Words and links to mental support groups from Dr. Mike Goldstein (today at 10:00 PM)

[Memo To Me]

http://www.mpdsupport.org Unfortunately, all too often, we feel unheard, or even worse, dismissed by physicians who don't understand or value the importance of OUR knowledge, expertise, experience regarding our illness. Docs are not only failing to hear, connect and respond to the needs of patients; as Arch pointed out, docs who fail to engage and enlist the patient in care also miss, or fail to collect key information that is essential to diagnosis and treatment planning. This problem not only leads to anger, dissatisfaction and other justifiable responses (such as Edna's), it also leads to poor clinical outcomes. As a patient, I have had my own share of problematic interactions with docs. On the other hand, I have had some good experiences as well.

As a physician and teacher of other clinicians, my whole career has been dedicated to helping students and clinicians to appreciate the importance of using effective communication. We have a long way to go.... but I have not given up on trying.

Edna (and others)... we (clinicians)... need to hear you.... respect you... appreciate you.... and acknowledge your expertise... as well as respond to your needs. And we (clinicians) also need to take advantage of listserves like this one, as well as other ways in which patients can assist each other to address the problems and needs associated with having a chronic condition. Charlotte's advice to bring a family member, or other companion, to health care visits is a wonderful idea. It helps to have another set of ears, and an advocate with us to increase the chances that we (patients) will be get needs met and questions addressed.

I have found a couple of wonderful organizations and programs that are striving to enhance patients' capacity to manage their health conditions, as well as their engagement in the process of improving care. See the websites for the Institute for Family Centered Care (_www. familycenteredcare. org_ (http://www.familycenteredcare.org) ) and New Health Partnerships (_www.newhealthpartnerships.org_ (http://www.newhealthpartnerships.org) ). I have had the pleasure of working closely with both of these organizations and can vouch for their value to patients, clinicians and health care systems. You will find lots of good resources. [Robert.. there may be some ways that we can create links to these sites from our websites].

I would love to have the opportunity to serve as a source of support of members of this list who would like help forging effective partnerships with their health care providers. However, the best advice will come not from me, but from other members of this community who can share the strategies that have worked for them. Feel free however to write to me on the list as well as offline (_gold...@aol.com_ (mailto: golds...@aol.com) ). Since I am starting a new job on July
7th (Yikes... in less than 2 days)... it may take me a while to respond.

Best holiday wishes to all!
Michael PV since 1/2006, asa, phlebotomy

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