Very recently, I was supposed to offer testimony to the IOM. This group is looking into epilepsy and how best we can help persons with epilepsy. So, they have formed a series of meetings and have invited everyone with an oipinion to step forward and offer suggestions.
There is a terrible gap in the quality of care owing to a lack of comprehension about epilepsy. The phrase “a commonly occurring
neurological disorder” frequently leads laypersons and professionals to
assume that epilepsy is not serious or dangerous to the patient. A more
refined amendment to approaches in medical school education would
benefit patients of all ages, and might make general practitioners and
neurologists more comfortable treating their patients with epilepsy.
Within the past ten years, I have been told by neurologists that “It
could be worse, at least epilepsy can’t kill you” and “Well, we’ll see if you
really have epilepsy: I will take you off all of your medications, and then if
you seize, we will know for certain”. During the same time, GP’s have
suggested that a tonic-clonic seizure has not occurred unless it is
accompanied by urination” and “It is very easy to fake epilepsy. Some of
you people do it for the attention.”
Clearly, these are physicians who are behind on their reading and
who might benefit from a specific educational approach. Initially, I would
suggest a survey into the Attitudes of Physicians toward their Patients
Because physicians can, by their personal attitudes, enhance or
diminish stigma to epilepsy in the community and within the family, they
are also central to quality of life issues. Additionally, physicians with poor
knowledge of epilepsy often have the tendency to view this disorder
according to the germ theory model. They become easily frustrated when
they cannot fulfill their own expectations to find a cure for epilepsy; this
can breed hostility between patient and doctor.
It is also important that health insurers be more broadly introduced
to the neurological sub-specialty, epileptology. The diagnostic codes and
data used to make referral decisions for patients could be smoothed if this
category were supplied to them as a legitimate category in neurology.
So it seems that I am speaking about the need for a more intensified
educational approach, not only for the public at large, but also for the
professional population as a whole.
Treating epilepsy can be as frustrating for doctors as it is for
patients. Still, passing along bad information or resorting to cruelty is not
an answer. A cardiologist would not suggest taking a new heart patient off
his medications to see if he would have a heart attack to confirm a
Perhaps one of the more ridiculous “cures” ever provided happened
when I was a child. In about 1960, my mother went to see a neurologist.
She talked about me with the doctor, describing my condition in detail. She
mentioned to him that I had long red hair and that she brushed my hair
every morning. She told him that I frequently seized during this process
and more than once, it had triggered status epilepticus. He thought about
what she told him for a moment then concluded that it was my hair that
was the problem. My hair, he told her, was too heavy for my head and
should be cut short to relieve my seizures. She cut my hair off that very afternoon.
So it seems that I am speaking about the need for a more intensified educational approach, not only for the public at large, but also for the professional population as a whole.
We have all learned a lot in the past 55 years of studying and living
with this disorder. I can hardly wait to see how much more we can change