PATIENT SURVEY: What does Lyme disease cost the NHS?

Please note, this survey is now closed. We have received our target 500 responses and we are analysing the results.  They will be published in due course.

Thank you to everyone who participated in the survey.

A MESSAGE FROM JOHN CAUDWELL

To all those sufferers who have confirmed diagnosed Lyme disease in the UK, could you all please complete the survey by  clicking the link below:

Take the survey button

The purpose of the survey is to collect data on what the average Lyme disease patient costs the NHS and the impact of not receiving adequate treatment.

We will point out to the National Health Service the annual cost of verified Lyme patients as a result of their past misdiagnosis and their current mistreatment.

Thank you to the Lyme community for your help and support in tackling this dreadful disease.

I am very hopeful that my actions will help transform the lives of hundreds of thousands of people eventually and that will be my reward!

A NOTE BY VERONICA HUGHES, C.E.O. OF CAUDWELL LYMECO

Please note that our first Lyme disease survey is limited to UK residents who have had a positive Lyme disease blood test from any laboratory (including the laboratory the NHS uses at Porton Down and overseas laboratories) or who have been diagnosed by a medical professional following the emergence of a Lyme disease rash, known as erythema migrans (EM).

We believe that a clinical diagnosis is crucial in the detection of Lyme disease and co-infections, but we have excluded patients who have not received a positive blood test result in our first survey. Future surveys will include a wider participant selection.

The current selection criteria is so that the results cannot be discredited by anyone asserting that some of the participants don’t really have Lyme disease. I am not endorsing the idea that positive serology or the presence of an EM rash should be the only diagnostic criteria, but I cannot enter into individual discussions on other diagnostic methods or clinical decisions if   if anyone tries to pick holes in my inclusion criteria.

By sticking to EM rashes and blood tests by certain laboratories, I know I can argue that every single person who has answered our survey has Lyme disease, because I feel confident in defending the validity of tests performed by the laboratories I have included.

Please will everyone who fits the criteria of this first survey help us by completing it and sharing it on your social media feeds?


VERY IMPORTANT: Your answers may be published anonymously on this website.

IF YOU DO NOT WANT YOUR ANSWER SHARED IN THIS WAY, LEAVE THE RELEVANT QUESTIONS BLANK

By Diliff - Own work, CC BY-SA 2.5, https://commons.wikimedia.org/w/index.php?curid=1634181

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