NICE quality standard on Lyme disease

NICE has developed a quality standard for the diagnosis and management of Lyme disease in the UK.

The quality standard follows on from NICE guidance issued last April.

Lyme disease is not common in the UK but cases confirmed by laboratory testing rose from 346 in 2003 to about 1,700 in 2015. Public Health England estimates there could be up to 3,000 new cases of Lyme disease in England and Wales each year, although this figure is disputed by patient groups, who suggest the number of patients affected is higher.

In addition to covering the diagnosis, investigation and treatment of the disease, the quality standard also emphasises the importance that public authorities play, in raising the public's awareness of the disease. GP practices are encouraged to provide up-to-date leaflets and display posters, to raise awareness, describing measures that the public can take to try and prevent tick bites and subsequent infection.

NICE guidance recommends that patients who present with a characteristic rash, erythema migrans, should be treated for Lyme disease without the need to resort to laboratory testing. An algorithm sets out what testing is recommended for individuals who present with more non-specific symptoms in whom Lyme disease is suspected. Guidance is also given on what antibiotic treatment is advised.

The diagnosis of Lyme disease can be difficult and its non-specific symptoms, such as fever and sweats, swollen glands, neck, joint or muscle pain and paraesthesia, can be missed - yet with appropriate antibiotic treatment it can be managed effectively. If cases continue to rise, doctors may worry about the risk of missing the diagnosis.

An alleged failure to diagnose the disease is the most common reason for complaints and claims about Lyme disease reported to the MDU.

In view of this, it may be worth considering the following risk management advice.

  • Consider displaying leaflets and posters from Public Health England in the surgery to raise patient awareness of the disease, particularly during periods associated with a higher risk of tick exposure.
  • Advise patients to take precautions against tick bites if they're visiting high risk areas, especially in spring and summer when ticks are most active. NHS Choices provides advice on preventing tick bites.
  • Be aware that there are various clinical manifestations of Lyme disease.
  • Consider the diagnosis in patients with suggestive symptoms who have walked in areas where the disease is prevalent, such as Scotland, the New Forest and North America. Be aware that the patient may not recall the tick bite or notice a mark.
  • If the diagnosis is considered, arrange appropriate tests to try to exclude or confirm it. NICE guidance on laboratory testing and diagnosis states: 'If there is a high clinical suspicion of Lyme disease, consider starting treatment while waiting for tests results' and 'do not rule out Lyme disease even if results are negative.'
  • Be aware of the relevant guidelines, including from NICE Public Health England and the RCGP which offers an online learning module.
  • Consider obtaining a specialist opinion if the diagnosis is unclear.
  • As with all aspects of patient care, it's important to keep accurate records, taken at the time of the consultation, and to record both positive and negative findings.

This guidance was correct at publication 19/07/2019. It is intended as general guidance for members only. If you are a member and need specific advice relating to your own circumstances, please contact one of our advisers.

Nicola Lennard MDU medico-legal adviser

by Dr Nicola Lennard Medico-legal adviser

MBChB MD FRCS(General Surgery) GDL

Nicola completed her post graduate training in general and vascular surgery before taking up post, initially as a senior medical officer, then Deputy Medical Director in the medical devices division of the MHRA. She joined the MDU as a medico-legal advisor in 2013 and completed her graduate diploma in law in 2014.

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