Super Fund sites. Full time caregive to Vietnam era veteran. Conceptualized, investigated possible alternatives, authored, lobbied for, and successfully implemented Title X, Section 1095 (known as the Third Party Collection Program of Federal Insurance).
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  1. Thank you Sheri, standing up for Truth is not always easy, if ever but yes well worth it.

    Sorry it has taken me so long to respond to your Post Message Sheri, I have been going through a Storm too, including discrimination because I’m disabled but I hold onto the Truth regardless of what others say and think in their Carnal Flesh, we are of great value in God’s reckoning, He knows those who are His and not one of us will be lost and of that I have no doubts.

    Christian Love and Blessings – Anne.

    • Yes, Anne, we must stand up for the truth. There’s simply too many willing to tear both those we love and us down. It’s gone on far too long and I’m not going to stand for it. People must be held accountable.
      The discrimination baffles me to no end, especially among the medical personal. If we and our lloved ones weren’t there for care, they wouldn’t have a job. They somehow never seem to understand the total value of the equation. Prayers for you, Sheri.

  2. cindy knoke says:

    You are such an impressive person Sheri and Tom is so lucky to have an advocate like you. We all are lucky to have you as an advocate for all patients and their rights.
    My physician would have kittens if I asked for my records which I know is a problem. He won’t even send me the results of routine annual blood draws. He doesn’t want to trouble my little feminine brain! So many physicians hold patients in subtle, or not so subtle contempt.

    • Your physician cannot keep your records from you. They must provide you a copy within 90 days of your request. They may charge per page but they must release the records even if you can’t pay when you pick the records up. You can also request they be mailed to you and the facility must comply.
      My physicians and Tom’s know I’ll ask for all copies of blood test, etc. that I’m now given a copy at the time of the appointment. You deserve the same.

      • Cindy – I realized after I posted this – you already know all of this. I posted it because I wanted to have the information out there for others that may not be aware they are entitled to copies of their medical records.
        One of these days, I’ll get around to posting some of the routes I went through to gather Tom’s medical records [all of them from 50 years back and coming forward].
        Happy climbing and stay safe. I’m enjoying the first monarchs of the season outside my office window and Bailey has an endless supply of hummingbirds to watch.

  3. Grace says:

    Hi Sheri! I’m new to your blog and I just wanted to say that your advocacy for those who are mentally ill is not in vain! Even if the health industry may react with indifference, your efforts encourage mentally ill individuals like me that we are not fighting this battle alone. THANK YOU!

  4. God is Good says:

    My prayers have been with you as I was reading your post! I did note you wrote “No admissions for 11 years”! Wonderful … I hope to have a similar testimony re the mental health of my sister. I declare and pray for break through for you. Blessings.

    • The mental health admissions were always hard beyond belief. I never knew from one day to the next what to expect from the medical profession. After the first two years, I learned that as Tom’s wife, I had the right to read Tom’s medical records and view his medicine chart before any changes were made. No one was pleased with that arrangement. The mental health industry as a whole wants to lock the family of the patient out at every possible opportunity.
      I pray your sister receives the care she needs. Through the years, I’ve learned it’s the physical breakdown of Tom’s body I didn’t know to demand more attention from a specialist. Medication inserts must be read with care. I wish you all the luck in the world.

  5. inesephoto says:

    Sheri, I am not an American, but when I first time read about Obamacare, I was almost crying in frustration. And it is only beginning, some consequences will show themselves in another 5-10 years. I am wishing you both strength and sending you my thoughts and love and comfort. xx

  6. Needed a quiet time/place to read your blog. It was worth the wait. I hear your message. And I can only guess at the fear and frustration you and Tom encountered over all these years trying to not only navigate ‘the system’ but ensure restorative treatment. Only you know how many times Tom almost died… feels like dozens. I’d say he’s a miracle. And so are you. His guardian angel in this life. Hugs!

    • Hi, Mary – Thank you for stopping by and reading with me. I so appreciate your taking the time out of your busy schedule to leave a thoughtful comment.
      You are so right, navigation is definitely the correct choice of word when it comes to finding the best care for someone with any illness but it seems even more important with mental health. Just one slip up and your loved one can be gone forever.

  7. Alexa says:

    Another great read Sheri.. good to hear from you as well.. stay strong, but I already know you are such.. Continued blessings!

  8. Angie Mc says:

    Dear Lord, Sheri, I know what you write is true. The arrogant and cavelier attitudes often combined with incompetence is shocking. Shocking! And what about all the needy who don’t have you? Breaks my heart.

    • Hi, Angie – Thanks for stopping by and reading with me. I often wake up from a nightmare of hundreds of broken hearts running across mountain tops because although they tried everything they could think of, nothing had worked in the world of calloused mental health workers.
      Often, those without an advocate end up homeless or in the prison system and heaven help them if they become a victim of either circumstance.
      How’s the running?

  9. Terry says:

    May I share some of these informative posts on my MSA page?

    • Terry, Absolutely! One of the reasons I’m posting what I learned and continue to learn is in the hopes that others will be able to avoid some of the same situations. Especially the fact that Tom was discharged from a hospital when he was still critically ill. Had I known about ‘the homeless law’ I would have used it. It’s a wonder he didn’t die as a result of the hospital sending him home. They wanted his bed as they had performed 3 surgeries on him in 3 days with anesthesia – he had major open wounds, etc. I’m going to blog more about this later. Had I know about ‘the homeless law’ I would certainly have used it.
      Feel free to use whatever your audience would like to know. Also, could you please send me a link to your MSA page. TX, Sheri

  10. lbeth1950 says:

    The that note is poor at best and judgmental at worst. It does not describe symptoms, just an opinion. This is deplorable.

    • I agree and it’s not getting any better. I’ve finished putting Tom’s VA Claim together and I could have added at a minimum 30+ more excerpts to go with the one I posted. It continues to shock me that medical staff dictates such unprofessional record notations.

      • lbeth1950 says:

        There is no place for judgment. Totally deprives patient of access to care depending on what caregiver reports, or fails to report. Recently, when my mother had hearing problems, I had to make sure caregivers knew the problem was her ears, not her mind. Since she is 88, in every case, the assumption was she suffered from dementia.

  11. pendantry says:

    The biggest problem with the way things are going is the increasing dependence upon electronic records. It’s been shown time and time again that people believe what computers tell them, even in the face of direct evidence to the contrary. Electronic records cannot be trusted; yet, if nothing improves, they will become as gospel.

    • I totally agree. Electronic records and Obama Care is the absolute destruction of health care. Once something has been added to an electronic record or left-off, it can be a matter of life and death. It is almost impossible to have anything corrected on the record. Most of the physicians I come into contact with dislike the electronic records.

  12. There are so many things wrong with what’s happened to you and Tom–starting with that record you shared. Not only is it poorly written, but it’s impossible to determine if the medical professionals are judging him or merely inept. Just awful.

    • Jacqui – I thought you’d appreciate the record and it’s not as poorly written as some I’ve read over the past several months.
      I have to say – the so-called medical professionals are harsh against those with a mental health condition. I’ve seen it happen over and over for almost 30 years now. It doesn’t get better. We’ve yet to encounter ‘the soft edge’ of mental health care.
      The minute the intake nurse recognizes Tom is on a psychiatric labeled medication, a shield seems to come down and I know he’ll be treated differently than I’ve ever been treated in a hospital.
      If it weren’t for Dr. Kuo at the VA, I’m not sure either one of us would be alive today.

  13. willowdot21 says:

    Sheri, I do not know how you cope. Sending love to you and Tom xxxx

    • How nice to see you. I’ve thought of you often and your Sunday coffee. I’ll get back to making the rounds more often, I hope. My life has taken a spin these days and not many hours exist as they used to. However, I miss blogging and chatting with everyone.
      I hope you are well.

      • willowdot21 says:

        I am fine Sheri thank you. You and Tom and you are often in my thoughts. I have not been able to do my coffee mornings so much of late but I am trying to blog daily even if only short blogs! It seems so unfair after all the years and hours you have put into advocacy that no one can seem to support you more.
        Thank goodness for Bailey what a blessing dogs are.
        Love to you both. xxxx

  14. I tried to leave a comment many times, Sheri; but it isn’t working. Thank you for this post. Don’t know if this will go through either. It’s so important to have someone to advocate for anyone who is sick and going into the ER and hospitals for any condition. When you are not well, you can’t think straight or understand things and that’s a bad situation to be in. Tom is lucky to have you and you’re the perfect advocate for him in his condition. I can see why you wouldn’t leave your residence if you’ve had great psych care for 11 years. Well worth staying where you are. And not many people would know about telling the medical staff that if someone is discharged they’d be homeless. Wow. Thanks for this post, Sheri.

    • Patti – As always, thanks for stopping by. You may have had the problem commenting due to being one of my earliest followers and you may be following by e-mail. If so, wordpress is no longer in the name of my blog. It’s simply Hopefully that will help resolve the problem.
      I didn’t know about telling the medical staff Tom would be homeless if he were discharged he would be homeless until a social worker discretly told me. That’s worth a lot to me. When they sent Tom home from the hospital the first time, he was still in critical condition!

  15. ksbeth says:

    thankfully, there are those people like dr. kuo out there, but they seem to be very far and few between. he is so lucky that he has you fighting on his behalf and i know many do not have anyone standing up for them, how are they expected to survive this horrendous and inhumane system. i’m glad that you have each other, and bailey and a few good people to keep you going. hugs –

    • Beth – Hello and thank you for stopping by to read with me. Yes, we are so blessed to have Dr. Kuo on our team. He’s a gem. Each time he’s been promoted, he’s worked his magic to keep Tom as his patient. He’s supposed to be strictly a high-level administrator now but all I need to do is call his private cell or text him and he takes care of whatever we need. He sees Tom on an as needed basis.

  16. Yvonne – Thanks so much for stopping by to read with me and leaving a thoughtful comment. I’d wanted to add pictures of Bailey to this blog but the pictures I did add, didn’t post.
    He’s such a little sweetheart and of course a shih tzu rescue. He’s 3 yrs old and was rescued from a hoarder that had 72 dogs in 2 rooms.
    Had I known Tom was going to be so critically ill and in the hospital for such a long time [away from home for 3 months] I would have missed out on getting Bailey. However, I’m not sure how I would have gotten through all of this without him. He’s an incredible comfort for the both of us.
    How are you? I think of you often and wonder how you are holding up. Sheri

  17. Thank you, Sheri. Since I’m a health advocate for my elderly parents now, I appreciate your post.

    Wishing you and Tom find easy resolutions to what you are going through.

    • Thank you so much for stopping by to read with me and to leave a comment. Advocating is a tough business in this day of health care. I’ve learned so many things I didn’t want to know since Tom was admitted to the hospital in Jan. From the fact that he was discharged from one hospital still in a critical condition and then to learn that a surgeon had taken him off all of his psychiatric medications and never added them back into his daily regiment, The most important thing I learned is that your loved one cannot be discharged from a hospital or any care facility if you tell the discharge planning staff the individual will be homeless if discharged. [Your excuse for the person being homeless does not have to be rational, you simply have to be able to make the statement]. I wish I had known about this ruling far sooner than I did. I learned other crazy rules/laws along the way and I’ll be talking about them in the future.

  18. What a mess. The US medical record system is terrible. S
    Discrimination against mentally ill clear. Ignorance about diagnoses… So many wrongs…

  19. Great post Sheri. I hope and pray that somehow you are getting some rest. You do know that stress of care giving can cause you to become very ill yourself. I’m glad that you got Bailey to comfort Tom. A dog is the best thing for him when he is in such terrible pain and having a hard time. I wish I had better words for you but I can not think of anything to comfort Tom and you. I can only offer my best wishes and prayers for Tom to feel better.

    Do take care, Sheri.

    My best regards,

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