I surveyed a group of people who suffer with Sickle Cell Disease. The list of major issues they face with management of their disease AND with their interactions with healthcare providers are listed below:
1. Don’t like the side effects of medications (i.e. MS Contin, Vicodin).
2. Lack of compassion from healthcare providers.
3. Doctor’s who reduce pain medication prescriptions, not believing their pain levels.
4. Hospitals have a rule “3 doses of pain medicine, then discharge.” Not fair!
5. Health care professionals have nonchalant attitude regarding pain (no compassion).
6. When experiencing pain they are under medicated.
7. Teaching healthcare clinics seem to treat patients better, more informed about pain.
8. Discrimination by white doctors regarding SCD disease…demeaning treatment.
9. As tolerance to pain medicine increases, healthcare professionals debate increasing dose or quantity.
10. When experiencing a sickle cell “crisis”, they are under-treated. Pushed out of hospital before fully well.
I'm appalled just reading this list. I've experienced each and every one of these issues, but it makes me mad to see that others have too.
People who are sick, are sick...believe them. Most people who suffer with sickle cell disease only want help. They're not "happy" about being in pain just to get drugs. Believe that too!
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