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  • 01:58

    Marian Hollingsworth: Medical Abuse of My Father & becoming a patient advocate

    in Parents

    Hosted by Marti Oakley & Debbie Dahmer


    My father, Keith Blair, went into the hospital in July of 2009 for diagnosis of back pain. Without our knowledge or consent, he was given a cocktail of Risperdal, Haldol, Ativan, Tylenol with codeine, and Morphine. When I asked the doctor about this, he said it was just "hospital delirium,"  Sent to a  nursing home, my father was given more antipsychotic drugs, along with double doses of AmbienCR, the long acting version of the drug. He ended up with the bad side effects of these black box drugs such as heart trouble, severe dehydration and kidney trouble, and sudden diabetes. He also contracted a MRSA eye infection which spread to his lungs, fell 7 times in 12 days and developed a bedsore. (He was only in the nursing home 18 days.) He ended up a second hospital due to heart and kidney problems, where the same nursing home doctor treated him.) At the second hospital, he was given daily Risperdal, and we were told to prepare for his death. When I went through the records later, I discovered that a cardiologist said he was improving and that he could be released to the nursing home in a few days.


    2. How to get ALL the records.


    3. Your rights in a hospital or nursing home as a patient or family member. Know the codes in your state so you can use them. if needed, if facilities try to violate these rights.


    3. Dealing with the health department for complaints. Your rights in a complaint. The complaint in my father's case resulted in a new policy from the health department, AFL 1108. It mandates that nursing homes must verify that patients on antipsychotic drugs being transferred from hospitals have informed consent forms in their records, and if not, that informed consent must be obtained before the drugs can be given.


    4. Dealing with the medical board for complaints.


     

  • 00:31

    Who is Listening to the Patient Voice?

    in Health

    Robin and Joyce speak with Lesley Bennett, state coordinator for the National Organization for Rare Disorders (NORD) in Connecticut, about the importance of the voice of the "consumer" in healthcare as in retail or other "marketing" relationships.


    Joyce and Lesley recently attended the annual meeting of the New England Regional Genetics Group (NERGG) in Portsmouth, New Hampshire.  What role should consumers play in a professional organization?  NERGG has included consumers in its governance for the past 38 years, and yet they are still struggling to define a clear role for consumers in the workings of the organization.


    What do consumers want? How can organizations work with them to include them in constructive ways?


    Who is Listening to the Patient Voice?



    Patients and the regulatory process - appraisal, approval, access issues
    Patient involvement in clinical trials -  design, recruitment and retention
    Patient involvement in the design of hospital cancer services
    The patient voice in kidney cancer guidelines/pathways

  • 00:29

    Why Every Hospital Patient Needs an Advocate

    in Health

    eCareDiary's caregiving expert, Margery Pabst will speak to Bonnie Friedman, owner of a consultancy business and a crusader for healthcare advocacy about why patient advocacy is crucial and how caregivers and patients can intervene in hospital communication.

  • What is a Pit Bull? What is a Pit Bull Advocate?

    in Pets

    Join Dogfather and Joe with Guests Cheryl Huerta (Portland Pit Bull Project) and Chew Davis (Miami Coalition Against BSL). We'll be discussing the catch all name Pit Bull and how it emcompases 3 distinct breeds of dog (The American Pit Bull Terrier, Staffordshire Bull Terrier and  American Staffordshire Terrier.), and in some cases, breeds unrelated. We'll discuss the history of the breed(s) and their working origins, long before the fighting dogs so many people focus on today. We hope you will join us with your thoughts, questions and comments. Phone lines open at the top of the show. 347-838-8615

  • 00:30

    Should I go to Patient Support conference?

    in Health

    What happens at a patient support conference? Is it worthwhile to go, or will it be stressful? 


    Carla talks with Robin and Joyce about her own recent experience. 


    Carla applied to the New England Regional Genetics Group (http://www.nergg.org) for an A. Merrill Henderson scholarship to attend a patient support conference.  This grant enabled her to attend and learn. 


     

  • 00:46

    VACCINES & VETERANS ~ Anita Stewart on "Public Advocate", Host Sallie O. Elkordy

    in News

    Anita Stewart has her own radio program, "Wise Women" http://www.wisewomenmediaradio.com


    "Public Advocate" Host, Sallie O. Elkordy for Mayor, Vaccine Free NYC


    Blog with 11/11 Event http://BillionToddlerMarchForSurvival.blogspot.com
    Legislation for a Vaccine Free 2015 http://tinyurl.com/VaccineFree2015


    "VACCINE FREE to VICTORY!"

  • 00:32

    Patient Information - new info for VHL

    in Health

    There are many challenges common to all rare diseases:


    1. How to get a correct diagnosis?


    2. How to find doctors who understand the condition and can provide therapeutic help.


    3. How to manage day to day, making choices and getting medical help to moderate the symptoms and maximize one's quality of life.


    The VHL Alliance assembled its first collection of guidelines for patients and their general doctors in 1993, and has been evolving it regularly since then as new information has emerged.  This is now one of the best established Handbooks for a rare disease -- now in its 5th edition, and translated into 15 languages.


    Joyce and Robin speak with Suzanne Nylander, O.D., editor of the 5th edition, about what's new in the Handbook, how the Handbook helps both patients and doctors, and what they have learned about the power of sharing information -- among patients and among physicians and healthcare systems worldwide.


    Hard copies are available for purchase from the Alliance or from Amazon.com.  You can download the text for free at http://vhl.org/handbook.

  • 00:24

    Patient Access and Intake and You

    in Health

    As more and more hospitals, clinics, and doctors merge and integrate into large health systems. It can become confusing for patients to know where and how to receive care. Coordinating efforts to improve patient access and intake takes serious strategy and planning across the entire enterprise. Singola is here to help.

  • 00:43

    Ask the Advocate: How to Qualify for an IEP and/or 504 Plan for Kids with ADHD

    in K-12

    Parents often complain that their child with ADHD is struggling in school.   A common complaint is that public schools are not meeting the needs of students with ADHD.     In this edition, IEP Advocate Jamison Jessup will talk about how to help your child with ADHD become eligible for an IEP and/or 504 Plan and which one is better?

    Andrea Frank, founder of the ADHD Kids Care Facebook group and a parent who Jamison Jessup is helping, will be a special guest on this show.

    Join us this Sunday, October 18, 2015 at 8:00 p.m. (Eastern Standard Time).

    Jamison Jessup is a professional IEP advocate with MyChildWins.com.   He has participated in more than 600 IEP meetings and has represented parents in more than 225 due process hearings asserting the rights of student's with disabilities, including ADHD.

     

  • 00:46

    What is a Pit Bull? What is a Pit Bull Advocate?

    in Pets

    Join Dogfather and Joe with Guests Cheryl Huerta (Portland Pit Bull Project) and Chew Davis (Miami Coalition Against BSL). We'll be discussing the catch all name Pit Bull and how it emcompases 3 distinct breeds of dog (The American Pit Bull Terrier, Staffordshire Bull Terrier and  American Staffordshire Terrier.), and in some cases, breeds unrelated. We'll discuss the history of the breed(s) and their working origins, long before the fighting dogs so many people focus on today. We hope you will join us with your thoughts, questions and comments. Phone lines open at the top of the show. 347-838-8615

  • 00:31

    Dan Dougherty Living life to its fullest as a patient advocate with Epilepsy

    in Motivation

    Living with Epilepsy on a day to day basis can best be explained by one type of person. Someone diagnosed with it, who is now a patient advocate, a public speaker and is very open about his challenges and successes.


    Dan Dougherty.


    I am forty- year old man who who enjoys life and engaging with people!


    As a person with epilepsy and trained Toastmaster, I am offering myself to speak about this mysterious disorder from a personal perspective.


    I am trained by the Epilepsy Foundation Eastern PA as a Patient Advocate. This training and my personal experience qualify me to speak about epilepsy with authority. I believe epilepsy should be brought out of the shadows of the past and into the light of the present.


    My Story published in Neurology Now:


    !http://journals.lww.com/neurologynow/blog/speakup/pages/post.aspx?PostID=16


    Dan Dougherty
    https://about.me/dan_dougherty


    Strategy of Success
    Brian A Cohen DTM Host
    www.briansos.com
    briansos@optonline.net

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