Our vision 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 diagnose Lyme disease reliably, how to cure it in everyone and even on 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?
What has Caudwell LymeCo achieved so far?
We gave UK Lyme patients a voice with a survey of 500 people
We surveyed 500 UK Lyme disease patients on their experiences of diagnosis and care. We delivered the survey results in person to the Health Secretary (Jeremy Hunt) and the CEO of NHS England (Simon Stevens), along with an impassioned plea to do something about the problem.
The survey asked 24 detailed and specific questions about the diagnosis pathway and care they had received on the NHS, and what they would like to see improved. The results were analysed carefully and presented as a series of graphs and tables, along with some moving quotations about patients’ feelings of abandonment and neglect, fear and anger. Whilst not a piece of academic research, the survey exposed some alarming results which merited deeper investigation.
We triggered a government-sponsored Independent enquiry
Our meeting with the Health Secretary resulted in a government-commissioned independent enquiry into the issues raised and described by our patient survey. The LymeCo Charity survey report was passed on by Simon Stevens to the government’s Chief Scientific Adviser, Professor Chris Witty of the Department of Health. The contents of the charity’s online patient survey were taken into consideration when the enquiry scope was planned, and we were not surprised when the Independent Enquiry confirmed our findings.
Published in December 2017, the 5 reports of the Independent Enquiry are a key source of information for policymakers, healthcare practitioners, patients and researchers. They put an official stamp on the problems that Lyme patients have been trying to tell the government and healthcare services about for years.
Key enquiry findings:
1 – The official statistics are under-reporting the true incidence of the illness;
2 – Patients are under-diagnosed, and can easily tell that their doctors usually know little to nothing about Lyme disease; and
3 – The lack of clinical knowledge causes a breakdown of doctor-patient trust.
We helped develop the first ever NICE guideline for Lyme disease which updates clinical practise
Our Chief Executive Veronica Hughes was a lay-member of the NICE guideline committee for Lyme disease. The committee of doctors and patients, supported by NICE analysts, studied published research as the basis of their recommendations for NHS doctors on how to diagnose and treat Lyme disease.
The evidence did not provide conclusive answers to many of the key questions, meaning the committee had to carefully consider how to handle the uncertainties. Veronica advocated for the best interests of people with Lyme disease – given the limitations of the research – by making reference to her own experiences as a Lyme disease patient as well as suggesting ways that the uncertainties in the published evidence might be handled in clinical settings.
Published in April 2018, the NICE guideline for Lyme disease made important steps forward compared to previous NHS policy:
1 – Clarification that Lyme disease can be caught anywhere, not just in certain regions and not just in forests.
2 – Recognition that the diagnostic tests have limitations, and should be repeated in circumstances of uncertainty.
3 – Clinical diagnosis is encouraged because tests are not always reliable.
4 – The risk of congenital Lyme disease is highlighted with recommendations to help mother and baby.
5 – Longer courses of antibiotics, and higher doses than those previously given, are recommended.
6 – Doctors are warned that Jarisch-Herxheimer reactions can occur – this means patients may feel a lot worse before they feel better.
7 – The research recommendations will be fast-tracked into the Department of Health for funding consideration.
Our founder pledged over £1 million for research
In July 2018 chairman has pledged “substantial funding” – meaning upwards of £1 million – from his personal wealth to the Department of Health on condition they also pledge government funds for Lyme disease research.
An offer of this kind by a private individual has never been made in this country before.
We launched our free Lyme awareness talks
In April we launched our FREE Lyme disease awareness and education talks, delivering our first one to staff at Staffordshire Wildlife Trust, with great feedback.
We’ve since delivered another five talks, reaching over 200 people. We hope to expand the programme and reach over 500 people in 2020.To find out more or book a talk in your community – or to become a volunteer and deliver talks yourself – visit our talks webpage.
We helped to form the NICE Quality Standard for Lyme disease
The NICE Quality Standard was published in July 2019, which aims to work alongside the NICE Guideline and help identify areas of improvement in the care of Lyme disease patients.
The charity was involved in the formation of this quality standard, sitting on the committee and feeding back the patient experience to help inform the quality statements that were made.
Towards the end of the month, BMJ Open published a study that sent shockwaves throughout the Lyme disease community and raised a great amount of media interest.
Rosie Milsom and John Caudwell were both interviewed for TV broadcasts about the study, which found evidence to suggest that UK annual cases of Lyme disease are three times higher in number than previously thought.
Discussions on Lyme research began with Department of Health & Social Care
John Caudwell along with Rosie and Trustees of the charity met with the Department of Health & Social Care in September, to discuss plans for research into Lyme disease.
They acknowledged that Mr Caudwell’s lobbying and generous pledge towards research had spurred on their plans, which include a research project to find a more accurate diagnostic test, which we are in discussions to co-fund.
We raised awareness on Lyme with health professionals
We also hosted an exhibition stand at Guidelines Live 2019, a conference for primary care health professionals to help them share best practice and make sure they’re up to date with the latest health Guidelines.
We spoke to practice nurses and GPs about their experiences of Lyme disease, took requests for leaflets, and handed out resources on the NICE Guideline, Quality Standard and GP Toolkit.
We also attended a research workshop, hosted by Public Health England and the NIHR Health Protection Research Unit for zoonotic diseases. They invited Lyme charities, patient groups and organisations to present their research priorities, and gave an update on the current status of research in the UK – as well as some agreed priority areas for future research. You can read about that in our blog.
We have helped over 600 patients
Since the charity was founded, it has helped close to 500 patients by answering their questions about Lyme disease. In some cases, the CEO speaks to patients or speaks directly with their GPs to inform them of the contents of the NICE guideline.
Since the guideline was published, the charity has noticed progressive improvement in the experience of patients as a whole. We do not want to give the impression this problem is almost resolved; this is far from being the case. However, we have seen some steps forward achieved by the publication of the guideline.
Signs of progress:
1 – The number of patients who are diagnosed promptly has steadily increased.
2 – The proportion of these patients who are tested for Lyme disease with appropriate timing has increased.
3 – As a result of the charity’s intervention, the proportion who are prescribed correct doses of antibiotics has increased significantly.
4 – With the charity’s intervention, the proportion of people who are prescribed a second course of antibiotics has increased.
5 – The number of people whose symptoms resolve after treatment has increased.
How is John Caudwell involved in Caudwell LymeCo?
John Caudwell is the founder and principal source of funding for Caudwell LymeCo. 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.
As a Lyme disease sufferer himself, Mr. Caudwell is the charity’s spokesman who makes regular media appearances to raise the profile of Lyme disease.
The charity has two full-time staff members who run the organisation on a daily basis, sharing information with the public, lobbying and fundraising.
Do you want to 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 welcome support of all kinds to meet Caudwell LymeCo charity’s objectives.
Find out how you can get involved.
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.