My Presentation for Berkeley Conference on Proactive vs Passive Patients and Providers Giving Control (from a blog 7/2009)

I was so very pleased to be asked to present at the Chronic Pain Documentary Series Conference in Berkeley this past weekend (see yesterday's blog).  I was asked by the filmmaker doing the series based on my commitment to the concept demonstrated on Lumigrate's home page and my history of having been both a patient/consumer with fibromyalgia and chronic fatigue over the past 20 years and a provider.  The seminar I presented is titled 'Proactivity vs. Passivity in Patients: Occupational Therapy Paradigms" and I believe I successfully integrated the history of occupational therapy, my history as a clinician and a person who has thankfully learned to manage a chronic health condition with the help of a good team I've built around myself. 

Most people don't know what an occupational therapist is: We specialize in anything that occupies time and often are teamed with a PT who is working on the base exercises or mobility devices which we then reinforce in daily living tasks.  I've done everything from adapting eating utensils for a 107 year old man with vision loss to working on driving skills with people from 15 to 93 years old.  More recently I worked with people with neurological and chronic pain conditions and the 'occupation' of managing their health care appointments, which can be overwhelmingly complicated for people with complex medical issues and lots of appointments and information they have to group up on. 

People today are more aware then ever about nutrition, water, medications, supplments, exercise for themselves and their family and friends.  But many people really don't look at it as something worthy of such focus.  "If you have your health, you have everything" is an old saying that perhaps is more important today than ever.  So how is it that people overall have not taken ownership of their health care? 

I think it's because in the years when our current medical system, known as the 'allopathic medical model' was sprouting the legs it has run on for over a century, the public was not education.  Doctors were, and with the advent of the microscope and other scientific discoveries, we were finding out that disease was caused by 'pathogens.'  Doctors wielded incredible powers with their prescription pads and it truly was an amazing leap forward for humanity.  Think about the diseases people now are immunized for which previous generations died from and we don't even have to worry about! 

Insurance companies then came to exit, and when you think about what 'insurance' is, it means 'in case you need it'. Insurance companies are like any other system such as a family or business: they want to do right for their people and be healthy, which means make a profit. But today, with chronic illness in 45% of people in the United States and with people living significantly longer all the time, it's become necessary for them to cut back on reimbursements and that has caused providers and the consumers the same complaints: less time in visits and more paperwork hassles.  To add to the provider's dilemma, more people are uninsured, underinsured or have to be conscious of costs of tests due to deductibles.  It's made it much more difficult on providers.

And this is where I see both sides of the situation.  I see the providers I know working diligently, continually learning and doing what they can to address issues.  I know how much they care about their consumer/patients and I also know they have families at home and are trying very hard to balance busy lives.  I see people really trying to get education and I see the providers also trying to keep up with the burgeoning flow of medications, procedures and diagnoses.  Everyone is overwhelmed, and it's on a course to get moreso at least for a while.

So here is what I suggest: If you're a medical consumer, come to your medical appointments well organized and keep and bring with you your own set of information (labs, important notes and reports).  Put your pharmacy patient educaton, doctors phone and fax numbers ... anything YOU think will be helpful.  Take notes at your visit and bring and advocate if you think it would help to have someone else taking notes and being another set of ears for you.  Don't ask more from your provider than can be addressed in the appointment time and let them know you understand how busy they are.  By having a notebook of information, you might be able to provide them with copies faster and with less effort on their staff than their faxing away to another provider office, and you're then alleviating that other office as well.  

By showing them YOU are invested in your health, they will recognize your efforts and generally will appreciate it because it is the most common issue I hear from providers is patients are not 'doing their end of the deal'.  But how can they, when the system we are immersed in doesn't typically include us in the results of tests unless we think to ask for a copy to be mailed to us.  So in that instance, you'll feel like YOU are the center of the team and the lab is your consultant and your providers are advisors.  It probably took me a couple of years to get a team built around me and then something seems it is always changing -- a provider moves clinics or a contract or insurance changes and then you have to go back to the drawing board.  But it's a concept that has worked well for me and for my patients. 

What do YOU think?  Please email me through the website if you like, I like to hear what people have to say and incorporate it for the future. 

Tomorrow I'll be writing more about the other seminars at the Chronic Pain conference and then be bringing you up to date about what the doctors you see on Lumigrate are up to related to fibromyalgia and chronic pain -- it's exciting.