Organize Medical Documentation 
                   hardofhearingchildren.com by PAM Candlish MLS
"What did you say?" "Eh?" "WHAT did you say?" "MM?" "WHAT DID YOU SAY?" oh "PARDON ME!"

Organizing your child's medical information.

In the beginning, our medical files were organized by the family doctor's secretary, as the family doctor was the only person who was sent the results of consultations and tests. Reid's file at Sick Kids hospital was 2 feet thick after several days in the intensive care ward, and that documentation stayed at the hospital, and  was later put on microfilm. The doctors and nurses considered that medical documentation belonged to the doctors and not to the patients. They had cute little jargon  initialisms like FLK (funny looking kid), Most of a doctor's documentation time is spent using abbreviations to take a record which can be used legally, so it is painstaking work.

 

Verify the Information. If you see a serious error, inform the writer.

Reading the documentation which is the result of medical consultations from a specialist to a family doctor and confirming that it is correct is a important job for parents. The parents live with the child on a daily basis. Once they are over the shock of initial diagnosis, the parents acquire specific information about their child's problems and become quite literate at medical documentation, they certainly know enough to check for errors. If you do not know what a word means, look it up in a medical dictionary.


http://cancerweb.ncl.ac.uk/omd/

Initially we never had copies of testing. I found a way around this by having the results sent to my friend who is a psychologist, and she would pass the copy along to me. However it should not be necessary for parents to have an intermediary for documentation. The parents have the right to see any documentation. You can control this problem by not going back to specialists who do not include you in the loop. 

Paper records grow exponentially

Reid's files are now about 1 foot of filing space in my filing drawer. I use hanging files and tabs to indicate:

  1. Reid-Disability
  2. Reid-Doctors etc (this is a big hanging file with interior file jackets)
    -Audiology
    -Adaptive Tech
    -Drugs
    -Eyes
    -Neurology
    -Occupational Therapy
     -Psychiatrist
    -Psychology
    -Speech
  3. Reid-Education system
  4. Reid-Great stuff
  5. Reid-Handicapped Children's Allowance
  6. Reid-Human Rights
  7. Reid-Lawyer
  8. Reid-Ombudsman
  9. Reid-School-IEP
  10. Reid-School-IPRC
  11. Reid-School-ISA
  12. Reid-School Reports
     
      No original documents are removed from the files, except to photocopy.                           
                                 

a  Useful  Drug Chart

When I get a prescription from the pharmacy it has lots of warnings about the drugs. What with sick people in the house I designed a weekly drug chart which you can probably copy from this page, and make your own by multiple pastings.

Drug name:                                         OTC or prescribed by Dr.

 

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Improvement after  initial 8 hours? 24 hours?          With food or empty stomach

Side effects noticed:

Drug name: Caryz 30 mg once a day(1 1/2 tablets)  prescribed by Dr. Jeckyl for  PAM

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Improvement after  initial 8 hours? 24 hours?          With food or empty stomach

Side effects noticed: no longer cares about the housework.

 I put the first letter of the drug on the chart at the time it is to be taken, and X it by hand. If I forget, I can write a letter C at whenever I got around to taking the drug.  

Beginning a family medical history

 

Family History (fill in as much of this information as you can)

 Do not share this information with a data bank until our medical ethics have progressed to only using family history and genetics to help you, not the insurance industry. 

When you are sharing this information for the purposes of genetic testing, take all the personal names off from all generations. The history will still show the genetic problems, but cannot be attached to you or your child. 

This is the sort of information which should be kept in the family bible or safe deposit box, not in your computer, and certainly not at any website which is offering you free storage of personal information.

 

Paternal Great Grandparents Names             Dates      Problems      Cause of Death

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Paternal Grand Parents          Names              Dates      Problems      Cause of Death

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Paternal Siblings                Names                 Dates         Problems      Cause of Death

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Father                                   Name                    Dates       Problems        Cause of Death

 

Maternal Great Grandparents Names           Dates      Problems       Cause of Death

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Maternal Grand Parents         Names            Dates      Problems        Cause of Death

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Maternal Siblings               Names                 Dates      Problems         Cause of Death

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Mother                                    Name                 Dates      Problem            Cause of Death

 

Child’s Siblings                   Name                 Dates      Problems          Cause of Death

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 This is an idea of what to put in a list for a medical history. Once you have set up a table in your word processor, it is fairly simple to add new rows to contain new information.


Location
Date Specialist Documentation Diagnosis Recommendations
Hospital, (name)
Children'sCentre.
office
home
    from Dr._______ to 
Dr._________

date

   

It is easier to organize your files and records at the beginning, but usually hard to see the need.

Last summer I decided to rewrite my medical history so I could just hand someone a piece of paper which I know is accurate rather than relying on the foggy mind which has given birth four times etc, or trying to hear when my ears are not working. It was quite a job trying to remember events in the past which were quite meaningful at the time, but I persisted and managed to get it all on four pages....then we had a virus which wiped out that whole hard drive. So back it up better than I did.

It is a good idea not to store personal information in your computer or to make use of any web site which offers to provide storage for this information.

Another Form to List Important Documents

Impact of Physical or Mental Illness on Daily Activities

Handicap Diagnosed by
On-going Care Documents Enclosed In Layman's terms
medical terminology ____________
in year______
hospital name
name
profession
location
Document
name
date
more general terms


For example, here is a hearing problem presented in the chart.

Handicap Diagnosed by On-going Care Documents enclosed In Layman's terms
Deaf/Hard of Hearing
right ear:
profound sensorineural hearing loss
left ear:
mild to severe sloping sensorineural hearing loss
Diagnosed 1989
Shelby Audie
audiologist
Peacock Hosp.
Adrian Ears
audiologist
UXO
most recent audiogram
Adrian Ears 12./02/2003

UXO

cannot hear much, needs hearing aids and FM and assistive technology.
Cannot listen and write.

 
    - PAM Candlish 1 March 2003