Helping WHO?
Written by Huib, published Tuesday June 27th, 2017
Helping WHO?
WHO is supporting countries to progress towards universal health coverage by designing health systems around the needs of people instead of diseases and health institutions, so that everyone gets the right care, at the right time, in the right place. This is a laudable goal.
According to the movie, which will be based on their statistics, in the current situation around the world:
- not all people are informed or consulted in the care they receive
- not all people have the risk of their treatment explained to them (this is called ‘informed consent’)
- 20% has at least one unnecessary test
- 40% of health spending is wasted due to inefficiency
Health care should not be like this, it says. I am 99,9 % sure that you agree. That you also want to be informed, respected, supported, treated with dignity and compassion. In short: be engaged in your own health, as the movie narrator puts it.
Data on prevalence
The WHO’s international classification of diseases (ICD) codes for Lyme borreliosis are outdated and do not represent the many complications from Lyme, including Lyme nephritis, hepatitis, aortic aneurysms, persistent infection, strokes, dementia and congenital Lyme disease.
Surveillance efforts to count the numbers of Lyme infections use codes that capture a fraction of the Lyme cases. These codes result in an under-reporting of the prevalence of the disease.
So that is where you come in
If you want to participate to improve the trust, experience and outcomes of current health care, you can help the WHO getting a better insight into how many misdiagnoses, unnecessary tests, lack of informed consent you received and for what period of time. And thus – by estimation – how much health care money was wasted, due to poor surveillance. Which may be called ‘inefficient’ indeed.
You can do this by going to the ‘comment’ section under the movie and add the following information:
- Country
- Age
- Time you have been ill
- Names of misdiagnoses
- Name of proper diagnose
- were you informed or consulted in the care you received (for these wrong diagnoses)?
- was the risk of these treatments explained to you?
- Amount of unnecessary tests
- Estimate of the amount of inappropriate health care (in hours, days, years)
- Number of tests needed to get proper diagnose
- And the proof of the pudding: did you get better (cured or functioning better) after appropriate treatment?
I’ll give you my input as an example:
- Country: The Netherlands
- Current age: 46
- I have been ill for 32 years
- Names of misdiagnoses: MS, thrombosis, whiplash, coronary issues, mental issues, chronic sinusitis, blabla, unknown muscle problems (nearly leading to an amputation)
- Name of proper diagnose: Lyme disease
- Amount of unnecessary tests: over 60
- There has been no informed consent, apart from the alternative Lyme treatments
- Estimate of the amount of inappropriate health care: a few years
- Number of tests needed to get proper diagnose:1
- Outcome: I am either cured (or at least fully functioning) for the last ten years
Actual costs can hardly be calculated by you yourself, as many hidden costs are covered in the profit-loss management by the insurances. However, based on your input, the WHO will get more insights in global cost-efficiency.
Thank you
for helping the WHO to work with your country to put you and your needs at the centre of care, which will get you the care that you deserve (according to the movie). I would recommend abstaining from adding angry or emotional remarks. Let the facts speak for themselves.
I would also suggest to make a screenshot of your own comment – before you publish it. Sometimes entries can somehow disappear.
Do send me a copy of it, as we may find it useful in our work on the Human Rights side of current Lyme policies as a show case of WHO is somehow missing its own policies of stakeholder involvement in case of Lyme disease.
You can find out more about it in a press release, that will be published soon.
Cheers,
Huib
P.S. if you want to know what I did to get well again, you can read the whole story in Shifting the Lyme Paradigm or a shorter version in an old blog post on the On Lyme website. In the book you will find many more ideas to use unexpected approaches and actions to move the current situation, with a grin instead of being angry or complaining.
drs. Huib Kraaijeveld
"This book perfectly describes the plight of millions of patients, who suffer from chronic Lyme Disease in many countries all over the world."
Prof. Christian Perronne, France
"This book is a gift of truth and passion to humanity."
Mia Morales, Lyme patient, USA
"I received the book exactly on the day that I had decided to end my life. Huh?! Yep. I am 35 years old years and have been ill for 19 years. Now I know why: Lyme. Everyone should read this book!"
Miranda, the Netherlands
"This book offers a new practical, human centered way of dealing with health information. It is also ringing a bell for the new time how to work together towards health and thriving."
Kim Schimmler, MD, Germany
"This pioneer's work made it perfectly clear that, when "i" becomes "we", even illness becomes wellness."
Frans Vermeulen, journalist, the Netherlands
"In his crucial work on Lyme disease, dedicated social researcher Huib Kraaijeveld does not pretend to have all the answers, but guides us towards asking the upsetting and essential questions."
Prof. Cees Hamelink, professor Communication Sciences & Human Rights, the Netherlands
"This book reads like a thriller! It touched me deeply and I am sure it will change the course of history."
Linda Graanoogst, journalist, the Netherlands
"Well, I am wiping my eyes and blowing my nose, while tears stream down my face. I guess that is a good sign. You hit the nail on the head claiming that Lyme survivors need 'understanding'. I would like my own partner to read this book."
Anodea Judith, PhD & author, USA
"What an awakening perspective! Huib has successfully set a quantum leap for understanding and managing Lyme disease by common people."
John Wong, bestselling author, Singapore
"A true and unpretentious caretakers' guide to understand Lyme. This book will help you to completely understand what your friend is going through; regardless of the symptoms they have. I wish it had been written ten years ago, because it can actually save lives!"
Cheryl Versalle, Lyme patient, USA
"This book actually speaks to people beyond its target audience (caretakers of people with Lyme Disease): people like me who are not travel companions, but to whom it is not hard at all to have or develop understanding and compassion. This makes the reach of this book bigger, much bigger if you’d ask me. I am amazed a book can do all of this!"
Saskia Steur, business blogger, the Netherlands
"This book reads like an exciting novel, were it not that it concerns a deadly serious issue. It calls to contribute and take care of each other and our world. Read, weep, feel and act!"
Manfred van Doorn, leadership expert, the Netherlands
"A creative and very intelligent vision to dive even deeper into the world of Lyme, to look at yourself, other people, but also the entire world around you."
Friend of someone with Lyme
"The book indicates that Lyme disease can be a sexually transmitted disease. This will cause a tidal wave of awareness all over the world. Like the child in the old fairy tale The Emperor’s New Clothes, who exclaimed: 'But the emperor is wearing no clothes!'"
Ola Aniel Petterson, STD campaign leader, Sweden
"What a brilliant sociological work! I am sure it will have much impact."
Professor Neuropathy, Germany
"This book is a big eye opener. Both for friends of people with Lyme disease as well as for people with Lyme. Or for any other health issues, for that matter."
Martin Möhrke, medical research leader, Europe
"I cannot read any other book for more than two minutes now, in this hell called Lyme. Yet yours I cannot stop reading! I should have put it away hours ago to clean the house. But I simply cannot stop."
Ineke, wife of a husband with Lyme, the Netherlands
"This book is a delight to read. It offers soft candlelight and warm campfire camaraderie on an often dark and lonely journey."
Laura Bruno, medical intuitive Lyme expert, USA
"A very honest and yet witty way of helping those with Lyme disease. This book is full of ideas on how to help your friend with Lyme, as a travel companion on this crazy journey called 'Lyme'."
Lisa Hilton, Lyme advocate, USA
"Both the personal experiences as well as the author’s sharp mind turn this into an incredibly inspiring book that raises the consciousness of its readers."
Kara, ex Crohn disease patient, the Netherlands
"Tempting, informative and eminently readable! Shifting the Lyme Paradigm is an absolute eye-opener for those who are not aware of what the journey of Lyme disease entails."
Terri Mackinnon-Cross, CEO WorldLymeDay.com, Canada
"This book gave us the recognition and acknowledgment, which were like a band-aid on an open wound."
Sara, Lyme patient, Belgium
"Very insistently written based on intensive, almost existential, personal experiences, this book also gives a clear overview of all relevant information for both patients and caretakers."
Jan Eendebak, former chairman Lyme Foundation STZ, the Netherlands
"A relief to read, written by an expert who shares his dedication to his own path with us, and brilliantly written."
Muna, mother of a daughter with chronic Lyme, the Netherlands
"Playful, frightening, informative and encouraging."
Merel, kinesiologist, the Netherlands
"This book made me realize that there is too little known behind the phenomenon Lyme. In a challenging manner the author provides understanding of Lyme disease and suggestions for tackling this disease. I have 'prescribed' this book to many of my patients and mostly astonishment was soon followed by recognition. An absolute must for anyone with (still) unexplained symptoms or the people close around them."
Duco Kanij, osteopath, the Netherlands
"This book guides you through the labyrinth of Lyme swiftly, while it took us YEARS to even get this far."
Eugenie van der Linden, ex-Lyme patient and therapist, the Netherlands
"This book is an absolute 'must read' for everyone! For patients, for family and friends, and for doctors who can finally learn that Lyme is more than what is written in their textbooks and that they should not be able to dismiss "unexplained" complaints as psychological too quickly!"
Anne Fierlafijn, MD, Belgium
"Shifting the Paradigm of Lyme is not like any other book on Lyme that I have read. It appeals to a higher consciousness, and is analytical in an introspective way that is pleasant to read. This book is a friendly and warm reminder that no Lyme patient is ever alone."
Thomas Grier, biologist, USA
"This book show how caring friends can intervene to provide succor and alliance ‘against the odds’ of a potentially serious and very complex illness that is still poorly understood by mankind."
Kenneth Liegner, MD, USA
