David McIntosh: To Advocate for Yourself in an Emergency
David McIntosh, Founder and Chair of United Plasma Action, shared a post by Global Anemia and Patient Blood Management on LinkedIn:
” To Advocate for Yourself in an Emergency –
This post from the Immune Deficiency Foundation makes really useful reading for individual patients attending clinics in High Income Countries – highly recommended!
“To Advocate for a Nation’s Patients in a Crisis”
For patients in Low and Middle Income Countries, and particularly for advocates working on behalf of patient groups, it occurs to me that an explanatory/introductory kit of this kind is what’s required when meeting with Government officials and Healthcare Authorities. In many countries globally, the awareness of PID and other rare diseases is so low and remedial action so scarce that millions suffer and die as a result.
To remedy the situation the World is going to need all the tools at its disposal – including many new initiatives like the one set out in the post below.
More power to your elbows, IDF!!”
Quoting Immune Deficiency Foundation’s post:
“To advocate for yourself in the emergency department (ED), bring a letter from your doctor describing your primary immunodeficiency (PI), a brief medical summary, and a go-bag with snacks, books, and other comfort items. Know how to describe your PI to ED providers and connect them with your immunologist or other PI specialist.”
Read full paper here.
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