Falling Through the Gap Part 2 – Press Summary

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FALLING THROUGH THE GAP? : PART TWO

COMMUNICATION AND LYME DISEASE PREVENTION

In autumn 2011, research group Lyme Research UK and Ireland undertook two surveys to find out more about Lyme patients’ experiences of the health services and related issues. The aim of this work was to put these findings into an applied policy context, but also to make links with current understanding about knowledge of tick protection and to consider what people think about ‘good’ or ‘appropriate’ methods of communicating information about ‘tick protection’, and the associated risks from Lyme disease.

Overall if was found that awareness of tick protection and Lyme disease was poor among respondents, and in their view, among the medical professionals. Respondents wanted better information from their doctors and supported a national awareness campaign.

The first survey showed that 80% of people with Lyme said that they were not fully informed about risks from ticks before they became ill, and 70% felt that their GP’s were not informed about infections from ticks at that point. Little recent research exists into knowledge about ticks and the risks, or into the tick protection methods which exist for the UK or Europe. However, that which is available indicates that actual practices may be poor, even in places where ticks are common, among groups using those areas who are exposed to ticks and where there is information is available (particularly in the UK).

The majority of the study group who completed the second survey were people directly affected by Lyme disease either as a patient (56%) or as a friend or family member (36%). This group had strong views about the need for more information about risks from ticks to be made available to the public. They suggested a strategy for communication to be both broad (providing information in a wide range of places and using a variety of communications methods) and deep (targeting people, or places where risks are higher).

Most wanted information from GPs or other doctors (66%), however networks (local and national) also featured as important routes for information. Most favoured a national awareness campaign (81%), with the use of radio, television and posters which included information via local community education routes. The vast majority wanted information via health centres and doctors’ surgeries (86%), as well as areas that are clearly high risk, such as national parks.

However, 84% also wanted information in any areas where ticks could live, such as parks, footpaths etc. There were also a range of suggestions about more innovative methods for communicating messages about ticks, including the use of products available routinely (such as milk cartons) and the use of the internet and social media.

A Lyme information strategy combining ‘who’, ‘how’ and ‘where’ can be developed that fulfils these ‘requirements’. A table was constructed to illustrate this and it could be adapted to suit local circumstances. The result is an approach that can reach deeply and widely, within reasonable use of resources, based on best use of existing channels of communication at local and national levels. As evidence suggests that people at risk of Lyme disease are not restricted to those who get bitten regularly or undertake high risk activities (e.g. dog owners, allotment holders, and people with gardens in rural or semi-rural areas), this communication would need to be extensive. A fairly large number of people; 43% also felt information should be given via vets. Over one third of the population are dog owners, and people who do own dogs are likely to walk in wild spaces.

Respondents also placed a high value on targeting groups most at risk such as those engaged in outdoor pursuits etc (62%). Over half of the participants indicated they felt that local councils, the Health Protection Agency, and local public services such as libraries and pharmacies, should be involved in providing information about ticks.

Government agencies concerned with public health and disease prevention need to address the issues in light of the growing risks from ticks, and consider the needs of communities at risk. The state needs to consider a full review of its own actions, to inform the public about Lyme disease risks. At the same time, organisations that have members more at risk of Lyme disease will also have an interest to educate their members about the risks, using appropriate communication methods.

Almost nothing is known about health professionals and doctors’ knowledge about risk from ticks, tick protection or removal techniques, or Lyme disease in the UK or in Europe. There is no published research in this area to date for Europe, and only one article (Wendy Fox (2011). Under the Radar: Lyme Borreliosis in the UK. Science, 68(4), 10-11. Parliamentary paper) which shows poor levels of knowledge of tick removal in GPs. As mentioned, 70% of people affected by Lyme disease, felt their GP’s were not informed about infections from ticks, when they became ill. This dimension appears to have been neglected in research and adds to the problems around how best to prevent actual illness from Lyme and other tick-borne infections.

It may be easier in organisational and communication terms, to target professionals than to prevent Lyme disease or other TBIs purely by changing individuals ‘tick protection’ behaviour. It would be important to find out, in the future, what impact improving the knowledge levels about Lyme disease as an illness, in itself, would contribute to preventing illness including more complex, chronic or disseminated forms. Focussing on good tick protection methods is only ‘one half’ of the solution to preventing tick-borne infections in the community.

Lyme Research UK and Ireland are a community group, dedicated to engaging in research that reflects on the policy and practice of preventing, testing, diagnosing and treating tick-borne infections in the UK and Eire.

Summary of survey outcomes: