If your doctor wrote in your medical record in the 1940s that you were mentally ill or had a neuropsychiatric disorder, this could have led to sterilization across most of the Western world, or in Germany to elimination. Long before a single Jew was gassed, tens of thousands of lives not worth living were eliminated at the hands of church-goers who were not members of the Nazi party – people like Hans Asperger.
If your doctor wrote in your notes in the 1950s that you were homosexual, this risked being a death sentence if you were running for political office. Having a successfully treated depressive disorder was a political death sentence for Thomas Eagleton in 1972.
There are all kinds of things your doctor might write in your notes today that could significantly disadvantage you in custody battles, in legal cases, when it comes to executing your will, or in getting decent medical care – especially if the diagnoses are psychiatric.
Just yesterday I was reviewing a patient’s records that contained diagnoses like hysteria. Several years later a prolactinoma turned up but the original diagnoses remained and colored care.
The problem with all diagnoses but psychiatric diagnoses in particular is that even when done well they are opinions. Very few psychiatric diagnoses are supported by tests of the sort that underpin diagnoses in the rest of medicine.
Mental illnesses are real but rare. Much less half the people who get a diagnosis, perhaps no more than a tenth, have an illness. But many people with little more than anxiety today can easily get labelled as schizophrenic – particularly if you respond poorly to the treatment you are put on when the system will always want to blame you rather than concede it might have made a mistake.
In America in the 00s, any hint of an emotional swing was liable to land you with a Bipolar Disorder diagnosis. The terrible twos in American children have been reconfigured as pediatric bipolar disorder.
Between changing fashions and just the general sloppiness of psychiatric diagnosis, the chances are that a very high proportion of those who come in contact with the mental health services have diagnoses in their records that could do them harm.
What are your chances of getting these changed?
Prompted by the case of someone, who had nothing more than anxiety but who ended up diagnosed as having schizophrenia and was pumped full of the gamut of antipsychotics and other meds which left her with significant side effects, I wrote to the Medical Protection Society (MPS) and Medical Defense Union (MDU) to get their take on getting medical records changed.
Part of the problem with current legislation is that it treats psychiatric diagnoses as equivalent to medical diagnoses in general. The view is that while a diagnosis might have changed there may have been a legitimate basis for its use in the first instance and it might even be important in future care for there to be a clear record that the diagnosis was used at one point.
What the MPS or MDU don’t seem to realise is that even if I write letters on behalf of my patient saying she was never anything other than briefly anxious and she has no problems now, the fact that a diagnosis of schizophrenia remains, or other diagnoses like borderline personality disorder, when the original problem might have been being beaten up by an abusive husband, when a court comes to consider the issues, a judge or magistrate is likely to make up his or her mind on a risk management basis and this hint of irrationality is often all it takes to deny a mother the custody of her child or other rights.
Once diagnosed, unless lucky, you may be close to fucked.
In the midst of writing to MPS and MDU, I had an email from a woman who got her diagnosis changed. Over the next few weeks we will run a series of posts by her on what happened.
After these posts run and any comments on them, we’ll try to sum up what can be done.