Survey: Is the NICE guideline for Lyme disease being followed?

Caudwell LymeCo began the year 2016, as soon as the charity was founded, by giving UK Lyme disease patients a voice with our survey of 500 people. The survey highlighted years of neglect for almost all our respondents, alarming delays in their diagnosis and, for most, insufficient treatment that left them unable to resume their previously healthy lifestyles. Our founder, John Caudwell, and our CEO, Veronica Hughes, took the heart-breaking survey results to the then Health Secretary, Jeremy Hunt, and the CEO of NHS England, Simon Stevens, accompanied by an impassioned plea from Mr. Caudwell to do something about the problem of Lyme disease patients living with years of illness.

Shortly afterwards, the National Institute for Health and Care Excellence announced that it would be producing treatment guidelines for Lyme diease, based on all the available published research. Caudwell LymeCo played a very important role in their formation, explaining to doctors throughout the committee meetings the patient experience of having Lyme disease, and of experiencing diagnosis and treatment. The NICE guideline for Lyme disease came out almost a year ago, in April 2018.

We are now asking UK Lyme disease patients to speak out again, with a new survey focused on the NICE guideline. Are doctors following the guideline? Are they making mistakes? Are patients any more satisfied with the care they are receiving? And above all, are more people being diagnosed or cured than before the guideline came out?

If you have, or have had, Lyme disease and are resident in the UK, please answer our survey, especially if you caught Lyme disease since April 2018. Most people take 5 minutes to complete it. Your answers are anonymous.

As with our previous survey, we plan to share the results of this survey publicly, and with NICE. Our first survey’s results were cited in the government’s Independent Enquiry into Lyme disease, are often quoted by MPs and are being studied by the NICE Quality Standards Committee. Let’s make sure this new survey for 2019 gets even more attention.


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