No. 4 Issue:
“The medical community is not always properly trained about how to inform and educate people about epilepsy”(Statement #9)

This statement was ranked the number one issue by 11.5 % of respondents. Respondents in Quebec and Newfoundland had the highest level of confidence in their physicians, while respondents in Alberta were least likely to feel their medical personnel were properly trained. Respondents in Alberta also expressed a desire for alternative forms of treatment, which may be related to dissatisfaction with the strictly pharmaceutical approach taken by most doctors.

"Some doctors seem to have reluctance [to deal with] epilepsy and have difficulty with the issues. They often have less understanding of meds and levels than the patient."

"We need better medication and programs for individual patients and how the medications affect them. Doctors need to be more knowledgeable and work more closely with the patient."

"Some medical people do not know how to handle people with epilepsy without panicking."

"We went to the hospital for help and no one knew what to do."

"Most doctors do not know a lot about epilepsy."

"Misinformation from doctors puts up barriers."

"Even my neurologist is not a ‘good’ informant."

"How are families to deal with this disorder when doctors can’t explain it?"

Many of the comments directed to this statement made it clear that people with epilepsy would like more from their doctor than a prescription for medication. They would like to discuss other issues they believe to be related to seizures such as medical side effects, work-related limitations, social functioning, attention and concentration problems, memory difficulties, emotional problems and energy levels. The comments around this response also suggest that many people not only believe that doctors are poorly equipped to educate others, but that they, themselves, lack knowledge. We cannot know for certain, however, how this can be improved.

Medication therapy may not be a very satisfying approach from the patient’s point of view, but may well be the best approach to control most people’s seizures at present. Likewise, we know that the treatment of epilepsy carries with it some uncertainty. Perhaps some respondents feel their doctors lack knowledge because the doctor has tried to express that uncertainty by way of explaining the treatment, as in “I think this medication will control your seizures, but we’ll have to see how it goes.”

Lastly, we don’t know for certain how many of the respondents had neurologists, general practitioners or other medical personnel in mind when they answered the question. Certainly, some are better acquainted with the treatment of epilepsy than others. None of the foregoing, however, diminishes the impact of respondents’ beliefs about their doctors’ performance. According to this survey, many medical people need to do a better job of “treating the person,” making sure that their patients have all the information they need, and imparting a feeling of confidence about the treatment plan.

No. 5 Issue:
“People with epilepsy are more likely to be under-or unemployed”(Statement #7)

This statement was regarded as the top issue by 10.5 % of respondents. Again, we cannot look at this issue without seeing its interaction with all other issues deemed to be important by the respondents. Employers’ perceptions of people with epilepsy, medications and their side effects, and the ability to drive all have direct impacts onemployment and employability.

Perhaps the greatest issue is perception (it was certainly chosen first among the survey issues). Even if employers do not view the person with epilepsy as “crazy” or “evil” (as sometimes happens in movies or TV programs), they may respond to other common myths, believing that people with epilepsy are mentally disabled or prone to violence. More subtly, the employer may simply have an idea that the job is too dangerous or challenging for the person, due to distorted views of how often seizures occur or what seizures are like.

On the other hand, people with uncontrolled seizures face the challenge of maintaining sufficient control such that they can work regularly, and in finding employers who are open to accommodating people with epilepsy in the workplace. True, Human Rights legislation demands these accommodations, but legislation may simply drive prejudices underground unless we can build a more positive image for employers.

"Daughter now a middle-aged adult and is unemployed."

"I would like to work but am too drugged up all the time."

"Employers don’t want to hire people living with this disability."

"Misconceptions based on myths often perpetrate the notion of below average intelligence when in reality - more often than not - the opposite is the case."

"Teenager with epilepsy will not tell those he works with."

"People with disability should not be prejudiced against if they can do the same or better job."

"I want to work..."