B12 cancelled. See you in six months…… if you make it

Some might say this title is dramatic, but those who are currently denied access to B12 injections, who are panicked to within an inch of their lives with coronavirus and who now have no essential vitamin B12 treatment, would probably feel it’s a completely reasonable statement.

Being expected to cope for months on end without your safe, cheap, effective and life saving injections would be like making someone climb up Mount Everest without any shoes or coat whilst carrying a donkey on their back.

I know of no other vital life saving medicine that has been stopped during this crisis and I can’t imagine that any other group of people in the UK are being denied such an easy, quick treatment at this time.

 

 

A bleak 6 months ahead

This letter below, sent to a whole county might make the untrained eye think that it’s perfectly reasonable to stop B12 injections and give B12 tablets for six months….

Letters, emails, phone calls and texts like these are being received all over the UK, I have seen them from Lancashire, Herefordshire, Gloucestershire, Hertfordshire, Cheshire, Leicestershire, Northumberland, Tyne & Wear, Flintshire, Cardiff, Essex, Wolverhampton, Cornwall, North Yorks,  west Lothian, Midlothian, Aberdeenshire.

Here’s the text from the first paragraph;

We are writing to you on behalf of your GP in regards to your B12 injections. As from Monday, the 30th of March we will no longer be giving B12 injections to patients therefore all our future appointments have been cancelled. This is as a result of coronavirus and our aim is to protect you as well as our staff. We will restart the injections once the current measures are suspended.

Do you see the sneaky stuff in there?

What is ridiculous to B12 deficient patients is this totally incorrect and bizarre idea that we can access stores of B12. We can’t and that’s why we’re B12 deficient and why we need regular replacement, this simple fact needs to be understood.

The last bullet point is the real kicker. The uneducated clinicians will say, “you don’t have Intrinsic factor antibodies (IFA) so you don’t have pernicious anaemia (PA) and so you will stay on tablets because we decided you can now miraculously absorb B12 from food!” This ludicrous concept crops up frequently (I have blogged about it before here.) It needs repeating so often – PA is just one of many causes and they are all serious and need correct treatment.

It seems they’re going to try and say you don’t need injections by testing your serum levels after they’ve given B12 oral tablets that simply can’t replace the benefit of B12 injections. They’ll do this by saying “your serum B12 levels are high now so you must be well” whilst ignoring the fact that you’re a depressed, exhausted, broken heap on the floor.

Most of us are in a state of panic at the moment, but imagine having anxiety levels through the roof and then being told you can’t have your life-saving medication for six months because someone ignorant of your condition has decided that YOU don’t matter. Not for six months anyway.

Some people were already on their knees when their injection was cancelled because the last one they had was in December, how exactly are they supposed to function? Some of these people are key workers expected to ‘soldier on’ until they collapse, some are parents thrust into 24/7 child care whilst trying to hold onto a job or their businesses by a thread.

Bay Medical Group (For Happier Healthier people!) have added this clumsy and unhelpful Q&A to their website entitled B12 Switch to oral medication.

Tidal wave of future problems

It’s impossible to expect there to be no mental or physical health casualties among those with B12 deficiency if the only provision for them is a tablet that won’t work to heal nerves or reduce symptoms but will raise serum levels.

Many of us feel like we’re currently living inside the most bizarre film set of all time, but it is also feels a bit like a ridiculous black comedy for some with B12 deficiency.

Many of our GP’s are unaware of the mental health aspect of B12 deficiency despite depression being one of the most common symptoms.

Without B12 injections we can’t function, we can’t remember, can’t walk, can’t feel happy, can’t think, can’t hear, can’t speak properly, can’t live fully.

How are the people with returning psychosis supposed to cope? How are their loved ones expected to manage this severe symptom which is an every day reality in untreated B12 deficiency in either their child, sibling, mother or father?

We’re all told to look after our mental health during this period but these incomprehensible restrictions are making things so much worse than they need to be.

Even people without previous mental health problems are having them surface during this period of isolation. The mental health charity Sane are warning that the Coronavirus could lead to a mental health epidemic.

Cutting essential, cheap, effective treatment for thousands of people through a lack of understanding of a common condition is beyond foolish. In fact it’s a time bomb and there will be guaranteed casualties amongst B12 deficient patients who only take oral tablets during this period.

The WHO

The World Health Organisation states the following in their document Mental health and psychosocial considerations during the COVID-19 outbreak 

The following directives are appropriate for those with B12 deficiency; –

Messages for team leaders or managers in health facilities:-

16. Manage urgent mental health and neurological complaints (e.g. delirium, psychosis, severe anxiety or depression) within emergency or general healthcare facilities. Appropriate trained and qualified staff may need to be deployed to these locations when time permits, and the capacity of general healthcare staff capacity to provide mental health and psychosocial support should be increased (see the mhGAP Humanitarian Intervention Guide).

17. Ensure availability of essential, generic psychotropic medications at all levels of health care. People living with long-term mental health conditions or epileptic seizures will need uninterrupted access to their medication, and sudden discontinuation should be avoided.

Messages for older adults, people with underlying health conditions and their carers

22. Older adults, especially in isolation and those with cognitive decline/dementia, may become more anxious, angry, stressed, agitated and withdrawn during the outbreak or while in quarantine. Provide practical and emotional support through informal networks (families) and health professionals.

24. If you have an underlying health condition, make sure to have access to any medications that you are currently using. Activate your social contacts to provide you with assistance, if needed.

People who can only keep their psychosis and depression caused by B12 deficiency at bay with B12 injections should surely be considered here?

B12 (hydroxocobalamin is listed as an essential medicine by WHO (see page 19 here) but it seems this is not understood by many GP’s.

Injection discrimination 

There are often comparisons made between insulin and B12 injections and whilst everybody understands that insulin is essential and required by each patient in different amounts some health professionals mistakenly think that B12 is a placebo, a frivolous want for lazy people with hypochondria and Munchausen’s Syndrome. They also think that we all need the same measly amount regardless of our symptoms and level of damage. B12 is as important to patients as insulin is to diabetics.

Our friends and family outside of the B12 world see our predicament as bizarre, they ask us the following questions about B12 injections: –

Are they life-saving YES

Is it expensive NO

Can you overdose NO

We can ask the same of questions about insulin: –

Is it life-saving YES 

Is it expensive YES

Can you overdose YES

Can you imagine the outrage if insulin were stopped for six months?

Methotrexate, heparin and insulin are all automatically given to patients to self inject at home, but all these are medications which need strict control, in contrast B12 injections (hydroxocobalamin) cannot be overdosed.

Immediate Solutions  

B12 is essential, if you are prescribed B12 injections then it means you cannot absorb B12 from food so oral tablets won’t work.

The British Journal of Haematology state:

“The use of high dose oral cyanocobalamin is licenced for use in several countries….however the efficacy and cost-effectiveness…is yet to be established.”

 

Vital treatment should not be restricted or stopped.
We are not in a war.
There is no shortage of B12.

We of course appreciate that GP Practices are under huge pressure at the moment and that many are experiencing staff shortages but there is always a way around these problems.

Practices need to reinstate B12 injections for anyone who is well and can get to the surgery or prescribe B12 ampoules and sub cutaneous needles for people to collect from a pharmacy so that they, or someone close to them can give them their vital injection. (Sub cutaneous injections would be most sensible for patients to use and are the route most who self inject choose, myself included.)

We need our doctors to get behind this movement so that they and the Practice nurses can be freed up from giving injections to those who can inject themselves.

For the sake of the GP’s and nurses who are too busy to teach you to self inject, here are some helpful NHS guides below;

Self injection with sub cut;

https://www.qegateshead.nhs.uk/sites/default/files/users/user53/gynaeoncology/IL426%20Subcutaneous%20Self%20injection%20for%20anti-coagulation%20treatment.pdf

Link for how to break an ampoule and load syringe;

http://www.bristol.ac.uk/media-library/sites/vetscience/documents/clinical-skills/How%20to%20Open%20a%20Glass%20Vial.pdf

We need to be concerned about those people who are unable to function due to lack of B12 but who daren’t insist on treatment, those who quietly accept that their essential injection has been stopped. Our GP’s must be vigilant here and check on those at risk because they don’t want to, or feel they shouldn’t make a fuss.

Petition – Doctors, help us to get off your backs!

I’ve had numerous emails and comments detailing particular struggles with the denied access to B12 from all ages and the one solution which could make this situation better now and in the future is to make injectable B12 available over the counter from pharmacies. This would remove an enormous financial and time burden from the NHS, and GP Practices and would allow the panic to, at least partially, subside in hundreds of thousands of people in the UK.

If your doctor is on our side (I know that some are) please ask them to support this petition and share it with their colleagues.

Please consider joining the 89,000 + kind people who have already signed and shared our Petition.
(Please note: Every time you sign a change.org petition you will be asked to ‘Chip in’ money, but be warned, this money goes directly to the very wealthy change.org company and not a penny goes to the cause you might support.)

If we can get The MHRA and other NHS agencies to help us at a time where barriers are being removed then the tidal wave which is already gathering speed could be slowed.

Removing barriers

On Twitter, there’s evidence that some doctors are celebrating the fact that during this crisis, barriers that made their patient’s and their lives difficult have been removed in minutes, funding hasn’t been blocked and they can do parts of their job more easily…..

Martin Marshall (@MartinRCGP) Tweeted:

“2 emails from friends overnight saying the same thing, one a GP and local NHS leader and the other a clinical academic. They say they’ve achieve more progress in their work in the last 6 days than in the previous 6 months. People are making things happen and barriers are removed.”

Well isn’t now the time for B12 patients to get a piece of the action and have their huge barrier to good health removed?

We are living in unprecedented times but whilst all of us are in this mess together and whilst our backs are against the wall we need to see the great opportunity for change before us. Perhaps now there’s a real chance that we can get our B12 injections made available over the counter and bring us into line with other countries around the world so that we in the UK aren’t left behind.

Good Practice

It’s important for me to acknowledge that there are brilliant Practices in the UK that know their patients need their B12 injections and are either still administering them or are prescribing ampoules and equipment to make it possible for patients to self treat. (My Practice is one of these and I am so grateful, thank you Doctor B!) Anyone under the care of these good Practices will be eternally grateful for their understanding and care at this time. Many would give up their first born to be treated by you!

Take care and stay safe,

Tracey x
www.b12deficiency.info

 

Incontinence in women, men & children

One of my symptoms of B12 deficiency was bladder incontinence, I had to keep going to the loo and there was no let up during the small hours either.

Thankfully this was one of my symptoms which corrected within the first weeks of regular B12 injections. Had I not realised I was B12 deficient, I may have believed it was due to my age or my shoe size or my eye colour and perhaps even ‘perfectly normal’. Some of us have difficulty seeking help for incontinence and see it as something to ‘put up with’ rather than something that could and should be treated.

Each time I see TV adverts for companies selling incontinence pads (or those weird ‘pretty??!’ crepe britches) showing young women stating that incontinence is ‘perfectly normal’ I’ll ask the telly, “what if it’s caused by B12 deficiency?”

Apparently 1 in 3 women experience bladder leaks, this is a massive number, some of whom might potentially be in need of B12 but may be unaware of low B12 being a cause.

This report from the BBC shows that the Royal College of Nursing (RCN) has issues with these adverts. They criticised TENA for not highlighting to mothers that treatment for the condition is available.

The RCN said: “Incontinence is known to be under reported due to the embarrassment experienced by women living with the condition.

Female incontinence
As you’ll see from the information on the NHS link below, there are a few causes for bladder incontinence related to the pelvic floor muscles, and although they do list ‘neurological conditions that affect the brain and spinal cord such as Parkinson’s disease or multiple sclerosis’  –  just think how helpful it would be if they could alert people by adding B12 deficiency to this list?

  • damage during childbirth – particularly if your baby was born vaginally, rather than by caesarean section
  • increased pressure on your tummy – for example, because you are pregnant or obese
  • damage to the bladder or nearby area during surgery – such as the removal of the womb (hysterectomy), or removal of the prostate gland
  • neurological conditions that affect the brain and spinal cord, such as Parkinson’s disease or multiple sclerosis
  • certain connective tissue disorders such as Ehlers-Danlos syndrome
  • certain medicines

Male Incontinence
Men also experience incontinence and it’s no surprise that they are even worse than women for talking about it or seeking help. Naturally there are some different causes listed for males (please see below), but would it be on the radar of the GP to test for B12 deficiency even if the subject of incontinence arose at an appointment?

  • chronic cough
  • constipation
  • obesity
  • bladder or urinary tract infections
  • an obstruction in the urinary tract
  • weak pelvic floor or bladder muscles
  • loss of sphincter strength
  • nerve damage
  • enlarged prostate
  • prostate cancer
  • neurological disorders, which can interfere with bladder control signals

Other lifestyle factors that may lead to UI include:

  • smoking
  • drinking
  • not being physically active

“YOU are JUST A WOMAN!”

 

What, no loading dose?
I have been helping someone in the county of Lincolnshire to access treatment and I can say with all honesty that it is THE most difficult and frustrating case I have ever taken on.

I have been told on two separate occasions that GP’s in this area don’t give loading doses as there is “no benefit to patients“. Once by a Practice Manager and once by a female District Nurse. Both are seemingly embarrassed about having told me this apparently ‘privelidged information’ about a certain (and hopefully small) group of GP’s.

The Practice Manager now denies saying it and the District Nurse’s superiors also deny it happens and yet the patient still remains ‘unloaded’.

Persistence…
I continue to dig around to get to the truth about this bizarre situation, so if you live in Lincolnshire and have not received your loading dose either, please consider getting in touch and giving me the name of your Practice and GP so that together we can make a change. (This goes for anywhere else in the UK too).

I have reminded the Practice of NICE Guidance. This states that a loading dose of 6 injections should be given and that this every other day frequency should be continued for those with neurological symptoms. This regime exists so that the patient has the best chance of recovery.

My help, or interference as this Practice sees it, is unwelcome and has fallen on deaf ears. Imagine a drawbridge being pulled up and port cullis being heavily dropped. This is arrogance, ignorance and stubbornness at an unprecedented level.

The Clinical Lead at the CCG (Clinical Commissioning Group), who is also a GP has said “the Practice were likely right in regards to their cautious approach” – Shocking! This wet comment smacks of a doctor not wanting to go against a peer rather than making sure (as they should do) that the patient’s needs are at the heart of the matter.

I won’t give up on this patient or on the wider situation, but my persistence causes some health professionals I’m dealing with to become angry …….

Belittling behaviour…
When I explained about the pointlessness of just one B12 injection for someone so severely affected the disgruntled District Nurse I mention above, loudly told me, “YOU ARE JUST A WOMAN!”  (I know, a shocking lack of sisterhood!)

So I agreed with her. Obviously it was meant as an insult, but agreeing with someone when they’re insulting you has a miraculous effect. It completely takes the wind out of the sails.

Essentially her statement was correct, I am just a woman;

Just a woman who cares 

Just a woman who wants to make change

But what the nurses statement was really saying was;

“you are ONLY a woman, you are not a nurse like me or a doctor, how can you know all these things and I don’t? How dare you make me feel inadequate?”

I understand her frustration. I understand her annoyance at not knowing about B12 deficiency, I’d be annoyed too…..she was however shouting at the wrong person, perhaps she should have been asking others around her why she hadn’t been taught more about this vitamin than how to give B12 injections.

It’s a fact that most people with B12 deficiency know more about their condition, how it affects them and how it should be treated than their doctor or nurse does. Wouldn’t it be lovely if this truth could be embraced and the patient’s knowledge tapped without the healthcare professional feeling inferior?

The reason that my site and others like it exist is because the teaching of B12 deficiency for those who need it is far too sparse and this needs to change.

Best wishes Tracey

www.b12deficiency.info

If you are a health professional and you and your colleagues want to learn more about B12 deficiency please click here.

If you are experiencing problems with accessing treatment;

For testimonials please click here.

Please note that the NICE link is unavailable outside of the UK.

 

Wherever we are in the world, we are all in the same boat…

There are many problems associated with diagnosis and treatment of B12 deficiency and many of them boil down to a lack of education of health professionals. They have all been done a disservice.

This is a worldwide problem.

Serum B12 blood results
I help people to access the treatment they need and always urge people to get a copy of their current and historical results. In some cases they have been found to be below range, but the result has been ignored whilst the patient has continued to deteriorate. Remember you are legally entitled to your results.

Our GP’s may be unaware of the limitations of the serum B12 blood test, that it can miss seriously deficient patients and that this can lead to a within range result being batch filed and labelled as ‘normal’.

Lack of education of this common condition means that our GP’s don’t necessarily understand that they cannot wholly rely on the blood results. The clinical picture is of utmost importance and if the patient is symptomatic it’s vital they access correct treatment for B12 deficiency.

It is important to note that the Active B12 test (holoTC/ Holotranscobalamin) is not gold standard either, remember that the clinical picture is key.

Treatment with tablets
Too many GP’s in the UK (and in other countries) try and treat B12 deficiency with B12 tablets and if the patient includes animal products in their diet, like the one the result belongs to below, then their deficiency is not caused by dietary lack and injections are essential. If you cannot absorb B12 from food then a tablet taking the same route won’t work either.

NICE Guidance states:

  • Not thought to be diet related — administer hydroxocobalamin 1 mg intramuscularly every 2–3 months for life.
  • Thought to be diet related — advise people either to take oral cyanocobalamin tablets 50–150 micrograms daily between meals, or have a twice-yearly hydroxocobalamin 1 mg injection.

The above result at 144 ng/L is below range and is definitely showing B12 deficiency, the patient has many neurological symptoms and as I have said, includes animal products in their diet. Unfortunately this GP (and others in the Practice) believes that 50mcg cyanocobalamin tablets are the best way to treat this patient.

In reviewing these results, the GP added their own note stating:

“B12 low, script for cyanocobalamin and repeat 2 months”.

The second sentence originates from the lab and states:

“Note low B12, deficiency possible, treat if clinically appropriate otherwise repeat after 2 to 4 months and review.”

The issue with the lab note is the term: ‘deficiency possible’ –  surely this should read ‘definite B12 deficiency’?

All labs are different, all assay kits are different and all reference ranges are different. This lab below has a low reference of 150ng/L and in my area it is 220 ng/L, in East Lancashire it’s 110 ng/L. There is no across the board standard which help either the doctor or the patient.

The patient that these results belong to continued to feel unwell, had absolutely no abatement in symptoms but due to the supplementation of the 50mcg tablets there was a small raise in the serum B12 level to 161ng/nl. This confirmed to the GP that the patient could absorb B12 and they were instructed to continue with the tablets. In fact, the patient was told that they could ‘definitely absorb B12’.

CRIKEY

This would not have happened had the GP been properly educated about B12 deficiency.

Waste of time, money and NHS resources
This patient went back to see the GP repeatedly due to feeling no improvement and each time their B12 serum level was tested. Each time they were told that they should continue with the tablets for another 2 months. How frustrating is it to even read this, never mind live this?

My recent involvement in this case provided the information the GP needed to treat the patient as per NICE Guidance and how cyanocobalamin should only be used for patients with B12 deficiency of dietary origin.
However, I was told that the Practice were following another protocol and that they felt the patient hadn’t taken the tablets religiously and this was the reason for no improvement.

WOW

After nearly a year of zero improvement in symptoms I think most of us would be hard pushed to take a tablet which was proving to be a pointless treatment.

A tricky but simple case
Thankfully common sense has now prevailed and the Practice has decided to give the patient the correct treatment of B12 injections. It took many phone calls and emails for this to be actioned. The people I asked to speak to were often ‘in a meeting’ but I don’t give up.

It should not be that any patient is left for 11 months without correct treatment for this common and easy to treat deficiency.

This practice were very annoyed that I was advocating for the patient, they said that there was no need for “3rd party involvement” however in this case and in fact all that I get involved in, there absolutely was a need.

Until education on B12 deficiency is the norm, it will continue to be that outside agencies are needed to help health professionals of all disciplines to understand the seriousness of this condition and what correct treatment should be.

We are all the same
Many of us know how difficult it can be to challenge a doctor, especially those that have their heels so firmly dug into the ground.

Fortunately I learnt long ago that it can be unsafe not to challenge doctors, that they are no different to the rest of us, that they are not infallible, and they can correct their mistakes if they choose to – if the infrastructure allows them to.

I am thankful to all those health professionals who appreciate being furnished with the correct information about B12 deficiency and who regularly use my site.

Best wishes

Tracey
www.b12deficiency.info

You can read testimonials here.

B12 deficiency, the fantasy & the reality

The BBC came to the first day of the 2016 conference and as part of their report they needed to get a ‘balanced’ view of B12 deficiency so they interviewed a GP. This slide below shows the statement provided.

IMG_3100

As you can see, this GP from the RCGP (Royal College of GP’s) has stated that;  “GPs are highly trained individuals and I have absolutely no doubt of their ability to diagnose and thereafter treat vitamin B12 deficiency.”

The fact is that from experience, we know that this is a fantasy, many of our GP’s know that this is a fantasy and I’m sure that even the doctor speaking those words knows that the statement he gave (or was given) is a fantasy.

There is no doubt that GP’s are highly trained – but they are not highly trained in nutrition, and certainly not in B12 deficiency. How can they be when it doesn’t feature in their curriculum?

The stark reality for B12 deficient patients, not just in the UK but globally, is that for the vast majority of clinicians including consultants, doctors, nurses, medical students and even NHS Nutritionists,  education in nutrition is sparse and in the case of vitamin B12, it can be non existent. Even some privately trained nutritionists do not understand the essential need for B12 injections rather than oral supplements in those who cannot absorb B12 from food.

Unless a clinician has a personal interest; suffers from this condition themselves or they have a family member with it,  they very often have no idea of the many causes and symptoms of B12 deficiency or of the seriousness of it. They may be exposed to limited information on just pernicious anaemia which, in reality, represents the very tiny tip of the iceberg.

Myths are learnt or picked up during their careers;

That too much B12 is toxic, that levels over 2000 post injection are ‘dangerously high’

That the symptoms experienced are psychosomatic

That B12 is a placebo and that the more you have the more you want

That 4 injections a year means you have a vast store of B12 in your liver, enough to last you years

That even though you include B12 in your diet, that your deficiency is dietary

That you can now miraculously absorb B12 now because their computer says so.

This is all incorrect.

An example of the reality for many patients is contained in the letter below. This was sent to me (and launched my website www.b12deficiency.info) there are even worse examples contained within the letters page.

You can see from this letter that my GP contacted a gastroenterologist, a ‘Specialist’ who should (in an ideal world) know a little about B12 deficiency and the gut, however, he felt I should see a psychotherapist and be prescribed anti depressants for my B12 deficiency symptoms. He came to this conclusion without ever meeting me. Bizarre practice?

My GP perhaps contacted this gastroenterologist because she felt her own knowledge was not enough or she needed someone else take the responsibility? I feel she was let down by someone else whose knowledge ‘was not enough’ either.

Specialist letter (2)

My GP thought the suggestions in the letter were reasonable until I pointed out that yes, I could spend £50 talking to a psychotherapist but what I would be saying is “I’m here because my GP won’t give me the B12 injections I need.”  I also asked my doctor why she thought her memory was more important to her than mine was to me. Thankfully I was prescribed more frequent B12 injections.

Many people write to me to ask “who is the best specialist for me to ask my GP to refer me to regarding B12 deficiency”. The answer to that can only be; ‘the specialist who understands what it means to be B12 deficient’ and tragically, the experience for so many is that those are few and far between. Too many patients find themselves out in the cold, desperately under treated or misdiagnosed with other conditions simply due to a lack of education and awareness.
Our clinicians have been done a great disservice, it’s complete madness that nutrition is not the biggest part of medical training.
If we look at this from the GP’s point of view and consider the long years of intensive training,  a patient tries to tell them they’re missing something so fundamental.  They might think it ridiculous that this seemingly enormous potential for misdiagnosis of B12 deficiency were fantasy on the patients part. Surely if it was so important then surely it wouldn’t have been missing from their education, it would have warranted in-depth learning and be a part of all modules and not just the couple of hours they may actually spend on the subject?

How can our GP’s look for something they don’t know they should be looking for? If their eyes haven’t been opened by personal experience and their peers dismiss B12 deficiency as a nonsense afflicting hypochondriacs, then the chances are that they might conclude this too.

I want to share this Ted Talk on ‘The Power of Generalism’ by Dr Ayan Panja with you because it served to remind me of the daily challenges and wide ranging skills that GP’s have. Due to the my own experience and that of those who write to me, I am guilty of forgetting this from time to time.

 

In the UK the average GP is allocated around seven minutes to with each patient. This includes listening to the complaint, diagnosing and prescribing. This is unsatisfactory for both parties. Sometimes it is easy to forget the previous kindness and excellence of our individual GP’s when the gaping chasm of knowledge of B12 deficiency looms.

This situation can lead to a drastic change in the patient-doctor relationship. The emails I receive every day very rarely champion the GP or the specialist. They are from desperately ill people who are being, dismissed, under treated and generally given short shrift. This needs to change but the ‘system’ is not making this easy for either party.

There are GP’s who are able to treat B12 deficiency correctly as per patients symptoms, there are others who feel their hands are tied and there are some who presume that they know how the patient feels, better than their patient.

Some enlightened GP’s are fully aware of the terrible hand dealt to B12 deficient patients and if we could all work together on this then our relationships would remain intact.

I feel my job with the website is to help patients to remain under the care of their doctors. In order to do this, some patients have to try and educate, sometimes this is an insurmountable task and patients end up ‘going it alone’. This is far from ideal.

There are ‘powers that be’ in the NHS, the government and other agencies who are well aware of the situation and scale of the B12 deficiency problem. Thousands of us have reported it and there are countless journals spanning decades backing up what we say,  but so far it remains suppressed. The comment from the GP to the BBC bears this out.

By working together we can make a difference.

Best wishes Tracey

www.b12deficiency.info

Facebook – https://www.facebook.com/b12deficiency.info/

Twitter – @B12info

If you need any help or information, please contact me here.

Remember there is no clinical evidence for our restricted treatment – your doctor may not be aware of this and might be inclined to increase the frequency if they were?

http://www.b12deficiency.info/blog/2016/09/28/the-tanks-empty-but-i-can-smell-petrol-so-you-have-90-days-more-driving-ahead-of-you/