Your signature on this petition will help us fight for our right to health. UK sufferers of B12 deficiency and PA are routinely resticted or denied access to the life saving 55p vitamin B12 injections they desperately need. PLEASE BE AWARE THAT IF YOU 'CHIP IN' YOUR MONEY GOES DIRECTLY TO CHANGE.ORG IT DOES NOT COME TO www.b12deficiency.infoMaking our life saving, harmless, B12 injections available OTC will transform lives!
I created www.b12deficiency.info to help patients find key information on the condition.
The majority of UK patients suffering from Vitamin B12 deficiency and auto immune pernicious anaemia (PA), are restricted to a ‘maintenance dose’ of just four B12 (hydroxocobalamin) injections per year. This is tragically under treating a serious and very common deficiency - and this is only if patients are fortunate enough to achieve a diagnosis.
This regime is based on saving cash and not care for patients - there is no clinical evidence for this frequency.
B12 deficiency affects both sexes and all ages, but the general misconception is that it only affects women over 60. Many of us inherit this condition and in turn, so do our children.
Hundreds of thousands of UK citizens are B12 deficient, there are many symptoms, many causes and it is commonly misdiagnosed. Vitamin B12 has no known toxicity, in fact it is used in huge quantities as a treatment for cyanide poisoning. You cannot overdose on B12 injections.
This deficiency can occur for many reasons, these include - inborn errors, parasites, and the use of many common drugs including, metformin and Omeprazole.
B12 deficiency affects all body systems, from our brains to the tips of our toes. The protective coating for our nerves is stripped away and our brains start to shrink from a lack and a restriction of a 55 pence B12 injection. Many patients are misdiagnosed with conditions such as Alzheimer's, dementia, Bipolar, Multiple sclerosis, Chronic fatigue syndrome, autism, ADHD, fibromyalgia to name a few. Countless sufferers remain undiagnosed due to flawed diagnostic tests, a lack of screening and health professionals lack of knowledge of the condition.
Removing the classification of POM (Prescription Only Medicine) from our injectable B12 would have a profoundly positive affect on sufferers, their families and society as a whole.
Many countries all over the world including EU nations - France, Germany and Spain allow their citizens to buy this essential vitamin over the counter. Please give us the chance for optimum healing by allowing us unrestricted access to the amount of B12 our individual bodies need. We are all at different levels of damage and numerous symptoms are reversible with the right level of treatment if diagnosis is early enough. Each patient is only too aware of when they need another injection but these pleas for help fall on deaf ears.
Desperate patients turn to online pharmacies to buy this essential vitamin due to a complete inability to access treatment from their doctors. Many doctors routinely fail to understand the reality of this debilitating condition. UK pharmacists train to give injections, perhaps they can help to teach us or administer?
These injections are vital to people who cannot absorb this life saving vitamin from food. Vitamin B12 is food and we cannot live on just four meals per year. It is worth noting here that B12 deficient dogs are given weekly injections.
The RDA for a non deficient patient is 2.5 mcg each day but those of us who cannot absorb B12 are expected to survive for 90 days at a time without it. This is a water soluble vitamin which our bodies cannot retain. It requires frequent replacement. Non deficient patients can freely access additional B12 whenever they need it from their body’s supply of stored B12. B12 deficient patients bodies, do not work in this way. B12 oral tablets will not repair our neurological damage, but frequent injections will.
We are at the mercy of health professionals who are not educated adequately about B12 deficiency leaving many sufferers undiagnosed or indeed misdiagnosed. These same health professionals then follow outdated, restrictive, treatment guidelines which assume each sufferer is the same.
B12 deficient patients are commonly labelled as lazy, depressed, hypochondriacs and yet we are routinely denied the vitamin we desperately need to live. A recently published patient survey from the Pernicious anaemia Society, records that nearly two thirds of the 889 respondents were dissatisfied with current treatment and that 14% of patients waited more than ten years for a correct diagnosis.
There are many doctors attempting to treat our symptoms with antidepressants, but our B12 deficiency induced depression can disappear completely with frequent regular administration of this non toxic, nerve repairing vitamin.
Some of our doctors who do understand B12 deficiency and pernicious anaemia are reprimanded for prescribing B12 injections for desperately ill symptomatic patients who are ‘within range’ on flawed B12 serum tests.
This under treatment renders those of us with this condition - amongst other things - seriously mentally impaired, experiencing debilitating pain, bed ridden, chronically fatigued, at high risk of stroke or heart attack, and unable to walk or to stay awake.
Existing but not ‘living’ makes our lives a misery and our human rights are not being fulfilled.
Dr June Raine, CEO of MRHA you have an opportunity to rectify this. Our right to health is a fundamental part of our human rights but sadly the vast majority of B12 deficient patients are excluded. Some patients have successfully fought for the right to receive more frequent injections however most of us are denied this luxury. Most don't succeed in educating their doctors and many don't have the energy to fight, so continue to deteriorate steadily.
'The right to the enjoyment of the highest attainable standard of physical and mental health,’ is stated in the 1946 Constitution of the World Health Organization (WHO).
The NHS Constitution 26th March 2013 states that the NHS 'has a duty to each and every individual that it serves and must respect their human rights.'
I inherited B12 deficiency, I cannot absorb B12 from food and I will require injections for life and yet I am not allowed a repeat prescription for this vitamin. I was diagnosed in 2012 and I am passionate about raising awareness. I know people who have been sectioned due to this condition, who have been misdiagnosed with Parkinson's & Alzheimer’s and who have tried to take their own lives due to lack of adequate treatment.
Please sign and share this petition. You will know someone affected by B12 deficiency.
All B12 deficient patients want is to be able to be in charge of their own healing. To be allowed the same rights as a diabetic, to be able to buy OTC and self inject this life saving vitamin, as and when they need.
Thank you.
Tracey Witty
www.b12deficiency.info
http://b12deficiencyblog.wordpress.com/2013/11/01/imagine-being-sectioned-for-a-vitamin-b12-deficiency/
http://b12deficiency.info/letters.html
http://b12deficiency.info/what-to-do-next.html
http://www.youtube.com/watch?v=BvEizypoyO0
Patient survey http://www.britishjournalofnursing.com/cgi-bin/go.pl/library/article.html?uid=104134;article=BJN_23_7_376_381
False normal B12 results and the risk of neurological damage
UK NEQAS B12 Alert
Professor David Smith and his team have previously shown that high levels of homocysteine and low levels of vitamin B12 were both related to a faster shrinkage of the whole brain (global atrophy). http://www.mrc.ac.uk/news/news/b-vitamins-can-slow-the-alzheimere28099s-disease-related-shrinkage-of-the-brain/
Nice Guidelines
http://cks.nice.org.uk/anaemia-b12-and-folate deficiency#!scenariorecommendation:4
Vitamin B12 safety - High dose Vitamin B12 shown to be safe for more than 50 yearshttp://stichtingb12tekort.nl/wetenschap/stichting-b12-tekort-artikelen/english/treatment-with-high-dose-vitamin-b12-been-shown-to-be-safe-for-more-than-50-years/
