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January 9, 2014

Need a doctor? Be prepared!

Through routine screening, I've learned that there is a strong suspicion that I have cancer. If true, it was found at the optimal time - when it was very small and very treatable.

While waiting for results, I've been doing a lot of research online so that I would have information to help me make an informed decisions. One site I found has a discussion board of other people who are waiting for their diagnosis. I skimmed through some of the posts and found that nearly every person experienced exceptionally long delays in learning the results of their biopsy and exceptionally poor communication from their medical team.

This was my post in response to these threads:
The problem(s) you describe - the delays in notifying patients of test results, the poor communication, the fragmentation of patient care because we divide the individual into a myriad of systems to be treated by a myriad of specialists - is endemic to our medical system.

A close relative had a wicked case of pneumonia which led to an 8-day hospitalization and a seesawing recovery that lasted for months. He was treated by a series of specialists: an urgent care clinic physician, an emergency room physician, several hospitalists, several infectious disease physicians, a pulmonologist, a PCP, and an interventional radiologist.

Even though I'm a nurse, and even though I was with him every day and for every appointment... even though I was a knowledgeable and persistent advocate... I found the lack of follow-through and communication to be absolutely deplorable.

Now that I'm going through my own medical issues, I find myself starting every conversation with a new practitioner with a description of the problems we had with poor communication in my relative's case and an insistence that I know when to expect information from them and how to reach them if I don't hear by then.

I don't know how to fix this problem - it's so widespread in our medical system - but I know that first-hand experience with it had influence my practice as a nurse and my actions as a patient.
Having an illness can be very scary. Waiting for answers can be even more so. But over the next few days, I'm hoping to provide readers with some thoughts about how you can be your best health advocate.

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11 comments:

  1. I am sorry to hear that you're facing a medical crisis, but am glad that you have caught the problem early on. I will certainly be praying for you in the coming days for complete recovery. I hope you find comfort in the fact that you are in the Great Physicians hands. What better care is there than this? Hugs to you, my friend!

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  2. You will be in my prayers.
    Anything you come up with would have to be helpful.
    People need to insist on answers!

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  3. I can relate to this post so much. I am pray your results will be cancer free.Thank you so much for helping to make the Thursday Favorite Things blog hop so much fun Hugs!

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  4. Hari OM
    Yes - sometimes being IN the health industry makes it scarier...

    Thinking of you and praying for positive and speedy outcomes. YAM xx

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  5. Praying for the best for you. We moved about a year ago but am afriad to leave our doctor because of other people's stories of their health care experiences. I think it's really hard to find a practice and doctors you trust and feel you have a strong communication with. I found on from the Season Blog Hop. I'll follow with GFC. Again wishing you the best.
    Angela @ Time with A & N

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  7. Feeling bad to know that you may be suspected to have a tumour and I am sure you are not. I pray everything will be alright and thanks for sharing your experience with Four seasons blog hop. Take good rest.

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  8. Hoping for the best of news with your results!! Thank you for linking to Super Sunday Sync!

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  9. I can be frustrating sometimes and easy to lose faith and trust in the medical profession. I don't think it will ever be perfect, but thank god we have it, something that we take for granted at times. Wishing all the best with your health concerns xxx

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  10. Sorry to hear about your health issues. Cling to Jesus!!

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  11. I am sorry that you are having medical issues, but want you to know that you are spot on in asking so directly for good communication. I had never been to a doctor except for pregnancy until an auto accident quite some time ago. I was shocked at the lack of communication between multiple providers and, later when I obtained copies of my records, at the downright misinformation that had been included. Computerization does not help as it is an automated process with no real communication. I accompanied my husband on one critical visit where he was asked the same question by three different people who put the information on three different computers without making eye contact and were not interested in any additional information he had to offer --"the computer does not want that information". And guess what -- it turned out to be significant. You go girl! And best wishes for your outcome!

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