Are difficult patient and 'black lists' real?

[nogutsnoglory]

I'm not one to believe in conspiracy theories but I do wonder about patient advocacy groups that argue that some patients construed as difficult are labeled as such on medical records or put on some sort of black list. There are patients who complain nobody will see them. Remember the Seinfeld episode where Elaine calls a vet because no doctor will deal with her lol.

I wonder if there is something to this, our health info is shared digitally and I think doctors can find out if you sued another doctor for medical malpractice.

Curious about people's thoughts on this. I always feel like I must not complain because I don't want to be 'difficult' since I can't afford not to get proper care.

 

[valleysangel92]

Hmm this is an interesting thought.

I don't know about black lists, but I have heard that in the UK, if you self discharge and then end up back in hospital for the same issue it can be difficult to get help the second time.

One time when I was in I was on the verge of self discharging because I wasn't getting the care I felt I needed. The nurses were being brilliant, but the doctor I was supposed to be seeing didn't show and it was left up to gynea surgeons to try and manage me. I was told I wouldn't be discharged until I was seen by a gi, and I wasn't being allowed to eat or drink. So we contemplated self discharge. The nurse looking after me said I'd be allowed to and I would be allowed back if I needed, but she did advise me that it can make it harder to get through the A+E system.

I also know that when we have a disagreement with a doctor it can be written in the consultantation notes at the GP, so if a doctor takes a disliking to you that could make things harder in future, as other doctors would see what they have written and could make a judgement.

For example, my surgeon wrote ' thankyou for referring this lovely young lady ' but I've had one doctor write that there was 'no chance of a recurrence of any problem, despite some complaints of mild pain ' which caused chaos and almost resulted in me not getting treatment.

So while I don't know about blacklists as such, I do think that the things that they write in our notes can have a huge effect on the care we later get.

 

[nogutsnoglory]

You know it's funny because I saw on a medical record a "thank you for referring this lovely young man" and I was wondering if that's code for being a hypochondriac or something. I know I'm not as does anyone who knows what I've been through but doctors don't understand complex patients with multi symptoms.

 

[2thFairy]

You know it's funny because I saw on a medical record a "thank you for referring this lovely young man" and I was wondering if that's code for being a hypochondriac or something. I know I'm not as does anyone who knows what I've been through but doctors don't understand complex patients with multi symptoms.

"Thank you for referring this lovely young man" is a standard generic thing (and most common) that all doctors say to each other in correspondence. I transcribed doctor's letters for 10 years. "Complicated patient" or "unfortunate patient" are other widely used phrases in correspondence. "Unique" raises flags for hypochondria in some cases, but across the board (in the US) there isn't any particular phrase for a so-called blacklist.

Doctors will make notes to each other if they think a patient is difficult, and office staff quickly know who the difficult patients are, but I've never heard of a blacklist, per se.

 

[valleysangel92]

You know it's funny because I saw on a medical record a "thank you for referring this lovely young man" and I was wondering if that's code for being a hypochondriac or something. I know I'm not as does anyone who knows what I've been through but doctors don't understand complex patients with multi symptoms.

In my case I just took it that my surgeon was happy to get a young patient with a different complaint as most of his patients were elderly with cancer. He told me himself he found it interesting to work with me, and he seemed really pleased to see the improvement in my quality of life after he treated me and has said if I need further surgery he would be 'delighted ' to have me back. He also seemed happy that he got to use his laperoscopic skills to full effect, apparently 20 year old girls are much more impressed by small neat scars than 80 year old men .

 

[Muppetgirl]

I never come across an actual list. I agree with 2th fairy those kind of sentances are just generic.

The way I was trained in my field was that when patients are conceptualised as 'difficult' or 'unmanageble' it often says more about the system itself i.e. those for whom nothing works or have a multitude of problems, often need things like joined up multidisciplicany care and more time, which are things sometimes lacking in healthservices and therefore challenge them. Also if healthcare professionals are not trained to be aware of there own repsonses such as frustration because they cannot give the care they want, then can feel disempowerd and attempt to reassesrt there power in other ways. This combined with systemic problems, can lead to labelling a patient as problematic as its easier to position the problem as external and outside of the system.

 

[nogutsnoglory]

Thanks I definitely have seen myself listed as severe but that's because the disease is severe so that's fine.

One doctor billed insurance as 99999 which apparently is coding for the most complex patients but this Dr is a specialist who deals with fibromyalgia and those cases tend to be very hard so they want the most compensation for taking the time to comb through their case.

 

[xmdmom]

No there are no lists. At least I never heard of any when I practiced.

 

[baistuff]

OK, folks. Time to let you in on some deep dark secrets from a doctor in practice for 15 years having seen thousands of patients in a major east coast city and inner city hospital.

I have NEVER seen a single notation or remark in a chart about a patient being difficult. Yes, we know there are difficult patients and families. We deal with them as calmly and professionally as possible. I have seen patients throw trays, throw poop, curse at docs, threaten their lives. Of course we call security when needed if actual threats occur and mental pathology gets noted, but just being a pain in the ass will not get your chart flagged.

You want to get on a practice's bad side? Treat the receptionist, the clinical assistants and nurses poorly. One negative interaction with them, and you will branded a troublemaker forever. Maybe not in your actual chart, but the staff will never forget a patient who is rude, confrontational, aggressive, overly demanding. The receptionist and the nurses/assistants never forget a name or a face in these cases and they let the docs know. Angry, nasty patients rarely take it out on the doc once the handsome guy in the white coat who gives out yummy pills comes in the door. So I make sure to get lots of feedback from the staff.

The next tip for earning a permanent bad rep as a patient? Show up late. Yes, if it snows, if there is a major accident we get it. But to show up late is a slap in the face to the doc, the staff and other patients. We juggle 20-30 sometimes really sick people in a day. Yes, we run behind- MOST OFTEN BECAUSE OF PATIENTS. usually late ones, or ones that keep calling with emergency questions- the exact same questions as 2 days ago- like "can I have sex after smoking pot?" We are not on the phone with our bookies or investment brokers. You wouldn't be late to a movie, to the Jets game, so why to your doc appointment you booked a month ago to discuss your HEALTH??? Life happens- if you are going to be late CALL!!!

Next tip to piss off your practice.... Bring lots of screaming kids to your appointment and then call the next day saying the docs instructions were not clear. Either bring toys, books, or food for the little ones, or get a baby sitter, or reschedule your appointment for when they are in school.

BTW- many here probably think your doc doesn't understand. Well, guess what, most docs are patients too. I have crohn's, 99% of my patients don't know it. I have a colleague who just had bypass surgery, most don't know. And if your doc is perfectly healthy he/she is probably dealing with a parent who is sick. I just found out a med school classmate just lost a child to brain cancer. You think we get some secret protective gear in med school to prevent illness from hitting us? WE ARE HUMAN. If we don't have complex health issues ourselves, we have a family member or close friend who does. we get the same ailments, pay the same bills, deal with the same traffic, same broken toilets, same health issues you do. You think we don't understand? Well, most of us think most patients have no clue what it takes to practice good medicine nowadays. I don't want or need a medal or any accolades. Just don't accuse me or my staff of being part of some vast conspiracy. None of us is out to get you. We don't have all the answers, but we are serving you the best we can.

 

[UnXmas]

I don't know about black lists, but I have heard that in the UK, if you self discharge and then end up back in hospital for the same issue it can be difficult to get help the second time.

I've self-discharged a few times and never had trouble getting care for the same problem (all NHS). I've also canceled multiple appointments, and received letters saying, if you cancel again you won't be seen in the future by this doctor/at this hospital department, and never had a problem - the opposite in fact; my doctors kept arranging appointments for me that I didn't want.

I also know that when we have a disagreement with a doctor it can be written in the consultantation notes at the GP, so if a doctor takes a disliking to you that could make things harder in future, as other doctors would see what they have written and could make a judgement.

You're right about this though. I've had all sorts of horrible things written about me. For some reason doctors seem to assume patients won't get a hold of their medical records and won't read them. All the negative comments I've read about myself come from the fact that the weight loss I experienced from digestive problems was originally diagnosed as anorexia. A surprising number of doctors are hugely prejudiced against mental illness, and once they see a mental illness diagnosis on a patient's record, assume that that patient can have all sorts of other mental illnesses too, and that any physical symptom must actually be caused by a mental illness. Even if I genuinely had had a mental illness, a lot of the treatment I received would still have been appalling. I advise anyone with a mental illness to keep it off their medical record if possible, because you'll probably be treated terribly otherwise.

 

[Momtotwo]

I agree with 2nd Fairy and I read a lot of consult reports. Every time I see unfortunate patient, I think "They better not say that about my child!" Crohn's sucks but he is loved, talented and adorable; not unfortunate.

 

[SupportiveMom]

I guess I can't be that bad. I've never thrown poop or threaten anyone's life so I must not be that bad. Even when I think I was being a bit pushy I always make sure I take care of staff. At our old GI I used to bring the receptionist a coffee (& made sure to be nice and pleasant for an appointment) and in hospital we would bring the staff a fruit basket or treats for the break room.

Like CSI & the X Files, everyone loves a good conspiracy. I'm glad this black list really is just a conspiracy as I would hate to find out my kid's name was on it. I get why some wonder if such a thing exists when we don't get the answers we need. Sometimes cases are just that hard to help and don't follow a straight path.

Regarding the late issue you mentioned being late is a slap on the face to the doc. As a patient & a mother of a patient I feel the same way when docs are late. We though have no choice but to sit & wait sometimes 2 hrs after the scheduled time to be seen. I take off time from work to be prompt but making me & my sick kid wait 2 hrs to be seen for 15 minutes makes us quite frustrated by the time we see the doctor and then because the doc's schedule is behind you are rushed through the appointment. To boot sitting in a waiting room with other kids probably just gave my kid some sickness she avoided up until she had to be exposed in confined quarters with a kid with the flu/ something contagious. I have almost never been late but sometimes I wonder why should I be there on time if I am going to sit there waiting so long. If my lawyer or accountant made me wait for 2 hrs to see him I would leave and find a new lawyer or accountant. With doctors we are told this is just the way it is and it isn't any better seeing another doc because almost all of them make you wait. I know the system is broken with how many patients you have to see a day and the time is too short to see them all but nothing worse than spending 2 hrs in the waiting room and 10 mins with the doc to feel like it was a big waste of time. I don't complain as much about it up here in Canada because I pay for it indirectly thanks to socialized health care but when I was in the US and had to shove out $125 just to see a doc it would anger me even more. Give me a beeper or something like the restaurants do & let me know when my 'table' will be ready.

Thanks for your insight from the other side baistuff.

 

[baistuff]

There is no question patients' time is just as important as the docs' time. We know it. I wish there was an easy way around it. Just realize that we are not sitting around talking about Derek Jeter or the stock market. When Mrs. Smith calls 14 times in one day, it slows us down. When Mrs. Smith insists she has feels horrible and must be seen today, we double book her in, and then she comes in 30 minutes late and then spends 30 minutes whining that her ex husband isn't paying child support, well it puts us behind. Sometimes what is a quick follow up visit turns into us 911ing someone to the ER. Sometimes we are breaking bad news. Sometimes I don't like what I see or hear, order a stat Xray or EKG or lab, and this all takes time. In the hospital setting I could be sitting with a radiologist discussing what best way to get at the tumor, getting a curbside consult from someone, on the phone with a family member or getting an earful from a social worker or nurse. It all takes time.

In the US, where there is so much emphasis on patient satisfaction scores, we are MORE than aware of the need of good customer service. From being on time, to courteous staff, to caring and sympathetic docs. Trust me, I have kids who have soccer games and piano recitals and social studies tests. I don't want to be in my office or the hospital at 9 or 10pm. I want to run on time. It is oftern out of my control. I agree with you though that patients can and should be made aware of the docs current pace/schedule. The only problem with the restaurant analogy (though in theory, i think you have a good idea,) is that sometimes if I think something is quick, or while they are getting an EKG in a room, I'll quickly fit in what may be a quick URI, strep or other simple visit. So when the staff tells you I am an hour behind, it doesn't always mean you will be seen an hour late. We do dry to make it up.

BTW, just as an aside. I can't remember the last time, whether in hospital rounds or in the outpatient office, I sat quiety and had a 30 minute lunch break. Usually I just stuff whatever random food I have in going from one room to the next.

My advice is always try to book the first appointment in the morning or afternoon session. Or, very last of the day, when your own work day is over. Keep in mind in the GI world though, your doc may be scoping in the morning and not getting into the office until right around your appointment time. Throw in some traffic, or a simple complication, and that's it for being on time.

Speaking of which. Just about 9am in Gotham. Don't want to make anyone late because I am on a crohns forum.

 

[SupportiveMom]

Have I said it is nice to have you on the forum baistuff? And I live Derek Jeter.... lol

 

[Daisy123]

I always presume if clinic is running late, then there has been an urgent patient that needs to be seen. I am cogniscent that one day I might be that patient. I live in the UK and am grateful for the excellent care I get. I am happy to wait and take stuff to do with me. If I think I have been difficult, I will always apologise.

 

[Tesscorm]

When I have a question, I try to send emails as much as possible (actually, rarely 'call' my son's GI with a question).

I've found this works well for a number of reasons, and I think it works well for the GIs office as well...

- I provide as much info as I can that is related to my question, if I have labs from another dr (ie from GP, etc.), I will attach a copy.
- If I'm not in a rush for the answer, I will say so... But, if I don't get an answer within a certain time period, I resend the same email and again make the request. (I think it's a more subtle way to give a bit of a nudge! )
- To a degree, it allows the office staff to respond when convenient for them. It's alot easier to be accommodating when you don't have 5 people standing around your desk and someone trying to ask a question on the phone.
- As far as I know, the email 'conversation' becomes part of my son's file and that information stays available and not forgotten.
- And, to a degree, holds staff/doctor accountable... I've had instances when contradictory info was given or testing not followed up. Shortly after my son's dx, a nurse sent email saying MRE showed a small amount of inflammation, nothing to worry about and then, next MRE, same nurse's comment was 'same 30cm of inflammation present - needs to be addressed'. Having the two email conversations allowed me to go back and question why the 'same 30cm' was nothing to worry about at one time but seemed to be concerning the second time. In this case, it was the nurses' interpretation/communication that was wrong but, it led to more discussion with GI and I believe the GI should be aware of how his/her nurses are interpreting results to patients.

So far, this has worked well for me...

 

[SupportiveMom]

Tesscorm how long did you wait between sending the 1st & 2nd emails? Since we use the same hospital kind of gives me the best protocol. ;-)

 

[valleysangel92]

I agree that waiting for doctors can be frustrating, but my new IBD team are brilliant and I have no issue waiting for them because I know I'll get the same attention that everyone else is getting, if I go in late then that's ok, they don't cut my appointments short because of it and I still get the care I need. My previous doctor would turn up late for silly reasons and would then cut my appointments short because of it, one time I waited for 3 hours and got seen for 5 mins.

I agree with emailing being easier, I've only fairly recently been given access to this facility, before I got my current consultant I didn't have access to the nurses but he made sure I have the numbers and email address.. Usually my nurse emails back at the end of the day, if I call then it's within 2 days, so that's still really good considering they are really over stretched

 

[Robrich]

Nothing wrong with being difficult if it is deserved.
If I don't feel I am being treated properly I will come right out and tell them you know I have a reputation for being a difficult patient. I don't take stupid crap like when I needed a refill and my doc was away the covering docs plural, decided I had a complex situation and they plural wanted to see me at 8 am.
Thanks but no thanks and I told them off good.
I had been a patient at UCLA for over 20 years my long time GI retired and I had a new guy with humira and no plan b. now I need a refill and they want to start on my 50 year history and make a sick crohnie fight traffic for a routine refill(clindamycin) for a few more days.

Ended up now with their top Crohn's doc she's great knows her stuff, we seem to agree on direction for now. we've butted heads a bit but I am also a very good patient I comply try hard and often have successful outcomes thankfully.
Meanwhile I treat all the staff nurses, reception etc really really nice and go out of my way to do so. And when the doctor shows they really care I show my appreciation.
I also know whatever they do it's still 50/50 if it will work, but have a hard time with des dictating their way or the highway and lacking sensitivity.

 

[Tesscorm]

SupportiveMom, really it depends on my question or issue. When it's been a more urgent question, both his past hospital (your current one) and his new one, have been pretty good about answering the next day (sometimes same day). At one time, I thought S needed some vaccines before a trip but needed to give the vaccines quickly in order for them to take effect. I maybe waited a day or two and then wrote back explaining why I needed their response so quickly. If it's about something like a request for copies of results (and if I don't really have any concerns), I'll wait a week and then just ask again, mentioning that it's not a rush but that I wanted to be sure they saw my original email. So really it depends...

I don't know why but when S was at the children's hospital, we had one specific nurse that I always spoke with but, I have another friend whose daughter is there and she finds that she deals with a different nurse each time?? I think it makes a difference if you build a relationship with just one nurse and she knows who you are... This is the case at S's current hospital as well - his GI has one assistant and that is who I always deal with. Do you deal with one specific nurse?

 

[UnXmas]

When I have a question, I try to send emails as much as possible (actually, rarely 'call' my son's GI with a question).

I've found this works well for a number of reasons, and I think it works well for the GIs office as well...

- I provide as much info as I can that is related to my question, if I have labs from another dr (ie from GP, etc.), I will attach a copy.
- If I'm not in a rush for the answer, I will say so... But, if I don't get an answer within a certain time period, I resend the same email and again make the request. (I think it's a more subtle way to give a bit of a nudge! )
- To a degree, it allows the office staff to respond when convenient for them. It's alot easier to be accommodating when you don't have 5 people standing around your desk and someone trying to ask a question on the phone.
- As far as I know, the email 'conversation' becomes part of my son's file and that information stays available and not forgotten.
- And, to a degree, holds staff/doctor accountable... I've had instances when contradictory info was given or testing not followed up. Shortly after my son's dx, a nurse sent email saying MRE showed a small amount of inflammation, nothing to worry about and then, next MRE, same nurse's comment was 'same 30cm of inflammation present - needs to be addressed'. Having the two email conversations allowed me to go back and question why the 'same 30cm' was nothing to worry about at one time but seemed to be concerning the second time. In this case, it was the nurses' interpretation/communication that was wrong but, it led to more discussion with GI and I believe the GI should be aware of how his/her nurses are interpreting results to patients.

So far, this has worked well for me...

I really wish my doctors would communicate with patients by e-mail! I live so far from the hospital, it would be so much easier. The number of appointments I've had where I've traveled an hour each way, and waited an hour to be seen, only to have a short conversation that could easily have been had via e-mail - or even phone. My GP does phone appointments, but none of the consultants do. It would be so good to have everything discussed there in the e-mail as well, rather than have the doctors forgetting things, and where you can have proof of what they've said previously. Surely it would save doctors time too. And it would save me the cost of parking in a hospital car park!

I don't mind waiting for appointments though. I understand doctors run late for a reason. I once waited all day for surgery, and was all mentally prepared for surgery, only to have it canceled and rescheduled because the patient before me ended up having a longer surgery than expected. When I did get that surgery done a couple of weeks later, I was the patient who took hours longer than expected, and I assume whoever should have been having their surgery after me wasn't happy about that. But I understand the length of time needed for a surgery isn't always predictable.

 

[SupportiveMom]

Since being at the children's hospital exclusively for almost 3 months I can not complain about the care. I was spoiled with D's last GI & before we transitioned to the 2nd opinion & hospital I was told I may not have the same access I was used to (I had her old GI's cell # & she would even call me on a weekend or evening to check on D). D was her old GI's top priority because of her severity compared to the docs patients she had. Now I am towards the top of the priorities but there are some other severe cases like D. 2x we have had to wait more than 1.5 hrs, but we have also been seen in 10 minutes so it all averages out.

We have 1 nurse we deal with now (had 2 but that was because we didn't meet the nurse we have now when we first met because she was on vacation). I have met a few other moms & some have a consistent nurse, others don't. I am glad to have just 1 dedicated one. Makes emails & calls much easier.

 

[Kev]

I wasn't a 'difficult' patient. In fact I saw the doctor-patient relationship as a team effort to fight this disease. And I've been very fortunate... the doctor's I've dealt with (with the exception of some I met during ER visits) have been exceptional. When I was faced with the prospect of my last operation... I took the precaution of seeking a second opinion from another surgeon... arranged by my GP. I went ahead with the operation. After it was all done and over with (the surgeon was the best, bar none) I made the mistake of mentioning to his chief nurse/assistant that I'd sought a second opinion before surgery. Well, she made it clear, in no uncertain terms, that if I needed to see a doctor, I should go to the one that had provided the 2nd opinion, and not bother to contact her doctor.
Seriously... Now, 'her' doctor was not only a great surgeon, but a really nice guy too. So I'm pretty sure he had no idea that his nurse was pulling this ****... but since I didn't need another operation at the time.. and I had my hands full dealing with my disease, I let it go. But I've seen one case of black listing, so I know it did exist, at least back then.

 

[Susan2]

My GP works at a clinic where they made a decision to close for an hour and a half at lunchtime, with the exception of one doctor who is rostered on to do 5 minute appointments just for repeat prescriptions. They have found that they all work much better having had the break.

 

[DustyKat]

I have never seen a notation that a patient is difficult. I have known of GP’s refusing to see a patient but that is down to the patient/doctor relationship. Not on the doctors part mind but because the patient has either lied about their history or been doctor shopping and in doing so it comprises the treatment the doctor suggesting/prescribing.

As to waiting…I never go to an appointment without ringing first and asking what the wait time is. For the local doctor (GP), it is only a couple of minutes away, they ring me when the patient before me goes in. For appointments further afield I just do whatever until it is time to rock up. Beats sitting around in a waiting room, but then again it would need to be called something else if you didn’t have to wait. :lol:

Dusty. xxx

 

[StarGirrrrl]

I get the "thank you for the referral for me to see this lovely young lady" too. I figured it's just Drs being courteous.

 

[Vicki2014]

Unfortunately, the first specialist I saw was not thorough and did not carry through with diagnosing me. He basically threw his hands in the air and said he didn't know what more he could do. He did a colonoscopy without taking any biopsies and said it was normal then gave up. 2 weeks later a CT scan shows inflammation in my sigmoid colon and in my bladder so the 2 months of pain I'd been in when I saw him was not normal. Because his consult note indicated my pain was all due to "stress" this has caused many setbacks in me getting in to see a 2nd specialist, losing my short term disability and I am in month 4 of pain every day and no treatment plan yet. What a doctor writes in their consult notes can affect the patient in many negative ways. I now get a copy of every dictated or handwritten note from any doctor I see so that I know what I'm possibly going to face in the future.

 

[baistuff]

Unfortunately, the first specialist I saw was not thorough and did not carry through with diagnosing me. He basically threw his hands in the air and said he didn't know what more he could do. He did a colonoscopy without taking any biopsies and said it was normal then gave up. 2 weeks later a CT scan shows inflammation in my sigmoid colon and in my bladder so the 2 months of pain I'd been in when I saw him was not normal. Because his consult note indicated my pain was all due to "stress" this has caused many setbacks in me getting in to see a 2nd specialist, losing my short term disability and I am in month 4 of pain every day and no treatment plan yet. What a doctor writes in their consult notes can affect the patient in many negative ways. I now get a copy of every dictated or handwritten note from any doctor I see so that I know what I'm possibly going to face in the future.

Oy. sorry to hear that. That doc sounds like he shouldn't have a medical license. You are absolutely right that what goes in notes can have an impact on patients. That's why we are taught very early on things to completely avoid ever charting. Keep in mind that every splash of ink (or pixel nowadays) in a medical record is a legal document. Thank god it's been 15 years of practice for me with no lawsuits, but it still goes through my mind every time I jot anything in a medical record.

Hope your new doc is working out better. There are indeed some lousy ones floating around.

 

[Kev]

End of May, I was hospitalized. While there, a 'doctor' performed a sigmoid scope. He only went in as far as the nearest old scar tissue. Now, that may be because I wasn't under anesthetic, and he didn't want to hurt me (but, I was in hospital, so they could've knocked me out)... or maybe he was in a hurry... or maybe he was just plain incompetent. There are incompetent people out there who somehow got their degree. There was no sign of inflammation in the small area he examined, so he assured me I was still in remission. He was wrong. A thorough scope 2 weeks later ..beyond the 1st scarred area... showed full involvement. His... 'mistake'... gave me two weeks of false hope, and delayed my correct diagnosis.. and treatment. I haven't forgiven his mistake.

So, I have my own blacklist. I won't let that doctor anywhere near me again, no matter what. Fool me once, shame on you. Fool me twice, and you might be the death of me.

 

[Tesscorm]

It really can be tricky navigating through the medical system! I'm always hesitant about becoming 'difficult' but have found myself in situations where I risk becoming 'difficult' or not properly advocating for son. Son's GP does not use email and I've had frustrations where confusion/mishandling has started with office staff and ends with me feeling/looking like I'm the one being demanding and difficult! :ybatty:

And, completely agree with getting copies of everything, especially if you have any doubts at all!! I'm really very comfortable and confident with my son's GI and his staff, yet, in less than two years, I've had test requisitions and results gone missing and, somehow, it seems if I hadn't asked for copies, it wouldn't have been noticed (hoping it would've been noticed eventually)?!?! And this has happened two to three times! I don't understand how it can happen especially as I know this is a very reputable IBD clinic but, human error happens so... I get copies.

And, yes, there lots of great doctors but there are a few lousy ones too. My son was just misdiagnosed (in ER) of an unrelated illness and the diagnosis caused him a great deal of distress. I convinced him it was worth the time to drive back home and get a second ER opinion from one of our larger hospitals; worst case, we'd waste a day. Turns out first doctor was wrong and didn't even order the standard tests for what she believed was the diagnosis?!?! I don't know if this sounds terrible :blush: but, in my mind, while every doctor is licensed and passed their exams, every graduating class had someone who came in last! :lol: Worth trusting your gut and checking if you have doubts!

If you don't want to be a pest requesting copies of every test, you may be able to bypass your GI's office and contact the hospital's patient records' department directly. There is a fee for this but you can reduce the cost by requesting only what is imporant to you (ie within a certain time period or the type of record - labwork, summary notes, etc.). But not sure if this is available everywhere ...

I really do try to not be difficult but I always follow-up and question, I recognize my son's GI has hundreds/thousands of patients to watch out for, but I have only ONE... bottom line, no one cares more for your health than you.

 

[UnXmas]

End of May, I was hospitalized. While there, a 'doctor' performed a sigmoid scope. He only went in as far as the nearest old scar tissue. Now, that may be because I wasn't under anesthetic, and he didn't want to hurt me (but, I was in hospital, so they could've knocked me out)... or maybe he was in a hurry... or maybe he was just plain incompetent. There are incompetent people out there who somehow got their degree. There was no sign of inflammation in the small area he examined, so he assured me I was still in remission. He was wrong. A thorough scope 2 weeks later ..beyond the 1st scarred area... showed full involvement. His... 'mistake'... gave me two weeks of false hope, and delayed my correct diagnosis.. and treatment. I haven't forgiven his mistake.

So, I have my own blacklist. I won't let that doctor anywhere near me again, no matter what. Fool me once, shame on you. Fool me twice, and you might be the death of me.

My "blacklist" includes not only endless misdiagnoses, prejudice about having mental illness on my medical record, etc., but also sexual abuse.

 

[Kev]

My follow up scope led to immediate admission. The 2nd scope was because my doctor suspected that the diagnosis of this other one was suspect. Good call. I was admitted so fast because I was on the brink of Toxic Mega Colon. If it hadn't been for my doctors gut instinct, that quack could have caused my death. It took 1 & 1/2 weeks in the hospital to bring me back from the brink. I have all the documentation of that idiots little slip, if not for the fact I'm so sick at the moment, I considered suing his ass. Maybe another time.

 

[mtseeg]

I know I'm a few years late on this thread, but I can verify that, at least in my case, there is indeed a black list. It actually appeared as a notation in my permanent record, and shows up whenever a test is performed.

In my case, I had a major health issue (not Crohn's) a couple years back. I didn't know what was going on...was very scared...and I made the mistake of telling my primary care doctor so. He responded by placing me on antidepressants. From that point on, in his mind, everything I said or did could be attributed to "anxiety."

Later on, as the specialists he'd referred me to started to find evidence of nerve damage and muscle damage, and then suggested a recommended treatment plan, I went back to this doctor. Instead of following their recommendation, he told me he'd only treat me for the "mental" issues I did not have, not the actual objective things that were happening. When I balked, he promptly dropped me as a patient.

Not only did he drop me, but he said I was barred from seeing anyone at his practice. His office was also tied to a large, corporate health group that controls a lot of our city's hospitals, doctor's offices and urgent care centers, etc.

Very recently, I had an MRI done within this large network. Right on the interpretation report, at the very top, it read,

"CLINICAL COMMENTS: PATIENT DISMISSED FROM (name of my practice) on (date of my termination)."

Now, call me paranoid, but if I were another doctor in that same health care conglomerate, I'd be wondering who I was dealing with. And as a patient, I was left wondering if this doctor's interpretation of my current issues would skew his objectivity in reading my MRI.

The flags are real. At least in my case.

 

[Pug Gamer]

Mtseeg that literally blows my mind! They make it sound like your some kind of criminal for wanting your results to be followed up and get the treatment you should rightfully expect! Wow. I bet that stress really did your conditions the world of good!
Is it possible to get marks removed from your record??
I have heard of people paying for a copy of there medical records and finding all kinds of lies and hurtful comments. Mine apparently said i was a smoker from 16-21 but i never smoked! Lol. If i could look at mine, i wouldnt. I honestly would feel like giving up, ive had nothing good to say about gp's, specialists, physios etc from where i used to live so i can imagine my records.

 

[mtseeg]

Hi Pug:

Yep, that's American medicine for you. Doctors in the U.S. can freely drop you without any fear of the state board regarding it as a breach of the Hippocratic oath. I guess that oath is more of a suggestion...

We'll see how worse it gets next week, when they will possibly vote to give us back our "freedom" to pay four times what we're paying now for health care. But I digress!