Medical Mistakes That Hurt

[wheelchairdemon]

Hi,

How does one legally get a defamatory statement removed off ones medical file?

It was put there in 1997 by a psychiatrist.

I knew it was there, but it wasn't a problem for years. My positive get well, and move forward, attitude served me well.

Now that statement has come back to haunt me and my family doctor told me. I must get a lawyer.

My question is where? Does anyone have some suggestions or the name of a lawyer?

 

[forgetmenot]

If you can get a second opinion from another psychiatrist that psychiatrist can get that label removed i believe he or she can inform y our gp of the new diagnosis and have old one removed

 

[wheelchairdemon]

If only it were that easy. Ever since that psychiatrist wrote on my file that I was a professional patient, I have been unable to get another psychiatrist. I've also been unable to get pain control for my severely degenerated spine and neck.

I see a pain specialist in Toronto who freezes the impinged nerves in my neck once a week. I can't get physiotherapy and I've never had rehab therapy as a wheelchair user.

I ended up in the wheelchair because of medication damage.

In 1997 I met a fantastic family doctor, whom I credit with saving my life.

When the psychiatrist wrote that I was a "professional Patient" in my chart and that I was discharged to Detox and a Methadone program, which never happened, the family doctor took over everything.

She saw me for counselling once a week and she, at my insistence, got me off the morphine. The doctor who was prescribing it eventually got into big trouble with the College of Physicians and Surgeons and moved back to Texas.

The reason I got well with the help of my family doctor is, her style was positive, supportive, and she taught me how to put into perspective the various crises I was facing. Not only that, she was the first one who didn't blame me and the first one who REFUSED to talk to my parents or force me to remain economically dependent on them.

When that family doctor left, she took the time to groom the new family doctor. That meant I could basically carry on with getting off all the ridiculous numbers of medications I was on. With the new doctor's help I finally managed to get off all the psychiatric drugs as well. That second family doctor then took pregnancy leave and never came back. I was assigned to a new family doctor in the same clinic, but the sharing of past history and a formal introduction was never done at all. That's when communication really broke down. I was in a teaching facility so, every time I turned around, I was assigned to a new doctor because the turnover was great. By the time I left the clinic 8 years later, I'd been through 6 more doctors and there was a whole hodge-podge of conflicting reports added to my chart.

Even still, since getting off the medications I've never looked back, mental health wise. I get frustrated when referrals are made to the GI Clinic, Rehab, or Neurology and the outcome has been to basically dismiss me because of my mental illness past. The first question a new doctor will ask me is, why do you use a wheelchair?

It sounds reasonable enough, but how do I answer them? The truth is I probably wouldn't have to use it anymore if I could just have just gotten the rehab the family doctor wanted me to get back in the late 90's after she got me off all those prescription drugs.

How do I state today that, despite the best efforts of that family doctor who made numerous referrals to rehab clinics, neurologists, physiotherapists, that she couldn't get me health care because of that so-called "professional patient" status?

Now that I have my charts and I have read through them, I, a pharmacist, and my current family doctor have been able to determine that the leg problem was caused by high doses of medication and several drugs that were severely contra-indicated to one another.

It took 5 years to taper off the drugs. The reward, when I got off them, was a brain that was fully awake, a desire to live life to its full, and a determination to put the 22 years I’d spent in the Psychiatric Hospital and on heavy medication, behind me. It’s sad to think that other doctors failed to see that the neurological effects I was having at the time, and that put me in a wheelchair, was not an Organic disorder (something I was born with). The irregular brain waves on an EEG, the irregular heartbeats and bradycardia , the nystagmus in the eyes (that made it hard to see), were considered to be organic in nature, but they went away with the discontinuation of the medications. On showing my prescribing history to a pharmacist and my current family doctor, it is clear the prescribed medications I was on, were causing the neurological problems.

When I got off the medications and could think more clearly, thanks to that fantastic family doctor, I gave up fighting with the system. I figured I could, with their help, prove that that psychiatrist was wrong; that I was not a professional patient, by my actions alone. After all, since 1997 I’ve been successful getting off all medications, learning how to live on my own for the first time in my life without psychiatric support, and learned how to use a wheelchair, for which I was never given rehabilitation for. I can now safely say that I have succeeded at defying all medical logic by walking completely away from the mental health system that had me hospitalized for close to 22 years and heavily drugged. Since that family doctor helped me learn how to manage crises better, I've been able to get away from the severe critical and financial control of my parents and the obviously unhelpful drugs prescribed by psychiatrists, so I could move on.

I've managed for well over 15 years with zero pain control, medication, and zero rehab or help in my home (as a physically disabled person), to get well.

Many of times I have asked family doctors to refer me to a psychiatrist for a second opinion so I could prove once and for all if I was, or was not, a professional patient, but all doctors have refused to see me.

I keep trying to clear my name every once in awhile, but talking about this background brings up a severe trauma response and tons of tears. That's why I, every now and then, ask to see a psychiatrist. That’s also why I avoid broaching this subject too often.

Just last Monday my family doctor told me that yet another psychiatrist has refused to see me. He will see me if I pay him privately, but that's it. I'm on a disability pension. I can't afford to pay.

Since January 2010, when I first started seeing this family doctor, I've been referred to the trauma clinic (I must pay and can't), 4 social workers who've seen me and said my cognitive thinking is fine, that my problems with the health care system are unsolvable and until I fix them, they can’t see me, and 2 psychologists, who insist I must pay for their service.

I think the true answer of why no one will see me was expressed well by that family doctor who saved my life back in 1998. Here is what she wrote when she was making referrals for me to see doctors locally and in other cities:

[me] has concurrent psychiatric illness - she suffers from recurrent depressive episodes. She at one time was also diagnosed with a personality disorder which unfortunately usually prejudices the approach many physicians take to her problems. I find the personality problem only surfaces now when she is extremely stressed. Even this is improving though as she has come through the last two or three crises without reverting to dysfunctional behaviour.

And then:

"Psychotherapy has not been an easy task. We are short of psychiatrists who are able to take on patients like [me] - psychiatrists who have wheelchair access, whose appointments are covered by OHIP and who have expertise in psychogenic pain, if indeed that is her problem. "Many psyhciatrists feel that a diagnosis of personality disorder is not treatable."

So yes, I'm in a real mess. I just don't know how to get out of it.

What's really scary is since the introduction of LHIN's (Local Health Integrated Networks), I'm now being limited to my own community for health care and specialists treatment.

My family doctor, whom I just got 2 years ago and has been trying very hard to over-ride this mess, told me last Monday that I MUST get a lawyer. She said she can no longer make referrals to the appropriate specialists out of town, and the ones here refuse to see me, so it is imperative I now get this mess fixed.

The question is how. I've called several lawyers and they refuse to take the case on. I went to my MPP and they told me it's not their job. I even re-stressed the point that I am being refused health care, and the MPP says he can't do anything. It's his job, but his office staff won't let me see him directly. She intervenes and I've never found a way to get around her.

For now I'm okay. I get my nerves frozen in my neck once a week for the pain and I've chosen to keep doing what I'm doing; one paid job locally, and 3 volunteer jobs in Toronto. As long as I'm doing something positive I can live with the pain and avoid a depression. I just know the noose is closing and, other than going to another country to seek asylum, I'm not sure what I can do to fix this mess up, yet.

 

[Mari]

That is certainly a lot to think about and a lot to deal with but it does sound like you are managing well. I received legal help through the Women's Centre Hopedale Mall and also through Neighbourhood Legal Services. It was not easy going through all the hoops and it took some time but things worked out okay for me. I now have another legal problem (sigh) and have been referred to Law Help Ontario but I have not had a chance to contact them yet so I am not sure what help they can provide but it might be an option for you. I wish messes were as easy to clean up as they are to make.

 

[wheelchairdemon]

Mari,

The sad part is, I'm no longer managing well. My doctor told me that yet another psychiatrist refuses to see me, I'm traumatized, I cry a lot, and I'm losing hope.

The Family Doctor said she could send me to another social worker in her clinic but, because my thinking is clear and basically achieves what Cognitive Behaviour Therapy would teach me, she didn't feel there was a point in making the referral. The last 3 social workers stopped counselling and said I must solve the problem with the health care system before I can go back... that my "Unsolvable Issues" (and the emotional pain I'm experiencing because of them), was making them (the social worker) depressed.

The family doctor won't prescribe medications for the panic attacks and meltdowns I'm now getting, because this reaction is not an illness, it's the sting of realizing that that very old lie is still excluding me from fair and humane treatment in the health care system.

My doctor said she can't make any more referrals to treat my degenerated spine, legs, bladder, and other disability related issues that require a referral to a specialist because most will dismiss me after reading my chart, and before I get a chance to set my foot in their door.

My doctor is not mean. She's just reached a dead end and can see that, the more referrals she makes, the worse it gets for me (and that's true).

I'm just trying to figure out,
Is it normal to ask a patient to forget the past and the pain of being dismissed as basically a hopeless case?
Can defamatory abuse like that successfully be swept under the rug?

If so, is cognitive behaviour therapy the tool to teach me how to forget it?

If I learn how to over-ride the pain, what happens if I get another health care problem and the system continues to refuse to treat?

Should I just accept that I will have to continue to accept I must live with severe pain from the degenerated neck?

I have another idea that I'm trying to get up the guts to do. I'm just scared that it might make things worse because, in effect, I'll be saying to the psychiatrist, "I caught you making a defamatory lie." If that goes over badly, I'm toast.

Anyway, here's my idea.

I want to call together a conference with that doctor who wrote that lie (about me being a professional patient and on Methadone), the current family doctor, the very supportive minister from my church, the medical records and privacy officer staff (whom I've been working with for the last 2 years to clean up my files), and maybe the hospital administrator.

I then want to confront that doctor and ask her point blank....

"here is the list of issues that led to the crises that had me hospitalized when I was assigned to you for my doctor.".... and then I'll show her her discharge note.

"here is the letter my family doctor wrote to you a mere 10 days before describing how hard I was trying to avoid hospitalization."... and then I'll show her the letter.

"here is the list of issues I was dealing with - it's very long - from both you and the family doctor."... I'll show both files to her and then ask, would you not think this number of things would too much for any ONE person to handle alone, especially when they've been diagnosed as depressed?

"here is what the pain specialist wrote about the Methadone." The pain specialist wrote a big IF statement... like, IF I start buying narcotics on the street, THEN I should be put on Methadone.... I'll then show her the letter and ask, "So why did you write in YOUR report that I was discharged to the family doctor and the Detox clinic to follow a Methadone protocol that the pain specialist mused about but didn't put me on?

I'll then show her the summary from the College of Physicians and Surgeons web site about the trouble the doctor prescribing the morphine got in, and the referral letter from my family doctor to the second pain specialist. It clearly states I was the one who demanded to get off the morphine. I'll then ask, "did you not think that perhaps there was a very good reason why my family doctor referred me to a second pain specialist? I was desperate to get away from that morphine prescribing doctor. Why would you tell him I was a "professional patient?" When I saw him it was clear his objective lens was closed, but I had no idea why until my family doctor reported what had happened. She, in the end, got advice and created her own tapering regime. I not only got off it according to plan, I sped up the plan and, in the end, showed no obvious signs of the withdrawal that one would exhibit if, in fact, they were abusing it.

With any luck, this constructive type of confrontation will work out. The thing is, the medical records and privacy officer have already told me that it's voluntary for the doctor to take part in a meeting that questions the wording on an old file, and their past experience has shown that NO psychiatrist has ever agreed to fix things.

In my case, I don't have to prove myself at all. The medical files from 3 different doctors, written all at that time, when put together can tell all. What freaks me out the most is, the hospital and many doctors know what these two doctors wrote, and they know how it led to a complete dismissal by the health care system, and yet they still insist IT IS MY JOB, not theirs, to fix the problem. Where are the ethics? Where is the do-no-harm philosophy? To have a lawyer and the MPP's office tell me emotional harm is not serious, really hurts. If I were to witness a person robbing a bank, and I said nothing, I could be considered an accessory to the crime. Why does this same logic not apply to the health care system?

The scarey part, in the here and now, is I am having a really hard time trying to stem the extreme emotions, the panic attacks, and fight off the feelings that I must be scum if people won't treat me. I know that is wrong thinking, but it's getting harder to not self-doubt and think that perhaps my thinking is distorted. Perhaps all these doctors are right and I just have to learn to take more responsibility for myself. My head is going around and around in circles and I can't even call the crisis line without being hung up on.

If sharing this story here is inappropriate, please tell me and I'll stop. I have no one else I can talk to so it helps to write this thing out. I usually find, by writing things out can lead to feedback, some of which may not appear to be helpful by the author, can be very helpful to me.

 

[forgetmenot]

I hear your distress and i do understand it ok i do crisis lines they do that to someone i care about hang up or pass that person along to someone else It makes her feel like trash to YOU do DESERVE care and for these doctors to tell you it is your responsibility is not right ok yes you have to own some of it but not all of it YOU need help and despite your label they put on you YOU deserve to get the same help any mental health person does. That is one reason i myself will never be labelled ever
I am sorry you are having to deal with your own mental health without the care and guidance of a professional That is just not right

There is help for people with borderline personalities there is DBT treatment and meds as well to help so i don't get it how these professionals can shut you down

Please get someone to advocate for you there must be someone in the mental health field that are advocates for people just like you who do not know how to navigate through it.

Keep talking to us ok although we may not have all the answers your post may help others as they too have to fight to get help never stop fighting ok hun YOu are worth the fight

 

[wheelchairdemon]

I just wish I could stop feeling so helpless. I've been asking for physical and emotional help for over two years now. Several psychiatric referrals were turned down because I'm seen to be managing too well. I have 1 paid job in my community and 3 volunteer jobs in Toronto. Because I have these I am reminded how much more I have than someone else.

That's not the point.

I'm excluded from so much locally because of physical barriers to my wheelchair and the excessive cost of the Access Bus, so I have to go to Toronto. I go there for medical appointments anyway, so ODSP pays for the train. In Toronto, when I volunteer, my bus costs are covered. I'm also made to feel welcome. I'm not being told I'm an inconvenience because my wheelchair is in their way.

In other words, I continue to go (and know) where I am welcome.

Physiotherapy, pain control, and rehab for my severely degenerated neck, is at the bare minimum. It's not enough.

Emotionally I'm wearing down though. I thirst for each weekly trip to my appointments in Toronto, but to get help to sort this defamatory mess out, there is none. I went to Emerge at CAMH on College St once, had a long interview , and was told I don't have a mental illness. I must go back to my family doctor and ask her to help fix up the mess that blocks me from health care.

I tried to follow his advice and, once again, my doctor said it's not her job.

I went to Emerge at Toronto General and was told they can't help out-of-towers. They're already overloaded.

The local Emerges in my city tells me I must learn to ignore the past and move on. I have asked for, and been refused, a psychiatrist or help from the ACCT team many of times; since 1997, to be exact. They too, tell me I must resolve the source of the problem first. Talking about it only makes me more upset, they say.

I've asked for meds to ease the emotional pain of feeling so rejected and was told by my family doctor she's not comfortable prescribing them. I must see a psychiatrist.... And they refuse me.

Now I drink beer to ease the pain; not a good thing. I'm getting fat, feel guilty for drinking, want to stop, and I can. But then the emotional pain breaks me down, I cry too much, and go back to drinking it again.

Meanwhile I've looked for services. Woodlawn YMCA said they were accessible, had everything I need in the way of support, I applied, and then was turned down because they weren't wheelchair accessible. Are they, or aren't they; I still don't know.

I've applied for respite, an emotional break, and keep getting turned down flat.

Right now I can't stop crying. I'm too afraid to go to Emerge because, in the past I've been sent packing; once after midnight to wheel more than 3 kms. Home. No wheelchair accessible transportation is on the road late at night. I swear the doctors wait long enough into the evening to ensure I'll be stranded, and then send me home without the benefit of a bus or a taxi to "teach me a lesson." They do this with the ambulance. They write in it, non-emergency and then tell me, it's to teach me a lesson to not abuse scarce medical resources. I get stuck paying the full $250. ODSP won't pay non-emergency ambulance bills.

BTW, this accusation of abusing scarce medical resources was instigated by the borderline personality disorder outpatient unit and I still have a copy of where this was noted in my chart. All people diagnosed with BPD were told not to use "these scarce medical resources". It was that program that cut me off all community physical disability supports as well.

A lot of this can be proven with written notes, medical charts, and at one time, the audio recordings I used to make of encounters with doctors in an effort to protect myself. I gave up recording out of fear. It 'a legal, but it upsets people.

I wish beyond belief that I had an advocate. I keep looking, but no one will touch this with a 10 foot pole.

 

[forgetmenot]

The tell you you do not have a mental illness yet clearly you are depressed and anxious Your gp can prescribe meds for depression and anxiety if he or she wont then find someone that will ok

 

[wheelchairdemon]

forgetmenot,

The doctor said she refuses to prescribe them.. which may be a good thing.

Today I spoke to the minister at my church and I asked for his help. He read through everything very carefully and then said he plans to find a way to help. For the first time in 17 years I FINALLY have someone to walk by my side. I'm no longer alone!!

What a HUGE relief. Nothing is solved yet, but I can't believe I've FINALLY, FINALLY, FINALLY, been heard.

 

[forgetmenot]

I am glad you were heard wheelchairdemon sometimes that is all one needs to start healing is just being heard hugs to you