Origin of the Independent Enquiry
Back in spring 2016, the founder and sponsor of Caudwell LymeCo Charity, John Caudwell, and the charity’s Chief Executive, Veronica Hughes, met Health Secretary Jeremy Hunt and the CEO of NHS England Simon Stevens to talk about the problems surrounding lack of diagnosis, lack of treatment and therefore inadequate care for Lyme Disease patients in the UK.
Mr. Caudwell spoke about the poor performance of the diagnostic testing available to NHS patients, the lack of knowledge of GPs regarding both symptoms and treatment and the inadequate treatment therapies available under current NHS guidelines. The government had, and has, no official policy on Lyme disease and thus no strategy on how to improve care for patients, where research spending should be directed, how data on incidence of the disease might be gathered, and so on.
As a result of this meeting, the UK Government commissioned an enquiry into Lyme disease. An analysis of needs was required. The project was commissioned by the Department of Health in England, and will be of interest to policymakers, healthcare practitioners, patients and researchers.
The scope of the Enquiry
A research team at University College London carried out the research. They undertook a project to identify existing research evidence focusing on:-
- The nature and extent of research evidence on Lyme disease in humans;
- The incidence of Lyme disease in the UK and the type of surveillance systems in different countries;
- Patient, clinician and researcher experiences of Lyme disease diagnosis;
- Patient, clinician and researcher experiences of Lyme disease treatment; and
- The effectiveness of different approaches for preventing Lyme disease.
Main Conclusions and Recommendations
The report as a whole highlights the following headline conclusions:
- There are gaps in the evidence on treatment and prevention.
- The incidence of Lyme disease in the UK is increasing but still low compared to Europe and the USA. Under-reporting is likely.
- We need a strategy to deal with the effects of uncertainties surrounding Lyme disease diagnosis.
- We urgently need research on patient and clinician experiences of treatment for Lyme disease.
- Personal prevention measures and adult education about Lyme disease should be promoted.
We, as a charity, also note that there was almost no published research evidence from the UK on any of the topics studied by the reviewers. Almost all the published research on lyme disease comes from the USA and Europe and, for this reason, some of it may not correspond with the situation in the UK. We know that the prevalence of different strains of Borrelia burgdorferi, the bacteria that cause Lyme disease, vary by geographic region. This means that, with different varieties dominating here in the UK, the accuracy of diagnostic tests may be different for patients here; that treatments may have different results for UK patients; and that symptoms may differ, perhaps considerably.
One area in which the albeit small amount of published research from overseas did correspond well with the UK patient experience was the experience of diagnosis of Lyme disease. UK patient groups were consulted and with one voice spoke of the lack of accurate knowledge among doctors, a lack of recognition of symptoms, poorly timed tests which may reduce their accuracy, and often a lack of willingness among doctors even to consider Lyme disease as a possible diagnosis.
Key Findings in each paper
Our very brief summary of the key findings of each paper is outlined below.
Paper 1. The nature and extent of research evidence on Lyme disease in humans
1,098 studies were indexed. Research was mainly from the USA and continental Europe.
The research focused on:
- co-occurring conditions
- Lyme disease incidence
Research generally neglected the following areas:
- Lyme disease prevention,
- risk factors
Paper 2. The incidence of Lyme disease in the UK and the type of surveillance systems in different countries
Lyme disease is under-reported throughout the USA and Europe.
- UK statistics are for laboratory diagnosed cases only.
- Many other countries also gather data on cases diagnosed by doctors (based on rashes). In some countries this reporting is obligatory.
- However, this data is also gathered incompletely and the statistics are still inaccurate.
UK official data report that 2 people per 100,000 are infected with Lyme disease annually. The geographical distribution is uneven and there is a significant lack of qualitative data about high risk areas etc.
Paper 3. Patient, clinician and researcher experiences of Lyme disease diagnosis
Patients and doctors both reported uncertainty over Lyme disease diagnoses for the following reasons:
- concerns that laboratory tests are not always accurate,
- inconsistencies in the interpretation and timing of tests,
- low-levels of knowledge among clinicians
- challenges due to the wide range of symptoms
In some cases this uncertainty undermines the doctor-patient relationship and can also lead to a cost to society.
Paper 4. Patient, clinician and researcher experiences of Lyme disease treatment
The researchers found no published evidence on this topic.
Paper 5. The effectiveness of different approaches for preventing Lyme disease
The evidence on all these issues was of poor quality.
- Insect repellents and protective clothing may reduce incidence of tick bites.
- Education has not been clearly demonstrated to reduce the incidence of tick bites or Lyme disease.
Evidence on vaccinations and controlling the tick population was scarce.
The full reports
The five full reports can be downloaded here: