Until April 2012, information on Lyme disease was provided by the specialist Lyme Borelliosis Unit (LBU) at the Health Protection Agency. Some of their advice was perfectly reasonable, but much was not supported by good evidence. They misrepresented the views of this charity and provided misleading information to the HPA management and to the Department of Health.
In April 2012, the Rare and Imported Pathogens Laboratory (RIPL), based at Porton Down in Wiltshire took on responsibility for Lyme disease. We are working closely with them, but Lyme disease is a complex subject and the old views still pervade much of the medical profession.
We hear many reports from patients of inaccurate information coming from doctors at all levels.
As a result, we hear from a steady stream of people who have histories strongly suggestive of Lyme disease who are being inadequately investigated and treated, and are suffering unnecessarily as a result. We still need politicians to know about Lyme disease so that the forward momentum can be maintained.
How to find who your MP is
Visit this website and enter your postcode in the search box.
Write to your MP
We recommend you start by putting your story in writing. Tell your story briefly, but in enough detail to make it clear how you have been affected by Lyme disease and previous government policy.
Whether you have had a clinical diagnosis, or a confirmed laboratory diagnosis, or care for someone who is ill, evidence from your stories is compelling. Regardless of your laboratory test results, if you are much better on antibiotic treatment, please include that in your letter.
Please say that you support Lyme Disease Action’s Lobby for Lyme, and our three main action points of Awareness, UK Guidelines, and Research.
MPs are busy people, so please keep your letters to a maximum of two sides of A4. Do also try to keep your letters factual. The LBU in the past tried to dismiss patient groups as not understanding the facts. We know most of you are sensible and intelligent people, and we need to demonstrate that.
Every MP can be reached by addressing your letter to:
(MP’s name) MP,
House of Commons,
You can also write to the local constituency office.
Use your own words if you can, but if you are unable to write your own letters for any reason then we have sample letters that you can use for inspiration. If you know of Lyme-affected people who do not have internet access, please ask them to write as well.
Meet your MP
You should get a reply to your letter within a few weeks. Regardless of the nature of the reply, it is always good to follow up with a personal meeting. We have seen a number of cases where a face to face discussion has made all the difference in securing an MP’s support.
All MPs hold regular surgeries around their constituencies. You will usually need to make an appointment by contacting the MP’s local office, but this is straightforward.
Be prepared by taking a copy of your original letter and a brief list of the main points you wish to raise. Be prepared to be specific about your case (or the case of the person you care for), what has or has not helped you, the help you still need and the changes that you want to see. If you can, show them our leaflets. If you have difficulty with memory or concentration then make some simple notes with a few words to remind you what you want to say. If that is a symptom of your Lyme disease, then tell them that. A friend or relative who understands your story can be useful to take along as well.
Not all MPs will be immediately persuaded. Remember, if they do not know a lot about Lyme disease, it will be your opportunity to give them credible information and to be an advocate on your own behalf. A true story truthfully told is always persuasive.
Let us know
Please let us know how you get on, or if you need any help with what to say, or want to check your facts. If your MP has detailed questions then we will be happy to write to them ourselves with more information.