I recently wrote a blog entitled “Trust me, I’m a Doctor” which was a genuine attempt to say that we should try to work with our Doctors. However, I also covered the issues that Neuroendocrine Tumour (NET) patients face in finding someone who understands their disease and how best to treat it; and that can on occasion lead to issues with doctor-patient relationships and communication. The blog then commented on a number of tips for better doctor-patient relationship and communication. These tips were provided by a Doctor via my friends in Cancer Knowledge Network.
In the blog above, there was an underlying theme indicating certain cancer patients might need to know more about their disease than would be considered normal and that can influence the nature of the doctor-patient relationship. I certainly believe this is the case with NETs and is indeed something evident on most forums. I’ve touched on this subject a few times including a much earlier blog entitled Passive patient or active advocate? As I said in this article, whilst I have a great medical team, I also like to be my own advocate and this means understanding what medical people tell me! I have no intention of becoming a passive patient anytime soon! I realise this is not for everyone but I know some patients have others functioning in this way on their behalf. That’s fine too!
I spotted another excellent discussion article on Cancer Knowledge Network and although the context is patient advocacy at committee level, I thought it applied nicely to many scenarios including the most simple one where a patient decides to learn about their disease in order to better represent themselves at meetings with their nurses, doctors and specialists.
The author, who is both a Doctor and a Patient, describes 5 myths about the usefulness of patients that can sometimes be present within medical circles . I actually believe the patient is the most underused person in healthcare and so I found myself nodding my head to much of what she had to say. Let me know if you were nodding too 🙂
You can read the article by CLICKING HERE
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P.S. I will be keeping my stuff indefinitely!
Hi Ronny, Can you write a post about how to best keep all of our years of health records organized? I started out with an accordion file to bring various CD scans and notes to my doctors, but I’ve since outgrown it. Now I’m unsure what I can or should dispose of as dated or old materials. I can’t keep it all indefinitely, right?
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I think we all have our different systems and different countries have different health systems – so it’s a pretty awkward blog post for me. I’ll try to dig out something for you. Is there a specific problem you have?
Just was wondering if it’s best to keep everything indefinitely? I’ve been contemplating qualifying for disability income here but understand it is a process. I had primary tumor removed from ileum but have mets in my liver, apparently too many to surgically resect, although I haven’t been to a Specialist yet; they’re all out of state.
I get monthly Lanreotide shots & seem to be stable.
I’m single with no other income to fall back on if I have to stop working for next surgery. I guess that’s the reason for Disability income qualification.
So if there’s a good way to keep medical records organized, I just thought I would ask. I was Dx in Aug. 2012 and have just filled up a big 3 inch thick 3 ring binder already.
Sheri in Virginia
I don’t really know much about the US system but clearly you do need to keep medical records for a number of purposes. I don’t there’s any right or wrong way to be honest. I have two folders and inside each there are dividers for different subjects. One folder is where I keep all my tests and daily diary and the other is all letters from specialists including scan results and appointments. There’s an app for some of this on the CCF site for those in US. Best to see a specialist because they may not think of it as a ‘too many’ situation. Debulking surgery is common. Good luck Sheri
Ok. Thanks Ronny for your feedback. Hope you’re staying stable too!
God bless you.
Yes, let’s hope so. I’m speaking to 80 Ipsen managers tomorrow!
Oh, yes I forget. I’m on Lanreotide too. Glad they make it, wish it was less expensive than $8000. Our stupid healthcare system…
Hope you have a nice talk with them. Will be interested in your comments.
I’ll mention it!
Another wonderful and relevant article. As an RN and a patient, I sometimes feel as though some of my healthcare team expects me to know everything that they are talking about. I bring my husband as my advocate because, although he is a “layperson”, he asks the questions that we need the answers to and the healthcare providers give answers that he can understand and I don’t need to “translate”. That always works out in my favor because I may not actually understand the complexities of every thing they are explaining.
As with many things in life you can get snow blind when you have your head buried in some project or other, and it can often be who you consider to be the least likely person to know anything who states the obvious. After all, patients and carers are the end user😉
Reblogged this on Tony Reynolds Blog and commented:
How to take ownership of your health