Posted on May 13th, 2011 by Sherri Woodbridge in
Searching for a list of Centers of Excellence, such as that of which I happened upon when searching for my missing Movement Disorders doctor (he knew where he was, however I didn’t), I came upon a government listing for these centers which fascinated me.
The NINDS, otherwise known as the National Institute of Neurological Disorders of Stroke, is an organization that has a mission to minimize the burden of neurological diseases, such as Parkinson’s disease (Young Onset Parkinson’s Disease included), Dystonia, Multiple Sclerosis, Cerebral Palsy, Alzheimer’s, etc. These diseases, as stated by the NINDS, are diseases that are non-discriminatory and are ‘borne by every age group, by every segment of society, and by people all over the world’.
Part of the mission of the NINDS is to support research on Parkinson’s disease. This program was started to honor former Arizona congressman, Morris K. Udall.
Mr. Udall was elected to the House of Representatives in 1961, replacing his brother who went on to become an integral part of President Kennedy’s staff as the Secretary of Interior. Although Morris Udall remained in the House of Representatives for almost thirty years, he had been diagnosed with PD for 12 years prior to retiring. It was only seven years later that Udall passed away, in 1998, presumably from complications from a long battle with PD.A year prior to his death, President Clinton signed the Morris K. Udall Parkinson’s Disease Research Act of 1997 into law.
According to the National Parkinson’s Foundation, centers worldwide “deliver care to more than 50,000 Parkinson’s patients; create a community of health care professionals dedicated to Parkinson’s care; and work to advance a comprehensive approach to care that addresses the whole person and full range of symptoms.”In order to accomplish this, the movement disorders team must fulfill a list of criteria, which in turn leads to these specific centers being recognized by their medical peers as ‘leaders in PD care.’ This criteria includes:
In addition, the National Parkinson’s Foundation says they have all centers come together at least once a year to bring them the latest information on ‘care activities, research initiatives, and it provides funding so that the medical director and nurse coordinator of each center can participate’. Each center is also required to be re-certified every three years, which includes looking at the achievements accomplished by the individual center. This review is done by a peer-review committee, as well as NPF staff.When I finished reading about this, I was amazed and thought how well cared for the patients are that have the ability to see a Movement Disorder Specialist in one of these centers. I think one of the main reasons is, there is accountability within these organizations, which leads to a greater degree of integrity. What does that mean to you as a patient? You are better cared for, are not having to go from one doctor to another to find a good one, and the care you receive should be, according to their mission, top quality.
I happened upon a Center of Excellence due to the fact that my doctor ended up at one. I didn’t search for one. I didn’t even know they existed until a year ago. I do now and I can vouch for them, that they truly are – Centers of Excellence. If you have not visited one or heard of them, I recommend that you see if you might be near one. If you are not satisfied with the care you are receiving, feel your medical team may not be up to date with the latest care for their patients, or just want to see if a change in care is warranted, give them a call (see listings below) and see if it’s a fit for you. It’s definitely worth the call.
Centers of Excellence (Listed alphabetically by state, then by International Centers of Excellence)