Reasoning and educating: 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 provided nearly 80% of the funding for the Royal College of General Practitioners (RCGP) Spotlight Project. This ran for just over a year and has achieved its major objectives. Four workshops for GPs – Birmingham, Bristol, Oxford and Cambridge – have been very well attended and resulted in several hundred enlightened GPs. The on-line toolkit, hosted by the Royal College of General Practitioners is available to everyone.
Read our 2018 announcement of the Spotlight Project.
We are trying to promote a practical approach to research, based on the true priorities. 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. We are in touch with several universities and individual researchers.
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
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 RCGP Spotlight on Lyme Disease 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 Conference;
- Preparing for medical exhibitions;
- Discussions with other European patient groups;.
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 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.