Patients Demands for addressing the Lyme disease epidemic in the UK

This list is a draft. Please add suggestions to the list !!
Handover management of Lyme disease in the UK to a new independent Body
  • Establish new UK based International Body with representative from other European countries (not a UK only issue)
  • Invite international Experts  (I.E. Horrowitz, Kenny DeMelier, Alan Macdonald, Armin Schwartz and others as advisory board)
  • Ensure Independent from PHE, NHS, Military (Who does it report to ? – Prince Charles would be a good patron !!)
  • Develop new Guidance for treatment of Lyme Disease (Based upon ILADS)
  • Remove PHE role as advisors to Doctors – Focus on Testing only – Not Research
  • Oversee  Independent Audit of Labs
  • Provide Guidance to GP’s

Treatment Centres

  • Establish four International Treatment Centres based upon geographic demand
  • Private & Public Partnership/Funding
  • Open to Foreign Countries Private & National  re-imbursement schemes
  • Offers Multiple Treatment Regimes (ABX, Herbals, Hyperbaric, Diet, Detox etc)
  • Basic Treatment is Free to All  – Advanced treatments and other services subsidised
  • Low Income patients costs covered in full
  • Introduce a monitoring programme to collect data on treatment success
  • Introduce and online Patient Portal that actively manages the recovery process and provides access to Doctors.
  • Introduce long term IV Antibiotics
  • GP’s treatment to be patient lead (ie that the treatment continues until THE PATIENT says that they are better)
  • GP to be willing to work hand in hand with alternative practitioners (eg pass over test results etc) and have dialogue with overseas clinics, backing up treatments in UK

Public Health Awareness

  • Instigate a Nationwide press campaign informing the public of the dangers presented by this disease
  • Notify every person who received a serology blood test that they need to be retested if not well.
  • Ensure that every National Park and local council park displays warnings
  • Provide TV campaign warning people about Lyme Disease
  • Poster Campaign in Doctors Surgery stating tests are <50% accurate
  • leaflets in ALL gp’s surgeries, hospitals, libraries, tourist information boards and forestry centres
  • Boards warning of ticks, Lyme and what to do if you find one in ALL forestry and wooded areas.

Improved Diagnostics

  • Adopt the MSIDS Differential Diagnostics approach
  • Testing to be used as a useful tool rather than the only diagnositc tool
  • Clinical diagnosis based on symptoms
  • Drop reliance upon positive testing with Symptom score is high (above 46 MSIDS)
  • Treat without testing  when EM rash presented

Testing

  • Nominate 3 highly reliable Test Labs in Europe that are accredited to perform tests for Lyme Disease and co-infections
  • Introduce new tests to replace the IGG/IGM serology Tests (I.E. Culture, Elispot LTT and Dark Field Microscopy)
  • All tests results must contain their Accuracy (Sensitivity and Specificity) with a simple probability score of it being correct (50% Accurate)
  • All test results must include the details of the test (Western Blot Bands) including upper/lower bands
  • Porton Down Lab results to be subject to Independent Audit

Policy

  • Make a Notifiable Disease
  • Protection for Doctors treating Symptoms
  • Exemption from GMC Annual GP Appraisals Antibiotic over use monitoring  for doctors treating Lyme Disease
  • Automatically allow anyone with Lyme to claim disability benefits
  • Establish Surveillance systems
  • Remove PHA connection with IDSA (Conflicted Financially and discredited)
  • Mandatory  training for healthcare practitioners

Research & Development Budget

  • Government Funding equal to HIV/CANCER relative to people with Disease based upon European prevalence rates.
  • Research into sexually transmitted Infection risks
  • Funding for Computer Based Differential Diagnosis (MSIDS ?) available online to Patients & Doctors
  • Funding for Research into GP Surgery based Testing  (Collaboration with IanXen and others)
  • Research to find testing that is more reliable
  • Full Access to Porton Data for analysis
  • Establish a dedicated R&D facility at an existing teaching hospital
  • Carry out research into the areas identified by a recent patient survey (??? Details needed)
  • Research causes of Persistency

Public Enquiry

  • Initiate a judicial public Enquiry to review how many deaths were caused by Lyme Disease and to determine the root cause of the catastrophic failure by government ministers, PHE , GMC & NHS to manage this epidemic
  • A Public Enquiry may prevent an imminent class action lawsuit being instigated against the PHE & NHS  for Human Rights abuse and/or criminal negligence.
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