Emails to our Patient Help email address shows that awareness of Lyme disease is low amongst clinicians in the UK as well as the public at large. Our activity is focussed on producing resources for people to use and stimulating the increase and spread of knowledge about Lyme disease and tick borne diseases generally.
Our well researched leaflets and posters can all be downloaded free of charge and we can provide larger quantities of printed leaflets on request.
Reasoning: The Charity’s Perspective
In the UK: There is a lot of misleading information that we are striving to correct. We have been in direct correspondence with Ministers at the Department of Health, with the Chief Executive of the HPA, and with the Chief Medical Officer. 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.
Overseas: Guidelines from the Infectious Diseases Society of America are referenced across the world. We provided input to the investigation that was raised into these guidelines in 2009, and commented on the resulting report.
Our quarterly newsletters keep everyone informed of what is happening.
On behalf of all people affected by Lyme disease, also known as Lyme borreliosis, and associated tick-borne diseases in the United Kingdom, Lyme Disease Action has been undertaking a parliamentary lobby ‘Lobby for Lyme‘ to raise awareness of Lyme disease and the issues surrounding it with our democratic representatives.
Our Lobby Work So Far
LDA Trustees have been talking to our MPs, and we have been urging anyone who has been affected by Lyme disease to do the same. As a result we now have good support from a number of influential MPs. This has led to:
February 2007: An EDM put forward by Julia Goldsworthy MP gets 80 signatures.
November 2007: Julia Goldsworthy MP hosts a meeting at Portcullis House. LDA trustees, a doctor experienced in treating Lyme, and several MPs attend.
February 2008: A second EDM by Julia Goldsworthy attracts 88 signatures.
November 2008: Hugo Swire MP organises a meeting at the House of Commons with interested parties from the Health Protection Agency, doctors and LDA trustees. Notes of this meeting are available.
Several parliamentary questions have been asked by a number of MPs, although few have had satisfactory answers.
Two online petitions have been placed on the government’s ‘number ten’ website. Each gained around 2000 signatures.