Notification of a number of specified infectious diseases is required under the Public Health (Infectious Diseases) 1988 Act and Public Health (Control of Diseases) 1984 Act. Amended regulations for clinical notifications came into force on 6 April 2010. According to the Expert Working Group which developed the list of notifiable diseases for the Public Health (Scotland) Act 2008, the aim of notification is to detect possible outbreaks and epidemics as rapidly as possible, and therefore should be confined to those diseases which require urgent public health action. Notification requires the completion of the appropriate form, with urgent cases also to be notified by phone within 24h of any suspicions. Information required includes the patient’s personal details, identity of the disease or infection, dates of onset of symptoms/diagnosis and any relevant overseas travel history.
Only two of the 25 conditions defined as notifiable diseases in Scotland are vector-borne, one of them (plague) also being transmitted by other means (pneumponic and septicaemic) and the other (yellow fever) highly unlikely to occur here given the absence of the vector. Tick-borne Lyme disease is thus the only significant autochthonously transmitted vector-borne disease in Scotland, even when the confirmed incidence of 200-300 cases per year is accepted as the true value. Most experts believe the true value is in fact 10 or more times higher, including the national analytical unit at Raigmore Hospital, Inverness (1).
Lyme disease is not normally fatal and if detected quickly enough can usually be resolved by a short course of antibiotics. Unfortunately delays in diagnosis may result in the infectious agent involved (the spirochete Borrelia burgdorferi and related species) invading organs such as the central nervous system, thyroid gland and heart where it is largely shielded from the host immune system and becomes very difficult to detect and treat. Thus although Lyme disease does not present an immediate threat to life and cannot normally be passed between individuals rapid diagnosis and treatment are crucial to ensuring that it does not progress from being a readily treatable condition resembling flu to a severe chronic illness with symptoms similar to multiple sclerosis, ALS and other life-changing ailments.
Although Lyme disease was taken off the register of notifiable diseases in 2010, the organism remains reportable and there is on-going surveillance and investigation of all positive serology (blood tests). However the sensitivity of the current two-tier system for serological tests is widely accepted as being limited to less than 50% (2). The Expert Working Group believed that the potential for an outbreak of Lyme disease was minimal, and that identification of an undiagnosed tick bite or symptoms suggestive of Lyme disease would not necessarily require urgent public health action, although (they claimed) it would lead to immediate treatment in order to prevent chronic conditions. Health Protection Scotland does recognise that Lyme disease is a complex disease which can have a devastating impact on health. Although there are no plans to add it to the list of notifiable diseases at the current time, they continue to monitor findings from research and surveillance of this disease.
Unfortunately at the moment Lyme disease’s low profile means that many cases are going undiagnosed until it is too late. People thus continue to enter areas where the risk of exposure to Borrelia-carrying ticks is very high and the members of some professions (e.g. forestry workers, gamekeepers) are particularly endangered. The lack of Lyme disease awareness among the general public and also many GPs should be a major cause for concern. Although recent announcements regarding research funding (2) will help raise the profile of Lyme disease in Scotland, the projects in question focus on determining which areas are “hot spots” for the disease. This can have the unfortunate consequence of giving the impression that Lyme disease does not represent a problem outside these areas. There are many cases of Lyme disease being dismissed as a diagnosis because the physicians believed “it doesn’t occur here”. Thus cases in US states such as Utah (3) have been dismissed because of the perception of Lyme disease as mainly being a problem in New England. Australia has thousands of individuals who display particularly virulent symptoms of a condition that appears to be Lyme disease but is still not recognised as such by most doctors there (4). Known UK “hotspots” for Lyme disease include the Scottish Highlands and New Forest but cases have been recorded all over the country, among people who have never visited these areas.
Calls for greater awareness of Lyme disease such as the “Take a Bite out of Lyme Disease” (5) are important but request participants to make donations to research programmes that may not provide solutions for years and will require huge amounts of funding. Improved diagnostic methods and alternatives to long-term antibiotic therapies are needed but there are short-term solutions that could be implemented much more rapidly. These include: providing information on Lyme disease for people in any area where ticks are likely to be encountered; development of tick removal tools that can be used correctly by anyone and help determine if ticks are infected; and training courses to ensure that GPs and other health professionals are able to diagnose and treat Lyme disease as rapidly as possible.
We at Garrapat therefore believe that Lyme disease should be added to the list of notifiable diseases in Scotland, to raise awareness among the general public and medical professionals of the threat it represents to public health throughout the country. No infectious disease in Scotland presents such an important, continuous threat to public health and none could be prevented as easily through a combination of greater awareness, access to the right tools to remove ticks and widespread availability of prompt diagnosis and treatment.