Please attend the patient-led parliamentary conference on January 19th, 2015.
This petition had 1,257 supporters
To Jane Ellison MP, Professor Dame Sally Davies and The Rt Hon Jeremy Hunt:
UK Lyme patients and concerned scientists and doctors have been preparing since May 2014 to meet with you: we hoped to inform you directly of our concerns about the dire state of diagnosis and treatment of Lyme Borreliosis and tick-borne diseases in Britain.
We have learned that you, Jane Ellison MP, are the minister responsible for many aspects of public health in Britain, and some of those are very pertinent to the situation with tick-borne diseases, namely: preventing avoidable mortality; relationship with Public Health England; health protection, including: emergency preparedness, Immunisation, toxicology and infectious disease; blood and vCJD, organ donation and transplants; and, in particular, the policy statement: "Learning from mistakes: It is important to learn from mistakes in health and social care and to prevent them happening again".
We cannot emphasise enough how much we need to talk with you and to explain directly what our concerns are. A panel of experts from Public Health England has been proposed to hear our presentations on your behalf. Unfortunately, those same panel members have already heard similar presentations from our fellow patients and colleagues in several symposia and conferences over the last 2 to 3 years. They are very welcome to attend but we also need fresh hearts and minds to appraise the overall situation, and in particular, a government minister from the Department of Health.
We therefore sincerely exhort you to hear our presentations on January 19th, 2015, or instead, to please propose one of your colleagues at ministerial level to attend. It would be most helpful if guardians of the public health such as Dame Professor Sally Davies, and any members of the Health and Safety Executive who have a remit in infectious disease, particularly vector-borne disease, could be there to hear what we have to say.
First and foremost, it needs to be made clear that there is currently no available antibody test that can accurately diagnose whether or not you have Lyme Borreliosis.
At present, 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.
Conference facilitator Demetrios Loukas’ Lyme story:
Lyme disease is an infection that is passed onto humans by an insect known as a tick. I was bitten by a tick back in 2005 while doing my teacher-training in Oxfordshire. I believe I was bitten by the insect while at a farm with my class of primary school children. I do remember the bite on my right calf and I also remember developing flu-like symptoms and a viral rash on my abdomen a couple of weeks later. At the time of the incident, no-one was concerned and the GP I saw didn't perceive it to be a problem.
For the following 6 years, I went from NHS consultant to NHS consultant for infections that didn't make sense; I exercised regularly, I didn't smoke or drink or take recreational drugs or even eat unhealthily, yet I was always sick. In 2011, the infection attacked my heart: my pulse slowed down and an ECG revealed I'd mysteriously developed a first degree heart-block. At night, my pulse would plummet to 33bpm and I would feel like I was dying. Some doctors, even professors put it down anxiety but I was never an anxious person. Weeks after my heart rhythm had changed, I developed a hiatal hernia and this made the heart condition even worse. I ended up having very serious abdominal surgery in the hope that it would remedy my heart condition but it failed to correct my arrhythmia. In actual fact, my health deteriorated after the surgery and I became alarmingly unwell.
Months later, after I'd insisted on seeing an endocrine specialist, tests revealed I was anaemic and deficient in all sorts of metals like zinc. Borreliosis, the name of the infection given to you by a Lyme-disease-carrying tick, is known to deplete your body of heavy metals like iron, zinc and magnesium, amongst others. Eventually, after months of complaining and even being faced with a hospital ban, I saw an NHS electrophysiologist cardiologist who asked me if I'd ever been bitten and 24 hours later, I remembered the incident in Oxfordshire. Unfortunately, my NHS test for Lyme disease came back negative but luckily for me, this consultant was well aware that the NHS test wasn't 100% reliable and referred me to a private clinic here in the UK, who in turn referred me to a laboratory in Germany.
Getting my blood samples to Germany wasn't easy but a couple of weeks later, the results were conclusive: I had Lyme disease. I've had to find approximately £9000 to fund treatment that I should have received on the NHS. I'm still not recovered and my heart is still slow but it's a lot more stable and doesn't plummet in the way it used to before my two long courses of oral and intravenous antibiotics. I'm not the only one who's been let down by the NHS; there are hundreds of others in my situation and of all ages and all backgrounds. Ticks are dangerous but I grew up believing insects that bite you and give you diseases live in hot countries, not here in the UK. My ignorance has cost me my life.
I've been helped by a collective of doctors and scientists who have the public's best interest at heart and my local MP Mr. Simon Hughes, who's been excellent, has invited MP Jane Ellison, minister for public health, to attend a parliamentary conference on the 19th January, 2015. Unfortunately, Jane Ellison has declined Mr. Hughes' invitation to attend this conference but has suggested a couple of experts attend in her place. Lyme disease is a serious national health issue and this conference would give Jane Ellison the opportunity to engage members of the public that have been crippled by this difficult to diagnose disease. The current diagnostics used by the NHS are majorly failing to detect the disease and a great number of British tax paying citizens are going undiagnosed, if not misdiagnosed and untreated, and this is unacceptable.
I have gone to great lengths to bring together everyone that has helped me improve and this includes doctors and scientists from as far as Germany and Denmark. Please sign my petition urging Jane Ellison MP, Professor Dame Sally Davies and The Rt Hon Jeremy Hunt MP to attend along with their experts to listen to what the speakers have to say and more importantly, to engage those afflicted by this horrible disease.
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