Personally, I think this is a huge issue with my care.
Put simply, my doctors don’t talk to each other. I know this because I end up being the one to fill each doctor in on the appointments I’ve had since last seeing them (which tend to be a lot).
Now, I’m not saying that’s necessarily a bad thing. It’s good. It makes sure that I am on top of my health, which is as it should be.
But when I am seeing three different specialists, plus my general practitioner, and the various support staff that I encounter at pharmacies, labs, and outpatient clinics, it isn’t easy for me to facilitate this communication on my own. Plus, I’m not a doctor. I don’t understand exactly everything that they tell me, and there are things, also, that I don’t get told about directly.
At this point, I’m lucky if the report from one doctor is sent to the correct (other) doctor.
I know that having your medical team communicate is an essential task when you have an illness or set of illnesses that warrants multiple doctors and long-term care, but I don’t know how to do it.
I think that, overall, I’m fairly hands-on and proactive about my medical care, given my age and relative inexperience with the medical profession (until now). But this issue is a huge complex in my life. And I’m sure it is for others, as well.
These various doctors make up my healthcare team, and together, they should be committed to moving my care in the right direction.
Along with doctors talking to doctors, there is my job as a patient, being forthright and upfront about new symptoms and things about my care that I don’t understand. And overall, I think I do a pretty good job of communicating with individual members of my team.
But I’m not one of those patients who has been in the system long enough to take my own vital signs and immediately know when something is a problem. I’ve only recently been able to really recognize a flare.
I guess it’s hard, too, when there is no real “leader” of this team. My general practitioner is extremely helpful with offering advice, but in terms of the care I receive, that mostly comes from my rheumatologist.
But I definitely feel like often times, lines get crossed between doctors and I am the one forced to untangle them. As one can imagine, this isn’t always easy.
So, other than somehow forcing our doctors to sit in the same room together and discuss our health care, how do we fill this void, making it as simple as possible for both patients and doctors?
If it's any consolation, you're not the only one with this problem. I have a hard time getting my doctors to talk to me - they never speak to each other. FRUSTRATING!
ReplyDeleteWell I have this problem but my problem is due to my general doctor who even though the rheumy has sent over the specific ANA test refuses to believe I have lupus. because this is "all in my head" and I must be "depressed". Hope you find a good solution to your doctor problems
ReplyDeleteSamantha sdeskridge@wichita.edu
EJ and Samantha, thanks for your comments! Yes, you both point out other aspects of this dilemma that can impede care, not to mention, are downright frustrating, especially when you are ill and just want to find something to make you feel better!
ReplyDeleteI had one Dr use informing the other Drs.punitively. He was so annoyed that I insisted that the gastro had seen an inflammatory nodule in my throat that he poked around roughly to have a look and then dictated a note to every Dr he could think of who I had ever seen in a very nasty way
ReplyDeleteAnnette, your experience sounds very unfortunate. I think sometimes, doctors, who have busy lives, mistake our genuine concern for our own health care as being annoying or too needy. I feel for you!
ReplyDeleteHi Leslie,
ReplyDeleteMy name is Justin Guild and I’m a graduate research assistant currently working with Dr. Jeong-Nam Kim (http://www.cla.purdue.edu/communication/people/jnkim.shtml) at Purdue University on a health communication study.
Specifically, our research explores how information sharing behavior through online communities influences coping strategies among people with chronic conditions including cancer, diabetes, lupus, etc.
I’m contacting you to seek permission to place a link to our online web survey on your blog to invite readers and other visitors to participate. The survey is purely academic in nature and takes no longer than 5-7 minutes to complete.
The web survey can be found by clicking on this link: http://www.createsurvey.com/c/70237-Os3LDl/
In the survey, we use the term “blog” to refer to any online activity where you might read or share information in communities such as personal web logs, internet forums, and discussion boards.
The findings of this study could lead to better management capacities of chronic diseases as well as an increase in funding for research related to online communities.
If you have any questions, or would like additional information, please don’t hesitate to contact me at jguild@purdue.edu.
Thank you for your time and consideration.
Sincerely,
Justin Guild
I have 2 suggestions, neither of which I've tried, but I thought they may help you.
ReplyDelete1. Get your GP/PCP to be your advocate and coordinate your care.
2. Get copies of reports from all of your doctors and bring them to see all of your other doctors. You're entitled to your medical records.
Good luck to you! This can be very frustrating, indeed.
Be well,
MJ
MJ, in response to your suggestions, I have a couple of comments. First, for a short time "we" had considered making my uncle my advocate because he is a retired doctor. However, he felt that it wasn't necessary. I'm not sure my GP/PCP would be willing to do it. Second, I do keep as close to up to date with obtaining my medical records. I have a giant binder that's pretty full. This has been helpful for some doctors, not helpful to others. One issue is that it is pretty troublesome to lug around with me to appointments. It's amazing how much medical paperwork you can accumulate in such a short time! But I do take it with me if I think it will be useful. Thanks for the suggestions!
ReplyDeleteI'm a breast cancer survivor and I have a heart condition that can be made worse by the chemotherapy I took and the radiation I received. I also have a rare endocrine problem that causes hypertension and a long, long list of conditions that were caused by treatments for other conditions. With 16 specialists, promoting communication between the doctors has been a time consuming persuit that is complicated by, as you pointed out, the fact that I'm not a doctor and don't have access to all the pertainent information, and often don't appreciate the relavance of the information I have. Some of the strategies that I have used successfully is 1. Choose the hospitals that I'd prefer to work with and then chose specialist that work at that hospital. They have access to each other's notes. It works as long as the doctors stay put, but I've had bad problems when one or more doctors move. 2. Ask one specialist whom he'd like to work with. It assures that they will feel comfortable talking with each other. 3. Giving each doctor a open ended information request form to the other doctors so they feel free to request the information that they feel is appropriate. and 4. Requesting that test results be sent to multiple doctors, even when the doctor hasn't necessarily requested the test. I've had my oncologist say "oh, I see that I have a head CT from 12/5." and I can say, "Oh yeah, I forgot. I was in a car accident and they did that one to check for a concussion, but I thought it might be helpful to you also." I've never had a doctor object yet. Even with all this my biggest complaint is that my specialist don't talk to each other. It's important that my cardiologist knows that I took 550mgs of Adriamycin with Cytoxan, but he won't if he never talks to my oncologist. And it's important that my gynecologist knows the results of the blood test I had last week at my PCP, if for no other reason than I won't get poked twice. So good luck with it.
ReplyDelete