Notes for Editors

Lyme disease is an infection caused by a spiral-shaped bacteria called Borrelia burgdorferi. The infection is predominantly spread to humans through the bite of an infected tick. 

Ticks can be found all over the United Kingdom, often in woodland and grassy areas but also in urban parks and gardens. Around 1,000 serologically confirmed cases occur in the UK each year, however Public Health England estimate that there could be around 3,000 new cases per year. Data is incomplete and the true number is likely to be much higher.

Other infections that ticks can carry include Babesia, Bartonella, and rarely in the UK, the viral infection tick-borne encephalitis (TBE). Sometimes, ticks can transmit multiple infections through a single bite, and these can cause more severe symptoms and a more complicated clinical picture.

Recent data from the UKHSA (Feb 2024) showed that in England, there were 882 acute cases of Lyme disease between April and September in 2023, compared to just 635 the previous year. More than 70 percent of cases were reported in the South West, the South East and London, although this does not necessarily reflect where the tick bite occurred.

The UK Health Security Agency (UKHSA) estimates there are 1500 laboratory confirmed cases of Lyme disease per year and 1000 - 2000 more cases diagnosed clinically, although research published in 2019 showed that the real number could be at least three times higher. Doctors do not have to report diagnosed cases of Lyme disease unless patients have a positive blood test so the true number of cases is essentially unknown. 

Ticks have been found across every county of the UK and are mainly found in grassy areas and woodland, but have also been found in urban parks and gardens. It is estimated that up to 10% of ticks in the UK carry Lyme disease. 

Ticks vary in size and can be as small as a poppy seed, or as large as a baked bean after a blood meal.

Ticks live in grassy areas and look for food by waiting on blades of grass for a human or animal to brush past so it can embed itself and feed. This activity is known as ‘questing’.

Ticks often crawl to warm, hidden parts of the body and can go unnoticed while feeding as the bites are painless.

Lyme disease is the most common tick-borne disease in the Northern Hemisphere.

Infected ticks can be found in every county of the UK, but some areas are known to pose a higher risk, including the Scottish Highlands, South and South West England, and parts of East Anglia. This map shows the distribution of ticks across the UK.

Since the UK’s first confirmed case in 1985, the recorded incidence of Lyme disease has steadily been increasing.

The reasons for this are complex, but may be related to climate change, as well as changes in land management and biodiversity.

‘Studies in Europe estimate that 1% to 5% of tick bites can lead to Lyme disease. On average, approximately 4% of ticks are infected in England and Wales, although this range can fluctuate in different areas and across years, and can be on average as high as 8-10% in some areas.

Since data collection began in 2005, there has been a gradual increasing trend in cases of Lyme disease, although yearly fluctuations have been observed, particularly since 2018. You can access regular reports on the UKHSA website.

The rise in total cases may be due to a combination of increased awareness of Lyme disease as well as improved surveillance, better access to diagnostics, increased potential for encounters with ticks due to changes in wildlife populations and habitat modification that may have resulted in changes in tick distribution across the country, and human behaviour changes.’  UKHSA Blog, 21.03.2024

Ticks carrying tick-borne encephalitis (TBE) have now been identified in the UK, however the risk is very low. Symptoms include flu-like illness, persistent headache, confusion and sensitivity to bright light.

Studies indicate that ticks are showing earlier seasonal activity and a generally northward expansion in response to increasing temperatures associated with climate change. This is likely increasing the risk of human exposure to ticks. 

Ticks are most active in early spring and summer, but with UK winters becoming warmer and wetter, Lyme Disease UK is receiving reports of tick bites throughout the year.

What makes viruses tick? - a project led by the Brennan Lab at the MRC-University of Glasgow Centre for Virus Research, has also noted tick sightings in winter, particularly on the Isle of Harris in the Western Isles, which is an area of the UK previously identified as having a climate that allows ticks to thrive.

Research presented at the European Congress of Clinical Microbiology and Infectious Diseases in April 2023 speculated whether ticks infected with TBE have been brought into the UK due to migratory birds and climate change.

It is also possible that changes in land management and biodiversity are contributing towards the spread of Lyme disease.

It is thought that small mammal species, such as mice and voles, are the main reservoirs for Lyme disease, and any factors that alter their abundance can have an effect on tick density and tick infection rates.

“Urbanisation has led to a growing population of deer and mice, which are used by the ticks for blood meals, and that in turn increases the tick population,” the ecologist Matthias Leu told the Washington Post recently. “Flowers and bushes planted by homeowners are feeding the deer well.”

In 2021, a multi-million pound project called ‘Ticksolve’ was also launched to investigate the ecological conditions that enable tick-borne infections to spread, identify areas of the UK where the health risks are likely to be highest, and put forward possible solutions. 

The project runs until 2025, and brings together scientists from the UK Centre for Ecology & Hydrology (UKCEH), the University of Liverpool, the University of Glasgow, and the UK Health Security Agency.

According to Dr Beth Purse, principal investigator of TickSolve, “Risks from tick-borne diseases are rising across Europe due to increases in woodland cover and deer numbers, as well as climate change. Throughout the UK, risks could be exacerbated by plans to expand woodland. To tackle the problem, we need to better understand why people are more likely to get bitten by ticks in certain woodlands and whether this risk can be reduced through land management, for example by introducing vegetation or fences that reduce deer movement or tick numbers.”

Pet owners may be at increased risk of tick bites and should follow tick prevention methods.

In 2015, Bristol University carried out the largest ever UK study on ticks in dogs. The Big Tick Project found that one in three dogs checked at random during a visit to the vet were found to be carrying a tick, and 47% of owners were not aware that they too were at risk of infection from tick-borne diseases.

An increase in pet ownership during the coronavirus pandemic means that exposure to ticks is likely to have increased in more recent years. Last year, official statistics showed that 62% of UK households owned a pet, which is an all-time high.

• Take effective tick repellent on outdoor trips and a tick removal tool.
• Permethrin-treated outdoor clothing should also be considered for high-risk activities and occupations.
• Avoid walking through long grass and stick to pathways wherever possible.
• Wear light-coloured clothing, as this will make it easier to spot ticks and brush them off.
• Wear long sleeves and tuck trousers into socks.
• Shower and carry out a thorough tick check on yourself, children, and pets when you get home. 
• Remember that ticks can be as small as poppy seeds, so careful checking is key. Pay special attention to the hairline and behind the ears of young children.
• Talk to your vet about tick prevention products for pets and check them daily for ticks.

It's thought that around 10% of ticks in the UK carry Lyme disease, so if you’ve been bitten, it’s important to keep an eye out for any symptoms that may develop during the coming days, weeks, or months. Symptoms of Lyme disease may have a delayed onset and can fluctuate.

The most obvious sign of Lyme disease is an erythema migrans (EM) rash, often referred to as a bull’s-eye rash. This is diagnostic of the infection and treatment should be started straight away, without needing to wait for a blood test. 

However, around a third of people with Lyme disease don’t develop this rash and its appearance can be atypical. It doesn’t always look like the classic ringed type rash, and can have a solid or bruise-like appearance and look very different on darker skins.

The behaviour of any rash after a tick bite is the most important thing to be aware of. An EM rash takes at least three days, and in some cases up to 3 months, to appear. It generally isn’t itchy, painful, or hot, and gradually spreads outwards. Redness or itchiness immediately after a tick bite is usually a histamine reaction. 

Be aware that not everybody develops an EM rash, so it’s important to look out for other possible symptoms of Lyme disease such as: ‘summer flu’, headaches, stiff neck, facial palsy (especially in children), fatigue, joint and muscle pain, and generally feeling very unwell. Behavioural changes in small children often indicate that a child is unwell, as they are unable to articulate how they are feeling.

Blood tests for Lyme disease are not always reliable, so a clinical diagnosis sometimes needs to be made, based on a combination of medical history, symptoms, and exposure to ticks.

Doxycycline is usually the first-line treatment for adults and children over 12 years, and amoxicillin is prescribed for younger children. It is essential to be aware that treatment for children with Lyme disease is based on their age and weight, as the dosage is much higher than is usually prescribed for other infections.

The NHS does not normally recommend treating prophylactically unless pregnant or immunocompromised, although the RCGP Lyme disease toolkit does mention this for other types of high-risk cases.

The NICE guideline for treating Lyme disease was published in 2018, and doctors can refer to this if they are unsure about diagnosing or treating Lyme disease.

Raising awareness is crucial to limiting the number of cases of Lyme disease this spring. 

With this in mind, Lyme Disease UK is asking the general public to take part in their annual Be Tick Aware awareness campaign this May.

"We don't want people to be scared of enjoying the outdoors, but rather that people go out armed with the facts and knowledge they need to protect themselves and others from Lyme disease. Early intervention is key, and getting that message out to the public is crucial." Natasha Metcalf, Co-founder and Chair, Lyme Disease UK.

If caught early, Lyme disease can be easy to treat. However, complications can occur if the infection is left untreated. A late diagnosis or misdiagnosis can lead to ongoing health issues, including neurological and cardiac problems. 

Lyme disease patients are often misdiagnosed with ME/chronic fatigue syndrome, multiple sclerosis, fibromyalgia, arthritis, and depression.

It is essential that doctors, as well as the general public, know how to prevent tick bites, what to do if someone is bitten, and the symptoms of Lyme disease to look out for. It's also crucial to bear in mind that blood tests for the infection are not reliable, and can provide false negative results.

There are no Lyme disease specialists within the NHS and the NICE guideline used by NHS doctors focuses on treating the acute stage of the illness. There are no guidelines or universally-accepted treatment protocols on how to treat people who are chronically ill, following a Lyme disease infection. 

There's also no test for cure to indicate when Lyme disease has been eradicated, and more research is desperately needed.

Many Lyme patients end up exploring private treatment options as their only hope of recovery and the financial burden can be huge. Many patients are unable to work and unsuccessful in claiming disability benefits. 

Lyme Disease UK’s annual Be Tick Aware campaign this May aims to raise awareness of how to prevent tick bites and what you should do if you’re bitten. 

There are many ways the general public can take part in Lyme Disease Awareness Month this May:

1. Join in online and update your profile photo on social media with LDUK’s campaign logo.
2. Share Lyme Disease UK’s awareness materials.
3. Wear lime for Lyme with your pets on Friday 1st May.
4. Share your Lyme disease patient story.
5. Write to your GP, pharmacist, or health professional. 
6. Ask your favourite landmark to light up for Lyme.
7. Join in Lyme Disease UK’s schools campaign.

Further details on how to take part in Lyme Disease Awareness Month can be found here. 

Media interest in Lyme disease has continued to grow in recent years, especially since celebrities like Shania Twain, Martine McCutcheon, Justin Bieber, Bella Hadid, and Matt Dawson have shared their struggles with the illness. 

Behind every Lyme disease sufferer, is a story of how they came to be bitten by a tick, how they were diagnosed, and how Lyme disease has affected their daily lives. One tiny tick bite can cause devastating consequences and you can find many real-life case studies in the patient case study section of our website.

If you’re looking for a tailor-made story, we have a number of patient ambassadors we can put you in touch with. We may also be able to connect you with doctors and other health experts if you require medical commentary.

Lyme Disease UK is a UK registered charity providing patient support and raising awareness of Lyme disease.

Our mission is to prevent cases of Lyme disease by raising awareness of the importance of tick bite prevention and what to do if you are bitten by a tick.

We want to ensure that anyone in the UK who does contract the disease can access timely and appropriate treatment to prevent long-term symptoms and complications from the infection.  We will achieve this by working to ensure that:

• Every UK household is aware of the risk of tick bites and Lyme disease and understands prevention methods and symptoms to look for.
• All front line medical staff in the UK are aware of Lyme disease and at least one doctor in each team has completed the RCGP online course on Lyme disease.
• We provide support and knowledge to every single UK resident who is infected in 2025 as well as continuing to provide support to those already suffering with Lyme disease.

LDUK is a stakeholder in the NICE Lyme disease guideline and we participated in the Independent Government Reviews on Lyme disease. Many of our group members campaign hard throughout the year to raise awareness of Lyme disease and fundraise for a better future. We attend events and conferences and in May 2017, we launched our first national Wake Up to Lyme campaign, sending out awareness packs all over the country so that our literature could be displayed in GP surgeries, vet clinics, pharmacies, libraries, schools and recreational areas. This is now a large annual campaign with far reaching impact on and offline.  

"We don't want people to be scared of enjoying the outdoors, but rather that people go out armed with the facts and knowledge they need to protect themselves and others from Lyme disease. Early intervention is key, and getting that message out to the public is crucial." Natasha Metcalf, Co-founder and Chair, Lyme Disease UK

“Everybody should enjoy the great outdoors and everybody should be tick aware!  Simple precautions to avoid tick bites are the best way to limit the risk of ever contracting Lyme disease. If a bite occurs, the knowledge of how to deal with it and what signs and symptoms to look out for are essential so that diagnosis and treatment are given as quickly as possible, limiting risk of any longer term symptoms. Always 'Be Tick Aware'!" Julia Knight, Press and Community Outreach Manager, Lyme Disease UK

“All children love the great outdoors! Be aware of ticks and protect your children from tick bites. Child-safe tick repellents are available that should be applied regularly throughout the day. Always check your children every evening for any potential bites. Ticks like warm, hidden areas to embed in and are often found in a child’s hairline and behind the ears. Learn how to remove a tick safely, identify the signs and symptoms of a potential Lyme disease infection and know when to access medical care. Be a #TickAware family!" Julia Knight, RN Child (Retired), BSc (Nursing), BMedSci (Specialist Community Nursing & Healthcare Practice), Press and Community Outreach Manager and Trustee, Lyme Disease UK.

Sky News – Climate change could cause spike in ticks and drive up Lyme disease cases.

BBC Morning Live – Dr Punam on ticks and Lyme disease (start watching at 20 mins).

ITV Tyne Tees News – Kay Gibb and Natasha Metcalf discuss Lyme disease.

Countryfile – Charlotte heads to Devon to investigate the increasing number of ticks in our countryside – parasites that carry several diseases, which they can pass on to animals they bite. Charlotte discovers the consequences this can have for livestock, humans and our pets (watch from 18 mins).

Farmers Weekly – Will’s World: How to avoid uninvited summer guests.

The Mirror – Man’s plea to doctors after he was struck down with ‘terrible pain’ following holiday – Tom Davies recounts how he contracted Lyme disease and its impact upon his life.

BBC – The devastating impact tick bite had on mum’s life – Melanie Ambrose shares her story.

Liverpool Echo – ‘Stay safe’ warning after 1,500 confirmed cases of rare disease.

Chronicle Live – Sunderland woman caught Lyme Disease after dog lay on hedgehog nest in garden – Kay Gibb’s experience of Lyme disease.

BBC Radio Wiltshire – Listen to John Watling, Team Seasoar and Julia Knight, LDUK discussing the importance of Lyme disease prevention this summer.

BBC Radio Two – Jeremy Vine talks tick bite prevention and Lyme disease awareness. Listen from 1.36.

Download LDUK Logo

Download Be Tick Aware Logo

Download pictogram of where to check for ticks

View and download images of erythema migrans rashes and ticks

Ticks should be removed using a tick removal tool, or a pair of very fine-tipped tweezers, making sure that all parts of the tick are removed. A tick remover should be an essential part of any first aid kit. 

There is no minimum time a tick needs to be attached to pass on an infection. However, it should be removed as soon as possible.

Never pull off a tick with your fingers, normal tweezers, or any other unsuitable tool. 

It is also very important not to smother a tick in oil, Vaseline, or any other substance to try to remove it. This can stress the tick and cause it to respond by regurgitating the contents of its stomach into the host’s bloodstream.

Animation explaining how to prevent tick bites and what to do if you’re bitten.

Animation on how to be tick aware.

Animation on how to recognise the erythema migrans (Lyme) rash.

Animation for health professionals - Key points on diagnosis, testing and treatment

Animation on living with late Lyme disease. 

Download awareness posters, leaflets and tick awareness cards

Lyme disease facts and stats

The RCGP Lyme Disease Toolkit

The RCGP e-learning module on Lyme disease (for healthcare professionals - need to register on the RCGP site as a non-member to take this free 30 min course)