Changes required by the Patient Community & Interest Groups

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

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