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 particular 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, an enormous medal!

During the appointment I attended, we challenged the GP when it was stated that, for this patient, B12 injections would be ‘Off License’.  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

Imagine being sectioned for a vitamin B12 deficiency…….

Imagine feeling that taking your own life is preferable to fighting your doctor for your right to this essential vitamin

Imagine being tested for B12 deficiency and even though the serum test shows you are deficient, your doctor denies treatment because she doesn’t believe that your mind can be affected

Imagine a newly qualified doctor telling you to eat more broccoli to build your supplies of B12

Imagine pleading for injections for your severely B12 deficient child only to be ignored, all this whilst the doctor calls social services to accuse you of starving your child

Imagine a helicopter police hunt for a desperately deficient OAP whose doctor thinks that three 50mcg oral cyanocobalamin B12 tablets per day will correct their severe deficiency

Imagine your child being given a diagnosis of autism only to find later that B12 deficiency was the correct diagnosis

Imagine being bed bound and unable to look after your children or yourself because your doctor thinks B12 is a placebo and will not allow B12 injections more frequently than every three months

Imagine studying hard for a career only to find your undiagnosed B12 deficiency makes it impossible to work or contribute to society in any way

Imagine being treated for cervical cancer when B12 deficiency caused your abnormal pap smears

Imagine becoming anorexic and being admitted to a mental health ward where the doctors involved in your care don’t understand that anorexia is a symptom of B12 deficiency

Imagine being diagnosed with post natal depression after enduring a long labour with B12 depleting ‘gas and air’ and only being treated with drugs instead of the vitamin your body has been starved of

Imagine being labelled as a lazy hypochondriac when you haven’t the energy to raise your head from your pillow because your doctor says a three monthly injection is adequate treatment

Imagine being one point above a B12 serum test’s lowest range, with screaming neurological symptoms and being denied treatment because a doctor says your level is ‘normal’

Imagine being unable to remember the names of your loved ones, how to cook, how to read music, how to drive your car

Imagine being tested and probed for other ‘more serious’ illnesses in your quest for a vitamin you know you need but medical professionals simply don’t

Imagine being fed a cocktail of antipsychotics, antidepressants, antiepileptics, lithium, and pain killers, when all you really need is a 55p B12 injection every other day until your myriad of symptoms stop improving

Imagine a night out partaking of some supposedly, harmless ‘hippy crack’ (nitrous oxide), and later  finding that you can’t walk and that your doctor never puts 2 and 2 together

Imagine being misdiagnosed with MS due to your doctors ignorance of B12 deficiency

Imagine knowing that other countries allow their citizens to buy this essential injectable vitamin over the counter but in the UK it is restricted and rationed

Imagine being diagnosed with Alzheimer’s, or dementia in your 20’s or 30’s when it’s simply vitamin B12 deficiency causing your appalling memory problems

Imagine having repeated miscarriages and rounds of unsuccessful IVF only to find that £10’s worth of vitamin B12 injections could have you on the road to natural conception

Imagine your healthy baby becoming floppy, unresponsive and failing to thrive but never finding that elusive doctor with a comprehensive knowledge of B12

Imagine your child being arrested when their anger and aggression is due to desperate under treatment for B12 deficiency

Imagine finally giving up after you have fought for help from your doctor, only to be continually ignored and told that your symptoms are all in your mind

Imagine knowing far more about B12 deficiency than your GP or any of the ’specialists’ your doctor has referred you to

Imagine an ignorant consultant calling Social Services to accuse you, a loving parent, of causing your child’s malnutrition when you have a family history of B12 deficiency

Imagine being mistakenly prescribed acid suppressants when your stomach acid is already too low to absorb B12 and then finding that eventually your legs fail you

Imagine being diagnosed with pernicious anaemia and knowing you will need treatment for life but having an ignorant doctor stop your injections when the serum B12 level is ‘within range’

Imagine having repeated cardiac arrests, prolonged stays in mental health units and  when you finally work out that you are B12 deficient, being denied treatment

Imagine a life with this condition, when your family and friends don’t understand your many symptoms and who tell you ‘the doctor must know best’

Imagine finding a below range B12 result in your notes from years ago and realising that your confinement to a wheelchair and permanent neurological damage could have been avoided if only you’d been given B12 injections

Imagine just how devastated healthcare professionals feel when they realise the harm that may have been caused to patients because their training lacked vital information on B12 deficiency

Imagine the savings to the NHS if B12 deficiency if this ignorance were corrected

 

All the above has happened and sadly may continue to happen until something changes.

Imagine the good that will come from correct training for clinicians and therapists- please contact me for more information

Please consider signing and sharing my petition – you will be helping to save lives.

If my site and blog have helped you please see;  How you can help.

Best wishes, Tracey