Lyme Disease UK representatives, along with those from other charities and patient groups, were invited to take part in the UK Government Independent Reviews on Lyme disease, commissioned by the Department of Health. Our participation was made up of a face to face consultation with the researchers as well as the submission of survey responses.
This is what the research teams set out to find out:
- 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
The effectiveness of different approaches for preventing Lyme disease
The reports are now available as five separate papers which can be found here.
Surveillance systems were examined in Europe and North America and the conclusion drawn was that the UK is unusual as systems in other countries often rely on doctors informing authorities if someone is diagnosed with Lyme disease in addition to laboratory notification, whereas the UK relies on laboratory notification in isolation.
Under-reporting is likely to be an issue, making incidence rates uncertain and patients groups drew attention to the apparent lack of knowledge amongst clinicians, experienced first hand in our community. Coupled with the fact that testing is flawed and research into better treatment protocols is desperately needed, LDUK representatives and other patient groups were able paint a picture of what it is like to fall into an area of medicine so shrouded in uncertainty as well as shed some light on the patient experience.
The review examined below was carried out in two stages. In the first stage, the existing research was surveyed and relevant papers extracted, examined and summarised. Of the 50 research papers included, only 1 small survey was from the UK. This demonstrates the lack of research on Lyme disease within the UK. In the second part, stakeholders from the UK were consulted on how much the conclusions drawn from the foreign studies resonated with the UK experience. Regrettably, throughout the majority of the report, these two strands, non-UK research and UK responses, are intermingled such that it is necessary to read with great care. It can be difficult to distinguish whether comments eg about clinicians, are about non-UK clinicians or doctors in the UK.
Stakeholder experiences of the diagnosis of Lyme disease: A systematic review
(Brunton G, Sutcliffe K, Hinds K, et al. (2017)
1) ‘Four main arguments were used by researchers to justify the need for a study on diagnosis: that laboratory tests for Lyme disease are limited, that precise and timely diagnosis is important, that Lyme disease symptoms make diagnosis a challenge and that there are gaps in the evidence base around Lyme disease diagnosis’ (p.15)
2) ‘Gaps in the existing evidence base were noted in 11 studies, including a lack of good evidence for diagnostic tests generally, a lack of evidence for diagnosing Lyme in children, a lack of evidence comparing test use in different regions and a lack of evidence about tests for specific stages or manifestations of Lyme disease’ (p.6)
3) ‘Laboratory tests for Lyme disease have significant limitations relating to the accuracy of the tests, the timing of tests, a lack of consistency in interpretation of test results and the expense and time associated with conducting tests’ (p.6)
‘Very few of the public advocacy group members we consulted reported a straightforward diagnosis of Lyme disease’ (p.40)
4) ‘Clinicians find it challenging to diagnose Lyme disease accurately due to the wide variation in symptoms, the infrequency with which they see the disease in practice, their level of confidence about being able to diagnose correctly, the ambiguity they experience about diagnostic tools and their beliefs and behaviour relating to atypical or recurring symptoms’ (p.16)
‘The studies of clinician experiences noted that some clinicians were uncertain of what to do with patients who had a negative test result’ (p.35)
5) ‘Overall knowledge of Lyme disease etiology, epidemiology and diagnostic processes were still well below 100% in any group under study. Studies of patient views suggested that patients picked up on this, and clinicians were often described by patients as having low levels of knowledge’ (p.35)
“I think we are missing valuable information in the UK with so many seeking diagnosis, testing and treatment overseas because they aren’t getting answers here in the UK” (p.22)
6) Participants from all eight patient advocacy groups described a view that patients were denied diagnosis by sceptical clinicians. These clinicians were described as explicitly denying the existence of persistent symptoms of Lyme disease or informing patients that they ‘don’t deal with Lyme’ (p.29)
“Infectious diseases laughed down phone when given my private test results. Not just not believed, but laughed at and ridiculed” (p.30)
7) ‘Whilst patients in the views studies did describe the need to do independent research on Lyme disease, feedback on these findings from UK patient advocacy groups suggested that they experienced clinicians as being defensive in the face of patient knowledge and advised them not to educate themselves on the internet’ (p.35)
8) ‘Studies of patient views described clinicians’ responses as ranging from helpful and supportive to dismissive or even hostile. Patients also suggested that they felt undermined by clinicians who ascribed a psychological cause to their suffering’ (p.35)
‘Many of the alternative conditions, such as Chronic Fatigue Syndrome and Fibromyalgia, are labels which describe people’s symptoms and leave patients feeling deflated as the root cause of the problem is not being established’ (p.29)
9) ‘Both patients and clinicians involved in the July 2017 consultations recognised that similar constrains hindered practice. Many described clinicians feeling anxious about losing their licence to treat, being vilified by their profession or being ‘chased’ by authorities’ (p.21-22)
“There are doctors who have been chased by GMC for trying to do a bit more. You’re really putting things on the line by trying to push the limits of what you can give a patient” (p.22)
10) ‘Many stakeholders described the ‘frustration’, ‘fear’ and ‘trauma’ of uncertainties surrounding diagnosis. Stakeholders strongly expressed a view that diagnosis is delayed as all symptoms are not considered together; all eight patient groups commented on this’ (p.29)
“When you go to the cardiologist you’re just a heart, and when you go to the dermatologist you’re just a piece of skin. You’re not going to twig Lyme disease like that” (p.29)
11) ‘Many groups also agreed with the findings about negative impacts for society because of delays to diagnosis and the consequent lack of treatment. Stakeholders described patients having to sell or re-mortgage their homes in order to pay for private treatment (p.30)
“When you fall off the career ladder… you can’t get those years back!’” (p.30)
“We’re going to cost the NHS more money if nothing is done. Last year I went to hospital 36 times. I’ve got surgery on Thursday because of the damage that has been done. I’ve been out of work, I can’t give anything back to the country” (p.30)
12) The patient stakeholders also agreed with the need for self-advocacy. However, they further illuminated how the need to advocate could have negative consequences (p.31)
“I agree with the literature, people find themselves in position where they have to push, argue or confront. But this makes them appear in a certain way” (p.31)
“I can’t put into words the level of suffering you experience, and at the same time as having to navigate all this judgement about your treatment choices. It’s a really desperate situation” (p.31)
13) ‘Rather than multiple referrals to specialists for specific symptoms, a more holistic approach to care is suggested. This could take the form of care provided by a multidisciplinary team, with one professional designated as the lead provider for the patient’ (p.39)
‘There is room for clinicians and patients to work together in resolving the issues identified’ (p.41)
LDUK sincerely hopes that the NICE committee will take the review findings on board when finalising the Lyme Disease Guideline, due for publication in April 2018. LDUK has commented extensively on the NICE Draft Guideline and our comments can be found here.
We also hope that these review papers will serve as a roadmap for the huge amount of work which needs to be done to better the situation for Lyme disease patients in the UK. Thank you to everyone who took part in this welcome process.
Some useful and practical conclusions and suggestions came out of the paper examined above which states the following and also references the NICE process:
‘Findings from our review suggested some possible approaches for mitigating the problems different stakeholders experience around Lyme disease diagnosis. For example, our review suggests that patients and clinicians could acknowledge diagnostic test inaccuracies and consider together the limitations of tests. Co-investigation/shared decision-making may help patients and clinicians work together to tolerate uncertainties in diagnosis. This will help both stakeholders to establish a plan for proceeding with further observation, testing, treatment or referral (Politi 2011).
Source: Brunton G, Sutcliffe K, Hinds K, et al. (2017) Stakeholder experiences of the diagnosis of Lyme disease: a systematic review. London: EPPI-Centre, Social Science Research Unit, UCL Institute of Education, University College London.
Read more here.