The Crisis in Complex Parkinson Care Is Real

03/17/2016

Parkinson disease is a complicated medical condition that presents differently depending on the patient. Different populations and environments experience Parkinson disease in strikingly different ways and the one million people diagnosed in the U.S. are dispersed unevenly throughout the country not unlike the physicians who are best qualified to treat them. Unsatisfactory clinical outcomes are everywhere, even among some movement disorder specialists. The obvious reason for this is that the disease is so complex that it’s presentation can be different in a large proportion of the patients in a physician’s practice. For example, on average only twelve percent of a movement disorder specialist’s practice is comprised of Parkinson’s patients. In fact, a consumer advocate website called amino.com includes movement disorder specialists who treat only one or two PD patients per week. This is not because they are incompetent physicians, but just the opposite, they are sub specialists in other diseases such as Huntington’s, Tourette’s or Dystonia. In addition, not all specialists are alike as some are responsible for the overall treatment of the patient and therefore will be listed as the treating physician by consumer advocate sites while others may have lower ratings that do not reflect the number of patients that they actually consult upon over the course of a year. Do your homework and ask for advice about who is the best doctor for your particular situation. 

What we know for sure is that high rates of successful clinical outcomes correlate positively with high PD case volumes. It makes sense that the doctor will deepen his or her level of experience as the number of cases he or she treats increases. Commonalities come to light, even in some of the more rare presentations of the disease. Extensive continuing education is, of course, a given. We need to find more ways to support high volume, specialized clinical Parkinson practices to serve those patients who require diagnosis and maintenance treatment that includes ParkinsonNet-style multidisciplinary services. As the founder of Parkinson charity, Neuro Challenge, I see humanitarian endeavors coupled with community and business collaboration as the solution that can make this happen right now.

Today, multi-disciplinary Parkinson care from Centers of Excellence is available to about ten percent of the total Parkinson population. Another ten percent of the population is serviced by high volume, specialized physician practices like ours. The remaining 80 percent are managed by movement disorder specialists, general neurologists, internists and general practitioners. Some of these physicians are well versed in the disease but many are not.

Multidisciplinary, high volume, specialty Parkinson clinics require public and private financial support if they are to continue to provide excellent care and serve as examples for other clinics and local charitable organizations who want to improve PD care in their communities..

Eight hundred thousand PD patients in the USA do not have access to the quality care we have in Sarasota, Florida. Our view of our ability as just regular people is far too limited to allow us to believe that we have the power to affect disease and that we can allow that power to transform the way we treat disease. In reality, all the power is ours.

By Doreen T. Sutherland, MBA

Founder, Neuro Challenge Foundation for Parkinson’s

http://www.parkinsonsclinic.com/1/post/2016/03/the-crisis-in-complex-parkinson-care-is-real.html

List of Parkinson's doctors in Florida: 

https://amino.com/parkinsons-disease/doctors/florida/