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Emergency Treatment Protocol - Ensuring Critical Care for Rare Diseases

Learn the importance of emergency treatment protocols for rare diseases and how it can prevent dangerous situations. Find out how to advocate for proper care and access necessary resources.

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Emergency Treatment Protocol - Ensuring Critical Care for Rare Diseases

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  1. 2014 FOD/OAA NATIONAL METABOLIC CONFERENCEArlington, VAJuly 26, 2014 Charles P. Hehmeyer, Esquire Raynes McCarty Philadelphia

  2. WE HAVE THE SAME GOAL

  3. Emergency Treatment Protocol…What is it?

  4. Emergency Treatment Protocol…Why is it important?

  5. Rare diseases can be a dangerous trap.

  6. Julia Sommer, an 11 year old with JS, died in a hospital from a two centimeter stomach ulcer.

  7. Rare diseases are…rare • Prevalence ranges from 1/15,000 to 1/200,000 births • Dr. Google

  8. OLD JOKE: I went to a bookstore today. I asked the woman behind the counter where the self- help section was. She said, “If I told you, that would defeat the purpose.”

  9. Protocol: • Tailored to patient • Description of disease • Critical emergency management issues • Surgery and anesthesia

  10. Protocol Must Be: • Signed by a doctor • Dated • Expert paging number and instructions

  11. Unfortunately these tragedies are not uncommon.

  12. Zoiey Craig

  13. Craig v. Our Lady of the Lakes Medical Center (New Orleans, LA) • Be assertive • Ask questions • Doctors are not gods

  14. Emily Cianchette

  15. Cianchette v. Eastern Maine Medical Center (Bangor, ME) • Use your cell phone • Pre-orient your PCP • Place in file

  16. TEENAGERS

  17. “My daughter has me totally wrapped around her little finger. I don’t even try to win anymore. I just try and save face. I say things to her like, “Go to your room at your earliest convenience.” --Jonathan Katz

  18. Protocol must always be available. • On person • On file in local hospitals • Trainee • Alert pop-up • On internet

  19. Protocols are not binding. • Doctors do (and should do) what they think is right under the circumstances. • But if a doctor does not follow protocol, he/she must have a VERY good reason. • Protocol reminds doctor that time is of the essence. • Protocol reminds doctor that specialist doesn’t mind being contacted.

  20. Emergency Information Form (EIF)

  21. Where to keep copies of EIF: • Health Care Provider's Office: On file with each of the child's health care providers, including specialists. • Home: At the child's home in a place where it can be easily found, such as on the refrigerator. • Car: In the glove compartment of each parent/guardian's car. • Work: At each parent's workplace. • Purse/Wallet: In each parent's purse or wallet. • School: On file with the child's school, such as in the school nurse's office. • Child's Belongings: With the child's belongings when traveling. • Emergency Contact Person: At the home of the emergency contact person listed on the form. • Local EMS: Give to local ambulance services and hospital emergency departments. Keep more copies on-hand to give to emergency service providers during an emergency situation.

  22. Charles P. Hehmeyer Raynes McCarty, Philadelphia 215-568-6190 cphehmeyer@raynesmccarty.com

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