“Lyme care on the NHS” survey results

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Caudwell LymeCo charity and Lyme Disease UK collaborated in running a survey of UK Lyme disease patients from February to April, 2016. The survey was conducted online, and respondents were recruited through social media, including the LDUK support group. We asked patients about the care they had received for their Lyme disease on the NHS.

We have produced a PDF document which gives the aggregated responses to every question in the survey:

“Lyme on the NHS” survey results (PDF)

We have also produced documents giving fully detailed answers to questions which requested qualitative rather than numerical data. The most noteworthy of these were question 23, which asked patients about their quality of life:

Q23 How has having Lyme disease affected your quality of life?: read detailed responses (PDF)

And question 24, which asked patients what they want the NHS to do to help them and others with Lyme disease:

Q24 What do you want the NHS to do to help people with Lyme disease?: read detailed responses  (PDF)

An overview of the responses

Below, we discuss the answers to a selection of the questions. Full statistical information relating to each point can be by downloading the full report in PDF format (link above).

Many patients report suffering years of chronic disease

Question three showed that over half the survey respondents had been ill for over 2 years since initially catching Lyme disease, and would fulfill the criteria for chronic disease. 27% of patients had been ill for over 5 years prior to completing the survey.

Patients waited years for a diagnosis

We found that a staggering 29% of patients had had Lyme disease symptoms for 10 years before being diagnosed. Two-thirds of respondents had been ill for over 2 years.

Patients were not treated according to NHS guidelines

The antibiotic treatment patients had received appeared to be like a lottery.

Only 18% of Lyme patients who responded to the survey had been treated with antibiotics for 2 or 4 weeks, in accordance with current NHS guidelines.

Over a third of survey respondents said they had received no antibiotics at all from their NHS doctor, whilst 5% said that, at the time of the survey, they had been prescribed antibiotics for a year or more. Some patients had been on antibiotics for over 3 years.

Heavy prescribing of painkillers

Patients reported a vast quantity of drugs which they are prescribed by their NHS doctors. They are generously prescribed pain-killers, and older generation anti-depressants or other drugs which modulate the pain response.

The full list of prescribed drugs (which can be downloaded from a link at the bottom of this page) reveals that almost 8% of survey respondents are prescribed some form of morphine to manage chronic pain.

Results also revealed that 12% of patients are prescribed a thyroid replacement hormone.

Frequent and varied outpatient examinations

Patients reported receiving a large range of outpatient investigations. The results below show only those carried out in the past 12 months. In other words, this data merely indicates an average number of examinations during the course of a year for a patient with Lyme disease.

Many patients used the free text box to observe that they had undergone extraordinary numbers of exams and tests during the initial 12 months of their illness, in a search to identify their illness.

Patients also reported that many of these tests produced “normal” results because they are unable to reveal the presence of a Lyme disease infection, whilst others reported “abnormal” results which their doctor did not act upon because he/she did not understand their meaning. Results in this category include brain lesions revealed in MRI scans, severe erosion or joint cartilage in very young patients, atypical EEG results which are not epileptiform, and unexplained lymphocyte infiltration of biopsy samples taken during colonoscopy.

Almost Half of respondents had another diagnosis on the NHS

Of the 500 survey respondents, 210 resported that they have an alternative or additional diagnosis according to their NHS notes.

Close to half of patients had a diagnosis of chronic fatigue syndrome, and an additional quarter of them were diagnosed with fibromyalgia. The similarity of symptoms between these two conditions and chronic Lyme disease and co-infections is remarkable. It is also noteworthy that both of these conditions are diagnosed subjectively; there is no objective test that can prove or disprove the diagnosis.

Interestingly, 14 of our survey respondents had been diagnosed with multiple sclerosis. Several of them reported that their symptoms had improved significantly since undertaking antibiotic treatment for Lyme disease.

Other diagnoses found more frequently among survey respondents than among the general population included thyroid disorders (notably Hashimoto’s thyroiditis), various cardiac conditions, Ehlers-Danloss syndrome (joint hypermobility), and celiac disease.

Half of patients too ill to work at all

Exactly 50% of our survey respondents reported that they are currently too ill to work at all. An additional 18% said they were only able to work part time.

In all, just 16% of respondents said they were able to work full time.

Free text answers to the survey indicated that, for a great many patients, the inability to work is not only a source of considerable economic hardship, but also a devastating blow to self esteem and family relationships.

The majority of survey respondents with chronic Lyme disease were not classified as disabled, or even as chronically ill, by their GP and are therefore denied any state help or benefits at all. Patients’ responses to Question 23 gave additional information regarding the economic hardship that they and their families have suffered, and continue to suffer, as a result.

Additional survey data

Some of the survey responses were free text answers, or gave the respondents the opportunity to add extra information to their answers. Lists of the answers to these questions can be downloaded from the following links.