1. All of our family members have had immense problems and difficulty in obtaining meaningful and humanitarian care.

2. Too many parties want to erroneously label our loved ones and family member with intractable pain as addicts, drug abusers, or non-compliant patients.

3. We are afraid that federal, state and local government agencies, medical groups, federal and state medical boards, pharmacy boards,  and insurance companies are developing guidelines and policies that will deprive our family members of the treatments we know are effective.

4. Some medical institutions and physicians continually try to force acceptance of treatments we have either tried or reject. These include invasive procedures and implants,  psychological and addiction counseling, and non-opioid medications.

5.There is a severe lack of internal medicine practitioners and other physicians who will provide the integrated and comprehensive treatments our family members require. The vast majority of physicians who are “Pain Specialists” are anesthesiologists or physical medicine and rehabilitation doctors who only offer invasive “interventions.”

6. Physician’s aren’t adequately trained in the genetic differences of the Cytochrome P450 metabolic pathways and how this affects medication dose and absorption in most commonly used analgesics, and many other types of commonly used medications.. Most of our family members have unique genetic anomalies in this metabolic pathway, along with their painful and rare disorders. This makes standardized dosing of many medications obsolete for them. Many have been labeled as medication “therapeutic failures” in the past, before this anomaly in genetics was discovered.

7. Hospital and ER staff do not adequately understand the unique medical and genetic metabolic differences our family members have and often attempt to discontinue of change medications prescribed by qualified pain physicians upon admission. This often causes undue suffering and increased pain compounding and increasing medical complications. Our family members often experience extreme bias, and medications are often blamed for their symptoms, and medical emergencies can be over-looked.

8. Support for the families and caregivers of Intractable Pain patients is severely lacking. Resources and help with planning for the future, financial planning including long-term care needs, changing care costs and emotional support are needed. We worry about the future, and want to make sure our family members can thrive when we are gone.

 

DISCLAIMER: This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. We do not recommend the self-management of health problems. We cannot and do not give you medical advice. The information in this website should not be considered complete. Information obtained on this website is not exhaustive and does not cover all diseases, ailments, physical conditions or their treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website.  If you think you may have a medical emergency, call your doctor or 911 immediately. FIPR- Families for Intractable Pain Relief does not represent to be an authority, please contact your physician. We share information from other organizations, advocates and or websites.