Press Releases, and summaries, of key LymeResearchUK reports and articles.

Policy and practice in the UK and beyond (Summary)

The policy on assessing patients for Lyme disease, including clinical risk assessment, testing and diagnostic clinical assessment, through to treatment and follow up, appears to have changed little in the UK or Ireland over the last decade. In addition, there seems (with the exception of certain ‘alternative’ guidelines) to be little variation in the content of policy or guidelines, for dealing with Lyme disease in Europe or beyond. A timeline of key policy and other guidance (and responses to policy) relevant to the UK and beyond is provided below in Table 1.

In addition to managing a regionally based local protection service, the HPA also had a role (from 2003) in the provision of a Lyme testing ‘reference’ laboratory, providing advice to clinicians. A similar situation exists for Ireland and Scotland, except that half of Scotland (the east and highlands) had their own reference laboratory (based in Inverness) using in-house testing kits.

In Ireland, the approach to dealing with Lyme may not be dissimilar to the UK (i.e. England, Wales, Northern Ireland and Scotland). The equivalent of the HPA, the HSE, references IDSA’s and the British Infection Association’s guide on Lyme disease, for instance.

The HPA, in 2010, initiated a review of ILADS guidance from 2004 (International Lyme and Associated Diseases Society Evidence based guidelines for the management of Lyme disease), a key milestone in the UK. ILADS are a group based in the United States, known to advocate a different approach to dealing with Lyme disease and have had support from patient groups and some doctors, worldwide. Clinicians in Europe have developed other guidance that provides a different view such as that from the German Borreliosis organisation (Deutsche Borreliose-Gesellschaft, 2nd edition 2010).

Established policy approaches, and accepted established practices, are being challenged by specific stakeholder groups; patients’ movements etc. Key documents and events related to these dynamics are outlined below. This summary provides an overview of this complex set of policy issues.



Date Title document/ source information/ author Purpose/context etc.
European Union Concerted Action on   Risk Assessment in Lyme Borreliosis (EUCALB) 1996 O’Connell S (Eurosurveillance 1996);   Stanek G, O’Connell S et al, 1996, European Union Concerted Action on Risk   Assessment in Lyme Borreliosis: clinical case definitions for Lyme Borreliosis.   Wiener Klinische Wochenschrift (Vol. 108, pp. 741-747) European Case Definitions – A network   of clinicians and scientists throughout Europe – programmes to formulate case   definitions appropriate for European use and to standardise the quality of   laboratory diagnostic tests for Lyme disease
Health Protection Agency


Set up 2003 HPA Act 2004; Chief Medical Officer,   ‘Getting Ahead of the Curve’ (2002) Operational and strategic role with a   corporate remit of ‘Protecting People, Preventing Harm, Preparing for   Threats’ with a focus on ‘new and emerging infections’. CMO report on   strategic planning to deal with infectious disease in the environment.
European Society of Clinical   Microbiology and Infectious Diseases 2004 Brouqui, et al (2004) Latest (general) European guidance   published
Health Protection Agency Set up 2003/ HPA Act 2004   – 2012 Website, and links to IDSA[i] Provides advice and information to   professionals (and the public) about Lyme disease testing, diagnosis and   treatment. For the UK (i.e  England,   Scotland and Wales).  (April 2013 onwards part of Public Health   England)
ILADS – The International Lyme and   Associated Diseases Society 2004 and 2008 First version 2004, Latest version   guidance – Burascano, J (2008) (16th edition). Advanced topics in Lyme Disease Diagnostic Hints and   Treatment Guidelines for Lyme and other Tick-borne illnesses ILADS is a non-profit, international,   multidisciplinary medical society, dedicated to the diagnosis and appropriate   treatment of Lyme and its associated diseases in America
IDSA – Infectious Diseases Society of   America


2000 and 2006 First   version 2000, Latest version: IDSA, 2006, The Clinical Assessment, Treatment,   and Prevention of Lyme Disease, Human Granulocytic Anaplasmosis, and   Babesiosis: Clinical Practice Guidelines by the Infectious Diseases Society   of America, Gary P. Wormser, et al, Clin Infect Dis. 43 (9): 1089-1134. doi:   10.1086/508667 IDSA undertook a review of it’s own   guidelines, Lantos  et al (2010). Final   report of the Lyme disease review panel of the Infectious Diseases Society of   America. Clinical infectious diseases: an official publication of the   Infectious Diseases Society of America, 51(1), 1–5.
Southampton reference laboratory,   directed by Dr Sue O’Connell 2003 onwards Poster presentation: ‘Recommendations for diagnosis and   treatment of Lyme borreliosis: guidelines and consensus papers from   specialist societies and expert groups in Europe and North America’,   unpublished; various publications in peer reviewed journals Concluded that other European   countries have independently agreed similar guidance to that provided by   IDSA, linking to internationally agreed standards in the use and   interpretation of ‘two tier’ testing
European guidance on neuroborreliosis 2010 Mygland et al 2010. Published in   peer-reviewed journal. Newer guidance on the neurological   versions of the condition, for Europe
Requested by CEO of HPA –working   group set up means 2010 Professor B Duerden: Independent   Appraisal and Review of ILADS 2004 ‘Evidence-based guidelines for the   management of Lyme disease’. Concluded this was not   ‘evidence-based’, that relying on it would lead to ‘over–diagnosis’ of Lyme   disease, and that using it could harm patients and/or lead to patients   ‘losing the opportunity for diagnosis and treatment for other conditions’
British Infection Society 2011 The epidemiology, prevention,   investigation and treatment of Lyme borreliosis in United Kingdom patients: A   position statement by the British Infection Association, Journal of   Infection, Volume 62, Issue 5 , Pages 329-338, May 2011 Professional association representing   different groups related to dealing with infections. Accepted as ‘new’   guidance by the HPA from 2011. Position statement. Very   similar to IDSA guide which is referenced.
Lyme Disease Action (UK)


June 2011 Lyme Disease Action. (2011). Comment   on the British Infection Association’s Position Statement on Lyme borreliosis   June 2011. First issued to the BIA 14/ 6/ 2011. Journal of Infection, 5(5). Comment on the British Infection   Association’s Position Statement on Lyme borreliosis -Response to BIA guide
James Lind Alliance project 2012 onwards Set up and paid for initially by Lyme   Disease Action, a UK charity.[ii] HPA and DOH, are involved in   examining ‘known uncertainties’ with respect to diagnosis (and treatment) for   Lyme disease.  The project outcomes are   expected to include potential funding of research based on a review of   ‘uncertainties’, and a ‘priority setting’ process, that includes clinicians,   patients, and the charity.
Rare and Imported Pathogens Laboratory   (RIPL) 2012 (1/6/2012) No published or publically available   documents (to date).




Provide clinical advice to clinicians,   on Lyme testing and results, and has a work programme. This includes   developing new advice to doctors, reviewing testing, etc.