Low Expectations, Contracts, and All Types of Feasances

When a patient visits a doctor, s/he does so with a certain expectation. The patient recognizes the schooling and degrees the doctor holds. We pay him/her for his time, expertise, knowledge, and guidance. The patient is not allowed to be late to the appointment, as many offices reschedule the appointment for fear it will delay the already crowded schedule.  If the doctor keeps the patient waiting, so be it. The patient shuffles from room to room waiting for his/her turn.  Rarely do we complain about the time, and rarely do we leave the office in less than an hour, after a 10 minute visit with the doctor, of course. Regardless, it is a system that we all buy into. We accept. We may complain, but we need these people, these doctors. People in many societies have come to accept this modern medical practice. 

In addition, the doctor goes to great lengths to ensure the patient understands our responsibility, our financial obligation to the doctor for his time and expertise.  The patient signs many forms before the initial appointment -- outlining the beginning of this relationship.  The doctor will be paid for his service, whether through the insurance company or the patient.  The patient is paying for the service of a medical doctor. We pay them based on time, not results. In no way does the doctor ever promise to the patient that s/he will resolve our medical ailments. Isn't that a little messed up?

What happens when we patients can no longer get a doctor to listen to us? What happens when we are very clear about our symptoms, request certain testing to rule out our undiagnosed illness, yet the doctor refuses to help us?  It is my strong view that when a doctor who fails to investigate a patient's concerns about Cushing's -- yet we continue to pay them for their time but inattention -- it is a breach of contract.

"When a contract creates a duty that does not exist at common law, there are three things the parties can do wrong:

• Nonfeasance is to ignore and take no indicated action - neglect. 
• Misfeasance is to take inappropriate action or give intentionally incorrect advice.
• Malfeasance is hostile, aggressive action taken to injure the client's interests."

I have heard story after story from my Cushie friends, horror stories of the treatment they receive from doctors who dismiss their concerns, symptoms, and knowledge. It makes me so sad and ANGRY.

Nonetheless, we Cushies have come to expect this terrible treatment from doctors. When were a far enough along, we can even joke about it.

To emphasized this point, my brilliant and super cool Cushie friend Cyndie created this video, which portrays a typical exchange between Cushing's patient and endocrinologist/doctor. LOSE WEIGHT. EXERCISE. Oh yeah, well, that won't get rid of my tumors, you jackhole!  

 

Now, repeat this exchange at every doctor appointment for 4 to 20 years, and then it doesn't seem too funny.

Totally and Utterly Preposterous

One of the main reasons I spend my time to write the blog is to generate awareness about Cushing's.  Patients like me will continue to suffer needless until everyone understand how this disease impacts us so that they can take good care of us.  We deserve that. 

This story is preposterous! It's an outrage.  What can we Cushing's patients do when even the *medical staff* do not know how to take care of us?!

Birmingham hospital accused of kicking out hallucinating brain tumour teenager in pyjamas

 

A TEENAGER with a brain tumour was kicked out of hospital by security guards and left wandering the streets hallucinating in his pyjamas, relatives have claimed.

An investigation into how 19-year-old Anthony Riding, a patient under the care of Heartlands Hospital, came to be found on the street in freezing cold weather is now under way.

The desperately ill teen had not been officially discharged from the hospital and he claimed two NHS security guards had escorted him off the premises to nearby Belcher’s Lane and ripped off his patient ID wristband.

Anthony, from Bordesley Green, suffers with rare hormonal disorder Cushing’s Syndrome, caused by a tumour in the pituitary gland next to the brain.

Side effects mean that he can suffer psychological disturbances from euphoria to depression.

He was admitted as an emergency to the hospital, in Bordesley Green, suffering syndrome-related problems along with mood swings and hallucinations on the night of December 15.

But the following morning at 10am, his family found him wandering the streets in his pyjamas and flipflops as temperatures plunged into minus figures.

Dad Tony said: “After complaining to the hospital, nurses said there had been some problems during the night with Anthony when he had been swearing and needed restraining.

“That is all part of his condition but if they had a problem, someone should have rung us to bring him home or sit with him, not chuck him out on to the street in his pyjamas when he was under their care.

“We found him in his pyjama shorts and flip flops, hallucinating. He had been wandering around like that for nearly two hours and had bruises on his arms from where he had been grabbed. It was so cold, it snowed later that day.

“Anthony’s specialist nurse at Queen Elizabeth Hospital was very disappointed in what happened and told me that what other people see as bad behaviour is part of Anthony’s condition, and other medical staff should know that.”

The syndrome is so rare that only one in five million children have similar symptoms to Anthony’s and one in every two million adults.

Anthony has already undergone two unsuccessful operations on the tumour and is now waiting to see whether a month’s-worth of radiotherapy has helped.

A month after his first operation, Anthony met his footballing hero when Paul Gascoigne was visiting the NEC and he gave the teenager words of encouragement.

A Heartlands Hospital spokeswoman said: “We take the safety of all of our patients and staff very seriously and are very sorry to learn of the concerns raised by Mr Riding and his family. We will be carrying out a full investigation into the issues they have raised.

“We always aim to support our patients and staff and if an individual is consistently using violent and abusive behaviour, we have a responsibility to ensure our staff and patients are protected at all times.”

**********************

pre·pos·ter·ous

–adjective

completely contrary to nature, reason, or common sense; absurd; senseless; utterly foolish: a preposterous tale.

 

Anthony, from one Cushie to another, I wish you success on your radiation or your next surgery. I'm sorry for what has happened to you.

~Melissa

Power Users: Enough Said

Thank you to my sweet friend Rev Kev for passing along this article, and saying, "Ok so Melissa was not mentioned by name, but the profile fits."

People Coping With Rare Disease Are Internet Power Users 

iStockphoto.com

Published: March 01, 2011

by Nancy Shute

When people go online searching for health information, they're often also looking for someone who's grappling with the same problem. That's especially true if they're dealing with a rare disease.

The Internet provides a gateway to all kinds of medical facts and also to people who have come by that information the hard way.

That's the news from a survey just out from the Pew Internet Project and the California Healthcare Foundation. They found that people dealing with rare diseases are the undisputed power users of health information online.

About 25 million people in the United States have a rare disease, although each disease affects no more than 20,000 people. Because of that, people often have a hard time finding others in the community with first-hand knowledge of that disease.

People are also more likely to seek their peers out online if they are coping with a medical crisis, are a caregiver for a sick relative, or are dealing with a chronic condition. About one-quarter of Internet users in those situation seek out peers online, compared to 18 percent of Web surfers overall.

But the people dealing with a rare disease were far more likely to have honed their searching, learning, and networking skills to Olympian levels. The majority of them are connected to peers online. "We can say things to each other we can't say to others," one woman living with a blood disorder wrote in the survey. "We joke about doctors and death. We cry when we need to. Together we are better informed."

That's not to say that people are dissing doctors. Almost three-quarters of adults say they turn to doctors and other health professionals for information. Some 54 percent say they ask friends and family for advice.

But clearly the Web has something to offer people in need of medical information beyond mere data. "People want emotional support from their peers," says Susannah Fox, associate director of the Pew Internet and American Life Project, and author of the survey, which surveyed 3,001 adults in the general population and 2,156 members of the National Organization for Rare Disorders. "The rare disease communities show that people are ready and willing to share with each other so that other people can benefit from their experiences," she tells Shots. [Copyright 2011 National Public Radio]

http://m.npr.org/story/134140813?url=/blogs/health/2011/02/28/134140813/people-coping-with-rare-disease-are-internet-power-users&sc=emaf