Tuesday, 27 June 2017 08:47

Helping who? Featured

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The WHO, the World Health Organization, has recently published a short video about people-centred care. As a Lyme patient you will find the idea appealing. In this blog you will find out how to help the WHO reach its goals and create a sense of urgency in its member states. Including your own country. 




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The WHO's international classification of diseases (ICD) codes for Lyme borreliosis are outdated and do not represent the many complications from Lyme, including Lyme nephritis, hepatitis, aortic aneurysms, persistent infection, strokes, dementia and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:
  • 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 This email address is being protected from spambots. You need JavaScript enabled to view it. 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. 

Read 2073 times Last modified on Tuesday, 27 June 2017 13:28
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