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Wednesday, 15 January 2014

Is Seeing the Doctor 400 Times Too Much?

This is a cautionary story of how it can be expensive in time as well as money to know too little about your own health and treatments.

The 400 visits in the title is what it is because for seven years I went to the doctor's office for weekly injections of methotrexate. Year after year I dealt with snow, rain, ice storms, paying for parking, dealing with the difficult receptionist and wasting time waiting. The only positive side is that I now know my doctor very well.

After that endurance contest I can say that for me the biggest advantage to being involved in a clinical trial was a conversation with a trials nurse who said "Why aren't you doing the injecting yourself?"  A classic "Had I But Known" was my answer.  If I had had the faintest hint that I could have been doing it on my own I would have.
This author was one of the queens of the HIBK (Had I But Known) genre

That marked the last time I had someone else take care of my injections. Now with social media, people who are connected to other patients can find that answer much faster than I did.

Thinking of how many hours I wasted and how much money it cost the health care system was enough to turn me into an advocate for change. This number of unnecessary visits is a healthcare horror story. The lack of a short conversation not connected with direct symptoms, and a patient who didn't know enough to question the status quo produced this result. 

Now I aim to be an empowered patient capable of managing most of my care with a minimal amount of help.
After making a major long term effort to educate myself, to learn more about my health issues and to find out how the healthcare system and people in it work I can manage this with some help and support. 
Patient centered care

A source of support I found in addition to my doctor is patient communities. They have been a good source of reliable information. One group I've been in for ten years has many experienced patients whose stories are similar to mine. As an example when I asked them about effective treatments for mouth sores they had good ideas. I suggested one of these to my doctor and although it was new to her after looking it up she prescribed it - a great choice and it worked almost overnight.  It helped me to feel that I am now able to collaborate with my doctors. 

The old me would have meekly gone home and tried the mouthwash she initially suggested that was actually contra-indicated because of my Sjogren's Syndrome. That would have led to a repeat visit. 

Things are working well now but I fear starting over when my doctors retire (all of them are over 64) and I have to build new relationships. 


Authentic Beatles Pencil case (When I'm 64)


4 comments:

  1. When I was on methotrexate in the early 2000s, was told that due to the toxic nature of the medication, I doctor had to inject it. These days, I still cost of healthcare system money, because I don't have the manual dexterity to inject Humira myself.

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    1. Maybe my visits were not as excessive as they seemed to be in hindsight. This happened in the 90's and early 2000's.
      So far the biggest problem I have in doing it myself is getting the caps off of the needles. Now that I have jaw trouble I don't want to use my teeth for anything except chewing

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  2. This is such a great post Annette. I think one of the most valuable lessons I've learned in 22 years of living with RA is that of becoming empowered, knowing what to ask and when & when to question something and maybe suggest an alternative.
    I'm about to try a new med, to replace my current one but I still feel in control because I told my GP that I'd try it on condition I can switch back if I'm not happy. She knows I'm capable of playing with my dosage to see if I can get it to work for me and if not then she's happy with my choice to go back. Years ago I'd have just taken what they gave me without question or knowledge of what questions to ask. Not anymore thanks to my patient community, I've learned far more from my friends there than I ever have from my medical professionals who simply don't have the time to go over all the little things that count. I'd not have known about injectable mtx at all if it weren't for them!!

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    1. Hard to believe how fast the time goes by - 22 years! It's so much better to collaborate and play a lead role in your care.
      I agree too that it's best to iron out the details of "the plan" before changes are made. I have a new drug also and put off the serious trial until after the holiday.

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