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Message to Medical Professionals |
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Written by Lesli Richardson
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Thursday, 24 May 2007 |
This article is for medical students, nurses, and other professionals who have never dealt with spina bifida patients before, or who have limited experience with them.
- Don't talk down to the parents or the patient. If you are new to medicine and their child is older in years longer than you have been practicing medicine, LISTEN to them. Never act condescending to a patient/parent.
- RUBBER IS LATEX! ALWAYS assume a spina bifida patient is highly allergic to latex in ANY form. I once had a doctor attempt to use a stethoscope with a rubber adapter on my child and claim, "Oh it's not latex -- it's rubber." DUH!
- Don't assume you know more about the patient's condition than the parents do. Many parents complain that doctors either dismiss or ignore their comments. Whether you agree with a parent/patient or not, listen to them, then restate back to them what you think they said. You may be misunderstanding something they're saying, or they may be using a different terminology to describe something than you would. There is never an excuse for not listening to a patient/parent.
- Whenever there is a question, always consult with a supervisor. If you are seeing a patient in an emergency/triage setting and they say their regular doctor/specialist tells them to do something, get on the phone with that doctor or the doctor's PA and find out what's going on. Specialists deal with different aspects of spina bifida that you may have little knowledge of.
- If you are a physical/occupational therapist, remember that these kids, unless they have a bone condition, are not fragile.They won't break. Encourage parents to make their children DO things for themself and be independent. Encourage parents to get their kids into adaptive sports, even if it's only swimming.
- One of the worst things done to many spina bifida kids is they are forced to be strapped into wheelchairs with seatbelts and "wheelie" bars. The kids are scared into not experimenting with their mobility. If a child is capable of pushing themself, if they flip over forward and are strapped into the wheelchair, they can't get away from it and can get seriously hurt. Once a child is old enough to start exploring independently, they are usually old enough to not be forced into wearing a seatbelt or wheelie bars. Many older kids LOVE to balance in their chairs on their rear wheels, jump curbs, and get off of sidewalks. This isn't possible with wheelie bars.
- Learn to think outside the box. Spina bifida may limit some aspects of mobility, but many kids are perfectly capable of getting around on their own, doing some household chores, and being treated like normal kids.
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Last Updated ( Thursday, 24 May 2007 )
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