This meeting was organised by an amalgamation of UK Lyme disease organisations and Teresa Pearce MP (whose constituent, Debbie Collins, is a member of two of these organisations). Some of the top clinicians and researchers in the field were present at the meeting, in order to give MPs and peers the opportunity to gain a better insight into the issues regarding the handling of Lyme disease in the UK. Representatives from UK Lyme disease organisations and patients were also in attendance to share their experiences.
At the meeting, MPs and peers heard how Lyme disease is growing at an alarming rate across the UK, due to a significant increase in numbers in the UK. Doctors and Lyme disease advocates spoke of their concern that the true number of cases of Lyme disease in the UK is likely far higher than current Public Health England estimates. This is due to a worrying amount of cases being missed, often as a result of doctors receiving insufficient training in this area and testing methods being unreliable. This has significant health and financial implications for patients, their families and society as a whole.
The following areas have been raised for consideration:
- Measures to determine the true incidence, prevalence and risk of Lyme disease in the UK. (Lyme disease is not a notifiable disease. Only test results defined as positive by the Rare and Imported Pathogens Laboratory are reported for England, Wales and Northern Ireland. Those diagnosed by clinicians or other labs are not included).
- Increased awareness among all front line medical staff as a matter of urgency.
- Increased awareness of the potential risks from tick bites among the general public.
- Up-to-date information and advice displayed in GP’s surgeries, pharmacies, schools, parksand forests.
- Review of present Lyme disease guidelines to be made available to GPs and hospital practitioners, with acknowledgement of the limited evidence base for these guidelines and the importance of:
- Early clinical diagnosis.
- The consequences of missed diagnosis.
- The limitations of currently available tests.
- The limitations of suggested treatment protocols.
- The existence of international evidence -based guidelines.
- The lack of clinical expertise in Lyme disease within the UK.
- The urgent need to develop specialist Lyme disease clinics.
- The potential risk of tick borne infections to the UK blood transfusion service.
- Updates on progress of the three government reviews.
- Re-examination by HSE of research that was carried out by Oxford University scientists and sponsored by HSE themselves, which was published at the NATO symposium in London on Lyme disease in May 1993.