I heard it through the GRAPEVINE
Since I started my blog in 2012, I have tried to keep my message rather consistent. I try to educate and motivate the chronic pain pt in how to advocate for themselves. There is so many chronic painer and so few advocates. I try to keep the old proverb in mind “..Give a guy a fish, and he will be fed for a day. “Teach him to fish, and you will feed him for a lifetime…” In all reality, there are probably more new chronic pain pts created everyday than the existing number of advocates could attempt to help get pain pts proper pain management. Not to mention that I don’t believe that there is any non-profit that has the financial resources to fund advocates doing in person advocating. There is some rumors out there that some advocates are charging for advocating for individual chronic pain pts. Charging pts is something that I have NEVER DONE. It is claimed that 80% of chronic painer’s families are struggling financially. Many chronic painers have told me that my advice has helped them self advocate and they have been able to improve their pain management. Going forward… I am going to ASK of people that want my advice to make a contribution to one of the four national charities listed below, these are all about THE KIDS… and charities we support. If my advice has helped you and you are financially struggling, don’t worry. If one of the charities listed below gets $5 +… that is great .. Maybe in some small way, my advice can help more than just one person/family.
https://www.stjude.org/ St. Jude Children’s Research Hospital – deals with kids dealing with cancer and/or life threatening health issues
https://lovetotherescue.org/ Shriners Hospital – deals with kids, born with “broken bodies” and birth defects
https://rmhc-kentuckiana.org/ Ronald Mc Donald House – this is near us and just a few blocks from a very large regional pediatric hospital ,3 other major hospitals within blocks, one being a teaching hospital and having the only LEVEL ONE TRAUMA CENTERS for 100 miles and part of a medical university and helps provide housing for families with kids in the hospital
https://t2t.org/ Tunnel to Towers Foundation – helps get handicapable housing for veterans, first responders with “broken bodies” , families with spouse/parent killed in the line of duty and Gold Star Families
I have concerns about advocates that contradict themselves, and below is an example that was brought to my attention. This advocate warns people in the first video NOT TO SHARE PERSONAL INFORMATION TO ANYONE and in the second video the advocate, is ASKING FOR A LOT OF PERSONAL INFORMATION sent directly to them. A lot of the information being asked for is considered PERSONAL HEALTH INFORMATION that is normally covered by HIPAA. This information could be valuable to some entities who would wish to purchase it.
My policy is when I see that someone or entity is trying to gather information on pts for some study, legal action or media story. I share the contact information of that person/entity that is wishing to amass this information via my blog and other internet websites, any pts can reach out and talk to those wanting that information. Of course, since I am a healthcare professional, I have to be concerned about protecting a pt’s personal health information from getting into hands of someone/entity that will do who knows what with the pt’s personal health information. I guess that some person/entity collecting personal health information and is not a healthcare professional, probably has no responsibility nor liability in protecting that personal health information from being shared or sold to other to use in whatever manner they wish.
Some people may be more interested in monetizing – making money – off of collecting and selling your personal information
Filed under: General Problems
Didn’t Stanford University do studies? And Dr. Kertesz doing a study on the death from suicide of pain patients? I believe that the National Pain Council, Jonelle Elgeway has asked for this information before.
Unfortunately this person in the videos has my personal information from me having been an organizer for the DPPR. I can imagine her using it in any way she likes.
Sharing my personal health info for profit is really nasty. I’ve been contacted in the last couple of days by three purveyors of Kratom based in Indonesia, so word does get half way around the world from my home sweet home in Virginia.