Friday, April 26, 2019

Family Centered Patient Advocacy and Patient Safety Training

Family Centered Patient Advocacy Training



You probably have heard the saying “bring someone with you to the doctor or hospital” but what does that person do? 
  • Should they be asking questions for you?   
  • Should they tell everyone to wash their hands? 
  • Maybe they should be available to hold your coat?

    Do they need to know your: 
  • medical history, 
  • your medications, 
  • all your doctors, 
  • surgeries, 
  • insurance, 
  • home address, 
  • drug use, 
  • smoking habits, 
  • drinking habits, 
  • if you are allergic to anything, 
  • if you finished high school, 
  • your religion, 
  • if you are right handed, 
  • do you shave every day, 
  • are you kosher, 
  • how many children, 
  • grandchildren or 
  • if you are sexually active?

If this seems to make no sense, it’s because it probably doesn’t. No one is teaching these skills – now you can learn to be a patient – a patient’s advocate, a support person or a good neighbor and friend when someone needs your help going to the doctor or hospital.

In just eight hours I promise this will change your life!

Please check us our here at www.patientsafetyevent.org and sign up for our next course.  Thanks to the space donated by the LI Community Foundation we can discount our price.  Let me know you are interested and register before May 1st and we can work out a price that fits your budget.

Watch this short video to learn about how we have helped people and now you can too.  After eight hours we will support you through all your advocacy for friends, family or become a professional!

Tell your friends and family.  Don’t come alone!  Special price for 516/631 Ads Members and Friends just $25.

Wednesday, March 6, 2019

The Selma Blair Story


The Selma Blair Story is So Much More 

Patient Safety Awareness Week March 10th-16th 2019

I recently saw the interview with Selma Blair talking about her diagnosis of multiple sclerosis.  The interview is meant to be uplifting and a great way to help people understand this awful disease.

If I were to interview her, I may ask different questions.  I may ask “so tell me what it was like to be told you were just an exhausted mom?” Or, “tell us what it was like to struggle with fatigue for seven years and not be taken seriously by your doctors?”  How about “Is there a lesson here that patients need to believe in their symptoms and look for other doctors who take them seriously?” 

I wonder what the lesson here is for the doctor.  Were the doctors retrained or taught about the bias they may hold unconsciously because of who she is, what she looked like or that she is a woman?  Is all this important information slipping away so that society can forget about what this is really about, a misdiagnosis for seven years.


This is not the first time this has happened in recent years. Remember Fran Drescher openly spoke about her two-year journey to be diagnosed with uterine cancer.  She went on to talk about her fight for cancer research not addressing publicly that maybe there was more we could do to get a proper diagnosis.  It was only after her eighth doctor did a biopsy—something that her first doctor said she was too young for—that Drescher was diagnosed”.  If we aren’t addressing the emotional pain, how about the financial burden to society by the wrong diagnosis such as the cost of seeing eight doctors.

There are studies about women’s medical care and the problems associated with getting diagnosed or being listened to (it’s even worse for women of color) but these happen one at a time and the articles and stories disappear. 

There is an answer.  If the people who work in the field of healthcare haven’t gotten it right yet, maybe we should be involving the public – the patient - even more.

There needs to be funding available to continue the discussion when something like a misdiagnosis happens so people can learn about being a patient and start taking some of the responsibility for their own safety in healthcare – not just their health.

If people were more involved in their healthcare, they would take their health more seriously and not assume some doctor will fix it all up – because they don’t always get it right.


Here are just a few articles that may bypass the public:

See www.pulsecenterforpatientsafety.org for more information and for more facts visit www.oneisanumber.org 

April 2018
MODERN MEDICAL RESEARCH has historically centered on men's health, by tradition and by statute. Only in the past 25 years – with the lifting of a law that barred most women from participating in clinical trials and another requiring their inclusion – have researchers begun to systematically consider how women's health outcomes differ from men's.
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Everybody Was Telling Me There Was Nothing WrongMay 2018One 39-year-old woman quoted in the report recalled: “One of the GPs I saw actually made fun of me, saying ‘what did I think my headaches were, a brain tumour?’ I had to request a referral to neurology. I went back repeated times to be given antidepressants, sleep charts, analgesia, etc. No one took me seriously.” 
                                                           --------------------- 

May 2018
“Well, you look like you’re doing great,” my primary care physician cheerfully informed me.
I stared at her from the examination table in disbelief. I had just told her that I wasn’t enjoying being with my children and was having trouble doing what needed to be done at work and at home. As a health journalist, I had interviewed dozens of physicians and psychologists. I knew that being unable to live one’s life was the big red flag signaling it was time to get help.
                                                            --------------------
June 2018
When Katy Seppi first got her period, the pain was so debilitating that she frequently missed school.
“I also had really heavy periods,” she says. “In high school, my mom taught me to use two super tampons at once so I could go to school. My dad once had to take me to the hospital because I was having such bad pelvic pain on one side. But the ER doctor just said that I was probably ovulating and it was normal to have more pain with ovulation.”
                                                               ---------------------

How DoctorsTake Women's Pain Less Seriously

October 2015

“My wife,” I said. “I’ve never seen her like this. Something’s wrong, you have to see her.”
“She’ll have to wait her turn,” she said. Other nurses’ reactions ranged from dismissive to condescending. “You’re just feeling a little pain, honey,” one of them told Rachel, all but patting her head.  

Saturday, February 23, 2019

The Vanderbilt Nurse


The Medication Error on the News

The recent news about the Vanderbilt University Medical Center nurse is getting on-going attention.  While I try not to comment on specific cases, I want to comment on this because it is constantly in my news feed and is deserving of a comment.  Recognizing we don’t have all the details (and probably never will) this is what I want to say.

Many people sympathize with the nurse who allegedly broke rules and gave the patient the wrong medication which supposedly was the cause of death. Nurses rally around her for support.  They have raised thousands of dollars for her defense fund on GoFundMe. There is nothing good to come of this and there will be no happy ending so let’s look at another perspective.

Who is rallying around the family of the 75-year old woman who died?  Where is their support system?  Can they be told how this happened, treated with dignity to understand or are they being made to look the bad guys?  Are the malpractice attorneys’ part of this media blitz to get a faster settlement for the family and bring attention to this case? 

Has the nurse made numerous mistakes before, broken rules and injured or killed many people?  If so, shame on that hospital for keeping her on.  If she has never done this before, then shame on them for not showing sympathy to the family, offering full disclosure, a settlement and a description on how changes will be made for improvement and even retraining the nurse.

For goodness sake if you have ever looked at your cell phone when driving, you can injure or kill someone.  And because you are breaking the law you are held accountable and will be treated as a criminal.  Does anyone really think this nurse committed a crime?  Maybe she’s just not a very good nurse, was in a rush or just made a mistake of poor judgement – does that make her a criminal?

As long as we keep medication errors, medical injuries and patient safety a secret from the public, it will stay newsworthy when someone dies and causes this sort of media attention.

Could this have been avoided if the patient had an advocate and new what medication the patient was supposed to get?  If the patient’s advocate sat with the patient during her treatment could the problem have been found sooner?  We will probably never know.

As long as the healthcare system and medical professionals are the only one’s responsible for patient’s safety and working in silos with the patient and family looking in from the outside, you bet this problem will continue.  As a parent who lost a child from medical error and was chased down by attorney’s calling my home for days wanting to take the case but doors closing from the medical community, I will tell you to this day, years later, all I ever wanted was an apology and an explanation and to move on.

I’m wondering what this family really wants and how this all got to this point.

Sunday, February 10, 2019

Words to Help Communicate

Critical Communication and Words to Help

When I went to visit the woman at the hospital because she was not getting her medication, her questions were not being answered and she was barely able to speak and eat, she shared how angry she was at the lack of attention she was getting.    It is understandable being alone, scared and as someone always in control, having your independence taken away.  Anyone would be vulnerable in this situation.  She was calling people down the list of phone numbers of people who worked in the hospital she received and in her weakened voice from a painful condition affecting her voice. She told me she screamed “Help, help!!” into the phone.

By the time I got there and cleared up the problems she was having, I explained that yelling “help” into the phone, or in a hospital, may actually get people to turn the sound off in their head.  They may think of you’re as crazy, or annoying, I told her and like many of the buzzing sounds and alarms that scare or annoy us, they can tune sounds out – or, if someone needs them more, that’s where they will go and yelling help will only annoy other patients and staff.

Instead, what patients can do is let them know that you don’t feel that you are part of the care.  Patient centered care is a term that professionals use to keep the patient in the center of the care team.  Nurses shift changes should not be at their desk or in the hall. The patient should expect the shift change at the patient’s bedside so you can help answer questions or share concerns.  Don’t hesitate to let the staff know that the care does not feel “patient centered” if it, in fact doesn’t.    

Yelling help also doesn’t give specifics such as letting them know if you don’t feel “safe”.  Feeling unsafe because you’re not getting your medication, or the proper medication, your doctor has not come around while you are awake to speak to you about your diagnosis, treatment plan or answer your questions are real reasons to feel your safety may be at risk because you are not being included in the planning.

A clear explanation of your needs is important for the medical staff to know what you need and of course, if you can’t get out of bed having a friend or family member help you is important.  If the person visiting you can’t do this, think now who that person will be, before you need them. 

Now available seminars and programs Critical Communication  

Tuesday, January 8, 2019

Accountable or Responsible: Who is Monitoring the Medication?


Medication Safety and Management

I attended a presentation today by a hospital pharmacist.  Most of the people in the audience of about 50 professionals were representing nursing homes, home care agencies and people who work with older adults.  The presentation was very informative about understanding some of the complications and interactions that older adults experience with their medications.

The audience questions and comments focused primarily on who is responsible for monitoring the medication and reviewing medication.  The “responsibility” seemed to fall on the pharmacist or nurses in the nursing homes, rehabs, assisted living etc. Then the question about the home care agency in the patient’s home – who is checking on the medications?

The Food and DrugAdministration estimates that 1.3 million people are injured by medication errors annually in the U.S. 

With numbers this high, there needs to be some responsibility of the patient and their family in this discussion.  When I brought up that this presentation should be offered to the public, others seemed confused.  When things go wrong, the public has no clue of the complexities in medication management or other areas of medical care.  We only know that if something goes wrong, someone will be held accountable.  These silos have to stop and the public must be more involved in not just their health, but their healthcare and that means opportunities to hear a pharmacist present on medication safety and management.