Saturday, August 17, 2019


From Boardroom to Bedside

We often hear from the owner or the person running a business how their staff behave.  We don’t allow that behavior here” someone may say to an irate customer.

It’s not unusual for that statement to be shared to patients or their families who are not pleased with the care they are receiving.  Years ago, when I worked with people who were living with various physical disabilities as a patient advocate, someone in leadership at a hospital said to me, as well as the group he was presenting to, that nurses and nursing assistants take extra care of people who have disabilities.  They take extra time and address any special needs they might have at his hospital.

“So”, I asked him, “do you have extra staff to help these nurses or are they just told to work harder?”  His look was the answer I expected.

I was there because of the problems people with disabilities were having in their medical treatment and he was supposed to have the answers.

Another time, a hospital director explained that “we rarely, if ever see people who are transgender so we don’t need to address that here”. (See March 2015)   After my presentation which was touching on bias and disparities, I was asked by an employee “how do we address people who are transgender?”  When I asked why that was important to him, I learned he was in charge of the transport team and they see many people who they believe are transgender mostly in the emergency room.  Something leadership was not aware of.

I have heard what a hospital's policy is for handwashing and then watch how many staff do not wash.  By reporting this, at times, I have received thoughtful responses from the leadership, or the doctor themselves who I challenged.   This is how, I believe we, as patients can make change.

Hospital leadership (and I am careful to use the term leadership because a hospital or healthcare facility is usually made of brick.  The leadership is made up of humans and decision makers with their own feelings and needs) the human beings who are in charge of the healthcare system, often do not know what is happening at the bedside.  Many times, I have asked them to “take off your tie and go sit with a patient to see for yourself the comments and care your staff – good or bad – use in treating patients.”

I know when I worked at my last customer service job customers would speak to me about how lousy service was at times. The management didn’t know because we were addressing the unhappy customers for them with apologies - so improvements couldn’t be made because they didn’t know where the problems were.

Then I get a look at this video that has come out and wonder how long this PA has worked in this hospital.  How many complaints were mishandled and how many people have been injured or hurt?  Should they go back to any patient he has ever treated as they would if it was a disease that could be spread through dirty needles of unclean equipment?  Maybe all his patients who he ever treated should get a letter that reads “Dear patient, we found a parasite in our hospital and want to prevent this from spreading further”.

I only ask that though the majority of healthcare workers are kind, considerate and qualified, the expression “no one wakes up in the morning wanting to harm their patients” is never used again. There are good and bad people in every job, every color, every religion, every gender………….

In all fairness, the comments by the hospital are on their Facebook Page

Friday, August 16, 2019

Letter to Another Doctor

Letter Sent to Another Doctor's Office
Opportunities for improvement can come when we address them.  Please address them!

Dear Management,

On August 8, 2019 I was contacted by a person who used your services because of a swollen pinky.  An x-ray was taken and the patient was told that the next finger over (the ring finger) was fractured and an infection had developed.  This patient was prescribed antibiotics and it was suggested they see an orthopedist specializing in hands because of the fracture, which they did.

As it turns out, the patient did not have a fractured finger (the x-ray was read incorrectly). The patient had gout, which needed medication, not an antibiotic.

Pulse CPSEA is a patient safety organization dedicated to raising awareness about patient safety through advocacy, education, and support.
The following information may be helpful to share among your staff.

  • Medical errors are the third leading cause of death in the United States  
  • 80,000 to 160,000 people are harmed due to misdiagnosis each year with 40,000 to   80,000 deaths each year caused by misdiagnosis 
Additional patient safety statistics, with references can be found at    This letter and information are being sent to you in the hope that they may be used to improve knowledge and understanding as well as quality of care and patient safety in your office. I trust you will take my comments in the positive spirit with which they are offered. No official report will be filed at this time but I would appreciate a response indicating how this information was shared, and the steps taken to correct the concerns raised, so I can inform the person who contacted our office that it is, in fact, being addressed.

Thank you for your prompt attention to this matter.

Sunday, August 4, 2019

Consent: What does it mean??

The Meaning of Consent

I was recently at the hospital with a patient who was getting a complex surgery.  The patient didn't seem to understand what was going to happen during or after surgery. Just before the surgery we saw the surgeon who was going to explain the procedure. The surgeon had the consent form on a clipboard ready for signing.

I offered to read the consent with or for the patient after the doctor explained the procedure.  The doctor did the explanation, handed the patient the forms and the patient signed without reading.

The AMA says:
The process of informed consent occurs when communication between a patient and physician results in the patient’s authorization or agreement to undergo a specific medical intervention.

To enable patients to participate meaningfully in decisions about health care, physicians have a responsibility to provide information and help patients understand their medical condition and options for treatment.

No where does it say that the patient who signs, actually understands the procedure or surgery only that they are authorizing the procedure /surgery.

So, does the consent mean that the patient understands the procedure and risks?  Maybe it means that to the clinician, To the patient it may mean only that they are giving permission.

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 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 for more information and for more facts visit 

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.

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.