Caudwell LymeCo was pleased to have the opportunity to host an exhibition stand at the Guidelines Live 2019 conference.
It was attended by primary care health professionals looking to update their knowledge on clinical guidance, and receive advice on best practice. Rosie Milsom from the charity manned the stand, along with volunteers Natalie and Justine.
At our stand we handed out leaflet information on Lyme disease, discussed the latest NICE Guideline, and talked to attendees about their experiences of Lyme disease in their GP surgeries, walk in centres and pharmacies.
We also created a number of takeaway cards that directed the health professionals to online resources, such as the NICE Guideline and the RCGP Toolkit for Lyme disease. Around 200 of these were taken across the two day conference.
We took leaflets requests and have since sent out over 450 of them to surgeries and medical centres across the UK.
We had some really interesting conversations that gave us an insight as to how Lyme is viewed by some medical professionals on the front line. They were largely positive, and a number of attendees remarked on how they felt it was good that we were there, raising awareness.
We thought that these conversations may be of interest to those within the Lyme community, and they included the following:
A nurse from Surrey who worked in walk in centres over the summer said she saw at least 4 to 5 people present with the EM (erythema migrans) rash. She followed the NICE Guideline prescribed them doxycycline without further need for testing.
A GP from the Thetford Forest area – a known hotspot for Lyme – said that they had seen a number of cases this year, and that they seem to be increasing. He also said that they tests were ‘rubbish’, and that they try to use clinical diagnosis as much as possible.
A GP from Walton On Thames said they had been researching online about Lyme disease, and asked about any plans for a Centre of Excellence, which they felt was needed.
Doctor from Glasgow had seen around three EM rashes in her dermatology practice, and was surprised at the wide range of symptoms in long term Lyme when we described them to her.
A nurse from Bedford had seen people presenting at her practice with the rash, and we informed her that as little as 1 in 3 people get this – something she wasn’t aware of.
A nurse who worked the medical tents at festivals like Glastonbury and Reading said that young people would often come in with ticks attached – they are on farmland, after all! She requested information ready for next summer’s festivals.
A nurse from the New Forest asked for statistics and information on Lyme disease, and said that she was aware that it was prevalent in her area of the UK.
GP’s from Colchester confirmed that they were aware of the latest Guideline and that they are able to treat on clinical symptoms.
A locum GP from the Cambridge area was not aware that not all cases presented with the EM rash, and took away further resources from the stand.
A GP in Derby spoke of how they had thought that infected ticks were not found in the north of England – only in the south. Based on this, they had refused a Lyme patient treatment, and the patient lodged a complaint against them. We discussed the current difficulties in diagnosis and took details to send more information.
A locum GP near Brighton spoke of how she was familiar with the NICE Guideline and often prescribes antibiotics when she has a high clinical suspicion of Lyme disease, even without the rash.
A GP from Harrow had seen a case in the week prior to the conference.
Although there is still a lot of work to be done on raising awareness of Lyme disease and the latest guidance around diagnosing and treating it, we do think that there are some positives to take away from these conversations.
Thank you to our volunteers Natalie and Justine for helping us to run the stand.