About Caudwell LymeCo Charity

What is Caudwell LymeCo?

Caudwell LymeCo is a charity founded and sponsored by John Caudwell dedicated to promoting the health of Lyme disease sufferers in the UK and beyond. Our ultimate goal is for every Lyme disease patient in the UK to be treated and completely cured on the NHS. Currently, there are serious gaps in the scientific evidence on how to cure Lyme disease, how to diagnose it reliably and even on how many people have it and how it spreads. The NHS and the Department of Health have openly recognised this, and Caudwell LymeCo aims to support them in working constructively to resolve this complex problem.

What does Caudwell LymeCo do?

Caudwell LymeCo primarily raises money to fund desperately needed research into Lyme disease. We also educate the public on Lyme disease prevention and awareness. Having worked with NICE to develop treatment guidelines for Lyme disease, we advise patients on current NHS treatment standards. We are committed to evidence-driven, thorough research, and do not take stances on particular medical disputes.

What contemporary issues is Caudwell LymeCo engaged with?

Caudwell LymeCo is witnessing a period of rapid change in the situation for Lyme disease patients in the UK, following years without tangible progress. The charity’s founder, John Caudwell, triggered a watershed moment when he appeared on television and described his family’s experiences suffering from Lyme disease for years without diagnosis, and the charity still receives grateful messages from other patients who recognised their own, as-yet undiagnosed symptoms when he spoke.

Mr. Caudwell founded his own charity and one of its first acts was to visit health secretary Jeremy Hunt and persuade him to commission an independent enquiry into the situation for Lyme disease patients in the UK. At about the same time, the NHS commissioned the development of formal treatment guidelines for Lyme disease in England and Wales.

Our Chief Executive Veronica Hughes worked as part of this NICE guidelines committee for Lyme disease, which evaluated the published research on Lyme disease and developed treatment guidelines for NHS England for the first time. As part of this committee, she was also involved in the formulation of research recommendations to be considered by the Department of Health, which could ultimately form the basis of future updates to the guideline. Caudwell LymeCo is also closely following the All Party Parliamentary Group for Lyme disease in Westminster, offering information and suggestions.

Read news updates about what we do.

What is the relationship between Caudwell LymeCo and the NICE Guidelines?

Caudwell LymeCo CEO, Veronica Hughes, held a position as a lay member of the NICE guidelines committee for Lyme disease. Her role on the committee was to explain her experiences as a Lyme disease patient, not to represent the individual opinions of Lyme disease patients. The committee met regularly during 2016 and 2017, to use objectively evaluated and graded research papers on Lyme disease as the basis for new, evidence-based treatment guidelines for NHS doctors.

Read a summary of the NICE guideline for Lyme disease

How is John Caudwell involved in Caudwell LymeCo?

John Caudwell is the founder and principal source of funding for Caudwell LymeCo, a charity with the aim of giving Lyme disease sufferers throughout the UK hope for a better future. Along with much of his family, Mr. Caudwell suffers from Lyme disease himself, and as a patient he is personally motivated to make a difference. Mr. Caudwell pays all the operating and administrative costs of Caudwell LymeCo charity, which means that every penny donated to the charity will be used exclusively for the charity’s legally defined objectives.

The charity has a small team of trustees who are involved in its day-to-day running.

How can we get involved?

Our philosophy is that the entire Lyme community needs to come together to deliver lasting change to the way the NHS and UK government treats Lyme disease patients in the UK; Mr. Caudwell’s financial support on its own will not achieve this outcome. We therefore invite and welcome support of all kinds to meet Caudwell LymeCo charity’s objectives, including fundraising activities, awareness raising work of any kind, and more general voluntary work for the charity.

Find out how you can fundraise for Caudwell LymeCo.

How will donations be used?

Caudwell LymeCo puts all donations towards research into Lyme disease.

Find out more about how we plan to use donations to fund research into Lyme disease.

 

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