MENTAL HEALTH, DISCRIMINATION AND DIAGNOSTIC OVERSHADOWING

Mental Health/Discrimination/Diagnostic Overshadowing/Mortality/Medical Care 2015
by:  Sheri de Grom

My Grandmother Fromm taught me the importance of keeping a journal when I was 8. She said,

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.”

Why do I continue to question the ongoing discrimination of medical professionals toward individuals with a mental health diagnosis?

I see the defeat in Tom’s eyes when he tells me, “There’s no need to go to the doctor or even try; nothing will change.”

Logo for those of us promoting advocacy on behalf of the mentally ill.

Logo for those of us promoting advocacy on behalf of the mentally ill.

Given our experiences over the last two decades in finding both appropriate mental and physical health care for Tom, I shouldn’t have been surprised by the statistics reported in an exhaustive report, “Morbidity and Mortality in People with Serious Mental Illness.” This report provides a comprehensive review that provides an overview of recommendations and general call to arms by the National Association of State Mental Health Program Directors.

The study outcome – physicians and other healthcare clinicians are responsible for individuals with a mental health diagnosis dying 25 year earlier than those without a mental illness.

This 25 years does not include the number of deaths caused by other problems in the medical community or other deaths related to comorbidities of having a mental illness.

First on the list of ignored illnesses is unsurprisingly, cardiovascular disease. Two large studies from reputable research groups revealed that patients with both a mental illness and a cardiovascular condition receive about half the number of follow-up interventions, like bypass surgery or cardiac catheterization, after having a heart attack than did the “normal” cardiac patient.

Commonly overlooked chronic physical conditions endured by bipolar individuals include: migraines, irritable bowel syndrome and manual heart valve prolapse. No one knows why these diseases are most often connected but ignored.

Most shocking to me are the subtle findings in various studies that deserve special note. Although the numerous studies cover 29 countries, there’s no evidence of a difference based on the source population or geographic region being studied. The increase in mortality reported in all studies maintained a relatively high level of mental health care. Rather than finding a decrease, it appears that the recent improvement in life expectancy for the general population, such an improvement has not reached the population with mental illnesses.

Tom and I have often talked, he would have died long ago if it weren’t for me pushing and shoving the physical medicine department to care for Tom the same as they did for me. I demand the same respect and attention. This past year Tom was misdiagnosed for over seven months for a condition he did not have and if I hadn’t demanded, we’d still be in that deadly cycle. I believe we are beginning to see the light of having a new team for Tom’s healthcare but it’s been most difficult. As his wife and 24/7 caregiver, I would not give up.

According to a review of 4,650 patient profile studies done by the Institute of Psychiatry at King’s College, London from 1990-2000, 0ver 90% of people with a serious mental disorder–including bipolar disorder, major depression, schizophrenia and schizoaffective disorder–end up with a wrong medical diagnosis and are under-treated.

Our experience at yet another ER demonstrates clearly what often happens when an individual with a mental health diagnosis presents for medical help.

Tom had a harsh cough develop a week before Thanksgiving, 2014. He’s had this particular cough off and on for well over 20 years and we cope with it 2 to 4 times a year, every year, since it started. We’ve tried every suggestion tossed our way: every grandmother’s remedy, every witch doctor’s potion, ideas from fellow bloggers and even ideas shared over the garden gate. Nothing has worked.

I’ve accepted we’ll never have a diagnosis for his cough. Tom has undergone extensive testing to include 10 days in a hospital isolation unit where world-class pulmonary physicians tested him for every exotic disease imaginable. At the end of the 10 days they said they didn’t have an answer as to why he coughed or how to treat it. They admitted the cough was alarming but they didn’t know why the cough started or why it stopped. I continue my research with every new respiratory virus reported by the Centers for Disease Control (CDC) [and follow advances reported on old viruses] because I am Tom’s #1 advocate. Giving up is not an option!

The doctors dismissed Tom from isolation to home with an inconclusive diagnosis and no recommendation for follow-up. He doubled over in a fit of deep coughing as he was discharged from the hospital.

What I know as Tom’s wife is the severe coughing is one of the many medical conditions plaguing Tom and thus affecting his health negatively as well as our quality of life as a couple.

When Tom coughs, I grit my teeth, knowing I have nothing in my toolbox to help him. I don’t play the helpless wife well. I want results and I want them now! It’s a vicious circle day in and day out. The non-stop cycle of coughing throws him into dry heaves and many nights it’s easier for him to sleep on the bathroom floor. He no longer has the energy to make the trip from our bed to the bathroom.

What I do know is that Tom didn’t develop the cough until approximately 5 years after the

Medication Prescribed - Getty Photo

Medication Prescribed – Getty Photo

start of massive amounts of psychiatric medications. One of the advantages of having a detailed journal is being able to compare the specific start date of new medications and types of therapies along with any new medical symptoms.

What do I do now? The cough is severe: Tom falls out of bed and out of his wheelchair from coughing. He loses his balance from simply walking across the floor. I’ve had to make accommodations to insure he doesn’t get hurt while falling. Using a walker strips him of his dignity. My proud American soldier standing tall with squared shoulders beats himself up and I do what I can to ease the burdens haunting him.

Scooter loved to hop on Tom to check on the breathing process.

Scooter loved to hop on Tom to check on the breathing process.

At home, my precious Miss Priss, has become Tom’s safety net. Scooter, Tom’s shih tzu and constant companion is terminally ill and while Scooter still sleeps next to Tom, Scooter knows he can no longer be Dr. Dog for his master.

Miss Priss has been my constant companion for the past 8 years. She has a new job now. I rarely see Tom that my girl

Miss. Priss aka Lady Lansdowne Priscilla has taken on new duties.

Miss. Priss aka Lady Lansdowne Priscilla has taken on new duties.

Priss isn’t at his side. Because of Prissy I’m able to leave the house and work in the garden. If Tom needs me or if she even thinks Tom needs me, she bounces to the door and barks for me to come immediately.

I beg doctors to prescribe something to relieve Tom’s cough and they say, “I don’t feel comfortable prescribing anything, not with everything else he’s taking. How about gargling with warm lemon water?”

I want to scream and Tom will bow his head and say, “Please, just let me die.”

I spent 2 full days calling Tom’s doctors asking for help for his cough. I had to reach someone before all offices closed on a Friday night in late November, 2014.

Again, no one returned my calls and we were left at the mercy of the emergency room.

I’ve never believed a doctor should be fined by Medicare. However, if there is sufficient proof of notice that a patient requires urgent care and that patient gets no response from their physician shouldn’t that physician then be fined the amount Medicare has to pay for the ER visit and all ancillary charges? Those physicians, not returning my calls, were all on Tom’s medical team and had been for many years. The indifference I sensed drove me over the proverbial edge. Each of them knew of Tom’s failing health.

It was at this point in Tom’s treatment that I started putting together a new treatment group of specialists for the man I love. We’d gone through medical hell for the past 6 months and little did I know we had another 6 months ahead of us. Our saving grace was a top psychiatrist at the VA. He is still #1 on my list of doctors to ask what is best for Tom. He’s shown more respect and caring for Tom than any doctor we’ve had the pleasure of meeting and working with.

We’d discovered, over many years of trial and error, that Robutussin with Codeine would stop the violent bouts of Tom’s coughing. It allows the reflex muscles that cause the violent and non-stop cough to relax. Tom can return to living a life without constant dry heaves, but his body remains so weak that he collapses into himself whenever he stands up.

What we didn’t know until [6 months later] and through constant searching for a physician that honestly cared is that the years of Tom’s harsh coughing has caused such erosion of his trachea that it collapses and he cannot take the amount of air he needs into his lungs. I am enraged at the ongoing neglect demonstrated by the medical profession and by their refusal to help him.

The two primary specialists I tried to reach that Thursday and Friday in November, 2014, both knew the cough suppressant worked for Tom and that he was not a drug abuser. The only thing they had to do was call our local community pharmacy and activate a prescription kept on file for just such emergencies.

Not one doctor instructed his nurse to pick up the phone and place the call that would spare us the ordeal of the ER. I couldn’t allow the coughing to continue. Tom hadn’t eaten in well over a week, he could no longer walk unaided and his breathing was labored. It was obvious, none of Tom’s physicians were willing to help him and his psychiatrist couldn’t.

Here we were with the best health insurance available to anyone in the United States plus eight doctors on Tom’s acute care team and we couldn’t obtain medical care anywhere but the ER. Isn’t this what the so-called Affordable Care Act [Obamacare] was supposed to eliminate? The supporters claimed we would no longer need the ER. Surprise, the writers of the 2,000+ page document need to go back to the drawing board. But, I digress.

Conway, Arkansas Regional Medical Center

Conway, Arkansas Regional Medical Center

Arriving at the ER, Tom was placed in a transport wheelchair, the type without arms. I advised the intake that the transport was a potentially hazardous situation but they ignored me. Their behavior was nothing new. From Tom’s first ER visit all those years ago in 1987, we’ve been treated as if we knew nothing.

A mask covered Tom’s mouth and nose and perspiration gushed from his body. He’d coughed so long and so hard, he’d given up. I’d seen that look

Google Image - Lightweight Wheelchair

Google Image – Lightweight Wheelchair

so many times before. Your face can flat-line the same as your heart.

The five patients in the waiting room appeared as if they had been triaged by the intake nurse. Nothing was happening. Why the long wait?

Crash! Tom’s limp and coughing body tumbled forward out of the transport wheelchair onto the cold tile floor.

Why couldn’t anyone see this was an emergency? This accident should not have happened. I was horrified.

How could emergency room care be worse now than all those years ago when we frequented them due to Tom’s episodes of suicidality?

The answer escaped me that night as my mind raced. How can I help the man I love? I couldn’t take him home. We had nowhere else to go. Nowhere else to turn.

It hit me, it’s not just the doctors ignoring individuals with a mental health diagnosis, it’s everyone in the healthcare industry. Once an individual’s medication list is revealed during intake, the presence of a mental illness is obvious and discrimination begins.

From the moment I checked Tom into the ER on that dreadful night in November, 2014, he was labeled mental. The entire staff overlooked all of his other diagnoses. They didn’t care that his blood sugar was well over 400 because he hadn’t been able to keep a bite of food or liquid down in over a week. They didn’t care that he’d had a stint inserted in June 2014 because his previous heart surgeon neglected to tell us that his left artery was 100% blocked! Had we stayed with that particular surgeon, Tom would have died from what’s called the widow maker – cardiac arrest.

This discriminatory neglect by the medical community has become so severe, it now has a proper name. It is called diagnostic overshadowing.

That night at the ER, I knew we were being relegated to the same treatment that we’d received all those years ago in 1987, when we were seeking psychiatric care for Tom. This night we were seeking medical care but nothing had changed. We were being treated as second class citizens.

Why does this happen over and over?

After 1 and ½ hours we were taken to a treatment room. The nurse asked if Tom could walk. Where did she get that idea? After all, he was in a wheelchair and he’d already fallen once. Where were her eyes? Where was her medical training? Where were her human sensibilities? He didn’t have the strength to stand up.

We were taken to what might have been a storage closet in years gone by. Was Tom’s cough so worrisome they didn’t want other patients concerned about possible diseases on the premises? Unlike every other ER treatment bay we’d experienced, to include this same hospital, the room we were in was nothing like where we were now.

The nurse asked Tom to stand to see how stable he was and again, he collapsed into himself and hit the floor.

Three hours later the nurse returned to take Tom’s vitals. He was shaking so hard she couldn’t get an accurate blood pressure read, heart rate or other simple chart information.

Another hour passed as Tom gasped for every breath. His entire right side was shaking uncontrollably and I’d had enough. I went to the nurses’ station and found Tom’s nurse chatting with an EMT. I said, “I suggest you get the doctor if he wants to see my husband before convulsions take over his body!”

The ER doc was sitting with hands behind his head, kicked back in a swivel chair with feet on what should have been a sterile counter.

How dare he?

Ten minutes or so passed before the doctor made his way to our room. By now our little closet seemed like a holding cell for entry into hell.

The doctor burst into the room as if rushing from another urgent event. I noted his perfectly pressed black wool trousers and monogrammed French cuffs. His shirt, obviously not off the rack, hugged his body under an oh-so spotless and starched long white coat. This doctor was about to go off a 12 hour shift and didn’t have a wrinkle or a hair out of place. He could easily walk into a fashion shoot and be the go-to man for gallant, rakish and debonair.

The physician must have stayed the GQ man of the day by not getting close to his patients. He didn’t approach the narrow gurney my husband had been laying on for over 6 hours.

The doc turned to me and asked, “What do you need?”

“My husband requires the skills of a qualified physician!”

“Then let me phrase it this way,” he said, “What do you want?”

“I want a prescription for Robutussin Cough Syrup with Codeine.”

“What makes you think your husband isn’t having a panic attack?”

I couldn’t believe he had the nerve to ask that question. “I know panic attacks from personal experience and from going through them while Tom fought his own demons. If I’d thought this was a panic attack I have enough medication to treat it at home.”

The doctor didn’t say another word. He wrote the prescription as requested plus one for antibiotics (which we didn’t need) and signed off on Tom’s chart. The ER doc evidently hadn’t read the latest guidelines from the Centers of Disease Control regarding the over prescribing of antibiotics or the warnings from the FDA and various other governmental agencies.

Compliments of Google

Compliments of Google

In keeping with the new 2015 Medicare ruling of measuring quality care, this was the first time we had used Conway Regional Health System and had not receive a survey summary on how well our visit had gone. I found that interesting as we’ve received a survey for routine episodes such as lab procedures and a mammogram since that date.

Once again, thank you for reading with me. Do you have an opinion on why the medical establishment continues to ignore the needs of the mentally ill? Are you hopeful the current medical treatment of those with a medical condition and a mental illness will be equalized?

                

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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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92 Responses to MENTAL HEALTH, DISCRIMINATION AND DIAGNOSTIC OVERSHADOWING

  1. Reblogged this on By the Mighty Mumford and commented:
    THIS ISN’T RIGHT…BUT IT IS WIDE-SPREAD!

  2. everything that you have written is correct about the mental health system and the physical health system. But I must say that the VA where I worked generally had a team of MDs who took a comprehensive approach and ordered many lab tests and special; consultations for other diseases besides the mental diseases.

    You have \been living a nightmare but you are a strong woman and I know that you will persevere to get the best for Tom.

    It’s a travesty that med and nursing schools are educating folks with no real caring, lack of empathy and, the inability to pay attention to what the care giver is saying. These folks are severely lacking in observation skills as well.

    I am horrified for I’ve gotten just a taste of nurses that can not listen and who can not follow through with one solitary problem or symptom. Phone calls are not returned and messages are not relayed to the physician. I’ve recently had several incidents and if these continue I’ll find someone to complain too- I hope they’ll listen and take action.

  3. inesephoto says:

    Sheri, what a nightmare you had to go through… You didn’t ask anything beyond those doctors’ competence. They just had to make a little effort. I have a feeling that people with no mental illness also have problems with this particular medical personnel…
    How have you been doing lately? Sorry that Scooter is not well…

    • Hello, Inese. We are hanging in there and Tom’s new pulmonary doctor has stopped his cough. The cause is not good but at least we know the cause and it is being treated. The bottom line is that his esophagus and especially the beginning of the trachea where food enters is literally torn into shreds. Therefore, food goes ever which way when he tries to swallow and that causes a spastic round of coughing that once it starts won’t stop. There’s not really a fix for Tom as his entire area is so shredded, it’s too unstable to insert a stent. Therefore, he’s being treated with medication. The process makes it difficult for him to get enough air into his lungs and thus the constant use of an apparatus to help him breath. We’re hopeful the infusion treatments which begin Thu will help with his pain and allow him to eventually move out of the wheelchair.
      Thanks for asking about us. I do hope you had a wonderful summer and that your coming months will be everything you hope for.
      BTW, I thought of you as I started preparing my wildflower beds. I’m planting several more sq ft to specific plants for the bees and butterflies.

      • inesephoto says:

        Sheri, glad to hear that there is some tiny progress. These little steps will sure lead to improvement. Great that your pulmonary doctor has a plan and knows what he is doing. I wish you both best of luck!
        It is fun, but I too thought of you in a fancy shop at Bryce Canyon National Park. They were selling absolutely gorgeous seed mix of local plants. I was so tempted, but it was $15 just for a few seeds, and it is very unlikely they’d grow in any other area.
        What are you planting?

        • I have collections left over from last year devoted to bees and I plan to spread these across several garden areas. Then, I’m going to experiment with several individual seed series from Wildseed Farms http://www.wildseedfarms.com – they have beautiful and pure seeds in specific areas of gardens. I’m still making some final selections. I’ve always planted in the spring but this year I’m planting in the fall. Do you plant wildflowers or other bee attracting flowers?

          • inesephoto says:

            Thank you for the link! My daughter has a garden, but the bees are mostly attracted by peppermint, that is actually a pest and spreads wildly… It is crawling with bees like no other plant, so it makes sense to plant it where nothing else grows.

            • Yes, this is the first year I trained my peppermint to grow over the 6 ft garden wall in the back and not only did it manage to do that but it kept beautiful pale lavender flowers for 3 months during the spring/early summer. I suggest your daughter also check out 2 more sites. Have her check out http://www.ferry-morse.com. Their seeds are guaranteed to grow and they naturalize beautifully. I have areas that are magnificent where the birds, bees and hummingbirds all live in harmony and the garden area blooms early spring until after we’ve had a couple of hard frost. Here’s one more that cannot be overlooked: http://www.botanicalinterests.com. They have many heirloom varieties and many of their annuals come back year after year.

              • inesephoto says:

                Sheri – these online shops are amazing! Thank you! I am in love with the botanicalinterests.com 🙂
                Your garden is a piece of Eden. What a joy to watch the birds and insects, and the miracle of growing a plant from a seed. I will let you know what we pick up for our seed mix. Thank you again for the links!

                • Inese – I rarely plant anything from a root plant now. The plants from seed do so much better. For me, my flower gardening and nurturing the earth is a big part of my mental health [taking care of me]. I wish I had a way of passing along some of my own harvested seeds along to you from my own gardens this year. My hollyhocks were taller than the house and I have seeds falling out of them everywhere. And, the bees nestle deep inside the bloom and often I don’t know they are even there until I water the stalks and the bee tells me how unhappy they are. I’ve never had hollyhocks like these before. They needed no staking, would sway with the breeze [we rarely have high wind] and people always stopped to comment on their beauty and resilience. I thought you’d love the botanical group. I ran onto them when we lived in DC and again when visiting the Elizabethan Gardens on the outer banks of North Carolina. [Another fascinating garden you can visit on line].

  4. Angie Mc says:

    Sheri, I’m always a bit late to your comments because I need uninterrupted time to read carefully and, well, take it all in. Dave and I can validate everything you are saying. In a nutshell I would say that the medical system freaks out over anything related to mental health. Freaks out? Freaks out! There is so much poor information and fear that inaction happens…or ill-fitted action happens.

    On a tiny note, I first ran across the weird ineptitude of medical providers mixing with mental health. I was a college grad student (had worked in mental health and Dave was getting his PhD in psych) when I became gravely lethargic. All I could do was to study and sleep. It came on out of “nowhere”. When I went to the campus clinic, the first thing they asked was, “How is your marriage?” No questions related to my physical condition. And they wouldn’t leave that theme. They practically accused Dave of violence against me. My marriage was fine but they wouldn’t believe me. When I pointed out that I had just been in the clinic shortly before I became ill to have an MMR vaccine, they said that was a coincidence. It wasn’t until 2 years later that I ran across research that potentially linked Chronic Fatigue (which I suffered through for 1 year) and that particular vaccine. I’ll never know. But I do know that…there was a lot of ineptitude, that I had to find my own answers, and this was just a small situation, not a large one like yours and Tom’s.

    Or when my elderly hospice (I was a volunteer) friend was near death but they wouldn’t give him morphine to put him out of his misery because at one point in his life he had been a drug addict. Dear Lord where is the common sense?

    I just shake my head and have no answers. Other than your love for each other. I’m just so sorry that this is all so hard.

    • Angie – Never fear about showing up late. You know I’m late to every blog I comment on. I have to read and read carefully if I’m going to leave a comment and I won’t leave a comment or even a like if I haven’t read a post.
      It’s amazing to me how so many can jump to inaccurate and foregone conclusions about something that isn’t remotely true. Had that clinic worker reported Dave, even a suspicion, Dave could have ended up with an unforgettable blur on his credentials. He’d have to forget about applying for a position in his chosen career field. What a tragedy that would have been.
      Tom starts infusion therapy this coming Wednesday. We’ve looked carefully at the risks involved [and there are many] but we’ve also looked at our lack of quality of life and Tom wants to go forward.

      • Angie Mc says:

        And the thing that gets me is that they can speculate erroneously about mental health issues without being held accountable, really. It seems like all or nothing thinking errors abound. Either the mental component of a person’s health is everything, or nothing. It’s part of the whole of a person, every person. We’re not just physical creatures and we’re not just mental creatures. While all of this is complicated, can’t we at least start be seeing we are both? I’m praying mightily for you and Tom. Move forward with great confidence in your decision and love ❤️

        • Thank you, Angie. Tom’s infusion therapy begins this week. While we know risks are involved we also know the possibilities of gaining some of our quality of life back.
          You are so right about people seeing mental health either as all or nothing. We both know it’s not that way. It never ceases to amaze me what some in the medical profession believe they can get away with.
          I’ve often wanted to know as much about the personal lives of Tom’s past medical doctors as they ‘thought’ they knew about him. I bet I’d find some interesting bits of information but that would serve no purpose and I decided long ago, I will not expend my energy on negative activities when I might better use the same amount of energy finding someone who is actually interested in helping Tom and others in our situation.

  5. Gallivanta says:

    Have you managed to arrange any VA respite for Tom? I suppose that will vary in quality, too.

    • Hello and thanks so much for reading with me and the comment. Respite has been near the top of my list for some time. The last time I inquired, the only respite we could receive was for an unbonded and unlicensed individual to come sit at the house for 2 hours, 2 times a week for me to run errands, etc. My problem with this is you have no idea who the stranger is that will show up at your door or anything about them. Additionally, the agency [contracted by the VA] knows little about these individuals. There’s no background check! As much as I’d love to get away from the house, I cannot allow a stranger in who could not only steal everything we own plus abuse Tom.
      The good news is that I’ve been asked to be ‘The Voice of Caregivers’ at the 15th Annual VA Mental Health Care Summit on Sept 15. I’m excited about the prospect as I’ll be able to address the lack of support available to caregivers of all categories.
      A legislative bill has been introduced in a congressional committee but it doesn’t have enough strength in it to do us any good. I’ll also be addressing that when congress reconvenes.

      • Gallivanta says:

        I am so pleased you have been invited to the Summit. Wonderful news. Yes, I wondered about the reliability of respite care. It’s just another area where the patient’s needs are a secondary priority, if they are a priority at all.

        • I so agree, I would worry about Tom the entire time I was away from the house. He must use his nebulizer to continue breathing without adding the cough back in. Additionally, he has rather serious experimental medications I report to his psychiatrist on every other day or so. I’ll be on my best behavior for the summit and have research to do and ensure I have everything noted I want to bring to the forefront. Many people will be present that will have the means to make a real difference for Veterans requiring the help of a caregiver and the goal the VA is striving for is to keep it’s chronically ill patients out of nursing homes or other illness centers.
          I so appreciate your support on this. I’ve been talking with Gail about this also.

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  8. rabbiadar says:

    Sheri, did you see this opinion piece in the NYT? “When Bad Doctors Happen to Good Patients” http://www.nytimes.com/2015/08/31/opinion/when-bad-doctors-happen-to-good-patients.html?emc=edit_ty_20150831&nl=opinion&nlid=41679048&_r=0 I was startled by some of the statistics in it. The AMA has a lot to answer for.

  9. I read this and went WOW! That’s terrible! : “According to a review of 4,650 patient profile studies done by the Institute of Psychiatry at King’s College, London from 1990-2000, 0ver 90% of people with a serious mental disorder–including bipolar disorder, major depression, schizophrenia and schizoaffective disorder–end up with a wrong medical diagnosis and are under-treated.”
    Tom is SO lucky to have you!
    And we are SO lucky to have you as the medicare watch person. Although I am not American your situation reaches beyond borders.

    • Carol – Hello and thank you for reading with me and commenting. I’m pleased you stopped in and reemphasized the numbers from King’s College in London. I almost didn’t cite the study as it’s from 1990 to 2000 but because of the time it takes to follow a large number of subjects and then tabulate the complicated outcome, I felt it was an all-important study.
      Tom has had many misdiagnoses over the years but done as damaging as what we experienced from September 2014 through late March 2015. I’ll be blogging more about these events as we go along. I can’t do a straight series of them as my stomach continues to clench the entire time I’m working with them.
      The 7 months left Tom barely able to stand for a moment and then he often falls. He’s in a wheelchair more often than not and this makes a huge difference in caregiving. He can no longer breathe without the use of a nebulizer several times a day and is primarily confined to the house with the exception of doctor’s appointments.
      Before September 2014, I spent much of my energy taking care of Tom and making various appointments, but I also still had enough of my own life that I could make long range plans or even be away from home for the day on an occasional basis. After September 2014, my freedom came to a hault. I try to go to the garden around 5 or so each day but that doesn’t always happen. I never thought my life would revolve around doctor’s appointments.
      We can all make a change but it’s going to take everyone. We have to stand up for what is right. Our countries spend a lot on wars, preparing for Olympics, the arts and so on. It’s time our countries become equally concerned about the health of it’s citizens. Sheri

  10. I was so angry reading this Sheri, what a catalogue of neglect and incompetence – and just sheer callousness of so-called health professionals.

  11. Sheri, thank you for sharing this. You have explained about a very sad and scary situation. But by the Grace of God, you are there to fight for Tom. Hats off to you, my friend. My thoughts and prayers are with you and Tom. I am now sharing this post on my FB. Take care, Jo

    • Jo – Thank you so much for sharing with your friends on FB. We’ve been dealing with this type of treatment since Tom was diagnosed with bipolar disorder in 1987. I’ve reached the point after 20+ years that I write letters to Boards of Directors of Hospitals, CFOs and bean counters within every avenue of medical care when we don’t receive the quality of care and common courtesy deserved. I urge every individual to do the same. Nothing will ever change if we don’t present a unified front. Tom is not a difficult patient. He’s never been violent, never carried weapons that have to be confiscated or been drunk or belligerent. He happens to be on the terrible end of the gene pool which had bipolar disorder in it. This gentle man I love now has every comorbid I can think of and to have the medical profession treat him this way makes me a bit crazy.
      I thank you for reading with me and always for the prayers. Bless you and your family.

  12. lbeth1950 says:

    Sherri, I really feel badly for how Tom has been treated. This is unforgiveable. I hope caregiver sit up and take notice. If he had come through my ER, I would have tried to help.

    • I thought it was interesting that the ER didn’t have a charge nurse on duty the night we were there. I kept asking myself, who’s going to document Tom’s 2 falls for JCAHO. I was mad enough to turn them in myself as I’m still licensed as part of my license with OSHA. I was seeing fire by the time I left there. It’s difficult enough to help keep Tom’s spirits up when he feels so bad and at times like this, my spirits are in the toilet because all I can think about is, “why can’t I help the man I love.”

  13. rabbiadar says:

    Sheri, my heart aches for you and your husband. I know that my son, who is on meds for bipolar disorder, hates to go to see his doctors at Kaiser. And I’ve already whined at you about my own situation – once they see the prescription for anti-depressants, it’s as if I suddenly lose 50 IQ points.

    As for WHY, I have a few ideas. I think most medical professionals have insufficient education around mental illnesses, and that makes it impossible for them to rise above societal prejudices. They’re scared. It doesn’t help that the medications are powerful and have many poorly understood side effects. Psychopharmacologists don’t know how most of these meds actually work – they know a few things, but don’t really understand. So the whole subject is a bit of a black box. Mix that with fear and prejudice, and it’s an ugly mix.

    I am so sorry the two of you had to suffer through such an awful experience.

    • Hi Ruth – As I mentioned to Michelle below, I believe the only way change will ever come about is every time a situation like this, you make your voice heard. This is not acceptable on any level. THEY are in the helping profession and are being compensated for their time. We’ve experienced this behavior since 1987 and it’s not improved. It’s interesting to me that Tom’s not presenting for a psychiatric issue but a medical one instead. Psychiatry has no place in any of these appointments unless the doctor plans to prescribe something and needs to know what meds he’s already on. This however, still does not excuse the attitude and shoddy behavior.
      Stand your ground and receive the best medical care available. When you don’t receive the very best, notify others in a position to make changes. Remember, you pay more for healthcare than any other portion of your budget per a recent study.

  14. Sheri this is so difficult to read. I can only sit here and shake my head and feel my guts wrench at what Tom (and you) go through. This may not help but my husband developed a horrible cough after a heart procedure. It was horrible to listen to. It was not “always” but it was often and was getting worse. It turned out to be one of his medications. I kept insisting he tell the doctor about the cough. We looked up the medicine and found many complaints about the coughing. Sure enough, when that medicine was changed to another, the coughing stopped. I believe the medicine was Lisinopril.

    • Colleen – I had thought about the same thing – it being one of Tom’s medications. Tom’s psychiatrist is our savior on so many fronts and he is front and center on every aspect of Tom’s care. I won’t begin to think about about how we might have coped over the past 9 years without him. We hadn’t actually planned to retire here but it was soon evident that Tom’s psychiatrist was the best we’d ever had the good luck to find and we weren’t leaving him.
      When the psychiatrist admitted Tom in the early 2000s, Tom was on 27 different psych meds plus around 15 comorbid medications. When he was dismissed, he was on 7 or so, with 2 of them being psych and it was almost like having my Tom back. No new medications are added to Tom’s list without his psychiatrist first approving them.
      Tom’s new team of doctors is shaping up to be good, I’m almost afraid to say very good. We have an out-of-this world pulmonary doctor and via testing, etc., we now know Tom’s esophagus is torn up and it does not allow him to take in enough air. . . thus the hard coughing leading to throwing up.
      Now, with the use of a nebulizer, we don’t have the coughing. I can’t begin to tell you what a relief this is. We are more or less restricted to the house due to the terrible heat. I surrender to the garden around 5:00 each day for my away time. If we have to go into the city for a doctor’s appointment, I pop out and start up the car for the air conditioner. The extreme heat index has been a real problem this summer.
      We have other medical issues ahead but at least the coughing matter seems to have been solved for the moment.
      As always, thank you for taking the time to read with me and for commenting. Thankfully, the cause of your husband’s chronic coughing didn’t lead to the amount of damage Tom will have to cope with for the remainder of his life.

      • I’m so sorry Sheri. So even with the nebulizer reducing the cough. it won’t allow the esophagus to heal?

        And we were lucky with my husband’s cough. It was only through us pointing it out that the medicine may be the reason. Or more tests would have been ordered.

        My thoughts are with you both. Your information is so valuable for others to read.

        • The opening to the esophagus is literally shredded. There is a surgical procedure where a stent can be placed but it has a low success rate and comes with a number of other problems. The entire esophagus is damaged due to the length of time the severe cough and vomiting went on. Of course, we now know that’s the reason we’ve had to have so many crowns done for his teeth. The acid ate the enamel off his teeth.
          Have a great day and thanks for your suggestions and encouragement.

  15. raphaela99 says:

    I am so sorry that you were both treated in this manner. Sadly, it occurs all too often. I am sure that there is a link between bipolar and migraines, stomach issues etc. All my love is with you both!

    • This has been the norm for 20+ years. Medical care [other than psychiatric and unfortunately, sometimes there also] medical care is less than stellar. I’m sure the behavior has been going on since the beginning of time, it’s just I’ve only been aware of it since we entered the world of mental health care. I shudder to think what those without insurance must endure.

  16. Sheri, I am so sorry that you have had to go through all of this. It reminds me of some of my recent visits to the ER. The last time I was in having a gallbladder attack, they thought I was making the entire thing up for attention. Two days later, I had was ordered to have my gallbladder removed, when I went to see Brian’s doctor who is now our family physician. He’s the one that I was telling you about that is a Christian and has been a God send to our family. If it wasn’t for him, I probably would have endured another two years of constant chest pain and probably more gallstone attacks. I love how you never leave Tom’s side and how protective you are over him. He has been blessed with the best wife a man could have. Keep fighting Sheri! Your fight isn’t just for you two, but for everyone of us. Hugs from Wisconsin! ~M

    • Michelle – Each of us has to fight for quality health care. We must be actively involved or nothing will ever change. The more individuals who let Board of Directors of every hospital, owners of every ancillary service and other medical encounters know when we receive shoddy service of any kind, then we might see positive change. One person cannot fight alone or nothing will ever change. Tricare needs to know about the shoddy care you received at the ER. They need to know specifics. It’s only when we have a direct impact on the amount of money a medical facility makes do we make a difference.
      Tricare is federal money. The DoD budget this year had a proposed change for Tricare which I was behind but once again it was denied by both the Pentagon and the Joint Chiefs of Staff. The new Tricare would have allowed for the family member (both active duty and retired) to seek medical care on their own and Tricare would be billed the same as it is now. You would not have to worry about in-network providers. That won’t weed out bad providers but it would make it easier for you to pick and choose who you see.

      • Well I do pay extra so that me and the kids can see any doctor that we want. As long as the doctor accepts my insurance, Tricare will cover the visit. My husband however, (the service member), can only see in-network providers. It’s silly if you ask me. I have a co-pay and he doesn’t though. I think it’s worth it so that I can take my girls anywhere I want to. It takes me an hour to get to our current doctor, but it’s worth the drive. I usually report any problems that I have with a doctor. I have been reimbursed for an office visit before, because I was treated so unfairly. And I generally fill our all the surveys too. When I get one at least. It seems I always get them for a good visit and never get them for the bad visits.

        • It’s as if ‘they’ know when they are going to get a bad review. I’m happy to know you report problems with your medical care. We also drive an hour for medical care but as you say, it’s more than worth the extra time on the road. However, now that I have to do all the driving + everything else, it will more than likely necessitate our moving closer to the large city and I don’t want to do that.
          Are you near or on a base where your husband has to use the military for a doctor or is he going to a civilian practitioner within network? I hate to say it but some docs like signing up for exclusively active duty military and then they don’t have to pay their own malpractice insurance – it’s covered by the government and the military member cannot sue anyway. It’s definitely an unjust system.
          I am so glad you and your daughters are with a doctor you trust and better yet, is aligned with your lifestyle.

  17. Elyse says:

    Sheri, everyone deserves a spouse like you.
    I wish I had some ideas for you. Some help. Some ideas. Sadly, this is such a terrible situation.

    A friend of mine has had some luck with alternative treatments for her son’s issues. While I am more of a believer in traditional medicine, some of Rossa’s ideas may be of interest to you: http://rossaforbes.com/

    • Elyse – Thanks so much for dropping by and thanks also for your friend’s link. I’ll definitely have to check it out. I’ve also always leaned toward traditional medicine but we’re willing to try anything at this stage.
      The good news is that one of the new doctors on the team now has Tom’s cough under control. It only took me 20+ years to find this new hero. He’s young and doesn’t care that Tom has a mental health diagnosis. He cares about helping both of us live a better quality of life and comfort for Tom. The terrible cough tore up Tom’s trachea so it’s hard to keep his breathing even and he’s more or less restricted to the house but it’s oh so much better than having him on the bathroom floor all night because of dry heaves.
      Tom has so many comorbids – something like 24 different diagnosis – it makes it difficult to manage all of them – but I like the new team. Now, if we didn’t have the damage caused by the 7 months he was misdiagnosed he might not be in a wheelchair so often.
      I’m ready to fight the VA for some respite care. This is one worn out spouse. We don’t use the VA facilities for anything other than Tom’s fantastic psychiatrist but he’s the best we’ve ever had and we’re not about to leave him. As far as we’re concerned, he is the head of the team.

  18. “Commonly overlooked chronic physical conditions endured by bipolar individuals include: migraines, irritable bowel syndrome and manual heart valve prolapse. No one knows why these diseases are most often connected but ignored.”

    I, too, have been really curious about the links I saw between these disorders over 32 years of practice. I think a clear link has been found between bipolar illness, migraines and IBS in that they have all been found to relate to dysbiosis (an imbalance in intestinal bacteria). When healthy intestinal bacteria are killed (through overuse of antibiotics, GMO foods and herbicides like Roundup), endotoxin producing inflammatory bacteria flourish. They cause the intestinal wall to leak, and the endotoxins can cause inflammation in many other parts of the body – in many cases leading to arthritis, eczema, autism, schizophrenia, depression and bipolar disorder.

    Unfortunately, most of the research into dysbiosis is conducted by nutritionists, naturopaths and GI specialists. There’s a neurologist in the UK who has been researching these links. Unfortunately in the US, psychiatric research is still stuck in the brain – mainly because it’s funded by drug companies marketing psychotropic medications – despite growing evidence that most mental illnesses are probably full body illnesses.

    • I so agree that most mental illnesses are more than likely full body illnesses. Tom and I both have a progressive GI doc and if it weren’t for him being on Tom’s side, Tom would have been dead many times over. I’ve often told the GI doc that he identifies Tom’s medical needs better than his internist. He’s also willing to work hand in hand with Tom’s psychiatrist in order to keep Tom on the minimum number of medications. It’s not every doctor who’s willing to work with a psychiatrist.

  19. willowdot21 says:

    OH! I wish I could help!

  20. Maureen says:

    I am horrified by the lack of help you have received. My daughter is a clinical trainer (psychiatric) and I will run this by her – wondering if this discrimination happens in New Zealand as well…

    • Maureen – The studies I cited are from a global perspective and that’s one of the things that makes them so alarming. I’ve been in this fight [I don’t like to use the term fight but that’s exactly what it is on a daily basis] for well over 20 years now. I’ve seen the results of those without an advocate and it’s a terrible site. Tom has told me many times that he would have been dead long ago if he hadn’t had me to fight for him. Due to the misdiagnoses for 7 months from Sep 2014 through March 2015 he’s now in a wheelchair most of the time. I was positive we had a wrong diagnosis but I had to fire 7 doctors to find one who took the time to honestly look at the problem and take action. This new doctor has never once mentioned Tom’s mental diagnoses. He’s tops in his field and is working hard to find the right solution so that Tom will not be in terrible pain 24/7.
      Last year, Tom went through several months where he passed out all the time. His cardiologist didn’t seem concerned so I made an appointment with a new one and another one after that. I went through a total of 5 cardiologist before I found 1 that referred us to a heart surgeon for a catheterization. The valve called ‘the widow maker’ was 100% blocked. If Tom hadn’t had a replacement, he would have most likely been dead by this time.
      I’ll be anxious to hear what your daughter has to say on this subject.

      • Maureen says:

        I’ll keep you posted

      • Maureen says:

        This is my daughter’s response:
        wow. I can only agree with the comments on discrimination. we see it all the time. often we are the only advocates for our patients with severe co existing disorders and I have seen shocking examples of a lack of basic care

        • Maureen – Thank you and thanks to your daughter for her response. It saddens me that discrimination and lack of care is universal. This tells me more and more misdiagnoses are continuing and more and more individuals with mental disorders/diagnoses are dying far too soon.
          At the time Tom was first diagnosed, his psychiatrist advised me he would not live beyond 55 years and he was 41 at the time. Today he is 68. When he was hospitalized the first time he was on zero medications and had no other health problems. He’d retired from the Army about 18 months before and thought nothing of working a full day and playing 18 holes of golf. He’d still have lots of energy for going out to dinner with friends and whatever else I wanted to do.
          I couldn’t accept the 55 years and then the doctor told me not to worry, our marriage wouldn’t last, that individuals married to someone with bipolar disorder never stayed. Then I was fighting mad. I’m convinced that man had never heard of unconditional love! I later fired him but the doctors didn’t get any better.

          • Maureen says:

            I have to wonder if this is bi-polar or PTSD. I know ex Vietnam vets and many of the struggle with PTSD

            • Maureen – Hello, I’ve had PTSD for 20+ years but through therapy & meds haven’t had a hard time with it in the last 7 years or so. Before then, it could consume me at times. An event occurred in about 2008 when Tom was in a medical hospital for surgery that caused him to have PTSD. We dealt with the monster for at least 2 to 3 years but it hasn’t reared it’s ugly head since. One of Tom’s comments whenever someone is talking about PTSD is that he was in the military for 20 years and never developed PTSD but after he retired, an unexpected and unnecessary medical snobbery incident caused his PTSD. I’ll probably blog about it one day. I have several pages in a journal regarding the incident. It’s yet another case of medical mismanagement.

  21. Dear Sheri,
    Thank you for sharing this. Most people are too intimidated to challenge the medical community. I will never forget an experience I had when I was a contractor doing some biomedical work at Bellevue (in the labor and delivery ward). Some of the docs must have felt comfortable talking to me, as I was very young, and (apparently) were trying to show me the ways of the world. The referred to some of the patients as SHPOS (subhuman piece of shit). Mainly these patients were poorly educated people of minority status. This attitude is not just directed at minorities but, as you so carefully pointed out and documented, also encompasses the mentally ill.

    I have so many diverging thoughts at this moment, I will just pick one to continue with…

    My older brother is obviously mentally ill, dx’ed with ‘profound mental retardation’ and being nonverbal sets him in an obvious class of those unable to care for themselves. He was institutionalized at an early age in a place populated by more than 6,000 patients (in the 1960s). He suffered obvious abuse, always written off as being perpetrated by a fellow patient. Now, he is in a geriatric group home who calls the family whenever he is injured taking him to the ER if they think anything is wrong. Progress.

    People with less obvious problems directly challenge the doctors. For instance, the controversy about the treatment of patients with Lyme disease. There is a camp in the medical community who deny the existence of chronic Lyme; LLDs (Lyme Literate Doctors) who dx and treat the disease clinically (because the tests for Lyme are very imprecise) with long-term antibiotics, and who have achieved positive results for their patients, have been hounded by medical review boards. The conservative medical system is so slow to accept the science that many people suffer.

    Finally (and hopefully more coherently), the medial community (I mean doctors as a class) does not like to be confronted with a problem they cannot solve. They will look for any excuse and even chat with their fellow physicians saying that the person’s problem is ‘supratentorial’, an anatomic term meaning above the tantrum, a membrane at the bottom of the brain… translation: the problem is in the patient’s head.

    I don’t know how diagnostic overshadowing can be challenged on a large scale. You embody way to solve the problem on the small scale: hand-to-hand combat with the physicians as you encounter the ignorance, inaction and wrong actions. A person needs an advocate in the system. Of that there is no doubt. As many have said in the comments above, Tom is so lucky to have you. I hope you are getting some relief for yourself, as it must be so unimaginably draining.

    All the best,

    Jack

    • Jack – Thank you so much for stopping by to read with me and leaving a comment. I remember your early post about your brother and the many challenges you faced. You did a wonderful job of educating within those posts.
      It saddens me that your brother was at the mercy of others while he was institutionalized in the large facility. The small group home sounds so much more satisfactory.
      I continue to battle for appropriate medical care for Tom and I must be alert for every possible advancement. Tom has been so ill and in so much pain for so long, he is no longer in a position to help me with interviewing providers and that type of thing.
      The entire 7 months that Tom was misdiagnosed I was on the hunt for new team members. I hope I have a good team built up once again. It’s difficult at best. It probably won’t be long before I have to start looking for housing for us that requires less upkeep and that’s closer to our medical care. I don’t want to make that move but I’m not sure I have that choice. We’ve lived here longer than I’ve lived anywhere since I left home. Before, I never really minded moving on, especially when it was with my career. I’ve reached that time in my life where I’d like to stay anchored for awhile.
      And, yes, caregiving is an exhausting lifestyle.
      I do hope things are going well for you.

  22. GP Cox says:

    You know how deeply it hurts me to hear of Tom’s neglect by the doctors and their lack of concern for such a wonderful person. I can only hope and pray you’ve discovered the right doctor to bring Tom along. As far as others with mental illness, I just don;t think the doctors want to try and deal with it. They make their money by working in high volume and turn-over — not by spending time with one. At least that’s how I see the doctors that I’ve been around.

    • With the new medical appointment system required by Medicare [and commercial insurance companies have adopted the rule] 15 minutes is about the tops of what we can expect from a provider these days. Medicare wants to grade on the quality of care but how can the care be measured when the doctor is so busy checking off boxes on the electronic record to maximize reimbursements. The 15 minutes starts from the time the doctor walks into your treatment room.
      My doctor made a stop by my cubicle Friday to thank me for providing him such a complete and legible medical history. He made the comment, “No matter how seamless they want to say the system is, if I relied on it, I’d have your name and other identifying information but nothing else. I wish other patients would provide me with details regarding their health history.”

  23. cindy knoke says:

    These are appalling statistics Sheri. Thank you for sharing them. Basically what they describe is a medical delivery system that is prejudiced against patients with mental illness. I would include patients with substance abuse issues in this category. I have seen such discrimination many time in the course of my almost 30 year career. There needs to be intensive examination of this issue and revamping of medical school and nursing education to attempt to remove this ignorance and stigma.

    • Cindy – Yes, you are right. The statistics are appalling. I’ve witnessed this behavior over and over for 20+ years and I’ve had more than enough first hand experience. It seems that it’s okay for something to go wrong with your body but the minute something goes wrong with your brain, well that is your problem and not one that needs to be addressed by the medical profession as a whole.
      After years of looking for the best mental health care for Tom and finally finding it, I had no idea it would be so hard to find a team of medical professionals who could work in tandem with each other to help us keep him comfortable and perhaps keep some of his diseases under control. I don’t think that’s too much to ask for.

  24. shoe1000 says:

    The last thing I want to see, and really dont want you to see, is that I am suffering. No, not physically, but emotionally and what we label as mentally.
    The paradigm of this culture cannot accept that we can be anything but perfect mentally, and in my opinion emotionally imperfect! How many times do we tell children, “When are you going to grow up?”
    As I believe that much of what we suffer with is pyschosomatic, I believe that it is my charge, and the absolute most I can is be present for those I love who suffer.
    Tom is so lucky that he has you. I am not minimizing his trouble. When I was reading this, I wanted to go to that hospital and get that doctor to understand that he had been given a gift, to heal others, and what shirt looked like or how his hair was perfect was irrelevant. I was angry at the indifference WE have grown to accept as normal in this world. I know I am rambling, I apologize for it, but nothing makes me angrier than the open stigmatization of those who the medical profession are supposed to help.
    That is why I will only go to a Doctor when I am suffering so bad that I need the relief that I “think” I am going to get by going there gives me.
    You are a hero and I thank you for being that
    Warmly and yes a little pissed off too
    Jim

    • Jim – Yes, it’s okay to be pissed off. After an experience like the one I wrote about above, I come home and rage and rant for pages in my journal for the indignities we have suffered once again at the hands of so-called medical professionals. I’m so tired of it going on over and over. It doesn’t matter which ER, they are all the same from coast to coast. I once thought this particular ER was different but not so on this specific November night this past November.
      It wasn’t just Tom suffering but I was suffering also. I knew there wasn’t a damn thing I could do about the situation. I wouldn’t have been at the ER had we another choice. Tom’s regular treating doctors that day had left us no other choice. Needless to say, those doctors are no longer part of Tom’s treatment plan. I refuse to have doctors on a team who are non-responsive in a time of crisis.
      This visit to the ER was a purely medical visit. It had nothing to do with Tom’s mental health diagnoses. Matter of fact, as Tom ages, his mental health diagnoses has been stable and we’ve dealt with the ravages of what’s remaining of his body.
      Thanks for stopping by to read and comment. Sheri

  25. ksbeth says:

    this story, like many others in this arena, is so sad and scary. it’s so awful that the physiological treatment ends with the naming of one’s mental health issues. you are so right in feeling that without you as a never ceasing advocate for him, his life would have ended –

  26. Thank God Tom has you. What an awful experience. I’m pretty happy with my health care, but I don’t have mental issues. I have been through a wide range of drug treatments for my migraines and RA. I’ve found the less meds I take, the better I feel.

    Which of course doesn’t work when I really need them. It’s a constant battle.

    • Hi Jacqui – Thanks for stopping in to read with me and leaving a comment. I agree, the fewer the medications, the better I feel. I have more medications for a bad stomach than anything else. I can relate to the recurring migraines. I developed them in 1994 when my head went through the safety glass of a vehicle. Subsequent to that traumatic brain injury (TBI), I sustained 2 additional serious TBIs within the same year. Unfortunately, the more TBIs you have, the more prone you are to future TBIs.
      I’ve learned if I can get in front of a migraine with brand name Maxalt XL, I can usually avoid having it become full blown. It’s a fine dance because if I don’t get in front of the migraine then medication doesn’t help. Of course I can’t use the medication too often or I stand the problem of rebound migraines taking over. It’s a fine dance and migraines are a nasty issue. I’ve tried many different therapies.

  27. mihrank says:

    Many of these issues need consideration when trying to understand the phenomenon of diagnostic
    overshadowing in people with mental illness.

    It cannot be viewed simply as doctors missing symptoms because they are assumed to relate to their psychiatric disorder or because of a doctors lack of knowledge about how a psychiatric condition may present. Similarly, it would be too simplistic to suggest that diagnostic overshadowing is only because of bias or discriminatory attitudes. While it is likely that such reasons might be involved in some cases, a range of other factors related to the
    communication between doctor and patient may also be relevant.

    There is a need for research to better understand these potential contributing factors and how they
    may relate to higher mortality and morbidity in people with mental illness.

    • While I understand and appreciate your comment, I so wish you might have the opportunity not to experience but to shadow some of the experiences Tom and I have gone through during the past 20+ years in obtaining medical care for him. I shudder to think what the outcome might have been had we not had full-pay insurance. Yes, we sacrifice for this insurance but we would sacrifice so much more if we didn’t have it.
      I cannot begin to tell you the number of times a physician has entered into a treatment room where Tom is the patient and the doctor has addressed me first and asked me all the questions. Tom is articulate and can explain what his symptoms are, how long they have been going on, etc. I don’t need a doctor to address me when Tom, the patient, is right in front of them.
      Tom is currently in a wheelchair due to diagnostic overshadowing from September 2014 through March 2015. His pain so acute he’s asleep or praying for sleep 16 out of 24 hours a day. This is not quality of life yet it is the direct result of diagnostic overshadowing when 7 doctors refused to consider they might be wrong during the time period I mentioned above.
      Why did I have to fire 5 cardiologist before I could find 1 that took Tom’s symptoms seriously enough to catheterize his heart only to find he needed a valve replacement immediately. He’d been walking around with what’s called ‘the widow maker.’ It’s only because I knew something had to be wrong or Tom wouldn’t keep passing out all the time that I kept looking for someone to help us that we found out about this problem.
      I ask you, does Tom deserve to die before his contemporaries.
      I also find it ironic that 1 of the doctors who overlooked Tom’s heart condition so casually had thought nothing of bidding several thousand dollars at a silent auction only 2 years before on a piece of Tom’s hand blown gallery glass!

    • shoe1000 says:

      With all due respect, this comment is another example of those who dont know or want to deal with mental health issues. “There is a need for research to better understand these potential contributing factors and how they
      may relate to higher mortality and morbidity in people with mental illness,” with again all due respect is intellectual doublespeak and really does not say a word. When people are suffering, how hard is it to be with them and listen to them and then, (yes I am being sarcastic) to help them! To help them!

  28. I am just blown away for both of you……this type of treatment from the medical community is not acceptable. It truly saddens me that our medical care has deteriorated to theses levels.

    • Kirt – Thank you for reading with me and taking the time to leave a comment. I’m still thinking about your photos of the hot air balloons and each time I do, they cause me to smile.
      The treatment for individuals with a mental health diagnoses is sub-standard across the board and it’s been that way for us since Tom was first hospitalized in 1987. We have indeed seen the good, the bad and the ugly where the medical profession is concerned.
      However, I want to say, we’ve also had some fine doctors that have fought for Tom to have the medical care he needs [these are physicians I’ve ferreted out in the system each time my career has moved us].
      From Sept 2014 through March 2015 Tom was misdiagnosed by 7 physicians and that kept him from being treated for an extremely painful condition. I hope we now have a good team for him. It takes an unbelievable amount of work to keep things running smoothly.
      My hope is that the team of physicians we have for Tom at the present time will continue to be the proper team for years to come.

  29. Wow – my mouth dropped open while reading this journal of Tom’s care — or non-care — in the medical system. I don’t know what to say. This is a horrible and NOT atypical, I’m sure, account of the lack of care in the system for those who have mental AND physical problems. We all know Tom has the best advocate possible – you – but you have come up against brick walls over and over again in the battle to get Tom the help he needs. And because you know this isn’t an isolated incident makes it so much worse. It’s quite obvious that the “squeaky wheel” gets the grease; but at what price?

    • Hi, Patti: I hope you had a great vacation. Thanks, as always, for reading with me. I knew this was a long post but didn’t want to cut it down into two posts so thought I’d take my chances with putting this experience all on the line here.
      We’ve had so many bad outcomes via ER visits and the time from Sep 2014 thru March 2014 while Tom was misdiagnosed, it was positively horrid. It became one nightmare after another. I’m convinced if the ER staff didn’t know Tom had a mental health diagnoses they would treat him completely different.
      However, it’s not just the ER. He would more than likely be dead by now if I hadn’t fired a total of 5 cardiologist in 1 year to get him the proper surgeon he needed for a valve replacement in June of 2015. I don’t need further proof that 90% of individuals with mental illness [and that can include depression, it doesn’t need to be something like bipolar disorder, borderline personality disorder, etc.] and the individual is set aside as if they don’t need care at all. I’ve often wondered what would have happened by now if I hadn’t planned ahead and was cautious. I knew I had to protect our insurance at all cost and am so thankful I did. Thanks for reading with me, Patti.

      • You know, I have a question, Sheri. After reading your posts about Tom’s condition and especially the post today, do you mean that the doctors don’t treat 90% of patients with mental illness in the proper fashion because they think “it’s all in their head”?

        • Patti – I don’t know exactly what’s in the doctor’s head. I’ve often felt as though the doctor believed he/she was treating a sub-standard human and therefore their medical problems didn’t matter or didn’t exist. I understand many individuals with a mental health diagnoses don’t keep their appointments and they often don’t follow their medications as prescribed. Of course this causes doctor’s to believe most mental health diagnosed patients then must be not worth trying to help with their medical issues.
          A perfect example of the situation is that in early September 2014, Tom was admitted to the hospital by an orthopedic surgeon for what the surgeon called cellulitis in Tom’s foot. The doctor couldn’t order an MRI because Tom has a pacemaker. Therefore, he treated the alleged cellulitis with massive doses of antibiotics.
          The doctor released Tom to home after 7 days because as a surgeon, he couldn’t do surgery and he didn’t have definitive proof that Tom had cellulitis. When I picked Tom up from the hospital there were no discharge plan nor follow-up plan. There was however a prescription for 30 days worth of heavy pain medication and 30 days of antibiotics. Tom was still in extreme pain.
          We returned to see the same doctor 1 wk later and nothing had changed. By now Tom had red streaks running up his leg and his entire foot was turning red with bubble like blisters all over it. The doctor said he was surprised the powerful antibiotics hadn’t taken care of the ‘cellulitis’ and wrote additional prescriptions for stronger pain medication and stronger antibiotics.
          This went on for a month before the surgeon said it was the worst case of cellulitis he had seen and he didn’t know what to do about it. He was afraid to open Tom’s foot up for fear it wouldn’t heal due to Tom being a diabetic. And, yes, more pain pills and antibiotics with each return visit.
          After 4 weeks of this I’d had enough. I questioned the surgeon if he was sure Tom had cellulitis and his response was, “If I don’t have the correct answer, no one does.” Needless to say, we did not return for further care from this provider.
          During Oct through March we saw 7 additional doctors and they all agreed with the original doctor. They took no lab work, no x-rays, etc. They looked at who had made the original diagnoses and said that was good enough for them. They agreed with the diagnosis and wrote scripts for more pain pills and antibiotics.
          I would say, this is a perfect example of diagnostic overshadowing. During the time all this was going on, Tom lost all of the skin from the bottom of first his right foot and then his left foot. Imagine trying to walk in this condition.
          I’d had enough. All I could imagine was Tom getting some terrible infection without skin on the bottom of his feet.
          Finally, a doctor that’s been a champion of Tom’s from day 1 about 9 years ago, referred Tom to a rheumatologist and we saw the rheumatologist in early April, 2015. He’s a top-notch doctor and within the first 5 minutes diagnosed Tom with psoriatic arthritis. We were finally on the right track and we’ve worked with this wonderful doctor since then. Tom had respite from the intense pain for about 6 weeks or so and then everything returned in full force. He’s now back in the wheelchair and we are pending his having infusion therapy.
          The 7 doctors that diagnosed Tom incorrectly were practicing diagnostic overshadowing and flat didn’t care if Tom survived or not.
          I’ve come to realize that stigma in the healthcare industry against those with a mental health diagnoses is worse than anywhere else. They can do more damage with their constant indifference than any other segment of society.

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