(This report has been produced in agreement with the researchers)
In May 2016 it was announced by then Public Health Minister, Jane Ellison, that the Government would be ordering a major review into Lyme disease. This followed meetings between John Caudwell, Veronica Hughes (CEO of Caudwell LymeCo Charity), Sir Simon Stevens (CEO of NHS England) and Health Secretary, Jeremy Hunt. Professor Chris Whitty was appointed to lead the reviews. John and Veronica’s interview with him, discussing his initial ideas, can be found here.
In a development aimed at making the reviews complement, but not duplicate, the NICE guidelines process, the scope of the reviews was changed to encompass the creation of an evidence map and 3 systematic reviews of research relating to incidence and prevalence, stakeholder views about diagnosis, and approaches to prevention. The Department of Health Reviews Facility is carrying out the research. The Reviews Facility is an independent collaboration between EPPI-Centre (Evidence for Policy and Practice Information and Co-ordinating Centre), at the UCL Institute of Education, the Centre for Reviews and Dissemination (CRD) at York University and PIRU (Policy Innovation Research Unit) at the London School of Hygiene and Tropical Medicine. They specialise in pulling together and using research to inform those making social policy decisions. They have expertise in looking for and synthesising research, and regularly work on public health issues but do not have specific knowledge or experience of Lyme disease. A number of small groups, within the multi-disciplinary larger team, have each been exploring a different aspect of the systematic reviews with the intent to draw together findings on the range of issues examined.
Their aim was to map the entire research literature on Lyme disease, including published and unpublished studies, and then organise and select from it the evidence to produce the systematic reviews on the three topic areas. The comprehensive nature of the literature search is seen as key, to avoid the bias often seen if only selected studies are reviewed.
A key part of their process was to talk to various Lyme disease patient and stakeholder groups to discuss their draft findings in one particular area: the review of existing research into patients’ and health professionals’ perspectives on diagnosis of Lyme disease. Lyme Disease UK was pleased to be able to make a contribution to this on 19th July 2017. The discussion was about the team’s initial findings from research evidence reporting patient and practitioner views on, reactions to and experience of Lyme diagnosis, not about the science of diagnosing Lyme disease.
The process involved presentation of a summary of the research team’s findings and then listening to our reaction to, and comments about, these findings. In particular they wished to hear how and to what extent the UK response was similar to what they had found from the US, Canadian and French studies. They had clearly already noted the complete absence of relevant research evidence from the UK. They assured us that absence of research data would be remarked upon in their report for the Department of Health.
We had arrived prepared with a long list of experiences we wished to communicate and we were pleased to find that the vast majority of our points were already familiar to the researchers from their analysis of the research evidence. We were presented with a string of chosen quotations which, in the main, resonated deeply with the experiences of LDUK members. We were able to emphasize and illustrate these and also to present extra material which had not sprung out of the presentation. We were impressed that they said they had reviewed 23,000 papers, studies and articles potentially about Lyme disease in humans, and had categorised those which fell outside the remit of the current reviews, so this information is available for future researchers. The discussion was informal and friendly, we felt as though we had been heard and believed, although at times we detected surprise at the depths and extremity of the patient experience. The nature of the quotations they presented to us was of continuing ill-health: the team have included research evidence which considers the potential existence of chronic Lyme.
The presentation of the themes they had already acquired combined with the reception we received, leads us to believe that this part of the systematic review will paint a picture of patients’ challenging experiences when communicated in their published report, but we will have to wait to see the final report. The draft report, drawing together all they have learned from these interviews, should be ready for our team to look at in September and they hope to publish before the end of the year.
We are grateful to them for listening carefully to what we had to say and grateful to John Caudwell for his efforts in pushing the Government to commission these reviews.
We were also pleased to be able to give the 3 interviewers a quick lesson on tick removal and leave them with a gift of a couple of tick-twisters. Having read and heard so much about the consequences of being infected, they were an attentive audience!
Concerns we raised with the research team
We were able to discuss the majority of our prepared material, and illustrate it verbally with our experiences drawn from discussions in the group. We were also able to leave the material with the team, as well as some extra information, including personal accounts of patients who have previously given us their stories for publicity purposes, and some selected research information.
Full copies of the prepared material are available in the links below:
In brief, the points we raised were:
- Flawed understanding of many doctors around rarity, self-resolution, necessity for awareness of tick-bite by the patient, and attachment time.
- Flaws in the testing regime, including reliance on antibodies, designed to minimise false-positives, reliance on just one type of test, lack of research, reliance on ELISA as a screen.
- Misapplication of testing and diagnosis, including treating EM on sight, recognition of EM rashes, frequency of EM rashes, recognition of “summer-flu”, incorrect timing and use of tests, understanding that negative serology does not rule out Lyme, existence of sero-negative disease, EBV cross-reactions question, IgM issue, lack of use of all signs, symptoms and tests to lead to a clinical diagnosis.
- Flawed treatment regime, including ignoring the biological characteristics of Borrelia, ignoring persistence, the weakness and shortness of acute treatment, status of “chronic Lyme”, treatment by time-table not symptoms, no tracking of progress to determine treatment.
- Misapplication of existing treatment regimes, including giving close to minimum antibiotic courses, declaring patient “cured”, rare use of IV when appropriate, rare use of repeated courses, no understanding of herx reaction.
More general concerns we raised were around:
- Mistakes by doctors leading to ineffective management
- Poor and misleading communication throughout the Lyme context
- The perception of patients “pursuing” a Lyme diagnosis
- No discernible attempt to increase doctor understanding
- Isolation of patients
- Difficulty of getting test results
- Inappropriate attempts to minimise antibiotic use
- Ignorance of implications of co-infections
- No strategy to protect the public
- Criticism of patients who consult private overseas doctors
- Gap between the theory and practice of NHS care