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 1500 |
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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;
- Participating in the Tick Activity Project;
- Meeting at Porton with RIPL staff and having discussions with the Department of Health;
- Identifying resources for H&S training courses;
- Answering ad hoc queries on many aspects of Lyme disease from patient and the public;
- Organising speakers for the LDA September Conference;
- Preparing for medical exhibitions;
- Discussions with other European patient groups;
- Continuing work on our information production system to maintain accreditation status to the Information Standard.
Reasoning: The Charity’s Perspective
In the UK
There is a lot of misleading information that we are striving to correct. We are in direct correspondence with the Department of Health and Public Health England. We have contacted several medical societies and journals and will continue to make UK bodies aware of the issues in Lyme disease diagnosis and treatment.
We are trying to promote a practical approach to research, first finding out what the true priorities are. LDA has always tried to promote a scientifically-sound view based on all the available published evidence. This is now recognised by the Dept of Health and Public Health England and we are referenced as a reputable source of information.
Overseas
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.
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 undertaking a parliamentary lobby ‘Lobby for Lyme‘. The aim of this is to raise awareness of Lyme disease and the issues surrounding it with the MPs who represent our views.
LDA continues to have regular contact with PHE 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.