Following and participating in threads discussing care giving for persons with Huntington’s Disease for some time, it is evident, to me, there is one common issue we all deal with – lack of knowledge and understanding of HD at the local level, the primary care provider. In a recent thread, a care giver pretty much summarized what we face - “Do others find the "let's fit HD" in "this" box mentality? The almost seemingly, well, this is a terminal illness with no apparent hope for a cure on the horizon so we will do what we can when we feel like it?" I actually had a medical practioner (sic) tell me today that the best thing for some one pHD is to start the hospice care from the positive diagnosis. REALLY???!!! What small minds!! And these are the ones we count on to help guide the course of the health care!!!”

Not an easy nut to crack. Some education efforts by the community have been made – “The Physician’s Guide” is a step in the right direction. Physician to physician webinars – good idea, no so good when scheduled in the middle of a work day or in the evening during personal/family time.

It may be time to take the problem to a higher authority. The era of the independent doctors’ offices is over. In the south of Maryland, the MedStar conglomerate has taken over local hospitals, emergency care offices and medical groups – meaning most of the primary care community works for MedStar. What if MedStar said – there will be continuing professional education sessions on Huntington’s Disease once a month for the next six months – followed by discussions about HD patients seen by various doctors and medical specialists – attendance will be taken. Then the primary care provider will participate because the boss says she will. An organized approach, by professionals with HD credentials, to the MedStars of the world will determine if this feasible.

Just a thought from the south of Maryland,

Fred Lothrop