Medical Records, your copy!

As I was gathering medical records to send to the NIH, I thought I would share with you some lessons I learned in doing so. First I should say get copies of records from each appointment, test and surgeries as they come up. It will save you a lot of time and frustration rather than doing it later. There will be many different times you may need to look at these records. I know firsthand the importance of getting reports, I was never told my daughter had a huge nasal polyp which ended up needed to be removed within a few weeks; instead I had to read it in a report and contact an ENT. I also found out that they often don’t keep records and films past seven years. So I was unable to get echocardiograms that showed the progress of her Atrial Septal Defect. I’m now missing many of her records, had I known that I may not be able to have access to them later I would have gotten them all much earlier. You may also get some attitude from the person in the office, while other times you will have no issues. Sometimes there is a rather big expense when requesting records and yet other times there won’t be any charge.

I will summarize to make it easier to refer to later.

1. 
   Request that the reports be sent to you when they are being sent to the primary or referring physician. Then you will not be charged.
2. 
   If you weren’t able to request them at the time of service, then be sure to request them sooner than later. Remember they may be discarded after seven years without notice.
3. 
   It is your right to have access to your records and your child’s records, don’t let anyone make you feel like you don’t need the records.
4. 
   If there is a rather large fee that you can’t afford, let them know you can’t afford it. If that doesn’t help don’t stop there contact the next higher up to see what can be done about it.

Children with undiagnosed medical conditions have a lot of records and it can be rather important for someone to be very organized with the records, especially when the child is seen by many doctors. This can be a rather time consuming task, but it could be much less if you start early. At the beginning all I had time to do is jot down the dates, specialty, doctor’s name, tests if any and a quick few words on treatments or outcomes. Which I kept in a folder, then later I typed it on the computer and added to it as needed. Eventually I was able to keep a folder with plastic sheets to add the records. I keep the records by date of appointment and just refer to the quick list to find them if needed, others may choose to keep them by specialty.

I will again summarize for easy reference.

1. 
   Get started with something simple until you can get a hand on what will work best for you, which might change as you go along your journey.
2. 
   Keep a quick log of past appointments so you can refer to them as needed. This will help when doctors ask when you have seen a certain doctor.
3. 
   Get a 3 ring binder and plastic sheets to insert records as you get them. Organize by date, specialty or any other way that is best for you.

Here are some links for some print outs that may help you get started or make changes of what you already have. The link is from Children with Special Health Care needs and is called the Care Notebook. You can order a notebook or print out pages to make your own for free. Remember to start simple if it seems overwhelming. Choose something that best fits your situation such as; an appointment log, sick log or episode log.

http://www.cshcn.org/resources/CareNtbk.cfm#notebookprint