B12 the Antidote – joining up the dots

We may be exposed to poisonous gases and chemical toxins to different degrees at some point in our lives, whether it be from air pollution, exhaust fumes, pesticides, cleaning products or from faulty or poorly fitted appliances within our homes or workplaces.  Flood, fire and warfare are all situations where potential exposure to toxic gases can occur.

However, B12 in the form of hydroxocobalamin is an excellent toxin scavenger, this means that if you are exposed your levels of B12 could be inactivated and depleted.

Could you be an unknowing victim? Do you have diagnosis of CFS, ME, fibromyalgia, depression, Alzheimer’s and have not had thorough screening for B12 deficiency?

Late last year I met Belinda Goldsmid, she and her family were chronically exposed to products of combustion, including carbon monoxide (CO). It was leaking into their home from a poorly installed and situated boiler flue. This had devastating health and social effects. Continual low level exposure can can lead to chronic ill-health, poor mental health and extremely debilitating symptoms.
Belinda is now experiencing phenomenal improvement of her previous debilitating symptoms with the use of B12 (hydroxocobalamin) injections. Following this, Belinda asked for my help in finding research papers documenting the use of B12 as a treatment for toxic exposure, including the silent killer carbon monoxide.

Maybe the origin or the exacerbation of your B12 deficiency can be traced back to toxic exposure?

For more information please see our new page, www.b12deficiency.info/b12-the-antidote

Belinda was helped by the charity CO Gas Safety, you can find more CO charities here.

If you think you might be B12 deficient the What to do next page is your starting point.

If you want to learn more about B12 direct from Sally Pacholok please see our Conference page

 

UK B12 deficient patients, paltry 3 monthly maintenance dose of B12 injections is based on cash not care!

The question you will be asking of your GP after reading this is ‘show me the proof that 3 monthly injections are all I need’.

The biggest problem B12 deficient patients face once they’ve achieved a diagnosis is desperate under treatment. Our maintenance dose is listed in the NICE Guidelines ‘with neurological involvement’ at two monthly intervals and without at three monthly intervals. Unfortunately many doctors do not take into account neurological symptoms and the patient is automatically placed onto a three monthly maintenance dose of B12 injections after loading doses.

Vitamin B12 is water soluble. The rate of excretion is fast, there is no internal cupboard where we can pop a bit by for a rainy day. If we are lucky and our mother had a good supply of B12, we would be born with a store, but this eventually runs out or stops being accessible for many reasons.

Our maintenance dosage is based upon cost saving exercises and absolutely no care for the patient. Isn’t it time for a change in this old way of thinking?

The fact is that GP audits (and no clinical evidence or patient involvement of any kind) eventually made three monthly injections the ‘optimal’ maintenance dose of B12. These were purely designed to save money and had nothing to do with patient care, this situation needs an urgent overhaul.

It appears that without correct analysis, observation or consultation with patients many of our doctors truly believe we only need four injections a year because this is what has been repeatedly presented to them.

The content of these audits which I detail below, have become an intractable belief and have been cited by later research which then further eroded any good common sense. Worse still, other countries cite UK GP audits in order to back up rationed treatment for their patients too!

There would rightly, be an almighty uproar if every anaemic patient were told that they needed exactly the same amount of iron only 4 times per year, and all diabetic patients were told they need the same dose of insulin quarterly? Surely we’d think it crazy if it was suddenly decided that just 4 doses of vitamin C a year cured scurvy?

This post tries to detail how our three monthly injection regime was arrived at from  the first study and the following three GP audits.

This whole sorry tale below leaves patients without proper care and vital treatment and seemingly ties the hands of doctors.

None of the Marketing Authorisation Holders in the UK use any clinical evidence for ‘optimal dosage of 3 monthly treatment’ and base the information written in their Patient Information Leaflet’ upon BNF Guidelines and the Martindale Drug Reference book. Public Health England, NHS England and NICE have not been able to provide any clinical evidence either.

This is what the BNF said –

Thank you for your email to BNF Publications. 

Unfortunately we are unable to access our archives to check what evidence base was used to determine the 3 monthly dosage of hydroxocobalamin. 

BNF content will be reviewed in line with the SPCs for future updates of the BNF.

Rather like saying ‘the dog ate my homework’ don’t you agree?

No common sense has been applied in these audits and yet people adding their names to these are highly educated. When have patient voices ever been heard and acted upon in B12 deficiency?

• The first paper you see is from 1971 this discusses excessive prescription of B12 and seeks to ‘standardise B12 treatment’.  Like that would ever be appropriate!

• The next report in 1983 carried out in by a Leicester GP training practice. This decides that monthly B12 injections should move to ‘optimal’ 2 monthly frequency. It sets narrow and flawed diagnostic criteria and unfortunately set the tone for the following GP audits and it still largely influences diagnosis today.

• In 1985 a further study from Coventry was published titled ‘B12 injections: considerable source of work the district nurse’ this report tries to address the change from cyanocobalamin to hydroxocobalamin and just 2 years later decided that optimal B12 treatment is three monthly.

• The final audit took place in 1995 again in Leicestershire and this report used the same flawed diagnostic criteria and further reinforced the mad idea that humans only need vital B12 four times a year.

These repeated audits did not allow for GP’s to treat patients as individuals.

None of it is based on science or any clinical evidence – it’s based on pounds. The patients were dictated to, never consulted and neither were the nurses who administered B12 injections.

I have split this post into the four different reports and have highlighted extracts to demonstrate just how ridiculous and harmful they are;


First you will see a report from 1971 that in a study on excessive prescribing, B12 treatment was singled out, possibly due to the idea that GP’s were giving patients B12 injections, willy nilly as a ‘tonic’.

To see the full text follow this link – http://www.ncbi.nlm.nih.gov/pmc/articles/PMC478645/pdf/brjprevsmed00003-0029.pdf

I have chosen some parts to highlight below;

1971 Expected and Observed Values for the Prescription of vitamin B12 in England and Wales

A.L. Cochrane and F Moore M.R.C. Epidemiological Research Unit

(For your info – Epidemiology is the study of how often diseases occur in different groups of people and whyEpidemiological information is used to plan and evaluate strategies to prevent illness and as a guide to the management of patients in whom disease has already developed. – I add this meaning since the study below and the following audits, had the very opposite effect on preventing illness in B12 deficient patients.)

This report states;

There is considerable literature about the oddities of the prescribing habits of British doctors, the factors influencing them, and the attitudes of doctors to prescription, but there have been as far as we know, no attempts to compare quantitatively the expected amount prescribed, on the basis of good clinical practice, with that actually prescribed. There are in general three reasons for this ignorance of the prevalence of common diseases, the lack of specificity of particular drugs for particular diseases, and the lack of standardisation of therapy. Such a study requires a drug which is practically specific for one condition whose prevalence is known, and the one which approximates most closely to this appears to be vitamin B12. We should like to stress that B12 was selected for these purely epidemiological considerations and with no malice aforethought. This paper describes an attempt to measure the expected and observed values for the prescription of B12 in England and Wales for the year 1966.

Can we really expect that any B12 therapy can be totally standardised? Aren’t all humans different? Aren’t the severity and the variety of symptoms different in each patient? The length of time the ‘illness’ has progressed undetected surely would be taken into account if logic were applied?

Isn’t the statement ….’with no malice aforethought’ akin to saying I don’t wish to be rude, but….’

Why make a point of such a statement when the irony is that the whole study is designed to cut down on perceived (and not scientifically backed up) ‘excess’ treatment which served to harm patients and did not, by any stretch of the imagination – ‘prevent illness’?

Estimates for observed Prescriptions for parenteral B12

……It is clear that there is a considerable excess of observed over expected.

Reasons for Excessive prescription

a survey of the prescribing habits of a 2000 random sample of general practitioners in England and Wales in 1967 showed that 33% of all prescriptions for cyanocobalamin and hydroxocobalamin in 1967  were for conditions other than ‘pernicious anaemia and other hypochromic anaemias… 

Discussion

We are very conscious of the imperfections of our data……..We are also aware in retrospect that 1966 was not a good year to choose as it was a period of change in ideas about the correct dosage of B12 for pernicious anaemia……
………we still however believe our exercise to have been worthwhile as it has shown how substantial financial saving could be made at no cost to health and a considerable saving of inconvenience to patients, doctors, and nurses.

Is it really an inconvenience to the patient to have a life-saving injection at the correct frequency for them? We don’t think so. But of course by not giving injections money was indeed saved.

No B12 deficient patient wants to have more injections than they need, they simply want a frequency that keeps them well and completely able to function. It has always been a very small price to pay in the grand scheme of things. It would be an even smaller price to pay if;
a – patients were taught to self inject
b – we could buy injectable B12 OTC


This paper from 1983 focuses on pernicious anaemia rather than the many other causes of B12 deficiency, much like today, patients who do not have a definitive diagnosis of PA are considered to be in need of less treatment (or none at all) despite the severity of symptoms being exactly the same.

1983 BMJ Practice Observed Volume 287 –
Audit of the use of Vitamin B12 in general practice.

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1549043/pdf/bmjcred00570-0031a.pdf

.……It has been shown that the observed use of vitamin B12 in general practice in England and Wales greatly exceeds its expected use and that it is widely prescribed by general practitioners for non-specific indications. Further evidence suggests the need to rationalise the use of vitamin be 12 in general practice.

…… The aims of the study were (1) To examine the present use of vitamin B12 in our practice and (2) To achieve a more appropriate and efficient use of it.

Method
……..The medical records (FP5,6) of all the patients were then reviewed to identify reasons for the use of B12 and the extent to which diagnostic criteria were established and appropriate management and follow up undertaken. ….. The results of the initial data collection were then presented to all the partners at a practice meeting. All the doctors agreed to change to the criteria identified by the authors, the practice nurses were advised accordingly, and a follow-up collection of data was undertaken.
In all cases where changes in treatment or management or both were introduced the patients received both written and verbal explanations from the practice doctors or nurses or both.

Note that the patients are not consulted they are just dictated to. I wouldn’t mind betting that some of the GP’s and nurses were concerned at this change in treatment being imposed upon them. Note that the nurses ‘were advised accordingly’ rather than being asked their professional opinion as the frontline workers.

Setting standards

In setting standards we decided that our criteria should be explicit – that is, identified before collecting evidence of performance – and that our criteria should be appropriate for British general practice, safe, realistic, and achievable.  In arriving at our criteria we consulted three standard textbooks of medicine (Alstead, Davidson and Price), a consultant haematologist, the librarian at the Royal College of General Practitioners, and the Monthly Index of Medical Specialities.

The following standards were set;

(1) Criteria for the use of vitamin B12
(a) approved value in the treatment of pernicious anaemia only (other conditions are very rare in British general practice).
(b) May be necessary prophylacticly after surgery – four example gastrectomy, resection of the terminal ileum.

For all the good their method of ‘arriving at our criteria’ did for patients, they might just as well have consulted the butcher the baker and the candlestick maker. Note they didn’t consult a psychiatrist despite the link between low B12 and poor mental health being discovered over a hundred years ago.

This reduced regime did not make anything ‘safe’ for patients. In fact it served to  make the situation dire.

This intervention took away the GP’s chance to use deductive reasoning, to draw on experience of the past, to treat the person and not the ‘numbers’. It completely and firmly made treatment of B12 deficiency ‘one size fits all’ and woe betide anyone who does not toe the line. This is why the situation for patients still remains in a sorry state today.

As I said before PA is still thought to be the primary culprit here, other causes of B12 deficiency such as malabsorption caused by metformin, H2 blockers, PPI’s, parasites, etc. are completely ignored due to lack of knowledge.

The prevalence of PA against other causes of B12 deficiency these days is diminished. The genetic problems associated with B12 deficiency are not widely understood amongst health professionals despite their effect on a huge percentage of the population.

(2) Diagnostic criteria for pernicious anaemiathere must be
laboratory evidence of
(a) macrocytic anaemia;
(b) a low serum concentration of vitamin B12 with a normal folate concentration;
(c) a reticulocyte response to B12 treatment.

• All the criteria is based on blood values. We know that macrocytosis is a very, very late stage of B12 deficiency and that severely deficient patients may not present with this sign, the administration of folic acid also masks macrocytosis by normalising the size of the blood cells. Some GP’s still adhere to this criteria and NICE Guidelines bizarrely reinforce it for patients diagnosed with CFS and ME too. Quite ridiculous.

• Why on earth would any one with half a brain think that a high or a low folate concentration negates the need for B12 when the serum B12 level is low?

• We also know that the serum B12 test is inaccurate and cannot tell us what is happening at a cellular level. Using a serum B12 test in a patient on B12 injections to confirm ‘B12 levels are replete’ is incorrect, but it happens. Too many patients have their injections stopped because the doctor thinks they are cured once serum levels are above the low reference range. Unless the cause of B12 deficiency is temporary i.e. parasitic infestation which has been eradicated then treatment will be for life.

(3) Treatment and management Criteria – The optimum dosage is 1000 µg at intervals of eight weeks.

We need frequent B12 in order to keep brain and body healthy. For many patients today this frequency however, would be a miracle.

Results – (Be warned this is a tiny study!)
• 31 patients were in the study, 21 were women, 19 of them were over 65 years old.
• 22 patients (73%) were being treated for PA
• 5 were being treated post surgery.
• 1 for multiple sclerosis
• 2 for diabetes mellitus
• 1 for ‘no discernible reason’

In the interval between the two data collection dates 11 patients had died or left the practice, this included both patients with diabetes.

I wonder what these patients had recorded as cause of death? Of course we can’t know if this imposed reduced frequency had any impact however the word ‘pernicious’ springs to mind.

Vitamin B12 injections had been stopped for the patient with no discernible indications but the person with MS continued to have injections as she had become dependant on them.

Oh dear. Many severely deficient patients today would have ‘no discernible indications’ based on the sketchy criteria used in this survey and absolutely no comprehension of the ‘need’ of the MS patient, rather that she is ‘dependant on them’!

‘In all, in 17 patients injection frequency changed between the two surveys. 

Discussion

We make no claim to have identified definitive an immutable criteria for the use of vitamin B12 in general practice. We believe, however, that the standards that we set for ourselves are not only realistic and achievable but also reasonably reflect the current state of knowledge. We could discover no evidence to suggest that vitamin B12 having effective therapeutic role be on the correction of a specific or potential vitamin B12 deficiency state.

They certainly expected this criteria to be immutable though! The ‘current sate of knowledge‘ has moved on in 30 odd years and yet B12 ‘maintenance dose’ has since worsened.

…. A substantial and necessary reduction in the high number of injections of B12 administered to the patient was also brought about. The average number of injections per patient per year was almost halved 12.7-6.9 by greatly increasing the proportion of patients receiving injections at two monthly intervals 13%-84% the resulting savings in the cost of drugs and syringes, for example, are self evident and enabled nursing staff to devote the time saved to more important activities such as routine monitoring of patients blood pressures.

So this audit achieved its goal, life saving B12 injections were cut, at this point, from monthly to one injection every two months. They saved some cash on syringes and the nurses got to do ‘more important activities‘  – they did routine monitoring of blood pressure. Now I am no medic and although I know that monitoring blood pressure has its merit, but if we were to ask the simple question of ANYONE –‘What’s more important, is it (a) a routine blood pressure check or (b) a life saving injection? I think we can safely say the overwhelming answer would be (b).

In changing the frequency of the patient’s treatment regimens and we were conscious that we were disturbing what for many had become a regular part of their lives, often over many years. We had previously agreed that if any patient show distress at the prospect their current regimen should be continued. In the event no problems were encountered and no increase in consultation rates and ensued. This may have been due to the detailed explanations given to the patients, who were also reassured that no recorded instances of relapse had occurred in a two monthly schedule of injections.

‘No problems were encountered’ – ‘detailed explanations given to the patient’  I’d love to know what these detailed explanations involved. The problem is that patients don’t want to argue with doctors, they don’t want to challenge what they have been advised, they think ‘doctor knows best’.  The majority of patients may well have suffered in silence. REMEMBER there were only 20 patients alive at this point, probably barely alive and unable to cause problems!

Conclusion

… By collecting objective evidence of our use of vitamin B12 the differences between the medical care that we assumed we were providing and the care that we were actually providing we are made of this. This stimulated changes in Doctor behaviour and lead to improvements in our standards of clinical practice and patient care. Furthermore, all doctors agreed to follow the criteria identified in our future use of vitamin B12.

So the conclusion meant that the 2 monthly regime was solidified, the doctors who were previously prescribing to patient need, probably had their wrists slapped for not putting cost first. It also ‘fixed’ the terribly narrow diagnostic criteria.


Tragically this next audit published in 1985 only two years later, makes things a whole lot worse ; –

Putting money before health is a complete disgrace especially when, with a little lateral thinking, there was a perfect alternative solution to ‘the considerable source of work for the district nurse’ detailed below. Instead of teaching the patient/a family member to self treat they decided to just cut  the injection frequency and to hell with the consequences!

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1549043/pdf/bmjcred00570-0031a.pdf

Vitamin B12 injections: considerable source of work for the district nurse 

It’s title should really be ‘arbitrary rationing of B12 injections’.

Abstract

Between June and September 1984, district nurses who worked in Coventry were asked to submit returns giving details of the patients for whom they administered vitamin B12 injections. Of 492 patients identified, 382 (78%) were receiving injections more frequently than the recommended three monthly dose of hydroxocobalamin. And extra 3751 injections were being administered a year. Four hundred and thirty (88%) of these patients have conditions for which the drug is a proven benefit, so the increased frequency of injections accounts for most of the observed excess. A total of 200o hours a year district nurse time is spent with these patients. The nursing services under increasing strain. Changes in vitamin B12 prescribing alone could make between 600 and 1470 hours available for other patient needs.

In the main this audit is trying to address the move from administration of monthly cyanocobalamin to three monthly hydroxocobalamin. Again there appears to be no clinical evidence for such bold statements.

This audit also uses the same flawed diagnostic criteria used in the Leicester study.

Introduction

…..Only a three monthly dose is needed.” It is therefore more convenient for the patient and cheaper by dosage regimen and in the time required of nursing staff to administer injections.

So now, just two years later we have moved to 3 monthly injections – WHY?!

In order to arrive at these treatment regimes you’d think they would have asked and recorded how hundreds of patients felt on this frankly, woefully inadequate level of B12 supplementation, but they didn’t.

Where exactly is the patient centred, solid, qualitative, peer-reviewed research from back when this ridiculously illogical idea originated? NOWHERE.

There is no proof that ‘optimal treatment’ for all UK patient’s is four B12 injections per year and there never will be. FACT.

This study below, published in 1967 carried out trials to determine how long cyanocobalamin and hydroxocobalamin B12 injections lasted before excretion in urine but you can see from their summary that it would be unreliable to assume that one size fits all.

Patient Variation in Pernicious Anaemia, as Shown in a Clinical Trial of Cyanocobalamin, Hydroxocobalamin and Cyanocobalamin–Zinc Tannate
http://onlinelibrary.wiley.com/doi/10.1111/j.1365-2141.1967.tb08734.x/abstract

 Variation between patients makes it impossible to anticipate the duration of effect of a single injection of one of these drugs in any patient.

B12 is a complex vitamin, it does amazing work in the body, but it can’t miraculously eek itself out over 3 months, it is excreted quickly as is the nature of all water soluble vitamins. This fact doesn’t change just because someone, somewhere wrote down that we only need four injections a year in an attempt to try to balance the books.

Psychological dependence is often mentioned as a reason for more frequent dosage. Fraser et al, however, reported no resistance by patients to reducing the frequency of their injections. Careful explanation was sufficient reassurance that there would be no untoward effects.

How patronising to dictate such a thing to patients. ‘Placebo’ or ‘somataform‘ are words often used when trying to persuade a patient that they have no need for B12 injections despite the fact they can’t walk or think or breathe without them.

Pressure on district nursing services in Coventry means that there is rationing by decreasing the time available to each patient and by longer patient waiting times. Optimising treatment should be a more acceptable means of rationing.

The word rationing tells us what is really going on here

Even if treatment for such conditions was given “ideally” the saving would be roughly only 18 hours per nurse a year. This is a small absolute amount for an initially understaffed group who cope with an expanding elderly population as well as the consequences of changes in hospital practice. Allied to other improvements in the use of the district nurse’s time it might contribute to appreciable savings.

Money Money Money.

This last paragraph was clearly not kept in mind when decisions on cost saving were made;

District nurses are respected and trusted members of the community health services. Their role in supporting elderly people in their own homes and in preventing handicap is largely undervalued -and unmeasured. Overall, costs for the population of patients in this study are about £18,000 a year. For patients with proven indications for vitamin B12 supplements this represents roughly £42 a year each. In times of high technology medicine and economic appraisal of health care this is a small cost indeed “to save a life.

Remember – they state ‘proven indications’- based on flawed criteria used but the authors here know that B12 injections save lives. The fact is that the frequency of one injection every three months means that the quality of life for many patients is considerably compromised by gross under treatment.

These audits and no doubt countless associated studies, have encouraged GP’s to reduce the number of B12 injections and in some cases stop them altogether. This is harmful, but they think IT SAVES MONEY. Only it doesn’t really does it?

These patients who do not fit the criteria but who remain undiagnosed B12 deficient patients become very expensive for the NHS to look after. Without B12 supplementation, their deterioration may have meant and still means that they would be subjected to countless pricey investigations, scans and procedures, visits to psychiatrists, neurologists, gastroenterologists, and other ologists.

These audits NEVER advise that they will monitor and record the effect on the patient by asking how they feel – only that they may look at blood levels annually, odd isn’t it?

There may well be some patients who feel they do fine on 4 injections per year (or don’t want to say otherwise) – however those patients don’t write to me or join support groups. The point is we are all different. ONE SIZE FITS ALL cannot ever be possible in this situation?


A further nail in the coffin came in another later audit carried out in Leicestershire in 1995.

The message is clear – ‘you are giving too many patients B12 too often. Stop the patients who you don’t think need B12 from having it and those that may need it make them wait a few more weeks. If they whine give them some but tell them they don’t need it, it’s just that they have become dependent upon it’. In a nutshell this is how all the audits worked. They have successfully saved money and harmed patients with no basis of clinical evidence.

http://www.bmj.com/content/311/6996/28

General Practice
Use of vitamin B-12 in Leicestershire practices: a single topic audit led by a medical audit advisory group

I have highlighted key points below but to read full text please use the link above.

Abstract Objectives: To encourage active participation of Leicestershire general practitioners and their staff in audit; to examine the use of vitamin B-12 injections and to achieve a more appropriate use.

Setting: All 147 Leicestershire practices.

Main outcome measures: Participation in the complete audit cycle, comparison of actual use of vitamin B-12 injections with agreed criteria of use, and assessment of improvement in use.

Results:  In total 1714 patients received B-12 injections. Appropriate use increased from 62% in phase 1 to 72% in phase 2 of the audit; there was a 32% reduction in the number of patients inappropriately receiving B-12 (521 to 352), and the proportion of patients receiving B-12 at the correct frequency rose from 58% to 72%.

Conclusion: Our study suggests that single topic audits organised by a medical audit advisory group can encourage large numbers of general practitioners to participate and can bring about changes in behaviour resulting in improvements in standards of care…..

The specific aims were, firstly, to examine the use of vitamin B12 injections in all the Leicestershire practices; and, secondly, to achieve more appropriate and efficient use.

Criteria for treatment and management

• Optimum maintenance dose is 1000 µg at intervals of 12 weeks

• Follow-up annual blood count is required to avoid relapse

You see the obsession with blood values and yet no instruction to listen to patients, some of whom relapse only a matter of days post injection.

Results

…..There was a 32% reduction in the number of patients receiving B12 for non-valid reasons (from 521 to 352). 

….. This study is the most extensive assessment of the use of vitamin B12 in general practice yet reported. It has confirmed the findings are previously that B12 is still used inappropriately.

Nevertheless involvement in the audit stimulate a considerable change in behaviour among participating doctors, leading to subsequent improvement in their use of vitamin B12. For example the use of vitamin B12 for correct reasons improved by 10% (62% in phase 1 to 72% In phase 2) resulting in a 32% reduction in the number of patients inappropriately receiving it (521 to 352). Indeed some practices achieve dramatic change: One practice reduced the number of patients on B12 injections from 53 to just two…..

The proportion of patients receiving B12 injections at the correct frequency also increased by 14% (58% to 72%), which resulted in fewer patients receiving unnecessary injections.

Conclusion

……….It also provides further evidence that participation in audit can bring about change in clinical behaviour leading to improvements in standards of care

I am sure that your average B12 deficient patient wholly disagrees with this conclusion.
You will see that the British audits mentioned above reach and infect other countries……

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1230464/pdf/cmaj_161_2_146.pdf

Use of vitamin B12 injections among elderly patients by primary care practitioners in Ontario

 “although therapy for vitamin B12 deficiency prevents serious morbidity clinical audits in Britain have shown that approximately half of the patients receiving regular vitamin B12 injections do not meet explicit criteria supporting its use and up to one fifth of patients receive unnecessarily frequent injections. “
The situation is totally unacceptable and yet the solution is so easy;
• We need to be listened to and treated based upon our individual need without any  fear of the GP being penalised.
• Those who want to, should be taught to self inject saving time in the practice.

• Our GP’s need to get behind the B12 OTC petition so we can manage our own condition properly removing the cost burden to practices.

If you think you may be B12 deficient please see this page; http://www.b12deficiency.info/what-to-do-next/

If you want to learn more about B12 deficiency as a patient or a healthcare professional please consider attending our conference and hear the truth about B12 deficiency from both medical experts and patient experts.

When rich charities deliberately back the wrong horse, something fishy must be going on….

Do you donate to the Alzheimer’s society?

Has B12 and folate helped your declining memory like it did mine?

Not all of us have these particular symptoms. Those of us who do and have B12 injections and correct folate supplementation regularly enough to help repair the nerves of brain, are proof of the fact that our cognitive decline has halted with this inexpensive treatment.

We as patients are largely ignored on this issue, and so are the scientists who report the same.

Read what Jerome Burne has to say on this issue ;

http://healthinsightuk.org/2015/08/06/policy-on-alzheimers-sure-we-want-a-cure-just-so-long-as-its-not-cheap/

‘Do you believe there is a new drug for Alzheimer’s just over the horizon? That there is no truth in the popular idea that B vitamins might cut your risk of getting this dreadful disease?

Well you are wrong on both counts but it’s not your fault, you’ve quite reasonably fallen for some very sophisticated marketing. Let me explain.

You will be amazed at how tiny the benefit a drug needs to have to be hailed as a breakthrough and how ruthlessly a smokescreen of shoddy trials can be used to obscure the truth about the potential benefits of B vitamins.

This is not biased ignorant pharma bashing; it’s a reasonable conclusion from what has been happening. For instance, compare the enthusiastic way a new drug is greeted, with the low key response to research showing that cheap vitamins might do the job.’

….and what Margaret McCartney has to say; http://www.bmj.com/content/351/bmj.h4064

This is no breakthrough. How did this paper score such extraordinary publicity?’

If you want to learn the truth about B12 deficiency please consider joining us at the conference; http://www.b12deficiency.info/conference-2016/

A couple of research papers for you too;

Cognitive impairment and vitamin B12: a review.
http://www.ncbi.nlm.nih.gov/pubmed/22221769

Relationship of cognitive function with B vitamin status, homocysteine, and tissue factor pathway inhibitor in cognitively impaired elderly: a cross-sectional survey.
http://www.ncbi.nlm.nih.gov/pubmed/23042212

A very bright light at the end of a very long tunnel – Letter 7

The letters page http://www.b12deficiency.info/letters/ is full of examples of poor understanding of B12 deficiency…. but letter 7 is very different!!

If you are struggling to gain access to correct treatment and you have similar problems to this patient, maybe your GP or haematologist could benefit from reading this, frankly, amazingly supportive letter?

‘…….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.’

 

Many of us have problems with accessing correct treatment. Many of us try desperately to raise awareness of B12 deficiency.

If you want to learn more and know of others who do too, please share the conference information with them – http://www.b12deficiency.info/conference-2016/

Letter 7 Haem-letter-1200

Please note; This letter came to me fully redacted so I have no idea who wrote this letter or which NHS Trust they work for.

B12deficiency.info 2016 Conference 17th and 18th June – Education for all, B12, methylation and thyroid.

I am delighted to announce our second event and Sally Pacholok will be with us again!

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The conference will attempt to address the gaps in the diagnosing and understanding of these conditions and the effects on both physical and mental health.

Please note: This is NOT a two day conference, an identical programme will run each day.

Ticket price £62.00
Includes: Presentations, lunch, refreshments, attendance certificate for CPD and free on site parking.


This conference is for all with an interest in the subjects both personally and professionally.

If you are a patient you will learn more about your condition. If you work with people in any field of mental or physical health then this conference will provide high clinical relevance and an attendance certificate for CPD.

It has been arranged by Tracey Witty of www.b12deficiency.info to promote greater awareness and understanding of B12 deficiency, methylation and thyroid disease.

PLEASE NOTE: There is no sponsorship from, nor affiliations to pharmaceutical or vitamin companies at this event (or throughout www.b12deficiency.info).

The speakers are highly knowledgeable, experienced and engaging. They will discuss the multi-systemic and polyglandular nature of the conditions, diagnosis and misdiagnosis.

Q&A time with the speakers is scheduled.

In addition to our speakers we will hear from three patients who will present their own case studies.

Last years attendees said; – Thanks for organising the excellent conference, the speakers were all very engaging and enthusiastic. I don’t think I have ever been at a conference that so many people stayed until the end, especially on a Saturday!

– I am an acupuncturist and during the conference I realised that my training in B12 deficiency was woefully inadequate. Knowing so much more about B12 and methylation has completely changed my practice!

Meet the Speakers

Sally Pacholok RN BSN
Presentation on –
The effect of B12 deficiency on all body systems. Symptoms, causes, those at risk and common misdiagnoses.

Sally was a licensed Advanced Emergency Medical Technician and worked as a paramedic prior to and during nursing school.

In 1985 aged 22, Sally diagnosed herself with vitamin B12 deficiency, after her doctors had failed to identify her condition. Over the past two decades, she has frequently found untreated B12 deficiency in the patients she cares for and has campaigned to raise awareness of this all too common debilitating neurological condition.

During her presentation Sally will be using case studies to show how b12 deficiency affects people of all ages, including babies and children. She will also be reviewing the pathophysiology, signs, symptoms, risk factors, causes, diagnosis, differential diagnosis and treatment.

Sally’s book inspired Emmy winning film producer Elissa Leonard to produce a documentary on misdiagnosed B12 deficiency in 2011 click to watch. Elissa then went on to produce a feature film based on Sally’s life click to watch.

Anne Pemberton
Functional Medicine Practitioner MSc, PGCE (Autism), RGN.
Presentation on –
Genetic Polymorphisms in Chronic fatigue and Autism: Supporting the role of B12 and Folate and their connection to HPU (Kryptopyrroles).
 

Anne spent the first 25 years of her working life as a registered nurse in cardiac intensive care. Her son’s diagnosis of autism and the lack of medical help was the catalyst for Anne’s decision to retrain as a functional medicine practitioner.

Anne is now the Course Director on the MSc in Nutritional Therapy at the Northern College of Acupuncture in York. She also runs a busy international clinic, with special interest in CFS (chronic fatigue syndrome) and autism.

Anne uses nutrigenomics data from 23andme.com alongside appropriate functional testing, in order to establish each person’s individual health requirements. She has co-written the first UK based practitioner nutrigenomics course in the UK which is delivered twice yearly in York and London. Anne has also co-authored a book with Dr Damien Downing ‘The vitamin Cure for Digestive Disease’.

Dr. Afshan Ahmad BSc, PhD.
Presentation on –
The effect of thyroid replacement in patients with ‘normal’ thyroid chemistry and clinical signs and symptoms of hypothyroidism.

Development for Vaccine Research Trust, a charity established in 1982 which supports research into why a group of people present with signs and symptoms of hypothyroidism but continue to have blood tests within the reference range. She co-founded Vaccine Research International Plc and helped Dr Gordon Skinner in his thyroid clinic in Birmingham, working closely with him in his dealings with the GMC. In 2000, they published a paper on the effect of thyroid replacement in patients with ‘normal’ thyroid chemistry and clinical signs and symptoms of hypothyroidism.

Afshan qualified with a BSc degree in Immunology and Microbiology from London University in 1983 and joined Dr Gordon Skinner’s vaccine research group at the Medical School, University of Birmingham in 1985, she completed her PhD in Medical Microbiology in 1999.

Dr Joanne Younge
Associate Specialist Old Age Psychiatrist.
Presentation on –
Audit on B12 and folate deficiency in the elderly.

Joanne graduated from Queen’s University, Belfast, in 1996 and is an Associate Specialist Old Age Psychiatrist in an NHS Trust.

Joanne is a Cognitive Behaviour Therapy (CBT) Clinical Lecturer at Queen’s University in Northern Ireland. Her main interest is improving care for patients, either through quality improvement initiatives, using Institute for Healthcare Improvement methodology, or audit.

She co-authored ‘CBT for mild to moderate depression and anxiety’ in 2014 and an audit on improving patient safety, ‘The impact of introducing a Lithium care pathway’, was published as an example of shared learning on the National Institute of Health and Care Excellence (NICE) website in 2015.

The introduction of an electronic care record, with better access to blood results, and improved insight into the potential impact of deficiencies prompted an audit into B12 and folate deficiency in the elderly patients referred to the local service. She is hopeful that the audit, presented at the conference, will have an impact on improving patient care in the future.

_______________________________________________________

To book your place click here

To read more please visit the conference page.

I look forward to seeing you there!

Tracey

If you have CFS or M.E. you may be enraged if your B12 levels haven’t been tested ….

I have blogged about this before but it is worth revisiting because it is so shocking.

First of all please note, that if you have CFS or M.E., then your symptoms are also shared by B12 deficient patients. B12 deficiency symptoms can be reversed with B12 injections.

Secondly, the reason you may never have been tested for B12 deficiency may be because your doctor does not understand that macrocytosis/macrocytic anaemia (large red blood cells) is NOT ALWAYS PRESENT in B12 deficiency. In fact it can be very late stage when damage has already been done. This obsession with marcrocytosis is the focus of these harmful instructions to doctors.

The following screen shots are of NICE Guidelines – ‘Do not do recommendations’ for CFS/M.E.  It is a really tricky page to find (and has a habit of hiding) so here is the link;

https://www.nice.org.uk/donotdo/tests-for-vitamin-b12-deficiency-should-not-be-carried-out-unless-a-full-blood-count-and-mean-cell-volume-show-a-macrocytosis

For those who don’t know :-
NICE’s role is to improve outcomes for people using the NHS and other public health and social care services. We do this by:

  • Producing evidence based guidance and advice for health, public health and social care practitioners.

Taken from; https://www.nice.org.uk/about/what-we-do

There are other bullet point’s on this page but here they state ‘evidence based guidance ‘. I’d like to know what evidence backs up this particular set of DO NOT DO RECOMMENDATIONS for CFS and M.E. patients. I bet you would too.

There are many scenarios on this list which may be of interest to you but I am concentrating on the four which are connected to B12 deficiency. The date of all these recommendations is August 2007.

The first reads – Test for vitamin be 12 deficiency should not be carried out unless a full blood count and mean cell volume show a macrocytosis.


Screen Shot 2015-10-14 at 10.06.47

The second; Tests for folate levels should not be carried out unless a full blood count and mean cell volume show and macrocytosis.

Screen Shot 2015-10-14 at 09.59.49

No 3;  Tests for ferritin in adults should not be carried out unless a full blood count and other haematological indices suggest iron deficiency.

Screen Shot 2015-10-14 at 09.59.36

And finally; There is insufficient evidence for the use of supplements such as vitamin B12, vitamin C, coenzyme Q10, magnesium NADH (nicotinamide adenine dinucleotide) or multivitamins and minerals for people with chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME), and therefore they should not be prescribed for treating the symptoms of the condition. However, some people with CFS/ME  have reported finding this helpful as part of a self management strategy for their symptoms.

Screen Shot 2015-10-14 at 09.59.22

Sinister?

Many clinicians incorrectly believe that B12 deficiency always goes hand in hand with anaemia. This ignorance is reinforced by NICE Guidelines despite the wealth of journals stating the opposite.

You will see that all the symptoms of CFS and ME are also those of B12 deficiency http://www.b12deficiency.info/signs-and-symptoms/

This misunderstanding causes patients harm. Many patient’s never present with or experience macrocytosis (large red blood cells).

It may be a very late sign in B12 deficiency and the MCV can appear normal in a patient taking high doses of folic acid. How many B12 deficient pregnant women remain undiagnosed?

See here from the NHS;

http://www.nhs.uk/conditions/anaemia-vitamin-b12-and-folate-deficiency/pages/introduction.aspx
‘Some of these problems can also occur if you have a deficiency in vitamin B12 or folate, but do not have anaemia.’

 There are many journals on this;

2012. Misdiagnosed vitamin B12 deficiency a challenge to be confronted by use of modern screening markers
(….”but its absence does not rule out B12 deficiency and it is not a specific marker as using it solely would miss 84 percent cases. Its normal range is 80-96 fl.20 MCV can be within normal range despite B12 deficiency specially with concomitant iron deficiency,….)
http://www.jpma.org.pk/full_article_text.php?article_id=3808

1995. Neurological complications of acquired cobalamin deficiency: clinical aspects.(“Pharmacological doses of folic acid reverse the haematological abnormalities (eg a MCV) of Cbl deficiency. This may allow neuropathy to develop or progress and make recognition of deficiency more difficult. “)
http://www.ncbi.nlm.nih.gov/pubmed/8534966?dopt=Abstract

To read more of these journals – or, perhaps we could call them EVIDENCE, please click to see the information compiled by @B12unme
http://www.twitlonger.com/show/n_1s0ae7m

If you have been diagnosed with fibromyalgia too, you may be very interested in this study which uses B12 and folate as treatment; ‘Dose-response relationship and long-lasting effects of B12/folic acid support a true positive response in the studied group of patients with ME/fibromyalgia.’
http://www.plosone.org/article/fetchObject.action?uri=info%3Adoi%2F10.1371%2Fjournal.pone.0124648&representation=PDF

If you have never been tested and suspect a B12 deficiency please see; http://www.b12deficiency.info/what-to-do-next/

Raising awareness; http://www.b12deficiency.info/how-you-can-help/

Please consider signing and sharing this petition https://www.change.org/p/ian-hudson-please-make-our-life-saving-injectable-vitamin-b12-hydroxocobalamin-available-over-the-counter?

 

Many B12 deficient patients would prefer ‘a dogs life’ when it comes to treatment

dooby-b12-text-version

Vets have a greater knowledge of B12 deficiency than the average GP.

Jasper wouldn’t be misdiagnosed with fibromyalgia, CFS, MS, or bipolar (etc), in place of B12 deficiency.

He would not be given antidepressants for B12 deficiency induced depression.

He wouldn’t be considered to be a lazy hypochondriac.

He would have all of his symptoms taken into account and his improvement would be monitored.

He would not have to cry and plead for his B12 injections, or involve his MP. Shouldn’t humans be treated with the same level of respect and care?

I continue to work hard on the petition and I need some help please;-If you have written to your MP about your deficiency or the OTC petition https://www.change.org/p/ian-hudson-please-make-our-life-saving-injectable-vitamin-b12-hydroxocobalamin-available-over-the-counter?

please could you let me know their name in order that we can get all our MP’s to work together.

My MP has promised to help all she can, but there is strength in numbers so please get in touch either at;

www.facebook.com/b12deficiency.info?fref=nf
or tracey@b12deficiency.info.For more info/research see below;-http://vetmed.tamu.edu/gilab/research/cobalamin-informationhttp://www.ncbi.nlm.nih.gov/pubmed/23535754/
J Am Anim Hosp Assoc. 2013 May-Jun;49(3):197-203. doi: 10.5326/JAAHA-MS-5867. Epub 2013 Mar 27. Clinical and laboratory findings in border collies with presumed hereditary juvenile cobalamin deficiency.
Lutz S1, Sewell AC, Reusch CE, Kook PH.http://www.ncbi.nlm.nih.gov/pubmed/1848001
Pediatr Res. 1991 Jan;29(1):24-31.
Inherited selective intestinal cobalamin malabsorption and cobalamin deficiency in dogs.
Fyfe JC1, Giger U, Hall CA, Jezyk PF, Klumpp SA, Levine JS, Patterson DF.

Reply to my email request for information;-

Dear Tracey,

Thank you for your email question. As you know our understanding of the role of vitamin B12 in dogs is far from complete, but there are several clinical diseases in which we know deficiency may occur. During our undergraduate Course, students will be taught about vitamin B12 in several modules eg nutrition and gastroenterology, as well as on clinical rotations when they see cases in practice.

If deficiency is present recommendations for dose rates vary but usually weekly injections are given for several weeks.

I hope this is helpful

BVetMed CertVR CertSAO FRCVS
Associate Professor in Small Animal Clinical Practice

B12 deficiency can strike at any age, it is not confined to women over 60

 

b12-child-port

Signs & symptoms in infants and children
(List supplied by Sally M Pacholok R.N & Dr Jeffrey Stuart co authors of ‘What’s wrong with my child?’

• Developmental delay or regression
• Apathy – Irritability
• Hypotonia (decreased muscle tone)
• Weakness
• Tremor
• Involuntary movements
• Seizures (fits)
• Ataxia (Neurological disorder affecting balance, coordination and speech)
• Anorexia and other eating disorders
• Failure to thrive
• Poor weight gain
• Poor head growth
• Poor socialisation
• Poor motor skills
• Language delay
• Speech problems
• Lower IQ – Mental retardation
• Anaemia
• Macrocytosis (large red blood cells) Note – need not be present!

 

For more information on ‘Red Flags‘ in children please visit

www.b12deficiency.info/children-and-b12/

 

b12-child-land

 

Please see our posters page to share, download and print these posters.

Raising awareness ; http://www.b12deficiency.info/how-you-can-help/

Go away and die quietly, we’re busy

It is rare that I am lost for words – however, I expect after reading this, you might be struggling too.
The below text is a summary of a patient’s experience just last month. I am paraphrasing but the message is very clear. The quality of life of B12 deficient patients, at least to some doctors, simply doesn’t matter. Their pleading for help falls on deaf ears at this practice.

Are you sitting comfortably?  Here we go –

We had a meeting about treating your ‘normal’ serum B12 level of 334 with B12 injections but have decided that even though you tested positive to parietal cell antibodies years ago, that you are;

HEAVILY SYMPTOMATIC and can demonstrate that your;

7 cardiac arrests, 
One major heart attack, 
Pulmonary embolism, 
Over TEN lengthy stays in psychiatric hospital with added ECT treatment, 
A lifetime of complete exhaustion, 
Diagnoses of PND, CFS, fibromyalgia, ADHD, bipolar disorder, and, wait for it, – ‘Treatment resistant depression’ could all be directly related to B12 deficiency –

WE CANNOT POSSIBLY TREAT YOU WITH A HARMLESS, LIFE GIVING VITAMIN B12 INJECTION THAT YOU DESPERATELY NEED. 

We have decided that although we prescribe many chemical ’off license’ drugs to hundreds of people, including you, at this practice (and mainly to those patients with poor mental health), without batting an eyelid, that we cannot prescribe B12 injections to you because it would be considered to be ’OFF LICENSE’ and we might get slapped wrists.

We as a practice, are all sticking together in this so you have NOWHERE to go even though you have shown us there could be great risk to your health without B12.

We have completely ignored the NEQAS report you gave to us; 

http://www.ukneqas-haematinics.org.uk/content/News.asp?id=46
False normal B12 results and the risk of neurological damage (Please click for details)
“In the event of any discordance between clinical findings of B12 deficiency and a normal B12 laboratory result, then treatment should not be delayed. Clinical findings might include possible pernicious anaemia or neuropathy including subacute combined degeneration of the cord. We recommend storing serum for further analysis including MMA, or holotranscobalamin and intrinsic factor antibody analysis, and treating the patient immediately with parenteral B12 treatment.”

We have ignored the all the journals backing up your research.

We have also ignored the NHS website stating that many B12 deficient patients have within range results due to the inaccuracy of the serum B12 test;

http://www.nhs.uk/Conditions/Anaemia-vitamin-B12-and-folate-deficiency/Pages/Diagnosis.aspx
‘A particular drawback of testing vitamin B12 levels is that the current widely-used blood test only measures the total amount of vitamin B12 in your blood. This means it measures forms of vitamin B12 that are “active” and can be used by your body, as well as the “inactive” forms, which can’t. If a significant amount of the vitamin B12 in your blood is “inactive”, a blood test may show that you have normal B12 levels, even though your body cannot use much of it. There are some types of blood test that may help determine if the vitamin B12 in your blood can be used by your body, but these are not yet widely available.’

Instead of giving you HARMLESS, LIFE GIVING, B12 injections, we would rather you continue to take the countless, expensive and harmful drugs which we are completely happy to prescribe for you, despite your protestations that they don’t work. 

We are also completely happy with the labels we have given you, despite them being common misdiagnoses of vitamin B12 deficiency. 

We are rigid, we cannot muster any compassion or understanding and won’t do our own research, we simply can’t be bothered. We don’t care that you merely exist, have been chronically ill for decades and live less than half a life.

We do hope you understand our position? 

Now, can you run along and stop wasting our time? We are very busy and very important GP’s. We have lives to save, don’t cha know?
_____________________________________________________________________

Well what the hell do you do with that??

This patient is someone I know. I went to one shocking appointment with them.

I am completely astounded that this patient has the capacity to continue with life despite the trauma, pain and neglect they continue to endure.
This patient deserves care, compassion, understanding and B12, and quite frankly, a bloody medal!

During the appointment I attended, we challenged the GP when it was stated that for this patient, B12 injections would be ‘Off License’, but there was no budging this unfeeling, uncaring, unknowing, cardboard cut out.

Can anyone enlighten me as to why or how b12 injections can be considered ‘off license’ for a heavily symptomatic B12 deficient patient?

Can anyone from the medical profession explain why exactly, patients have to jump through hoops to achieve a diagnosis of vitamin B12 deficiency? The current rationale almost completely ignores symptoms and decides everything on a blood test which is proven to be inaccurate.

Why is it that other conditions have no diagnostic blood test and yet the GP and specialist are completely confident in diagnosing based upon symptoms alone?

How can any clinician feel comfortable diagnosing ‘lab test free’ conditions such as Fibromyalgia, bipolar, schizophrenia, CFS, ME, Parkinson’s and Alzheimer’s etc, without fully and I mean FULLY, ruling out vitamin and mineral deficiencies? It just doesn’t make any sense.

There is something gravely wrong here and this horrendous, cockeyed situation has to come to an end soon, surely?

Although some of us have GP’s who treat us well for B12 deficiency, the shocking case detailed here is not isolated and is a tale to be continued……..

 

If you too are fighting complete ignorance please find support here;
https://www.facebook.com/groups/174928999276739

If you think you may be deficient please use this page;
http://www.b12deficiency.info/what-to-do-next/

If you want to help us to cut out the middle men who don’t, or won’t care – please sign and share and shout about this petition to help us treat ourselves –

https://www.change.org/p/ian-hudson-please-make-our-life-saving-injectable-vitamin-b12-hydroxocobalamin-available-over-the-counter?

Raising awareness; http://www.b12deficiency.info/how-you-can-help/

See below for more information on the common use of ’unlicensed medicines’.  A particular worry is that Metformin is being used for the treatment of urticaria as well as PCOS. I wonder if these prescribers are checking their patient’s B12 levels since this drug drags them down by stopping B12 absorption from food? I bet they’re not.

http://www.nhs.uk/Conditions/Polycystic-ovarian-syndrome/Pages/Treatment.aspx

Metformin isn’t licensed for treating PCOS in the UK, but because many women with PCOS have insulin resistance, it can be used “off-label” to encourage fertility and control the symptoms of PCOS.

http://www.ipswichandeastsuffolkccg.nhs.uk/Portals/1/Content/Members%20Area/Clinical%20Area/Medicine%20managment/Drugs%20and%20Therapeutics%20Advisory%20Group/Share%20care%20agreements/Valprorate.pdf

Preparations available and licensed indications
Valproate is available in the UK as sodium valproate (Epilim), licensed for epilepsy and semisodium valproate (Depakote), licensed for the acute treatment of mania.
Even though, neither formulation of valproate is licensed for use as a mood stabiliser, there is a significant body of evidence supporting its use.

B12-life-web

Dennis Skinner MP for Bolsover has signed the B12 OTC petition!! Will your MP do the same?

B12-life-web
Just in case you don’t receive the update for the petition, see below;
After a call out to B12 deficient patients to sign and share this petition (https://www.change.org/p/ian-hudson-please-make-our-life-saving-injectable-vitamin-b12-hydroxocobalamin-available-over-the-counter?)to get us over the 10,000 signature threshold I am delighted that we have 11,341 supporters as I write this update.
Huge thanks to each and every one of you!
Your sharing of this petition does a fantastic job of raising awareness of B12 deficiency every day.
Steph Whiting, a B12 deficient patient struggling to access B12 injections, sent the petition link to her MP, Dennis Skinner. Dennis was completely unaware of this very common condition and the awful predicament of under treatment that UK patients face, so he signed to show his support.
I badger my local MP and MEP regularly, but more help is needed and if UK and international supporters could take the time to email or tweet we can really make a difference in moving this campaign forward!
May I suggest Tweeters use the following;
@DennisSkinnerMP has signed this injectable B12 OTC petition http://chn.ge/1phNgE6, will you? #B12 OTC petition
Please target at the very least, the MP’s listed below via Twitter. (Twitter names listed below for your convenience).
David Cameron – Prime Minister
Jeremy Hunt – Secretary of State for Health
Jeremy Corbyn – Leader of the Labour Party
Jane Ellison  – Parliamentary Under-Secretary (Department of Health)
Luciana Berger MP – Shadow Minister for (mental Health)
UK Tweeters, please add your local MP and MEP to this list too.
You can find your MP’s contact details by using this tool;
and your MEP contact details here;- http://www.europarl.org.uk/en/your-meps.html
@jeremy_hunt
@david_cameron
@jeremycorbyn
@janeellisonmp
@lucianaberger
Please consider emailing too – there is a template at the bottom if you wish to use it,  please add your own experience/reasons for asking for support. You may care for someone who is B12 deficient so this may need re wording for your particular situation.
UK supporters please contact all the above and your own MP and MEP
Please email;
Jeremy Hunt –
huntj@parliament.uk
Jeremy Corbyn –
corbynj@parliament.uk
Luciana Berger –
luciana.berger.mp@parliament.uk
Jane Ellison MP –
jane.ellison.mp@parliament.uk
David Cameron- sadly no direct email address exists publicly so there is a form to fill in here;   http://www.witneyconservatives.com/contact
UK supporters – Perhaps you could give your local MP a call too?
Lets not restrict this campaign though – tweet, email or call anyone you can think of who may help to spread the word and make this happen.
Celebrities are powerful so let’s try to get them on board too!
Finally, when you receive your email replies please consider forwarding to me at tracey@b12deficiency.info
Again, huge thanks to all 11,341 supporters – you are amazing!
Tracey witty
www.b12deficiency.info
EMAIL TEMPLATE
Dear *
Dennis Skinner MP, has signed this petition;
https://www.change.org/p/ian-hudson-please-make-our-life-saving-injectable-vitamin-b12-hydroxocobalamin-available-over-the-counter? in support of UK B12 deficient patients who are unable to buy their life saving, Injectable vitamin B12 OTC. We cannot absorb B12 from food so injections are essential for life.
Most countries around the world allow their citizens to buy this essential, harmless injectable vitamin without prescription, from pharmacies.
Due to out dated NICE Guidelines and GP’s (and other health care professionals) lack of knowledge of B12 deficiency, many patients are restricted to just four B12 injections per year, even though the body needs B12 every day! This level of treatment is clearly nowhere near enough to maintain health and consequently many patients remain mentally ill, bed bound, cognitively impaired, and unable to work or look after their children.
Please sign and show us your support;
If you have the time to watch even the first 5 minutes of this film;
You will see just how devastating the effects of B12 deficiency can be. It is an easily treated, serious neurological condition but patients are very often dismissed, neglected and labelled hypochondriacs.
Just imagine the health care savings if you can help to make this happen.
For more information on this very common neurological condition please see www.b12deficiency.info
Yours sincerely