Raising awareness of Lyme disease

The cases of Lyme disease are increasing worldwide and NHS Western Isles surveillance demonstrated a Lyme disease incidence, which was 40 times the Scottish average (119 vs. 3.2 cases/100,000 people per year).

As part of the local health protection team, I was involved in raising awareness locally of ticks, helping to prevent tick bites and educate the public on when to seek medical advice. We produced local resources, posters and leaflets, which were distributed through GP practices, local hospitals, businesses and schools. I developed and delivered a school lesson plan which was added to the Scottish curriculum network.

Collaboration with other interested key partners is essential. To enhance the public health responses locally, I felt there needed to be an understanding of the factors that led to the increase of human cases of Lyme disease. After speaking at a conference in Edinburgh, I established links with researchers working at the University of Glasgow, who devised MSc and PhD projects to gain knowledge of the factors affecting the density of infected ticks in the environment, how persons interact with the environment and are exposed to tick bites.

Research is dependent on participation from the local community, as a collective the team involved thought it was important to be sharing any research findings and gaining different perspectives on what the environmental studies were finding. Each year we participate in knowledge exchange events, which provide us with rich feedback. The following picture is of some of the research team at an Agricultural show.

And this is where my Churchill Fellowship comes in, I travelled to the USA, Canada and France to meet a range of experts working on different aspects associated with ticks and tick-borne disease. The primary aim of my Fellowship research was to understand how other countries have tackled the challenges associated with tick prevalence and the associated increase of Lyme disease.

I hoped to explore the opportunities and messages used for raising awareness and the interventions used to reduce the risk of getting tick bites. I wanted to gain knowledge on the environmental, land management and ecological activities undertaken to assess the risks and assess their applicability to our community.

I came back with enthusiasm and started working on two things. I had met with staff at the Centre for Disease Control Atlanta; they spoke about considering health literacy when producing resources.

At the time, the discussion made me reflect on how much wording we had used in the leaflets and posters, and I decided I would keep this in mind when refreshing the local materials. We developed new posters, leaflets and a bookmark, which had reduced wording and used more images to inform people. They are really eye-catching and have received great feedback at the events we have attended. An image of one of these materials is pictured above.

Another aspect I wanted to gain insight into was how Lyme disease affected people. I have since completed a local research project looking at the impact Lyme disease has on a person’s quality of life, the research sought to investigate the impacts of Lyme disease on quality of life. The themes emerged from the data included cognitive issues; a reduction in ability to carry out normal tasks; a reduction in the participation in social activities; (participants acknowledged that some symptoms may not be due to Lyme disease) and lastly, concern around trying to avoid ticks. People also experienced fatigue, which impacted them physically, mentally, economically and socially, irrespective of the stage of diagnosis. Earlier this year I had an article published in the Nursing Times about my research findings.

My study also found that participants demonstrated that early identification and treatment of Erythema migrans, (which is the bullseye rash associated with a tick bite) led to fewer symptoms and improved recovery. This knowledge emphasised to me the importance of ensuring people are educated about preventing bites, removing ticks correctly and recognising when you should seek advice from your GP. I continue to look for opportunities to relay these messages to the public.

References:

National Health Service—Western Isles. The ‘tick’-ing time bomb: the incidence of Lyme disease in the Outer Hebrides (2010–2017). 2018.

Millins C, Leo W, MacInnes I, Ferguson J, Charlesworth G, Nayar D, Davison R, Yardley J, Kilbride E, Huntley S, Gilbert L, Viana M, Johnson P, Biek R (2021) Emergence of Lyme Disease on Treeless Islands, Scotland, United Kingdom. Emerging Infectious Disease 27(2):538-546.

MacInnes I (2023) How patients experience the impact of Lyme disease. Nursing Times [online]; 119: 3.