Doctors Not Being Held Accountable: The Periodic Paralysis Diagnosis By Guest Blogger Maureen McCutcheon

Hello All,

The topic of seeking a diagnosis and being abused by doctors in the process, appears nearly daily on our PPN Support Group. Almost every new member has a horror story to relate of their past battles and/or their on-going battle as they traverse across and through the 'diagnosis nightmare highway' lasting sometimes decades, and leaving individuals in a 'diagnosis limbo' at the hands of fallible doctors inflicting pain and damage through disrespectful and discriminatory actions and dis-action.

Maureen has written another great article on this topic for us...Thank you.

Doctors Not Being Held Accountable

The Periodic Paralysis Diagnosis

By Guest Blogger Maureen McCutcheon

The Medical Community is aware that tests and imaging and interpretation of tests and imaging, are fallible and have proven to provide incorrect, false, misleading, inaccurate and/or missed data and information.  The medical community is aware of this and  that this may be due to several factors that have proven  the limitations of technical equipment to always provide accurate information.  And people are fallible. People performing the test may not have been conscientious or have insufficient experience or the person (even 'specialists') interpreting the data, misreads or just 'misses' that can result from and in factors such as writing and reading the report, handling/mis-handling either or both the patient and testing equipment, image, or lab product. The condition of the patient can hinder obtaining results/image or variable factors/conditions that can influence the outcome of the image or testing. Or may not able to 'catch' abnormality at time of test, imaging or study.

Though a doctor may say that a test is "not showing anything wrong" or all is "normal," it doesn't mean nothing is wrong. It can mean that the test/imaging that doesn't reveal 'abnormal' that seems 'normal' or 'nothing wrong' isn't revealing the abnormality at that time so result isn't giving accurate info. It may be that test isn't adequate for any number of reasons to reveal and help to identify/recognize what is causing symptoms. Or as we know from experience, the doctor has inadequate or inaccurate information that would to facilitate accurate diagnosis (and doctor doesn't know enough to question or know that they don't have accurate information). This may result in mistaken diagnosis or treatment or no treatment. That may be a form of malpractice more than discrimination. But mal-practice tends to lend itself to being a co-factor/co-condition with discrimination and forms of abuse that could be considered forms of medical abuse that is discriminatory because it tends to be directed towards those who are disabled with rare conditions who physicians discount and use hostile attitudes behavior that they would not or don't use with people/patients who have common, familiar conditions that physicians are comfortable with because they can readily give a diagnosis to.

NOT addressing malpractice. The Human Rights we are addressing as ‘discriminatory’ is behavior expressed by attitudes, actions and being treated differently and denied equal treatment by some in the medical community towards many of those who are disabled by physical incapacitation due to rare and hard to diagnose disorders. (This kind of mistreatment probably is also exhibited towards those with some mental compromise/capacity) There are too many examples of the medical community not being held accountable and allowing themselves/each other to behave in discriminatory manner towards those disabled by rare health conditions. This isn't about having a doctor  'dismiss' person who is having physical symptoms/dysfunction without being able to identify the cause other than to say that since "can't find anything wrong to explain symptoms" (despite significant signs that something is wrong and not normal) or discharging from the ER because in their opinion they feel they've adequately ruled out imminent life-threatening (primarily stroke/heart attack). The form of Human Rights discrimination that we are concerned about is focused on the both the intentional use of behavior/attitudes/actions by some doctors and others in medical community towards those disabled by conditions that due to being rare seem to mistreated and are not being treated with dignity, respect and are given a different quality of CARING being extended to those with what doctors must believe have a 'real' condition because they have a 'real' diagnosis.

Physicians can also too easily use explanation/label from a psychological perspective that they should not be able to use without proving they've ruled out everything else. (How can they with over 6 or 7 thousand rare diseases/disorders?). However, that still should not be reason for a doctor to behave in some of the despicable, horrific behaviors they aren't being held accountable for that is being disrespectful and discriminatory. And it is dishonorable to their profession. 

Until later...