Reasoning and educating: The charity’s perspective
In the UK
We strive to correct misleading information wherever we find it. We are in direct correspondence with the UK Health Security Agency. We have contacted several medical societies and journals and will continue to make health professionals aware of the issues in Lyme disease diagnosis and treatment.
We funded, and helped produce, the Royal College of General Practitioners (RCGP) e-learning module in 2014, and have regularly updated it. We pay to make this freely available to all health professionals, whether or not they are RCGP members.
See our Resources for Clinicians page.
LDA has always tried to promote a scientifically-sound view based on all the available published evidence This is recognised by the Dept of Health and the UK Health Security Agency and we are referenced as a reputable source of information. We are in touch with several universities and individual researchers and we maintain a reference library containing around 3,000 publications on ticks, tick-borne disease and other relevant topics.
Overseas
We attend international conferences not only to increase our knowledge by networking with researchers and clinicians, but also to put the patient’s view. Guidelines from the Infectious Diseases Society of America are referenced across the world. Back in 2009 we provided input to the investigation that was raised into these guidelines, and commented on the resulting report. In 2015 we submitted a public comment on the project plan to revise these guidelines.
The sort of things we do during a typical month
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40,000 | Pages of quality information provided via the website |
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827 | Emails sent on LDA business, communicating with the public, PHE, DH and researchers |
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62 | New cases on our public and medics help desk |
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31 | Tweets and Facebook posts |
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20 | Full text papers added to our reference library, bringing the total to over 2,000 |
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45 | Shop orders fulfilled |
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7 | Press enquires dealt with |
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1700 | Leaflets distributed |
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3 | Fundraisers helped with their events |
See here for where we have been and where we shall be over the next few months.
General work includes:
- Writing papers and letters for medical journals;
- Work on Lyme disease awareness material;
- Meeting at Porton with RIPL staff and having discussions with researchers;
- Identifying resources for H&S training courses;
- Answering ad hoc queries on many aspects of Lyme disease from patients and the public;
- Organising speakers for the LDA Conference;
- Preparing for medical exhibitions;
- Discussions with other European patient groups;.
Stimulating Change
On behalf of all people affected by Lyme disease, and associated tick-borne diseases in the United Kingdom, Lyme Disease Action has been raising awareness of Lyme disease and the issues surrounding it with the MPs who represent our views. We contributed to the All Party Parliamentary Group. which operated for 2 years before closing in April 2019.
LDA continues to have regular contact with the UKHSA and the Department of Health.
Support for patients and clinicians
LDA provides an email support service: both patients and clinicians can contact us. We provide evidence based, referenced information on all aspects of Lyme disease. A summary of our service to clinicians can be downloaded and printed from here.
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