Changes required by the Patient Community
This draft has not been verified. Awaiting further content and input from existing material.
Priority 1
- PHE to agree to collaborate with scientists to develop a gold standard method of detecting Borreliosis in the UK. [Note: This is the objective from the 19th Jan Parliamentary Meeting]
Priority 2
- PHE using LTT Elispot, Melissa, PCR, Microscopy and scrap 2 Tier test
- Chief Medical Office to update public on true risks
- Differential Diagnosis (MSIDS) to be adopted by all GP’s made available on NHS website
- Treatment based upon symptoms not unreliable tests
- Doctors must be encouraged to use antibiotics based on clinical symptoms
- NICE guidelines to be updated by new Lyme Treatment Centres
- Private Tests to be accepted for NHS Treatment
- IV Antibiotics to be given to Patients
- Natural Remedies to be offered
- Announce to press that Lyme Disease may be an STD
- National Press & TV Advertising warning of Lyme Disease risks are increasing
- New Treatment Protocol for UK – Patient Centred – Based on ILADS – Owned by new Centres not NICE
- Doctors removed from Rigid guidelines preventing novel techniques
- Treatment of Lyme by Antibiotics to be removed from Annual Appraisal monitoring
- Better Surveillance & Statistics
- 3-4 National Treatment centres set-up
- Specialists brought in from Abroad
- Lyme Literate Doctor Training Scheme
- New Professional Body set-up for Lyme Literate Doctors
- PHE role changed to Testing for Lyme and introducing new tests – Not medical advice to doctors
- PHE Test results independently Audited and published every 6 months
- GMC prevented from harassing doctors
- Research Funding for Testing, Treatments & Prevention (relative to other major disease prevalence)
- Funding for UK company IanXen to develop microscopy tests for Borrelia and common co-infections
- True survey of Lyme Patients to determine how many are suffering
- Announcement that Lyme tests were inaccurate and retesting required (I.E Recall Notice)
- Training for current GPs about Lyme (and other TBDs) diagnosis and treatment.
- Prevention and awareness training for the general public, by government agencies.
- All public Places warning Signs at entrances
- Schools given warnings and teacher training
Priority 3 – If 1 & 2 not achieved
- Public Inquiry
- New Labs Independent Labs to set-up in UK under independent watchdog (Private/Public)
- New independent Lyme & Co-infections Lab set-up (Private & Gov funded)
- Suspicious deaths should be tested for Lyme bacteria and other tick born infections
Version Control
- 30th Jan 2015 – First Draft 0.2 – Added objective from 19th Jan Meeting and prioritised remaining
- 30th Jan 2015 – First Draft 0.1 prepared with input from 3 people who are approaching their MP’s
