On the 23rd January 2018 the first meeting of the APPG (All-Party Parliamentary Group) for Lyme disease was held in Parliament. The meeting was opened by Co-Chairs, Michelle Donelan MP (Chipppenham) and Simon Hoare MP (North Dorset). Members of the APPG panel were joined by other MPs and Peers with an interest in the subject, to hear statements from all the major UK Lyme disease organisations.
Some of the points we raised included:
The issue of misdiagnosis - due both to unreliable serology testing and a widespread lack or insufficient level of awareness, both among the general public and among medical professionals
Our aim to reach a wider audience with our awareness and educational initiatives (we have some exciting things lined up for 2018). We also asked that the APPG push for the development of Government-led awareness initiatives.
The current limitations of treatment options available on the NHS.
The need for more UK-specific research to be carried out. However, we also stressed the importance of ensuring that the results of research can reach and be applied in a clinical setting in a much more efficient manner than is currently the case.
Finally, we spoke of the need to take control of the narrative surrounding Lyme disease, in order to ensure the right information is being shared, both with the general public and medical professionals, in an effective and straightforward way.
The meeting took place against the backdrop of the recently published reviews into Lyme disease (which were commissioned by the Government and carried out by the EPPI-centre and UCL) and the draft NICE guidelines for Lyme disease. One of the issues About Time for Lyme raised at the meeting was the fact that, in our opinion, the draft guidelines fall short in several areas - including in the areas of awareness, diagnosis and treatment. Overall, we feel that they fail to provide an adequate response to the scale or severity of the problem and we asked that the APPG help to raise this concern.
You can see a copy of our handout here and our full statement here.
We felt that the meeting was a very positive step forward and we were encouraged to see the genuine interest, concern and commitment to move things forward in the handling of Lyme disease in the UK. We would like to express our gratitude to the Parliamentarians involved and we very much look forward to working together with the APPG in the future.
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