“I have been given this product as part of a product review through the Chronic Illness Bloggers network. Although the product was a gift, all opinions in this review remain my own and I was in no way influenced by the company. “
At first, I was a bit skeptical. I wondered if the information and examples provided in The Patient’s Playbook would resonate with my first-hand experience as a patient. I also wondered if the suggestions provided would fall in line to what I’ve witnessed professionally from working in both the pharmaceutical and medical fields for the last 17 years. As a caregiver, who had to navigate the healthcare system to help my mom seek help for a disease that ultimately took her life, I couldn’t help but feel a bit skeptical about The Patient’s Playbook’s ability to give advice that would be helpful when faced with a rare and terminal condition. Most importantly, or most relevant to my life and work at present, I wondered how this book could help the patients and the families that I work with every day. Those who are part of the community that I also personally live in — the broader complex, multisystemic, chronic, not-so-rare conditions community. All I could think was, “Our community could really use a ‘Patients Playbook.'” And as Dr. Graham stated, “No other disease in the history of modern medicine, has been neglected in such a way as Ehlers-Danlos syndrome.”
When my mom was sick, my sister and I searched unchartered waters, and desperately tried to find proper care for our mother where little was available. We felt alone, scared and disheartened by many who were in charge of our mother’s immediate care. My mom was dismissed, overlooked, and shoved to the side — until the day that I called her primary care physician from the side of the road (I had to pull over because my emotions were running high), and stated “MY MOM CANNOT FUNCTION! SHE IS YELLOW! THIS IS NOT NORMAL! YOU NEED TO ORDER THE TESTS! THIS IS HER LIFE!” And while my mom fought hard to overcome breast cancer, and subsequently the diagnosis of Cardiac Primary Amyloidosis, in the end, a medical mistake took her life.
Unfortunately, my mother’s story is not uncommon. A recent study published by The BMJ stated that medical mistakes are now the 3rd leading cause of death in the United States. Similarly, Hopkins Medicine.org published an article based the results of The BMJ study and stated:
“Incidence rates for deaths directly attributable to medical care gone awry haven’t been recognized in any standardized method for collecting national statistics,” says Martin Makary, M.D., M.P.H., professor of surgery at the Johns Hopkins University School of Medicine and an authority on health reform. “The medical coding system was designed to maximize billing for physician services, not to collect national health statistics, as it is currently being used.”
In 1949, Makary says, the U.S. adopted an international form that used International Classification of Diseases (ICD) billing codes to tally causes of death.
“At that time, it was under-recognized that diagnostic errors, medical mistakes and the absence of safety nets could result in someone’s death, and because of that, medical errors were unintentionally excluded from national health statistics,” says Makary.”
Medical errors stemming from misdiagnosis are a similar statistic. Based on the statistical data on the prevalence and alarming epidemic of misdiagnosis and medical mistakes just shared, I would say that a book like The Patient’s Playbook is relevant and published at an appropriate time in medical history.
The Patient’s Playbook is a book written about accessing the best healthcare in the United States. It’s about patient empowerment, patient advocacy, finding your best healthcare team, and about minimizing the chance of medical mistakes. The author, Leslie Michelson, shares stories of patients he’s helped find the best possible care and a correct diagnosis. Most of the patients in The Patient’s Playbook faced serious, harder-to-diagnose chronic illnesses, and I couldn’t help but empathize with many of their stories. Moreover, in preparing to write my review on The Patient’s Playbook, which normally includes basic research and added links or resources to include in my post, I found one of the top reviews on Amazon.com interesting and somewhat fitting — specifically for a review on Strength/Flexibility/Health/EDS and the patient population that I work with. Read a portion of the review below.
“I also think he misses one huge aspect of the health care system; the large number of people who think they have en exotic disease and do not want to hear they have plain old hypertension of diabetes. Not everyone has a rare disease. There is a reason for the old saying that when “you hear hoofbeats, think horses, not zebras”.”
It probably comes as no surprise that I could not disagree with this reviewer’s comments more – Zebras do exist and “rare” diseases are often not that rare – only rarely diagnosed. Ehlers-Danlos syndrome (EDS) is a perfect example of a not-so-rare condition. Mast Cell Activation Syndrome (MCAS) is another one. Both conditions are comorbid to each other, and perceptions in the medical field similar to what the reviewer above stated, are exactly why those with undiagnosed EDS, MCAS, and other related conditions are often the product of medical misdiagnosis and more traumatically, medical mistakes — the essence of why The Patient’s Playbook was written. In a world of countless not-so-rare medical conditions, many of which have yet to fully be understood, patients need help navigating the healthcare system and advocating for themselves. They need help finding the best care possible.
The Patient’s Playbook serves as an essential handbook for anyone wanting to learn how best to advocate and empower themselves in what is an often an unsettling, and uncontrollable situation.
To learn more about The Patient’s Playbook and its author, read below:
About the book:
“More than 400,000 Americans die each year as a result of preventable medical errors — mistakes, complications, misdiagnosis and more problems that should never happen to you. Many more of us are not receiving the best care possible, even though it’s readily available and we’re entitled to it. The key to getting the best care is knowing how to access it.
The Patient’s Playbook is a call to action. It provides actionable steps that will teach you how to get to The No-Mistake Zone™ in every medical situation.
Leslie D. Michelson has spent 30 years helping people achieve superior medical outcomes at every stage of their lives. In his book, he presents real-life stories and easy-to-follow strategies for navigating myriad health care dilemmas.
The Patient’s Playbook is an essential guide to sourcing excellent physicians, selecting the right treatment protocols, researching with precision, and structuring the ideal support team. Along the way you will learn:
- » Why having the right primary care physician will change your life » 3 things you can do right now to be better prepared when illness strikes
- » The 10 must-ask questions at the end of a hospital stay
- » How to protect yourself from unnecessary and dangerous treatments
- » Simple actions that ensure your doctors are performing like a team
- » How to identify the best specialist for any diagnosis
- » Ways to avoid the 4 most common mistakes in the first 24 hours of a medical emergency, and much more…
The Patient’s Playbook will enable you to become a smarter health care consumer and replace anxiety with confidence.”
To read more, go to http://patientsplaybook.com/the-book/
About the Author:
“Leslie Michelson is the Founder, Chairman and CEO of Private Health Management, a unique, patient-focused company that has helped thousands of people to obtain exceptional medical care. His new book, The Patient’s Playbook: How to Save Your Life and the Lives of Those You Love, distills his three decades of experience as a medical-case-management expert into actionable steps and practical tools that will empower readers everywhere to achieve the best possible health outcomes at every stage of life. He frequently speaks to audiences around the world, providing life-saving information and a revolutionary approach to medical decision-making.”
Where to by The Patient’s Playbook:
Recently released in paperback on October 18th, 2016 – http://amzn.to/2e9dxD5
Hardcover – http://amzn.to/2e9dxD5
Follow Leslie Michelson and information and details on The Patient’s Playbook:
Website – www.thepatientsplaybook.com
Facebook – https://www.facebook.com/PatientsPlaybook/
- Huffington Post’s article on The Patient Playbook – http://m.huffpost.com/us/entry/12503920
- Post on The Patient Playbook’s Facebook page on hypermobility – https://www.facebook.com/PatientsPlaybook/posts/1499760940038923:0
- Article referenced in The Patient Playbook’s post on hypermobility – http://www.berkeleywellness.com/fitness/injury-prevention/article/are-you-double-jointed?ap=40