There can be a lot of misunderstanding around Lyme disease – such as what it is, and how it affects people, both in the short and long term. We recently asked our social media followers what they wish other people knew about Lyme disease, and we got a wide range of responses. Some wished for … More What you wish people knew about Lyme disease
The NICE Quality Standard for Lyme disease was published yesterday (10th July 2019). The quality standard covers diagnosing and managing Lyme disease in people of all ages. It also includes raising public awareness about prevention. It aims to work alongside the NICE Guideline for Lyme disease, helping to improve care of Lyme patients and increase … More NICE Quality Standard for Lyme disease now published
Last week, the QSAC (Quality Standard Assurance Committee) for Lyme disease met for the second and final meeting on the quality statements that will be provided for doctors, nurses, and other clinical staff when dealing with Lyme disease. The aim of quality statements A “quality standard” contains brief action-focused statements about a specific patient experience … More NHS Quality Standard for Lyme disease at Second Stage
The guideline will be one year old in a few weeks’ time: how many doctors know what it says? Caudwell LymeCo has just run a survey of 212 UK Lyme disease patients to find out how well their doctors seemed to know and follow the NICE guideline. The survey results we report here are based … More LymeCo Survey Results: Is the NICE Guideline being followed?
Last month, Lyme disease sufferer, Charlotte Pegg wrote to us to share some of the neurological symptoms that she’d been suffering from. She was keen to raise awareness of the more rare parts of the illness, so that anyone who experiences the same may spot them for what they are, preventing any delay in diagnosis: … More Case Study – patient shares rare symptoms of Lyme disease
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 … More Survey: Is the NICE guideline for Lyme disease being followed?
Seven outstanding volunteers have completed marathons in aid of the Caudwell LymeCo research fund this year, setting a new record as the first people in the UK to run marathons to raise money for Lyme disease research. Together they have raised tens of thousands of pounds, which will go towards vital research to help find … More Marathon runners set new record for Lyme disease research
You can now raise money for desperately needed Lyme disease research without actually donating a penny. All you have to do is some online shopping! Go to the Easyfundraising.com Caudwell LymeCo page. Sign up as a Caudwell LymeCo Charity supporter. Download the Easyfundraising browser button, so you remember to go to your shopping websites VIA the easyfundraising … More How to raise money for Lyme disease research without giving anything!
A visit to the Health Secretary and CEO of NHS England On 29th February 2016, John Caudwell and Veronica Hughes hand-delivered a selection of thirteen patient case studies to health Secretary Jeremy Hunt and to Simon Stevens, C.E.O. of NHS England. These case studies were selected to demonstrate the serious lack of care available for … More Giving Lyme Patients a Voice