JACKSONVILLE, FLORIDA -- I was misdiagnosed and abandoned at Mayo Clinic Jacksonville, Florida after three (3) plus years as a patient there. I was denied treatment and follow-up care for two types of cancer after I was finally, correctly diagnosed. I have a family. I am a mother of four. I am a wife. I believe in God and Heaven and I have a lot to live for. I love my life and I want to live to see my youngest children grow up.
Visit www.ShameOnMayo.clinic as well to view my story & find cancer support resources.
I want to spread public awareness about GIST Cancer and Thyroid Cancer, share resources to help other cancer patients & ALL patients. ALL patients have the right to compassionate care, timely diagnosis and financial assistance if needed. Click on the “RESOURCES” Tab for information
My ordeal with illness and Mayo Clinic has been crushing but has not completely crushed me. I feel like a tiny ant under the heel of Goliath. I feel that my life had no value to some at Mayo Clinic and I was thrown away like a piece of garbage. But, I am blessed to have found the best of medical care and the utmost compassion from the doctors and staff at Memorial Sloan Kettering Cancer Center in New York, NY which restored my faith that there are medical professionals who have maintained their humanity and have good hearts. Read “CREDIT WHERE CREDIT IS DUE” below.
I want to warn others about Mayo Jacksonville's administration's pervasive culture of defensiveness, lack of compassion for me and their blatant, harassing collections protocol and denial of care to me. I know other patients that had very similar experiences but they need to speak up for themselves. There is an obvious, prevalent, pompous attitude with the administration and the financial services department. The physicians, whose attempts to provide patient care and treatment, are ruled with an iron fist by Mayo's administration and financial services department. My oncologist, a sarcoma specialist, was forced to abandon me by the administration at Mayo Clinic.
This is my story
I was diagnosed with GIST Sarcoma (gastrointestinal stromal tumor), a rare, orphan cancer that does not respond to traditional chemotherapy nor radiation. I also was diagnosed with the common form of Papillary Thyroid Carcinoma but with the rare, aggressive Columnar Cell Variant. I was repeatedly dismissed and denied tests & care for the thyroid lumps that I asked Mayo to ultrasound and provide an endocrinologist for. I had an ulcerated, bleeding, cancerous tumor that hemorrhaged for five (5) years and nearly killed me a few times. (My hemoglobin went up the day after my GIST tumor was removed & has remained normal & the highest it's ever been). I was under the very nose of a Mayo hematologist and oncologist for more than 3 years and had two undiagnosed serious cancers and he misdiagnosed me. Then he abandoned me and did not see me anymore. I would be seen by a different doctor or a Physician's Asst. each time I went to Mayo. I never knew who I would see and was prescribed IV iron infusions in chemotherapy and they did not really know why I could not keep my blood counts up or really why they were administering infusions or why I was bleeding internally. I was hospitalized in Mayo with active GI bleeding proven by tests in the ER and in hospital and Mayo missed my bleeding tumor every time. The region of bleeding could be seen on a test but Mayo's hospital doctors missed it. I went through countless endoscopies, colonoscopies, camera pill studies, nuclear medicine scans, angiogram with catheter, and many other procedures when a simple CT Scan revealed the tumor in my small intestine. It was right there the whole time. This entire experience was extremely stressful, frightening, humiliating and racked up needless debt. Note I was also hospitalized with hemorrhages in another local hospital several times over two years prior to being a patient at Mayo Clinic. I had a CT Scan there in 2007 and I may have a CT Scan at Mayo in 2009. I had countless types of scans at Mayo.
I was in absolute fear that I would one day die from hemorrhaging. I was in fact advised by my gastroenterologist at Mayo Clinic that “we have to find out where you are bleeding from. You might not make it the next time you hemorrhage. We could lose you”. I had in fact almost died in another hospital prior to being a patient at Mayo Clinic from two separate massive hemorrhages. NOTE: this Mayo gastroenterologist is an excellent, caring, good doctor. He was my only true advocate at Mayo Clinic and he wanted to help me.
He stated “I don't think the way you are being treated here is right; I am going to discuss your case with the board at our next meeting”. This would not be the first time a Mayo physician with good values and a good heart would sit in front of me and apologize to me. After I was diagnosed with GIST Sarcoma, I was assigned to a new sarcoma specialist. He stated he was “sorry for what I had been through and he would be sure I had better care, that he wished he had met me three years prior as he would have suspected and looked for GIST Sarcoma, that I had every symptom of GIST Sarcoma”.
If this isn't telling, I don't know what is.
DAMAGE CONTROL – TERMINATING PATIENTS' CARE & TREATMENT:
MY CARE AT MAYO CLINIC JACKSONVILLE, FL WAS COMPLETELY TERMINATED after I was diagnosed with the two cancers. I believe Mayo Clinic's administration went into damage control and got rid of me to avoid potential legal repercussions. They know mistakes were made and they worked to get rid of me. My own oncologist, a sarcoma specialist, who was newly assigned to me in my last months at Mayo Clinic phoned me himself to “warn me that he had been approached by the administration that they were going to terminate my care due to a lack of mutual trust and my bill”. He stated “I want to be your doctor. I think it is wrong what they are doing. There is not a sarcoma specialist in this region but I will help monitor your CT scans for you if you like and I know a couple of oncologist in the area that I will call and talk with for you. I will ask the administration to reconsider.”
I never heard from my doctor again.
I was heartbroken, terrified and crushed that a healthcare organization would treat a patient like this. I had expected that Mayo Clinic would own their mistakes and ensure that I received better care which my new sarcoma doctor wanted to do. The ethical course of action for Mayo Clinic's administration to have taken for me would have been to APOLOGIZE in addition to financial services working with me to reduce the bill rather than kick me to the curb knowing full well I had an UNTREATED cancer of the thyroid that would require surgery and radiation therapy and possible other therapies afterward. I am still undergoing treatment for the thyroid cancer for which I was denied by Mayo.
SPEAK UP FOR COMPASSIONATE CARE
IF YOU ARE A MAYO PATIENT and experienced similar circumstances know that you have rights as a patient. SPEAK UP! Do not allow Mayo Clinic to bully you. You deserve respect, COMPASSION and proper medical diagnosis and care. If you cannot pay your bill, you have the right to apply for financial assistance. These are things Mayo Clinic did not provide to me.
MAYO CLINIC's PATIENT LIAISONS
I phoned patient liaisons several times while a patient at Mayo Jacksonville. I expressed my fears and concerns that I was not getting better. I shared my humiliating experience with a very rude, abrasive, pompous doctor in their gynecology department who misdiagnosed me and recommended a needless procedure and/or surgery. I also complained about the harassment I experienced with financial services. I also asked to speak with the President William [snip] at Mayo Jacksonville who ignored me. Patient Liaisons did nothing to help me and did not advocate for me in any way that I am aware of. I believe that the Patient Liaisons served only to accumulate information and complaints from me which launched Mayo into defense mode and damage control then terminated my care.
A few weeks ago I requested an appointment at the Mayo Clinic in Minnesota. I filled out a detailed appointment request online, and subsequently had a long discussion over the phone with someone from Mayo Clinic with regards to all of the tests that I'd had done, my medical history, etc. For approximately four years I have struggled with spinal issues that are growing increasingly less manageable. I had surgery towards the end of 2009, and I have felt physically worse and worse since December. The neurosurgeon who performed the surgery is recommending another more invasive spinal surgery. I went to the Mayo Clinic seeking a second opinion, as they are world renowned and I want to make sure that I am comfortable with my treatment plan prior to agreeing to any further surgical intervention.
They told me they would look over my information and contact me back with appointment information. This was over two weeks ago. I called them back and discovered some very disappointing information.
First, they had referred my appointment request to the orthopedic clinic. My condition is spinal, and therefore should have been reviewed by a neurosurgeon, not an orthopedic surgeon.
Second, I was informed that they would not be scheduling me an appointment at the Mayo Clinic. I was advised that I would be receiving a letter, but it would not contain any details as to why I have been "denied" treatment. When I asked why over the phone I was told that the doctor (again an orthopedic doctor, not really the appropriate specialist in my opinion) had a long waiting list. What this doctor's waiting list has to do with whether or not I can receive treatment is beyond me.
The Mayo Clinic does not have any way to file a complaint, request detailed information as to why they would choose not to treat you, or for a potential patient who has been denied a consult to request that the review be done by the appropriate specialty.
It is very disappointing to say the least. I am seeking the opinion of one of the best respected medical groups in the country, and they won't help me. It just makes me absolutely sick that they can have someone look at the most basic of information (not even my medical records!) and decide that I don't deserve to receive treatment.
Just beware of putting too much hope into the Mayo Clinic, at least until they actually decide you are worth the time it takes to schedule an appointment. It is a horribly disappointing feeling to be told that they won't treat you, and that they will not tell you why you can't get the best treatment out there. I was so optimistic that they would at the very least be able to make some recommendations or concur with my neurosurgeon so I could be confident going into this surgery, but they are simply not interested in helping me. I feel like others should be aware that this occurs, so as not to experience the crushing disappointment I have as a result of their policies.
ROCHESTER, MINNESOTA -- I live near Mayo Rochester.. My family has gone there for decades..We have decided any type of VOODOO is better than Mayo clinic.. Heres part of the story.
I had a heart attack 2 1/2 years ago..We went to the emergency room at St. Mary's..During my 4 days there I got little or no sleep..( later hospitalization by other family members were the same !) The attendants stood outside my room discussing Basketball Final 4 half the night. I closed my door. They duct taped it open . Then continued their sports talk. My cardiologist said ( sleep is over rated" and " You can sleep when you get home:.. Nice Fella! Food was restricted.. The medications prescribed were a nightmare in themselves. I did not tolerate 2 of the Golden Four medications. PROCOR gave me horrible flu symptoms. Lopressor later caused me to get frostbite since it reduces blood flow to hands and feet.. The arrogant doc refused to moderate the meds. I later fired him and went to a less arrogant clinic.
My wife required surgery to correct a colon problem.. She reacts very badly to Morphine and related pain killers. We met with 2 docs on the day of the surgery AND she was wearing the orange drug reaction band. They gave her a Morphine family drug anyway.. She was in ICU for 2 days..They gave no reason for it.. Our family doc found out why a year later.
Managed care.. I went to Mother Mayo for 5 years for severe back pain ( 2 canes to walk were needed)..They gave me an epidural 3-4 times a year for the pain. The pain got worse. They refused any other treatment.. I went to a great Doc in Edina MN, had surgery and was almost pain free 4 months later.. I wasted 5 years of my life with Mayo. Inactivity contributed to the heart attack.
In conclusion...Some departments at Mayo are Good.. Others should be avoided.
ROCHESTER, MINNESOTA -- I went to Mayo Clinic in Rochester Mn., it took over 6 months to get an appointment. I traveled over 900 miles one way. I had gone numb on my left side, all doctors said was they could not rule out a stroke or MS.
When I arrived for my appointment to check in, the lady took my paper that took and hour to fill out, she pulled the medicine list and threw the rest in the garbage. Then I went in to see the doctor, the first words out of his mouth was 'you will probably not know any more than you did before coming here.' He checked my reflexes and looked out my old(5 month) MRI. He sent me for another MRI and drew blood. Came back in to his office after the MRI and said he did not know what my problem is. He told me to go home and keep doing what I have been doing. He previously said that the medicine I was taken was not what he gives to his patients, but would not change my medicine to what he uses to see if it would help me. This man done absolutely nothing for me but waste my time. They do not try to find out what is wrong with you. He knew what he was going to do for me before I arrived in Mn. He could have given me the option if I wanted to travel that far for another MRI. There's no telling what I have been charged. Don't be fooled by what others say about Mayo, they do not try to find out your problem, They actually do less than other doctors. It's all a scam.
The Mayo Clinic in Jacksonville, FL puts the doctors first. That means that you can not ever leave a message outside the hours of 8am to 5pm ET. That means that their offices will not return calls or call you even after they tell you that they will. That means that they can choose their patients/customers at their whim without having to provide an explanation; which, by the way is considered discrimination if any other business did that to their customers. The staffs do not communicate well with their doctors or other doctors' staffs. How do I know this? I am ready to jump off a bridge out of frustration with the treatment my family received. Not just that, the attitude is clearly one of "The whole world must revolve around the doctor" even though they SAY the patient comes first, our experience was that the patient comes last. I sincerely believe that they have endangered my family member's life by their actions and delays. They all need classes in Customer Care!!! They have clearly been taught to read from legal manuals without regard or empathy for a patient, not doing what is considered morally right by any mainstream population or even the Wikipedia definition of humanitarianism. Their attitude came across in actions and speech such that they are only in it for profit, profit, profit! I wouldn't take my dog there, unless, of course, he needs to pee. It appears to me that they are living off of their reputation and a PR department that works hard to create an image that is just that, an IMAGE. I would have more confidence in an engineering PhD and a good butcher who studied a medical book, than I do in these folks. They operate like a poorly run factory, as far as I could tell. If they would have returned our calls, taken messages, kept appointments or explained things to us, maybe I wouldn't be typing this. By the way, we aren't the types of people who would ever sue since there are more inportant things in life, but the truth must be known. We will go elsewhere. Good Luck!
ROCHESTER, MINNESOTA -- My Daughter, had been under the care of two specialist at Mayo Clinic Rochester for years. We took her to the ER, when we were not able to contact her doctor by telephone.
The ER Doctor, refused to call her specialist, and wanted to just admit her. She refused to be admitted, this angered the doctor, and when I advocated, that she had a right to choose, where, and by who, she received her care, the very angry doctor filed, an unlawful civil treatment hold, and a false vulnerable adult report. Only because she was born with Down Syndrome, was she forced to endure such, calloused, merciless discrimination.
Any doctor that would, practice such negligent abuse of power and " I am God" Arrogance, is a very disturbed person, yet this behavior is allowed by Administration.
By the time they figured out she, had the same rights as any other human being, that she had a right to choose, and a disability has not one thing to do with a person saying no, she had already suffered fatal treatment by doctors not familiar with her.
One thousand people die every day from medical error. Just in the United States.
United States Senate is now addressing the problem.
Thank you for this web site, this will save lives.
ROCHESTER, MINNESOTA -- My mom went in on Tuesday 6/24/2014, they discharged her the next evening - in the morning she was having chest pain and black stool - she's been in the Methodist hospital since - and they still haven't figured out where the internal bleeding is coming from!!!!!!!!!!!! I spoke with her nurse today (Sunday 6/29/14) and he said they would be doing another scan tomorrow - but she isn't considered "high-risk" so it will be sometime in the evening - WTF?!?!?!? If they don't do something tomorrow, I will be going down there.....trust me, they will give her some aftercare or I will be in jail!! Mayo is good at surgery - but after that you're on your own......
SCOTTSDALE, ARIZONA -- We went to the Mayo in Arizona to make sure my husband really had Parkinson's disease. The first Dr. we saw confirmed the diagnosis. He then started questioning my husband about his swallowing, sleep habits etc. next thing we know we have a weeks worth of Dr. Appointments seeing all kinds of specialist. It is a scam!!! they get you there then they play on your vulnerabilities. They told us our insurance would cover all visits!!! Long story short, he went to all kinds of appts. that we not necessary.. and we got a bill for 13,000 dollars. I am sure we are not the only ones they do this to. I tried to argue the charges. They won't even discuss it. You need to ask why you need to see the next Dr. Question and learn to say NO!! Your physician at home can do everything they do there. They did nothing to help my husband, except add stress to his life.
SCOTTSDALE, ARIZONA -- I have never attended the Mayo Clinic. Despite this I began receiving insistent phone calls from them. When I answer they hangup. When I've tried calling the number back an automated message apologizes and informs me that the number is a general callback number and as such there is no way of determining where or who the call came from. These calls come between 5 and 9am usually. When I called the actaul listed Mayo Clinic I was told the office doesn't open until 8am, despite the fact I was actaully talking to a person, not an automated system, and therefor it was impossible. The calls still continued and have yet to cease.
To me this is very unprofessional, demonstrating simple incompetence and a breakdown in their operating procedure.
ROCHESTER, MINNESOTA -- I am writing this complaint because I think Mayo Clinic is charging an insanely high amount for an upper endoscopy.
I just got my bill from them and when all is said and done, before insurance, they are charging over $3000!!!!!!!! This is almost double the national average!!! No wonder so many people are fed up with the medical system. There's no possible way this cost is justifiable, other than to line the pockets of the higher-ups and doctors there. My advice to anyone considering this procedure... GO SOMEWHERE ELSE!! It's a very simple procedure that can be done almost anywhere and you don't need to cater to Mayo pomp and exaggerated costs.