Connections: The Belya Family


Aside from being Program Coordinator for NaviCare/SoinsNavi, I am a mother to 3 really fantastic young people. My oldest child (who is 16) has Angelman Syndrome, a genetic disorder which is responsible for him being non-verbal, not able to walk, having very poor fine motor skills, seizures, difficulty sleeping, and needing a feeding tube. Luckily, he has a very sweet and loving personality, which makes up for the sleepless nights :) 

As you can imagine, because his needs are so great, there is a lot involved in managing his care. While I’ve become quite organized (when I have to be) and skilled at managing the never-ending paperwork and everything with his specialists, I confess… I often get overwhelmed because it’s such a tiring process. This is why I know how valuable a patient navigation service (such as NaviCare/SoinsNavi) can be- even those with an established skillset for this still run into those moments of needing someone to “walk beside them” at certain points. 

I've got quite a number of tips I could share, but this is one I've found particularly helpful... 

Our Tips for Others:

  • When going to a doctor’s appointment, if you are making request/s of the doctor, bring anything IN WRITING that you can. Make sure everything is in point form (preferably numbered), and clear and easy for the doctor to skim quickly and know what you need. 
  • If you are bringing forth new symptoms or something that is needing a referral that is referring to symptoms, write out the symptoms that have been experienced, and bring the list. Make sure you put extra thought into this, so you don't forget anything. 
  • Don’t be afraid to make a “case” for why you need a referral to someone or for a service (working *with* your doctor of course). Again, bring anything to support this in writing. If you’re bringing information from the Internet, try to find strong resources that are evidence or researched-based. (Medical journals are particularly helpful. Include “journal” in your online search). 

Having everything in writing serves a few purposes: You have a clear record of what you asked for (keep a copy for your own records). The doctor can easily add it to the medical file. If she or he doesn’t have the time to look in depth at all the information while you are there, they will have it to refer to afterwards and can call you for followup. You also won’t have to worry about forgetting things while you are there, or have issues organizing your thoughts or priorities on the spot, because you've already organized it. (How many times did I miss that *one thing* before I figured this out??)

If you have difficulty expressing your needs or writing them, ask someone to help you before you go, then bring it with you. 
Happy writing!!