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Further Rationalization for Comprehensive Epilepsy Care

Posted Nov 04 2009 10:03pm
Well, it has been a long time since my last post. Hopefully people haven't stopped checking in!
I apologize for the hiatus, but having a baby means no sleep, which means no mental energy for blog posts.
My son is peacefully napping now, so I'm stealing a moment to post on something that is important to me: comprehensive epilepsy care. Well, not comprehensive epilepsy care specifically -- but some rationale for why we need comprehensive epilepsy care.

Epilepsy is a complex, multifactorial disorder
Sure, there may be some open-and-shut cases where patients are seen by a family physician, given a first line anticonvulsant drug , become seizure free and go on to lead a relatively "normal" life.

For more than 40% of individuals with epilepsy, however, this is simply not the case. There is generally a long list of drugs that are tried over several years with limited success. Many of these individuals do not get to see an epileptologist - someone who specializes in the diagnosis and treatment of epilepsy.

To ensure that everyone, at the very least, has an option to see a specialist -we need a formalized system whereby patients are referred to see a specialist after they fail one or two anticonvulsant drugs. This would be a critical element of a comprehensive epilepsy care system -- a formalized primary care physician engagement strategy.

Uncontrolled epilepsy costs the healthcare system a lot of money
The comprehensive epilepsy care centres in some American cities ( are a great example of how we can improve the quality of care, improve the quality of lives of those living with epilepsy all while spending less on epilepsy care!

In 2001, the Canadian Institute of Health Information estimated that the total cost of epilepsy (in Canada alone) was nearly $800 million dollars. The direct costs were nearly $100 million dollars, with half of that for hospital care and the remainder for physician care and drugs. The major expenses, however, are not directly related to the cost of epilepsy care -- these are the indirect costs of epilepsy, such as lost productivity. These costs were nearly $700 million dollars! These are the costs that tend to be associated with individuals living with uncontrolled seizures.

I'm a lover of analogies - so here we go. If you have a problem with your car you take it to the mechanic. If the issue is complex, the mechanic may be able to narrow the problem down to your transmission, but he may not be able to pin-point/solve the problem. You can go visit a series of other mechanics who may or may not know more about your complex issue. The costs of these repeat visits add up. Or, maybe you decide to simply park the car and rent a car or quit work so you don't have to travel. All which compound your expenses and don't solve the original problem. Finally, you could take your car to a transmission specialist who, through training and experience, can likely pin-point the issue and what the best options are to remedy the problem.

Of course, in Canada we as patients don't have to worry about the cost of the specialist vs. the generalist -- but the government does in its attempt to best use the tax payer's dollar. So an argument that seeing the specialist is the most economical while ensuring the highest quality care is an essential component to proposing change in the way we currently conduct our health care services.

This is the argument that we are currently formulating. It is fairly complex, but there is little doubt in our minds that increasing access to specialized epilepsy care will cost less over time while improving the quality of care and, in the long run, improving the quality of life for those living with epilepsy.

So, stay tuned and get involved in your local epilepsy chapter. Our case for comprehensive epilepsy care is strong, and soon we will convince others that this is the only way to move forward.

Those are a few thoughts on a cloudy Saturday morning.
I hope you are all well.


Reference: The Burden of Neurological Diseases, Disorders and Injuries in Canada.
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