Medical knowledge, attitude and practice survey
Lyme disease cases most commonly present in primary care in the UK. Many Lyme disease patients have difficulty obtaining a quick diagnosis and appropriate antibiotics. Despite increasing numbers of cases there has been little assessment of clinicians’ awareness of the disease and patient management.
Researchers from the University of Liverpool and the Rare and Imported Pathogens Laboratory (RIPL), UKHSA therefore organised an online knowledge, attitude and practice (KAP) survey for clinicians. This aimed to better understand the quality of primary care support for Lyme disease patients. The KAP questionnaire was distributed to clinicians between June 2022 and March 2023. Results were published in March 2025.
Shocking patient outcomes
The findings highlight the major issues in obtaining a diagnosis and swift NHS treatment raised repeatedly by many Lyme patients.
The repercussions of these issues for patients are reflected in the shocking results of a UK wide Lyme patient survey by Lyme Resource Centre (LRC), undertaken in 2024. Feedback came from 450 responders – all cases confirmed by a qualified health professional.
The LRC survey includes separate results for the UK, Scotland, and the Republic of Ireland (RI). Of all LRC survey responders:
- 83% had difficulty accessing treatment despite 63% presenting with a diagnostic EM rash;
- 80% were not diagnosed within 4 weeks from onset of symptoms; and
- 49% were not diagnosed for more than a year.
- 22% UK, 15% Scottish, and 38% RI cases were not diagnosed for 5 years or more.
Of the 90% that received antibiotics:
- only 28% received a first antibiotic course within 4 weeks (prompt treatment is essential);
- 86% did not fully recover after the first antibiotic course;
- 83% have ongoing symptoms; and
- 52% have been ill for over 6 years.
The lack of disease awareness and expertise amongst health professionals is a top barrier to diagnosis and treatment.
Knowledge, attitude and practice survey results
A total of 191 complete responses were analysed (England n = 130, Scotland n = 61). Results from Wales and Northern Ireland were excluded due to an extreme lack of response. The Scotland-based responder group had more relevant consultations in the previous 3 years.
Geographical knowledge
The higher risk of contracting Lyme disease in the Scottish Highlands and Islands was recognised by 90% of Scotland-based responders and 55% of England-based responders. The English high-risk regions in the South West and South East, were less well recognised by Scotland-based responders.
Only just over half the number of responders recognised that tick habitat may occur in urban and suburban green space, as well as rural areas.
General Lyme disease knowledge responses
Strategies to prevent tick bites were well recognised, although use of a DEET containing insect repellent and wearing light-coloured clothing were less well known tips.
Most clinicians were aware that patients may not recall a tick bite yet could still have Lyme disease. Most also recognised the description of EM rashes and that they do not occur in all cases. Scotland-based responders were more likely to correctly diagnose a diagnostic EM rash, and understand that further laboratory testing is unnecessary.
Regarding rarer symptoms, 93.4% of Scotland-based responders versus 68.5% of England-based responders commonly associated cranial neuritis, with or without facial nerve palsy (FNP) with Lyme disease. Both groups were less likely to recognise heart block (57.4% and 55.4% respectively) and disseminated EM symptoms of multiple rashes (39.3% and 45.4%) or a rash sited away from a recalled tick bite (63.9% and 54.6%).
Only 70% of Scotland-based responders and 42% of England-based responders would prescribe doxycycline at the NICE guidance recommended dose of 200 mg daily for 21 days.
This is very concerning as prompt antibiotic treatment can prevent disseminated and late disease stages, avoiding potential neurological, musculoskeletal, cutaneous, and cardiac complications.
A second 21 day antibiotic course is also suggested where necessary in the NICE guideline. It is important to note, in LRC’s survey, 86% of those that received antibiotics did not fully recover after the first antibiotic course.
Attitude responses
Most responders considered that Lyme disease occurred within their practice area but did not feel that Lyme disease is a likely outcome if bitten by a tick in the UK.
Unfortunately Lyme cases diagnosed clinically are not recorded in the UK. Only positive blood test results are counted making it harder to confirm accurate case numbers. An issue, particularly as there can be limitations regarding the accuracy of Lyme disease tests.
Practice and clinical scenario responses
Asymptomatic patient with an attached engorged tick
The majority of responders indicated that they would remove the tick, most commonly using a tick removal tool. However only 20% recommended observing for an emerging EM rash.
Consideration of antibiotic prophylaxis was more common in England-based responses (8% Scotland, 26% England).
A patient with a positive LD test from a non-NHS approved source
Almost half of responders would consult current guidance due to uncertainty in this scenario. England-based responders would more commonly consider treating (18% Scotland, 35% England) than not treating the patient (23% Scotland, 12% England) based on a non-NHS approved test.
Further feedback themes included clinical assessment of patient symptoms, NHS laboratory retest, laboratory and test credentials, clinical history and serological details.
Post-treatment symptoms of headache and fatigue after two courses of antibiotics
Referral to an infectious disease specialist was most frequently indicated by responders (95% Scotland, 72% England), with over half of responders discussing other possible causes of symptoms. A minority would refer to other specialists (8% Scotland, 18% England). Over 30% would keep the patient under review. A minority indicated that they would prescribe a third dose of antibiotics.
Discussion
Scotland-based responders’ better survey performance likely reflects greater clinical exposure and public awareness of the disease, due to known higher levels of Lyme disease in Scotland.
Patient management may be influenced through inappropriate test referrals for patients with an EM rash, which was the lowest correct scoring knowledge question for England-based responders. Less than half of this responder group were aware of NICE recommended prescribed dose and/or duration for doxycycline.
Survey responders were knowledgeable on many Lyme associated symptoms and there was good awareness that a lack of patient tick bite recall, or observable EM rash, should not prevent a Lyme diagnosis.
However, the non-specific nature of Lyme disease symptoms can complicate diagnosis in the absence of an EM rash or known tick exposure. Laboratory confirmation can be useful in such cases, but is often negative during early infection. Lyme disease needs to be treated as soon as possible and delays waiting for later repeat testing results or referrals to other specialists can mean that the necessary early treatment window is missed.
Lyme disease testing has limitations and should not be used to rule out Lyme disease in suspected cases.
Targeted resources could improve GP confidence regarding exposure risk, symptom recognition, testing limitations and treatment dose and duration. Aside from the 2018 NICE guideline, UK educational resources for clinicians include the Royal College of General Practitioners (RCGP) e-learning module although interest in this has been limited. Future improvements in medical care could be validated by measuring changes to KAP over time.
Key implications for existing practice
1. Evolving tick habitat can include urban green spaces such as parks and private gardens, in addition to rural locations. Improved clinician awareness of geographical risk would be helpful.
2. Improving clinician awareness of signs and symptoms of Lyme disease, as well as other lower scoring KAP items may reduce diagnostic uncertainty and potential for treatment delay or misdiagnosis. This may also improve patient confidence in clinical care.
3. Clinician confidence to clinically diagnose Lyme disease through recognition of EM rashes, may help reduce associated contraindicated testing, preventing an unnecessary patient procedure and reducing laboratory testing burden and diagnostic uncertainty.
4. Standardising prescribing habits for symptomatic patients to NICE guidance is essential to help reduce negative outcomes and patient fears associated with under-treated cases. More than one course of antibiotics may be necessary.
Read more
- Lyme Disease in UK Primary Care: Knowledge, Attitude, and Practice Survey Results
- Summary of NHS, NICE and RCGP Lyme Disease Information
Acknowledgements
Lyme Disease UK greatly appreciates this assessment of primary care provision for Lyme disease patients and also the patient survey conducted by our colleagues at Lyme Resource Centre. Our deepest thanks go to everyone involved. We sincerely hope this work furthers the improvement of medical care for Lyme patients, many of whom have suffered horribly for far too long.