UK Government’s Independent Enquiry into Lyme Disease

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:-

  1. The nature and extent of research evidence on Lyme disease in humans;
  2. The incidence of Lyme disease in the UK and the type of surveillance systems in different countries;
  3. Patient, clinician and researcher experiences of Lyme disease diagnosis;
  4. Patient, clinician and researcher experiences of Lyme disease treatment; and
  5. The effectiveness of different approaches for preventing Lyme disease.

 

 

Main Conclusions and Recommendations

The report as a whole highlights the following headline conclusions:

  1. There are gaps in the evidence on treatment and prevention.
  2. The incidence of Lyme disease in the UK is increasing but still low compared to Europe and the USA. Under-reporting is likely.
  3. We need a strategy to deal with the effects of uncertainties surrounding Lyme disease diagnosis.
  4. We urgently need research on patient and clinician experiences of treatment for Lyme disease.
  5. 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:

  • diagnosis,
  • symptoms
  • co-occurring conditions
  • Lyme disease incidence

Research generally neglected the following areas:

  • Lyme disease prevention,
  • treatment,
  • risk factors
  • costs

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:

Prevalence, diagnosis, treatment and prevention of Lyme disease: an evidence map and four systematic reviews

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9 thoughts on “UK Government’s Independent Enquiry into Lyme Disease

  1. Thank you so much to John and Veronica for the huge undertaking to get this conversation initiated and then to get this amount of research reviewed thoroughly. A thorough review avoiding any inflammatory remarks!

    On the topic of under reporting, the UK lab threw out my blood sample in September 2015 from Medway hospital, and did tge same again in October 2015 from Royal Surrey Hospital. I’m not the only person they’re doing this to. In February 2016, I saved up enough money to get a test done in Germany that confirmed the presence of Borrelia in me.

  2. I believe Australians suffering with this insect-borne illness are having worse experience with GPs and health departments than those in UK or EU. Just shameful.

  3. Thank you for your hard work. I don’t think the government have got a clue just how many of us are out here. I for one am not on any statistics as having Lyme and I bet they will be shocked when the true number comes out. But how are we ever going to be counted when we are dismissed by all Doctors. Could you organise a massive event that we could all show up to for them to see that Lyme affects many lives? Thank you for everything you do for us.

  4. My son has been ill from 17 with Lyme and now 21. NHS diagnosed him with ME and IBS and he tried several times to take his life which pushed myself and my husband to dig deeper into his illness and a wonderful nutritionist found he had Lyme. Retested in Addenbrookes in infectious disease dept and was more or less told no way was it Lyme it’s rare! He is now being treated in Washington DC and making amazing progress. We still have a long way to go but to see my son live with some normality in his life gives me hope with this dreadful disease. Thank you for bringing awareness for Lyme.

  5. I had the basic NHS test . It was negative, I had a attached tic and then two weeks later the bullseye rash and flu symptoms which then progressed to other symptoms.
    I was refused more testing on the NHS. I went private and got bloods done in Germany via arminlabs all came back positive for three stains and some co/infections. My gp refused to except the result he said he got told by the uk Lab not to except results from other labs. I’ve had no treatment from the NHS. I am now currently very sick and unable to work. I can not afford private treatment as I’m now unemployed. Why is this happening? I want my life back!! The shocking thing is I now think my children are showing signs for Lyme and I don’t think they have been bitten!!
    Something needs to change and quick!!

  6. 2 people per 100,000? That is very surprisingly low to me. Lyme is undoubtably under-reported and under diagnosed. Once you become part of this group living with Lyme and co-infections and you know that you cannot rely on the medical establishment, you become somewhat of an expert in these diseases. You recognise collections of symptoms in others that aren’t diagnosed, maybe symptoms that you had yourself before something was the final trigger that sent you spiralling downhill. I dont remember a bite and I only know that – part of – my problem is Lyme because of the rash. When I see friends with Shingles, Fibromyalgia, arthritis, chronic coughs, depression, cardiac issues and/or other problems combined, I immediately start to think about which combinations of infections (including Lyme, mycoplasmas, viruses and parasites) are trying to get a hold and whether they will ever get a real diagnosis or treatment.

  7. Thanks to Veronica & the Cauldwell charity for trying to make a difference. I hope it will lead to better care sooner rather than later. I read the post with interest. One point I think is unlikely is that there are more cases of Lyme disease in Europe (first of all Britain is also Europe by the way!). I don’t think on the one hand we can claim there is under-reporting & diagnosis and then categorically state that the UK has less cases. It is unlikely, given the high incidence of ME/CFS & fibromyalgia in the UK, many cases of which could be undiagnosed Lyme (as you rightly point out the tests are failing many people).

  8. I was told I had ‘fibromyalgia 20 years ago! Soldiered on and then got bitten again in 2015, got a bullseye rash. Finally getting treatment privately in the USA. Thank you for fighting our corner. My GP was prepared to say in a letter to the local hospital, ‘she believes she has
    Lyme disease’. I have two positive tests from different labs and are so much better for sticking to the USA treatment protocol. We will get a win eventually, if not in my lifetime. Thank you so much!

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