Problems faced by patients in the UK
At present, there is currently no available antibody test that can accurately diagnose whether or not you have Lyme Borreliosis.
The diagnostics used by the NHS are unreliable and if the test used by the NHS fails to detect your infection, the NHS will refuse to treat you. If you are one of the more fortunate patients who test positive, the NHS will only offer you minimal treatment and will refuse to treat you if your symptoms persist. Many patients who have tested negative here in the UK via the NHS are forced to pay for private testing and treatment abroad, and it isn’t cheap. However, blood test results from reputable private laboratories all over the world are not being recognised by our NHS. Infected British tax paying citizens are suffering because of the NHS’ intransigence.
Public Health England are in charge of the testing and keep insisting that their tests are completely accurate and never miss a case of Lyme disease. British people are dying because of this infection; it can cause stroke, heart block, blindness, paralysis, liver disease, Parkinsonian symptoms, ME/Chronic Fatigue Syndrome and is implicated in Multiple Sclerosis and Alzheimer’s disease. We believe thousands of people remain undiagnosed or misdiagnosed. Many are told their problems are psychological or that they’re suffering from various syndromes of no known aetiology.
We believe there is a clear and present danger that has not been acknowledged by the UK Department of Health. We need this epidemic to be recognised and acted on immediately. The complexity of this disease is akin to that seen in Tuberculosis and Syphilis. Our European neighbours are reporting epidemic levels of incidence between 10 and 450 per 100,000 of the population.
This is a public health problem that is destined to become an even bigger problem unless we tackle it now.
True Scale of the problem hidden
- Thousands are living in chronic health, many are wheel chair bound, in severe pain and unable to function
- Hundreds are dying every year – Far worse than BSE/CJD scandal – True scale is unknown
- Number of deaths are hidden from public – No tests are carried out to look for root cause
- Doctors in US & Europe are saying 90% of CFS-ME and Alzheimer’s have Lyme
- Congenital & Sexual Transmission serious risk
- Blood Supply exposed to Lyme Disease infected donors
- Climate change, ticks living longer, people coming into contact with ticks more often) are leading to ever increasing rates of infection.
PHE are ignoring the Existence of Chronic Lyme Disease in the UK
- PHE ignoring the irrefutable science that confirms chronic Lyme Disease
- PHE / NICE follows US Insurance company conflicted IDSA advice
- Belgium, Germany & Sweden are leading the field testing and treating
- Former Soviet bloc countries have better treatment (i.e.Estonia)
- Doctors ridicule patients for “believing” they have Lyme disease
- Doctors are hauled up before GMC with threats to remove their license
- No NHS doctors are able to treat Lyme Disease effectively in the UK
Tests are not accurate
- UK tests are Porton down using outdated inaccurate testing technology
- UK Test believed to be missing 50-95% of all Lyme Disease patients
- Elisa test screens out many patients who would otherwise be Positive by Western Blot
- Immunoblot test excludes two common strains of Lyme disease (Garni and Myomoti)
- High percentage of NHS False Negatives testing positive by private tests
- PHE have never been audited to determine how accurate their tests are
- Positive European Tests are ignored by the PHE preventing treatment
Primary Care Doctors are not educated to diagnose Lyme
- PHE are not educating doctors adequately to diagnose Lyme
- Most GP’s are blissfully ignorant causing thousands to suffer needlessly
- Even Clinical proof (EM rash) is being ignored by doctors
- Doctors unable to treat Lyme as NICS/PHE guidance prevents them
- Doctors must be encouraged to use antibiotics based on clinical symptoms.
No Specialist Lyme Treatment Centres
- No Lyme Specialists within NHS
- The Winchester clinic was set-up and close due to no Funding
- No NHS treatment for Chronic Lyme Disease
- Only Patients with £20-100k can afford private treatment
- Only 2-3 Private clinics operate under harassment from GMC
Official Statistics are misleading Parliament and public
- PHE are not checking statistics are correct
- Testing flawed = Flawed stats
- PHE thought to be under reporting Lyme disease prevalence by 10-30x
- No Statistics on total population with Lyme (reported or not)
- No follow up on known or suspected cases of lyme
Grossly insufficient Research Funds allocated to Lyme Disease
- 10x more prevent than Aids with 1% of the research funds
Political Ticking Timebomb
- Government should act to address before the truth is public
- Many MP’s are worried as they can see there is a growing issue
- Problem receiving greater visibility and press coverage
This list is undergoing change, so check you have the latest version. Much more content will be included here from various sources.
To see the proposals on how to address these serious issues Click Here
For guidance on how to Lobby your MP or anyone in Click Here
Health Minister Role
- preventing avoidable mortality
- health protection
- emergency preparedness
- organ donation and transplants
- It is important to learn from mistakes in health and social care and to prevent them happening again