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Letters

Here are letters demonstrating the ignorance patients are subject to from some health professionals, sadly I know there are many more letters just like these.

The first letter suggests that what is actually needed to treat B12 deficiency is expensive psychotherapy and anti depressants and not the essential vitamin. I think you may agree that it is ridiculous.

How much money could be saved by the NHS if we sufferers could just be allowed the access to this supplement as and when we need it and to be treated as individuals?

If B12 deficient patients could be treated as diabetics are treated - the diference to our lives would be incredible.  If I were a 5 year old diabetic, I may be taught to self inject insulin and yet for most B12 deficient patients, they are told this is impossible. Treatment with this vitamin injection is restricted as though it is a dangerous narcotic despite having no known toxicity, in fact it is used in huge amounts as a treatment for cyanide poisoning. This restriction leaves many patients desperately under treated and seriously ill for the majority of the time. 

If you have such a letter and would like us to display it here please let us know.

 

Letter Letter

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Letters 1 & 2

The second letter (above) was sent to a patient with a confirmed strong family history of B12 deficiency and a very low original serum b12 level. They also had many symptoms of B12 deficiency including parasthesia (tingling/pins and needles in hands and feet). This is a known neurological symptom of B12 deficiency which can be reversed if treated early enough and adequately. This specialist is not following BNF guidelines which instruct the health professional to use hydroxocobalamin on alternate days until there is no further improvement. Incorrect evaluation of the situation by ignorant doctors can severely harm patients.

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Letter

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Letter 3 - The placebo effect!

This neurologist describes B12 deficiency symptoms perfectly and then tells the patient that the infrequent injections are having a ‘placebo effect’. He then goes on to state that his view would mirror those of other neurologists and haematologists who treat PA and SACD! The awful truth is he’s right, many specialists are completely ignorant and instead of hearing the patient and using this essential 55p injection they suggest expensive MRI’s and nerve conduction studies and yet more blood tests. Sadly there are inaccuracies throughout the letter due to the consultant's inability to listen.

If there are by chance, any neurologists, gastroenterologists or haematologists who do understand B12 deficiency please would you help us to educate your colleagues?

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Letter

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Letter 4 - Dr misses obvious B12 deficiency

A friend of Ellen (aged 70), discovered a severe B12 deficiency when her baffled consultant gastroenterologist couldn’t.

Ellen was subjected to multiple procedures and was suffering classic B12 deficiency symptoms. It’s not rocket science, this consultant really was given all the information required for a correct diagnosis, on a plate!

Please see the case study connected to this letter.

 

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Letter Letter

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Letter 5 - denying correct treatment!

This first letter was sent to a patient who suffers neurological problems of B12 deficiency and who had previously been seen by a haematologist who instructed the GP to treat as per the BNF Guidelines, (every other day until symptoms stop improving).

For some ridiculous reason each doctor in the practice was asked to sign this letter to deny correct treatment! This letter states that they had been advised by a neurologist 'that continuing injections for three times per week are more likely to do harm than good’. It goes on to say that ‘Patient safety is our priority’ - Priceless!

The second letter is from the neurologist who the patient saw privately and to add insult to injury they wanted £200 to tell the patient that they felt it 'highly irregular' to treat her properly!

This patient resides in the Cardiff and Vale area where patients struggle to achieve diagnosis due to the appallingly low reference range of 130ng/L, please visit http://b12deficiencyblog.wordpress.com/2013/11/11/cardiff-and-vale-nhs-trust-we-have-a-huge-problem-lab-range-for-serum-b12-130ngl-900ngl.

 

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Letter

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Letter 6 - A GP and a haematologist who get it all wrong

www.b12deficiency.info/blog/2015/07/23/dumb-and-dumber-with-money-to-burn/

 

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Letter

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Letter 7 - Supportive haemotologist's letter for a patient with SACD.

See this fantastic haematologist letter in support of a patient's frequent B12 treatment.

'.......a treated case of pernicious anaemia and subacute combined degeneration of the cord. She requires high doses of hydroxocobalamin to maintain her general well being, i.e.  1mg intramuscularly daily.… I will leave it to yourself to make enquiries and discuss whether her hydroxocobalamin can be fully funded by the NHS.'

 

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Some description

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Letter 8 - Apparently this patient and many others receiving similar letters can miraculously absorb B12, because 'B12 injections are given too easily'! 

It is shocking to think that patients who are B12 deficient are being sent letters like this by medical professionals who are clearly lacking full knowledge of the life threatening condition that is B12 deficiency. The advice given in this letter is frankly ridiculous. They give the instuction to buy 'over the counter' supplements and to buy a 'value pack brand which is better value' !! This ridiculous advice is harmful. Suggesting that supplementing with oral tablets (which will not correct neurological damage) to patients arbitrarily, is completely ludicrous.

Quite how the author of this letter proposes to 'prove that people cannot absorb the carrier accross the stomach membrane' remains to be seen for this patient.

Unless they know the patient's deficiency is solely due to a dietary lack or that they have a parasite or bacterial infection that has been completely eradicated then they should be assuming that there is a malabsorption problem and treat it accordingly with B12 injections!

To see what this kind of advice can lead to please see here.

Never has it been more urgent to enable access to injectable B12 OTC in the UK!

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