14 March 2008
We received a petition asking:
"We the undersigned petition the Prime Minister to help improve the awareness and funding towards diagnosis and treatment for Lyme disease."
Details of Petition:
"That funding and resources be urgently made available and used to improve all aspects of the diagnosis, treatment, prevention, monitoring, public awareness and research of Lyme disease and its associated tick-borne infections, in order to improve the poor clinical outcome for people with these diseases in the UK."
Read the Government’s response
Clinicians in the UK have ready access to the best diagnostic tests available for Lyme disease. NHS diagnostic tests for Lyme disease conform to internationally agreed criteria and the tests are freely available within the NHS. Likewise, appropriate treatment with antibiotics is readily available for all those diagnosed with Lyme disease. Routine surveillance for Lyme disease is in place and was enhanced in 1996. Surveillance is undertaken by the Health Protection Agency (HPA). Its Lyme Borreliosis Specialist Diagnostic service provides not only diagnostic laboratory confirmation in support of clinical assessment but also provides advice and support to clinicians through its network of experts in infectious diseases, neurology, rheumatology and other specialities that have a particular interest in Lyme disease.
The internationally agreed criteria adopted by the UK for diagnostic tests for Lyme disease ensure that appropriate and standardised interpretation of tests is made across the UK. These criteria (Annex 1) are based upon stringent interpretation of serological tests for specific antibodies to Borrelia burgdorferi sensu lato, the causative agent of Lyme disease. Diagnostic testing is a two stage process: testing for the presence of antibodies to B. burgdorferi followed by specific immunoblot (Western blot) tests on all specimens that react in preliminary tests. The significance of the results is then carefully assessed in the light of the patient’s clinical signs and any history they have of exposure to ticks. It is accepted that diagnosis of Lyme disease is not straightforward and this is why it is particularly important for international authoritative experts, whose work in this field is peer-reviewed within the scientific community, to agree on validated testing methodologies.
The majority of people infected suffer only mild symptoms and will not require any treatment. Clinical symptoms are typically an initial raised red rash (erythema migrans) that spreads around the site of the tick bite. For those in whom illness develops, a short course of antibiotic treatment (using doxycycline or amoxicillin) is usually successful. On rare occasions, some people develop more serious symptoms. Treatment of late stage Lyme disease is also through antibiotics. However, long-term use of antibiotics is not indicated for the treatment of Lyme disease.
Sound surveillance for reporting of Lyme disease in people is in place in the UK. This surveillance system is based on laboratory confirmed reports and, as is stated above, was enhanced in 1996. However, it is accepted that there is under-reporting of Lyme disease, as a clear diagnosis is sometimes possible and appropriate antibiotic treatment given without recourse to laboratory confirmation, for example when clinical symptoms are obvious and the patient has recently been bitten by a tick. Such cases, as well as those where infection is asymptomatic or results in only mild symptoms that do not require medical attention, are not included within the national figures. Laboratory confirmed reports are received by the HPA and this enables an estimate of the rate of the disease to be calculated. As the majority of affected people suffer only mild symptoms and might miss or ignore the initial red rash and recover without recourse to their GP, making the disease notifiable would not detect these cases.
The number of cases of Lyme borreliosis diagnosed each year in the United Kingdom has increased steadily for a number of years, although the number of cases of neuroborreliosis diagnosed annually has remained steady since 2001. This increase is thought to be due to several factors, including increased awareness of the disease, greater access to diagnostic facilities, more sensitive diagnostic methods and the introduction of the enhanced surveillance scheme in 1996. Other factors include:
- the increase in the number and geographical range of deer which are important hosts for feeding ticks;
- greater public access to some parts of the countryside where Lyme borreliosis occurs, this has come about through changes in access legislation and increased interest in outdoor recreational activities; and
- a succession of relatively mild winters which has allowed greater numbers of ticks to survive in the vegetation.
The HPA provides information about Lyme disease for both clinicians and the public on its website. The treatment guidelines for clinicians published by the Infectious Diseases Society of America in 2006 are authoritative and comprehensive, and similar to the recommendations of various European experts. They are available on the HPA website, together with published guidance for the diagnosis and treatment of neuroborreliosis, which is based on careful reviews of the scientific literature and is strongly recommended as valuable resources in the diagnosis and management of patients with suspected neuroborreliosis.
The HPA also works to increase awareness of Lyme disease through presentations to, and discussions with professional, recreational and special interest groups. For example, in spring 2007, before the start of the major tick feeding period, the HPA ran a national campaign to warn people of the risks associated with Lyme borreliosis and of ways to prevent infection. In addition, NHS Direct has published comprehensive information on the disease, including preventive measures, on its website.
The HPA has been at the forefront of close international collaboration, working with experts around the world on a range of issues to improve diagnostic tests and to promote evidence based treatments. International collaboration and research is fundamental to controlling and preventing disease at home. The UK can benefit from the research in countries where Lyme disease rates are much higher such as the USA and other countries in Europe.
The Department of Health does not consider that further research is needed at this time, as much is already known about diagnosis, treatment and mode of transmission of Lyme disease and other tick borne diseases. Lyme disease is already acknowledged as the most important vector borne disease in the UK, though the incidence rate is not high.