Parents
need to make sure that the details of medical events occurring for their child
with special needs are correct. This is
particularly important during hospitalizations, when changing health care
providers, or transitioning to adult health care.
How to keep records
Parents
should keep brief notes of visits and especially bring a small spiral notebook or
online if they have access during hospitalization. They should also get “clinical summaries”
after appointments and have their child’s PCP (primary care physician such as a
pediatrician) copied. Family caregivers
can request copies of other records, such as hospitalization, from the
department that cared for their child such as gastroenterology etc. If the child has complex needs, families may
have to get records from each department.
In addition, parents can request results of testing such as x-rays from
radiology and any procedures from surgery.
It is important when getting surgical records to also request pathology
reports (results.) It may also be a good
idea for the child to wear a medical id bracelet that has all of their basic
information on a flash drive.
Photo www.nymetroparents.com
Making sure records are correct
Parents
can compare the doctor’s notes with their own.
It is vital that any major events such as “coding” and needing to be resuscitated
are documented correctly. Correct
records will result in better care and inaccurate records can have negative
implications.
What to do if records are inaccurate
Families
can discuss the record with the appropriate department that treated the
child. Sometimes, older records can’t be
changed in the computer system. However,
parents can ask to have the record “amended” which means an additional note
will be attached to the record to clear up any confusion. Families should request a copy of this
additional record in writing. They can
use this not only for their child’s medical history file but also for new
health care providers who are just learning about their child.
Photo www.venturebeat.com
Why good medical records are so important
Inaccurate
medical records can adversely affect a child’s health care. For example, pulmonologists and neurologists
would need to know if a child went into respiratory distress during a
seizure. Nursing staff would need to
know of infections that the child acquired in the hospital such as urinary
tract or c-dif (clostridium difficile) infections to which the child wouldn’t
otherwise be susceptible, and take precautions.
Surgeons and anesthesiologists would need to know if a child had to be
reintubated with a breathing tube after a procedure. When children are have complex needs or are
hospitalized, they may have many providers, so these details will help prevent
adverse events.
Families
can ensure that the medical information being shared about their child is
correct. This will result in better
health care and better outcomes for their child.
Resources
American Academy of Pediatrics-Build
Your Own Care Notebook
Exceptional
Children’s Assistance Center-Care Notebook http://ecac-parentcenter.org/userfiles/F2F/Care%20Notebook%20FINAL%20ss%2012.1.09.pdf Spanish http://ecac-parentcenter.org/userfiles/F2F/Care_Notebook_Spanish_Final_3-1-11.pdf
Washington
Department of Health-Care Notebook www.pluk.org/Pubs/CareNotebook_790k.pdf
Care
Plans for Teens http://cshcn.org/planning-record-keeping/care-plans-teens
Teen
Care Notebook http://cshcn.org/planning-record-keeping/teen-care-notebook
Helpful Contacts:
Family Voices/ Family-to-Family Health
Information Centers
Family Voices http://www.familyvoices.org/states
*For more information on this topic, see “Reviewing and Amending
Medical Records” factsheet from the
Statewide Parent Advocacy Network at http://www.spanadvocacy.org/content/reviewing-and-amending-medical-records-fact-sheet.
Remain Hopeful,
Lauren
Lauren Agoratus is a parent/advocate
who works for the Statewide Parent Advocacy Network and serves as the NJ
Coordinator for Family Voices (www.spanadvocacy.org), a national network that works to “keep families at the center
of children’s healthcare” at www.familyvoices.org or FB www.facebook.com/pages/Family-Voices-Inc-National/137783182902269. She also serves as NJ representative
supporting caregivers across the lifespan for the Caregiver Action Network
(formerly National Family Caregivers Association) in a volunteer capacity at http://caregiveraction.org/ or FB www.facebook.com/CaregiverActionNetwork.
I have a blog post about our medical binder but I love the look of this bracelet. I have to start thinking about medical bracelet for both my daughter and I we both have a rare genetic disorder called 22q11.2 deletion syndrome. Found your blog doing a google search for top special needs blog.
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ReplyDeleteAccurate medical records are vital for family caregivers, providing clear insight into a patient’s health history and treatments. This helps in making informed decisions and avoiding errors. Just like electrical maintenance works in Dubai, where precision ensures safety, well-kept medical records are key to proper care.
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