shouldn\'t the medical establishment help us out?

3 replies [Last post]
By Nathan_Walters_Dad on Tue, 02-19-02, 04:47

Wouldn't it be great if the doctor that diagonised your child's food allergy also informed you of the legal implications it has and your rights? Just a thought here, why couldn't we moblize an action group to apply a little pressure on our doctors. With the increase of food allergies on the rise with school age children for example wouldn't it be great if a doc gave you some information on 504. 504 is such a new issues for schools and many school administrators are not as educated as they should be. Even worse for example here in Washington State thru the superintendent of public instruction they are recomending that a waiver of liabilty be signed by the parent when a drug is prescribed to a student that would say something to the extent that due to varying schedules you as a parent understand that medication doses may be missed. With this liability waiver it takes responsibility out of the schools hands and they can have an excuse for not providing the med your child needs. Granted it might not be such an issue if it is an antibiotic that has been prescribed for a cold that last a couple of weeks, but it is an entirely different set of circumstances when it comes down to life and death as does epi-pen to a child with a severe allergy. I think what the hidden agendy behind such actions is to force courts to reevaluate such rulings as garret f and the grand rapids school district that went to supreme court in 1999. It makes sense to me to use the odds that have been against us with food allergies on the increase give those newly diagonsed indivduals or their parents that information on 504. Use the numbers in our favor instead of against us and not let the tide turn in the tide of court rulings. What would be even more action based encourage those docs to go over their records and actually mail the information to all that meet the diagonsis of severe food allergy. I really feel that it comes down to a lack of knowledge, and we as parents have to take some of that responsiblity. Sure you are all on peanutallergy.com and know about the issues at hand, but there are so many other parents (low income that may not have access to information like peanutallergy.com shares) that we need to look out for to. Anyone who is willing to start with your own doctor or child's doctor to build on from there let me know. State boards of medicine could be a good start, maybe even a law outlining the responsibility of a doctor to provide information? What do you all think?

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By Melrose Mum on Sat, 02-23-02, 22:47

My allergist (who performed my daughters initial scratch test) let me use an epi-trainer before I left the office with her scrip for the epi-pen, and asked me if I got online, told me that there was 'a lot of good info out there' and to 'definately check out FAAN' I feel confident that he could have provided me with more info if he knew that I didn't have access. Then again, my daughters' pediatrician did not know what a CAP RAST was... In answer to your question, YES! Doctors SHOULD give out information about 504s etc. Heaven knows I would have gladly PAID for the information I've had to sift through, not to mention the HOURS spent doing the sifting. (BTW thanks for your 504 post w/links) Unfortunately, I think that HMOs are REALLY hurting the ENTIRE patient/doctor relationship; and EVERYONE must advocate for good healthcare. I WOULD be interested in helping to promote better education, but I almost feel like my efforts would be MOST useful in promoting better labeling, education of schools and parents. Wouldn't it be lovely if the day came that we didn't NEED 504s to protect our children from exposures? And if they where exposed, everyone would know what to do? I guess my feelings are mixed, I'm sorry for my rambling, I'm still pretty new to the PA issues...Right now I'm simply looking forward to the day I have the TIME to advocate for others; I hope to find that time while my daughter is healthy, safe and alive. To those who have the time, I say THANK YOU, and PLEASE keep it up as long as you can, I hope to join you soon! Diane

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By williamsmummy on Wed, 07-24-02, 17:53

hello, can i ask a question?
are doctors , Gps over there fully informed about allergy and its impact on familys in the first place?
In the uk, things are improving slowly, but most gps that where trained over 10 years ago have no real knowledge of allergy. Most would not know how to use an epi pen for instance. Which is no suprise when you realise that doc's are trained in hospital and do not use epi pens !!!
Our other big problem is that there are only 5/6 National health service consultants here. All with growing waiting lists as Gp's are beinging to recognise the problems and referring them( for some of us this step is a huge hurdle) as a conseqence the waiting lists are fron 8 months to 2 years!!!
As the waitng list is growing , and targets are not being met , money is not being granted to the consultants.
Its a dreadful state of affairs.
I would have loved to have advice on any benifits i could have claimed when william was small ( have since found out that his skin problems would have been enough for me to claim disability benifit....3 yrs to late!!)
I would love the medical establishment to help us better over here, getting the help we need would be a good start!!!
but I have a feeling that its a case of educating them first!!!
good luck.
sarah

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By ryan's mom on Sat, 08-03-02, 23:29

Once our final, revised copy of our 504 is signed, I planned on giving it to our pediatrician (minus personal info, of course). My son's doctors were the first line of defense against anaphylaxis and, personally, I don't feel they did a very good job. Don't get me wrong, I do like the doctors, but they are just not as informed as they should be as far as management of PA (much more than just avoiding ingestion) and school issues. I'm hoping our 504 can be used as a sample to help guide others.

We just saw our allergist today so he could fill out school forms and make any last comments/suggestions on the final draft of Ryan's 504. He asked where I got the info (from FAAN he asked). I responded that the most helpful and thorough info came from peanutallergy.com, although I'm sure some of the info here came from FAAN too. He looked impressed with what was set out in front of him. The pediatricians, however, need to provide more knowledge of school issues to their patients. Specifially that they ARE covered under Section 504 because of a hidden, life-threatening disability. To not do so, in my opinion, is negligent. Healthcare in the school setting is paramount for a child's safety and health.

[This message has been edited by ryan's mom (edited August 03, 2002).]

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