On 8th May 2018, the newly formed All Party Parliamentary Group held their first meeting of an Enquiry into Lyme disease which they are conducting. The series of meetings will cover a range of topics and the proposed schedule is as follows but may be subject to change:
Session 1- NICE Guidelines Chairs (Saul Faust, Norma O’Flynn) (8/5/18)
Session 2- Epidemiology and Tick Spread in the UK
Session 3- Testing
Session 4- Research
Session 5- Experts from Abroad (TBC
Session 6- Secretary of State & possibly Minister responsible
Lyme Disease UK representatives attended the meeting, were unable to talk but were given the opportunity to submit questions in advance, some of which were asked in the first meeting. We will be updating this page as future meetings occur and we are positive that this in-depth Enquiry will enable politicians to pave the way for positive change in the way Lyme disease is addressed in the UK.
Feedback from Reps on Session 1: NICE Guidelines Chairs
The MPs and Lords asked some really good questions and raised some very important topics, including some issues which have not been addressed by the new NICE Lyme disease guideline. There was an acknowledgement from the NICE Chairs of the limitations of current tests but there is concern that it is believed that the UK is a world leader in the sphere of Lyme disease when to many, there appears to be a serious lack of knowledge and expertise in this country. There was deliberation over whether Lyme disease specialists are in fact necessary which is a concern when it is clear that the illness is very complex and that it isn’t being handled well by other consultants at present. The issue of patients having to pay for private treatment abroad was also brought up. The need for raising awareness was discussed but it is worrying that there appears to be no central process for disseminating awareness and education throughout the UK.
Please note that these comments are based on informal note taking
Official minutes are available here
Please check the APPG website for updates on upcoming meetings and information on how to attend and in the meantime, check to see whether your MP is a part of the group and if not, invite them to join, ask for briefings from the APPG and to attend future meetings.
You can find your MP’s contact details here
You can find a letter template here