With Pemphigus and Pemphigoid (P/P) the “captain of the ship” regarding your care is usually a Dermatologist. After a diagnosis is made, then perhaps there is an initial telephone call or letter sharing information with your primary care physician, but then what happens Do the various doctors involved continue to communicate regularly Do they touch base if there is a flare or new treatment being used Do they all get results of medical tests and blood work Or, as so often has been observed, is everyone flying solo
Sometimes the “system” encourages or discourages the dissemination of information. For example, psychologists are generally required by insurance companies to send an initial letter to a patient’s PCP and sometimes others involved in the person’s care. The letter makes clear that coordination of care is important in the treatment of the patient. At times that letter is the only communication, but more often there are shared phone calls and faxes regarding essential information.
Under other circumstances care is coordinated only if a problem is detected. For example, women are used to going for a gynecological exam yearly and for mammograms after a certain age. If no problems are detected the exam or test results are likely not shared, unless the patient does so. If a problem is noted, then the wheels go into motion for sharing findings, which are often life-saving. This is true for colonoscopies and other procedures as well.
When the diagnosis is common, like heart disease or cancer, there is usually a protocol in place, with specialists working together to ensure coordination of care. However, with a disease like P/P, do the doctors, dentists, dermatologists or others involved in specific areas actually communicate How can the patient or caregiver ensure that information is being shared, or even being recorded How can the patient or caregiver help
One of the ways a patient can try to encourage communication is to be clear in asking for everyone to be updated. When getting medical tests or lab work/blood work, request that all of your doctors receive a fax or copy of the results. Provide each of your doctors with a sheet naming your other doctors and sharing their fax and phone numbers. Even if the recipients do not see it immediately, which they may not, the record will be in your chart – which will continue to get thicker. Furthermore, if you are made aware of a test result which is NOT within normal limits you may want to contact your other doctor’s offices to make sure they are notified of the new finding. This will empower you to be your own best advocate.
Some people change doctors and dentists if they believe that their concerns are not taken seriously, many have changed because of the belief that they were not being treated as a whole person any more. It will probably be important to remind your doctors that you are a whole person, and that with this one uncommon diagnosis you also have, other issues that may be either separate or interwoven. Often symptoms (such as dry mouth or joint pain/fatigue) are blamed on medications prescribed and sometimes these are bona fide symptoms.
All of your doctors (and dentists) can be given a complete list of medications and doses for all variety of conditions you may be treating through other professionals. Keep a copy and change it as necessary to keep it up to date. Also, carry a copy around with you. If you are part of Medic Alert, they will keep the list up to date for you if you just call in any changes, don’t forget to let them know. It is good to keep a record of allergies and allergic reactions to medications, also. This just may save your life.
Lastly, please remember that you know your body and how you feel better than anyone else even though you do not have a medical degree. You may note that certain things prescribed by one doctor seem not to fit with what you’ve heard from another. Pay attention to the details of what treatments seem to work or feel better than others, listen well, ask questions, remind your busy doctor to review additions to your chart and tell him or her of your visits to other doctors and their changes in advice. In closing, please remember to be your own best advocate and to find answers to your questions. You may not be totally in charge, but at least you will not be a passenger in your health care and life.
(I would also like to thank the writers of the television show House for having Dr Gregory House peel an onion in a patient’s room at the end of that one episode last year! – Terry -)