Advocating Tips When Mistreated by the Medical Field

Advocating Tips When Mistreated by the Medical Field

By Ellen Lenox Smith.

Last September, I would confront the first of nine life threatening events that led to my 24th surgery, a second neck fusion surgery. In January, 2018 when the first event happened, I eventually became catatonic and was taken to the hospital. My oldest son and daughter in law stayed with me as efforts were made to contact my husband. Upon arriving at the hospital, my blood pressure was down to 80/38 and medical staff could not get me to respond. They transferred me to a stretcher from the rescue chair and failed to listen to my advocates description of my condition, which resulted in the dislocation of my hip, the one joint I had never had a problem with.  To this day, that joint remains an issue. I must always be cautious with any motion involving this joint due to permanent damage done by the medical team responsible for treating me on that fateful day. The ER doctor ordered an immediate IV of fluids, around 9AM.  That IV was not started until my formal admission to a hospital room around by 7PM. Having failed to follow the most basic medical procedure relative to low blood pressure and the bodies need for fluid, I would remain relatively unresponsive for many hours. During all those hours of horror, very little was done to try to help me and at one point, my son was told by a nurse that it appeared I was gone. And for the two nights, three days admitted, no one ever listened to me explaining meal after meal that due to Ehlers-Danlos Syndrome, I had a limited diet and could not eat items on any tray I received.  I needed to get discharged and home to safety.

Ellen Lenox Smith

I am sharing these details, so you know how upsetting this incident was and understand how angry, humiliated and distraught my family and I were. However, when you read how I handled this situation, you may not agree with the angle I used but please at least read this before you judge my method and understand that my approach would, upon request to the hospital administration, lead to me providing an in-service to the ER doctors and nurses.

I needed to channel my emotions of outrage and anger. I would not simply let these emotions fester and affect me negatively. My hope was that by educating hospital staff, future EDS patients might avoid the mistreatment I had experienced. My experience has taught me that sometimes method is as important as message. I have found that how one comes across can make a huge difference as to whether you get a response and respect for your message. Expressing one’s anger and disgust only, without promoting substantive solutions, has not been a successful way for me to be given the opportunities to be listened to.

So, what path did I take

  • I remembered our former RI Senate President had changed her career to be the new head of the hospital association. So, I called her new office to get her contact email but instead, she picked up the phone. Although she was not the person in this circumstance to help me be heard, she suggested, hearing the story, that I write a letter to her and she would send it to the appropriate person at the hospital.
  • I composed that letter, sharing even more details than I shared with you, and made my focus two things:
    • 1.   That this should never happen to someone else
    • 2.   That I was offering to provide an in-service to help educate and prevent future damage to others, sharing that I have done various presentations such as those for Blue Cross, EDS Society, Brown Medical School, testifying for the FDA, and for our local government. And if I could not be that right person they would like to do this, I would help them find a good spokesperson to educate them about my condition.
  • Instead of only expressing anger and disgust, I tried to keep my words civil and written in a way that they would take the time to finish reading the letter and think about the extent of the mistakes made by their staff. If you think about it, when someone approaches you and is very angry, even when totally justified like I was, and they go on and on about it, you tend to want to pull away for that stress gets absorbed into you. You may not agree with this process, but I find it is more effective to keep your cool, share the truth but keep it all in a tone that may lead to moving forward together instead of totally turning them off.
  • Before I knew it, the former Senate President, now hospital president, did send my letter off to the hospital to the “Services Excellence Specialist” spokesperson. I received numerous phone calls from her, a letter of apology along with discussion about setting up a date to do the in-service.
  • That in-service did happen the month before my neck fusion, last December. Since that time, this same person has been the main go-to person to connect with and she continues to work with those coming into the hospital with this condition. Those that have submitted complaints during their stay now have her on their side helping to resolve the issues that arise.
  • If you find that connecting with the right person to listen to your issues is not working, consider contacting your local state representative and/or senator and if that doesn’t help, then pick up the phone and call your legislator.  Although they may be in DC, they have a full staff in your state that can listen and act to help you change these damaging medical practices and policies for the future.

Remember – take a stand when you are wronged:

  • Make the call or write that letter – but try to express your concerns in a proper tone they will want to respond to
  • Include that you look forward to their response
  • Include ways to educate them to help prevent this happening to another person
  • Consider emailing or calling if you hear nothing back to be sure they received your message to them
  • And if you get no response after a good week, call their office and ask where you stand
  • If that does get no response still, then consider first contacting your local state senator and/or representative
  • If that doesn’t get results, then contact your federal Senators/Representatives

None of us want to be mistreated. So, let’s work hard to take all that horror and emotion and turn our unfortunate, inappropriate experiences and treatment around, in hopes of helping the next person and ourselves in the future. Try hard to learn to speak up, be appropriate respectful, and tactful when you express your concerns and offer any options as to how you might help educate others to try in eliminate the horrors that happen all too often. To this day, I am still afraid to be sent to the hospital for an emergency due to the horrible experiences I have had living with a condition often unfamiliar to many in the medical profession. Recently, when I desperately needed IV fluids, I didn’t allow myself to be taken to the hospital. I was too afraid of being hurt again! I did call that person I have been connected to ask what I could do to overcome this mistrust and concern of being mistreated again. She looked my name up in the computer and what popped up immediately that goes out to all the hospitals in my state is a warning: Handle with Care with transfers and touching – Ehlers-Danlos Syndrome. Let’s hope that this warning in my chart now alerts the next people dealing with me to ask and learn what they don’t understand.

May Life Be Kind to You!

Ellen Lenox Smith

Author of: It Hurts Like Hell!: I Live With Pain– And Have a Good Life, Anyway, and My Life as a Service Dog!

The information in this column should not be considered as professional medical advice, diagnosis or treatment. It is for informational purposes only and represents the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of National Pain Report.

Ellen Lenox Smith and her husband Stuart live in Rhode Island. They are co-directors for medical cannabis advocacy for the U.S. Pain Foundation, along with Ellen on the board and they both also serve as board members for the Rhode Island Patient Advocacy Coalition. For more information about medical cannabis visit their website. https://ellenandstuartsmith.squarespace.com/

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Authored by: Ellen Lenox Smith

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Mavis Johnson

This is way beyond writing a letter or calling your representative. Chances are they took money form the very provider who wronged you. Even the so called Advocacy Groups are advocating for the Industry not the patient. There is enough propaganda in our local media, paid for by the industry to counter any atrocity the healthcare industry can provide. The only issue they even care about are the ones that are provable to an attorney, and they make damn sure the records are not available.

They have a clever story or counter narrative for everything, they can even blame a quadriplegic, of their surgical misadventure. We are in Post Fact America people, these clever industry insiders paid off any one, that could have intervened. The providers spend more time learning to demean, dissemble and threaten patients who endure adverse events. Up is down, and everything is sideways as long as their is a buck to be made. They re-framed pain as addiction for a reason.

Sam Damm

Sometimes the neglect experienced is not being heard from a new doctor, being ignored while a doctors dictates his physicians notes, while you are sitting in the room, belittlingand so on. What can we do, besides speak to the office manager?

Jason Cooktoms

Around 2008 I began to have vertigo. Then the night headaches came. This happened over a three year period. The symptoms slowly got stronger. In 2011 I was moving electrical on a factory shut down. They made mufflers. I was working in the ceiling and began to have just a little double vison. That night I went to the ER. I still give that ER doctor the benefit of doubt because I was distracted with pain I still have trouble explaining . He discharged me, said it’s bronchitis.The insulation from the mufflers caused me congestion. Ear, nose, and throat doctor found the tumor in brain a few days later. Choosing another hospital, with my cat scan in hand, I went straight to the ICU. Malignant tumor removed and radiation, I’m here in spite of what I pray wasn’t their best effort.

Susan Simpson

Bipartisan Opiate crisis response bill – should be called a diversion tactic as the DEA calls it! I call it gov’t corruption! It doesn’t help pain patients nor does it help addicts rather would accomplish a little of what they wanted – take the blame off DEA, FDA for the opiate crisis and had many pain patients angry tweeting how it’s all the addicts fault & how this is bill helps them. I am a stage 4 cancer patient who was cold turkey pulled off my opiates, migraine meds etc in mid 2015! Tumors visible in images etc. At that time I fought alone! No-one cared! Except those who knew me! Especially as a recovering addict which in Nov 10 yrs clean! At the time I had 7 yrs clean – doesn’t matter no-one with that type pain deserves to suffer! Why we are being took off or have been took off is due to the DEA, the CDC changing guidelines, FDA and their big pharma money maker – I’ve been calling it – the new generation opiates synthetics – it makes me sick it is Suboxone! It is a genius short term detox medication! Problem it’s their $$ maker – tried putting me on it for cancer pain! The FDA has NOT approved it for pain, it’s forced on people for pain telling people it’s not addictive, it is when taken long term! It is meant for 7-9 day use! A SECTION OF THE BILL: The bill also permanently allows nurse practitioners and physician assistants to prescribe buprenorphine aka SUBOXONE, an anti-addiction medication that requires a special license and extra training. The bill further aims to increase access to the medication by allowing nurse anesthetists, nurse midwives and clinical nurse specialists to prescribe buprenorphine for the next 5 yrs. 1st it is no anti-addiction medication it’s a short term detox medication & true recovery involves TREATMENT which is not only medication! We must focus on whose to truly blame THE DEA! They talk about cutting pain pills? Note *Indivior Wins Bid To Block Sales Of Suboxone Generic – 7/2018? Avail since 2002!

Don’t the CDC and govermeant agency employed have and have family members who are acute and chronic pain patients? That have too have life saving pain medicine like all chronic pain patients do!! Why do they want to torture all chronic pain patients and deny us our lifesaving pain medicine?pushing million to suicide!! Its wrong and evil and must be stopped immediately!! Compassion not natzi torture is right! In Christ we trust!!

Heather

Very helpful article. A lot to think about! I have once used this “educational approach” by letter but did not return to the provider. They had withheld my diagnosis from me (fibromyalgia) and instead tried to force me onto an anti-depressant because I was depressed. I had also asked for a sleep study (and years later learned that I also had sleep apnea when I finally was referred to for a sleep study).

I wrote a letter as an “update” to let the physician know that I was doing well now that I had a diagnosis and treatment. I said that I was fearful that I’d be unable to continue to work, but the treatment has greatly improved my quality of life (true!).

I had been absolutely furious and this doctor had caused incredible harm because her tone with me was mocking and belligerent – highly unprofessional. I’ll never set foot in her office but I hope she doesn’t inflict upon someone else what she did to me. I can only hope.

mist

bipartisan opioids crisis response bill, Congress is going to be in talks contact reps ASAP Countable web site will keep us informed we need policy in place to protect all people who are in pain.Not more restrictions
Now is the time as the American people are distracted by other new the hearings other things can slip by

Sharon

I have been a chronic pain sufferer for over 20 years. Long story but I survived after a 10 month hospital stay. I had a pain pump placed in me with a catheter attached to my spine. It pumped a controlled amount of morphine for 13 years and the pump started coming out of my body. They removed it and put me on oral maintenance meds. It took months before I found one where I could function. On Memorial Day weekend 2017 I was in uncontrollable pain and went to the ER hoping that a shot would help. It did not. They did a CT scan because of my chronic conditions. The shot did not help!!! The Dr came in and said there’s nothing wrong so I’m going to discharge you. YOU’RE DISMISSED is what I heard. I asked him what do I do about the pain? He sat down and said you’re on so much opiates already and you need to find something non narcotic to get off these opiates. I am a recovering alcoholic and have been for 23 years. I became very active in the recovery program and mental health for many years and dealing with people with addiction problems and even seeing death as the result. Another issue and that’s not me. I explained that I’m 68 years old and I know all about it. As I was getting dressed he noticed a red spot on my back and asked why I had it. I said, I have psoriasis but I don’t know about now. He dismissed it too. I wasted a day in severe pain for a lecture?? I was angry! I had a family member take a picture of my red spot and researched it myself the next day. I went to my Dr and told him that I believe I have shingles. I was right. I was finally treated. The pain was unbearable. I received a bill from the hospital for over $7,000.00. I filed a complaint but never heard a word about it. I still received statements though.

Kirsten Klang

My fiance’s doctor doesn’t read. he has been ignoring my fiance’s problems so we have decided to see another doctor but then suddenly they were concerned. Ha. Stila waste of time because they said they didn’t have the MRI that they needed. I sent the full MRI the MRI report and even drew a picture based on the human spine that highlighted all the back problems in color, with very simple descriptions. it’s been over three days and we haven’t heard back from him yet. Meanwhile my fiance has had no pain meds for a stenosis in his lower back, a fissure in the disc and a bone spur. None of the doctors he’s had ever suggested that he have a cortisone shot in the lower spine probably because of the stenosis. However the last doctor decided to try it anyway. He gave my fiance a spinal headache. then when my fiance complained, they wrote a small prescription for pain meds. He was still having problems after that so he went into the ER. They did a blood patch with NO Anaesthetic!! Something went wrong and ever since he’s had a headache. Because I had to jump around from Doctor to doctor to try to find him pain meds because they hadn’t written down that he had a primary, they have him labeled as a seeker. I’m trying to find a lawyer and it’s not going well

Craig Carroll

It’s really sad to experience truly ugly treatments from hospitals drs and insurance companies. I’ve watched my g/f experience terrible treatment from emergency room drs who thought it was their duty to bully and verbally abuse her in the name of upholding the law. One threatened to arrest her for dr. Shopping. I asked him quietly if he was an officer of the court. The patient in question was later diagnosed with 2 ruptured disks and had a double spinal fusion but the mistreatment didn’t end there. The surgeon way under prescribed pain medication and expected her to be pain free after only 15 days luckily we had already gotten an appointment with a pain clinic and are at least getting the neccessary medication for her and and have been informed that her pain may not end for a year or more until the nerves are healed. There’s more to the story this part is just the tip of the iceberg

Katie Olmstead

I whole heartedly agree with everything you said! I had a milder incident in the ER that I thought was poorly handled. I wrote immediately to the president of the hospital. He got in touch and met with me, including the head of the ER. They invited me to do an in-service with the ER staff, which I did. Half the people there were in tears hearing what I had gone through, and how simply my suffering could have been averted.
Currently, I am struggling with MassHealth’s denial of a pain med. This is not coming from my doctor; he is fuming on my behalf. For the first time in my life, I have called upon my congressperson and maybe this will get solved. Maybe.
Thank you for the work you do to inform others. I will forward this to two friend with EDS.

KAREN L BEGEAL

what an awesome way to handle a stressful situation.

ruththella white

i recently wrote about the abuse by medical professionals. One currently serves on the board that is attempting to end opioid medications for chronic pain patients on medicaid and refused to treat my severe muscle spasms. I also followed up starting with the third incident with calls and letters to patient advocates and to the hospitals in question. It did not matter. I was ignored. Without treatment it is very difficult to continue to pursue incidents of abuse by medical professionals. They failed to diagnose and treat; the pituitary tumor, pituitary apoplexy and panhypopituitary; the genetic heart disorder, HOCM; the Arthritis, DISH; a blood clot extending from the veins near my heart, left arm and neck; and now MS. All which left me totally disabled. In spite of abnormal test results it took over 20 years to diagnose my illnesses and 40 years to diagnosis the heart disorder. Every disorder was either marginalized after diagnosis. Instead they said I liked to be in hospitals. They said I was mentally ill and just depressed. Although I had severe inoperable arthritis in my joints and spine and used a wheelchair prescribed by one of the top orthopedic surgeons in my state, they made me get out of my powerchair and walk. When I tried to leave the state they contacted John Hopkins and told them I was mentally ill. I never authorized the release of any mental health records. Hopkins rheumatology refused to see me, stating they had very ill patients they needed to see. My father was never given pain medication for pancreatic cancer. For two years, my mother was not told she had MS. I had to deliver the diagnosis. My grandma’s heart pain was ignored and wasn’t believed when she had chest pains. She died from SCD. I came very close to dying from the same disorder. At home doctors are still trying to prove that my documented medical disorders do not exist. Abnormal test results are labeled as normal and ignored. Delay in treating the MS has cost me my vision

Donna

Really great article. Thanks for your wisdom. The single best thing you said was keep the emotion out of it. As a chronic pain patient this is really helpful. The er sent my 86 year old mother home with me with 11 broken bones saying nothing was wrong. They almost killed her.

Terry

Part two of Terry’s comment.
The doctor got away with major negligence in my opinion. Imagine having NO sex life for the rest of your life! That’s one time. Here’s another one. I had my right knee replaced, I was going through physical therapy and the pain was absolutely unbarable, and I have a high pain tolerance. I wasn’t making any progress bending my leg after four months. The surgeon said I was being a baby and if I didn’t start having progress he was going to put me in the hospital and bend it for me, and he said, you don’t know what pain is, you’re going to be in a lot of pain if I force him to do that. I decided to go to a different doctor for a second opinion. The x-ray showed that the new knee was put in cockeyed and the new doctor wondered how I could possibly stand that much pain. I had him fix it. He bored longer holes in my bones, 8 inches deep, which is what you have to do with a total revision. When I woke up from anesthesia I immediately could stand on it and also bend more than I could after four months with the original knee. I filed a complaint, again, no negligence. In therapy they bent my leg too far, too fast and I got a quad tendon rupture, a muscle and a tendon became detached from the bone and coiled up in my leg, now that was real pain. So more surgery, 8 weeks in a cast, and oh btw more physical therapy.I Filed a complaint, no negligence once again. There are more instances where doctors where negligent during surgery on me but all I did was allow them to go back in and fix it, I was done filing complaints with the medical board. They are a useless organization in my opinion. I’ve had 19 surgeries and I would say at least seven times the doctor has committed errors causing me immense pain. I am still on the mend from an infection from the last surgery. They left a suture inside of me and it got infected. I filed no complaint. I learned I am powerless against the medical community. The same goes with pain meds. It’s horrible!!! God bless.

Kat Koe

What happened is horrible and never should of happened to you or any patient. The shining light to come out of the experience is the hospital spokesperson and medical personnel are, hopefully more aware of EDS and will treat folks more professionally and respectfully. Many people let their emotions get the better of them, however as you stated you didn’t let that happen, you needed to “channel my emotions of outrage and anger. I would not simply let these emotions fester and affect me negatively.” Any of us that have been wronged, and that includes the majority of us, will find the steps you outlined to be very useful. Thank you for sharing you personnel story with us.

Terry

I can think of at least 5 times that I have been mistreated by a doctor. One of the biggest complaints I had was from surgery for an enlarged prostate. Here’s the basics: I had the surgery, which went well, and as a result I had a Foley catheter inserted temporarily, appropriate for the procedure. The doctor told me to call him two days after surgery, which I did. If you’re not familiar with a Foley catheter, it’s a little hose inserted through the penis, into the bladder, it has an inflatable ball on it which they fill with water to keep the catheter from coming out. The doctor, to my surprise, told me on the phone, how to remove it myself, at home. You first take a syringe and draw the water out of the ball, then you just pull the catheter out of the end of the penis. I drew out the water and pulled it to remove it, it would not come out, I called and spoke directly to the doctor, he said, “pull harder”, I tried but to no avail. You could tell he was getting annoyed and then with a irritated tone in his voice he said, and I quote, “you’re being a bit of a baby, just pull it harder and it will come out, guaranteed, and call me when you get it out”. So I thought maybe I was being a baby, so I pulled it really hard, it did come out but it was one of the worst pains I’d ever felt, there was blood EVERYWHERE, now I know what people mean when they say they were traumatized. The ball with the water in it did NOT deflate, it had the diameter of a quarter and that’s what I pulled out through my little pee hole. He also never told me that 90% of men who have this surgery end up with retrograde ejaculations, the semen goes into the bladder, not out. From the undeflated catheter and retro ejaculations my sex life was ruined at 40 years old. Pulling the catheter out caused nerve damage and now I can’t feel anything, so sex is impossible. And the retrograde ejaculations feels like nothing. I filed a complaint with the medical board, they found no wrong doing. Continued…

Debbie Nickels Heck, MD

I had a similar experience but fortunately only experienced HUMILIATION, not physical trauma. My FEAR was someone ELSE COULD have been in true physical danger from not being heard. I had major surgery which was a wonderful experience. The anesthesiologist played my favorite music before I fell asleep. HOWEVER, when brought to post-op, NOBODY TOLD ME WHERE I WAS ONCE I WAS AWAKE! I thought I was having trouble falling asleep for surgery & began APOLOGIZING for that! NOBODY CORRECTED ME & said “Surgery is over. All went well. You’re in recovery.” Nobody comforted me. I had to pee & asked if they were going to put a catheter in me in surgery. An astute LISTENER would have realized I thought I’d NOT YET HAD SURGERY, but no. They still allowed me to believe I hadn’t had surgery. They gave me a bedpan. My glasses were in a bag above my pillow. They could’ve put them on me so I could SEE where I was but didn’t. They asked me about my pain level which I thought was bizaare BEFORE surgery. I’M AN MD. I KNOW WHAT THE PROCEDURES ARE PRE & POST-OP! Nothing made sense. I was taken to my room where my husband was
waiting. I STILL was confused. He said he needed something back at the hotel. It was ONLY WHEN I asked him WHY he was going to leave me BEFORE SURGERY he realized NOBODY had TOLD me it was OVER! I was FURIOUS! I felt I’d been the subject of a cruel joke & horribly humiliated. I recalled EVERYTHING I’d said & how NOBODY realized I just needed to be TOLD WHERE I WAS & ALL WAS WELL! I was MORE angry thinking “What if I’d been a patient in TROUBLE & those so-called nurses ignored real needs?” I was angry I was denied the JOY of knowing surgery was successful & should have been TOLD! WORSE, WHAT COULD HAPPEN TO OTHERS LATER WITH PROBLEMS WHO ALSO WON’T BE HEARD? Yes, I voiced my concerns.