Gloucestershire treatment algorithm is harmful and at odds with NICE

Gloucestershire is a beautiful county – but like the villages in Midsomer Murders, a potentially harmful place to live if you need B12 injections and your GP follows this Primary Care Management Treatment Algorithm. (4th section down).

How many B12 deficient patients are at risk of permanent damage in this area? How many struggle with poor mental health? How many are bed bound, confused, living in pain believing that their B12 deficiency is being ‘treated’ so wondering what on earth is causing their body and mind to feel like it’s shutting down?

There are threads on Twitter of doctors from Gloucestershire proudly sharing this treatment algorithm and feeling really smart because they were ahead of the COVID 19 curve in giving just about everybody oral B12 supplements.

It’s all in your mind…

I’ve heard of many patients being told that their debilitating symptoms can’t be due to B12 deficiency. That it’s more likely to be due to their age, their lifestyle, or the fact they have young children, or a stressful job, or – and this is the worst, that it’s all in their “imagination”.

So the long suffering patient is either sent to hospital to see every other Tom Dick or Harry in a network of ‘ologists’ often waiting months for appointments in order that it satisfies the urge of the GP to pin the symptoms on ‘something else’ because ‘it won’t be B12 deficiency causing the symptoms because your serum levels are really high at 200pg/ml.”

My own deficiency could have been ignored if I’d lived in this area. You’ll see they don’t appear to bother with people with serum level’s over 180pg/ml. I was diagnosed with a level of 216 (reference range of 220 -771). I wouldn’t even be worthy of the GP looking at the chart despite my many presenting symptoms. The problem of differing reference ranges of B12 levels has been well documented and the BMJ state that there is no ideal test and that the clinical picture is of utmost importance.

Terrifying isn’t it?

What’s really worrying about B12 deficiency and the way it is handled by those who have little knowledge of it, is that the patient very often starts off in the dark and then remains in the dark because they ‘trust’ that their GP is ‘all knowing’. They don’t consider that the information their GP has imparted is not complete, not properly informed, not helpful. They then deteriorate, but don’t question their treatment, don’t ask Dr Google, don’t seek more information because they have been either pushed down another path for a further red herring diagnosis or just simply ignored.

How to start treatment with B12 injections in Gloucestershire using this algorithm: 

  1. Your B12 has to be lower than 180pg/ml
  2. You must have neurological symptoms (on their list)
  3. You must have macrocytosis and anaemia
  4. You must be positive for anti intrinsic factor antibodies – (but after loading you will be put on oral tablets!)

But if you are not presenting with the list of ‘allowed neurological symptoms’ i.e. those recognised by your GP – and you have no anaemia (which by the way, is not always present and can be a very late stage symptom) then, even if your result falls between 150-180 – the GP is instructed to:

“Reassure the patient that this is unlikely to be of concern. Recheck serum B12 after 3 months, if still low, monitor B12 level every 6 months for 1 year and then annually for 2-5 years.” 

Now I’m no rocket scientist but even I know that this is pure bonkers. It still offers no treatment.

B12 deficiency comes in all shapes and sizes, with many causes and many symptoms

If I use my own case as an exercise of using this algorithm here: –
My level was 220, I had no anaemia, no IFA, no neurological symptoms that they list, but I was losing my memory, I had bowel and bladder problems, blurred vision, insomnia, anxiety, low back problems to name a just a few and yet I wouldn’t warrant treating. I dread to think how quickly I would have been confined to a care home with early onset dementia if I had been ‘cared for’ here.

Even if I had PA, if my GP had used this chart I would be placed onto oral tablets following the loading dose. This is complete madness. (Please see more on the low quality evidence on oral supplementation  here)

If my deficiency had been caused by malabsorption due to a drug such as metformin for diabetes I would have been advised to take calcium supplements or increase dietary calcium but would not be  given B12 injections in fact I would only be allowed B12 oral tablets. This is totally bizarre, misinformed guidance.

Where is the patient?

At no point does this algorithm suggest LISTENING to the patient or considering the clinical picture. The patient doesn’t exist here, just blood forms and it’s completely wrong.

The only tiny mention ‘people’ get here is the suggestion that buying oral supplements over the counter may be cheaper than the NHS Prescription charge. WOW.

This algorithm is at odds with NICE guidance and is a ridiculous home-made protocol which won’t work for the vast majority. It’s time for Gloucestershire to start following good practice for patients.

What NICE state:

  • 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

So what can be done?

If you are in Gloucestershire – (or anywhere else this is happening), why not take action to make change? Your voice counts and you absolutely matter.

Why not contact;
The Expert Patient Programme – (The EPP is an NHS initiative to improve the lives of those living with long-term conditions such as diabetes, Parkinson’s, lupus, epilepsy, ME, arthritis, fibromyalgia or heart disease). NHS Gloucestershire offers the Expert Patient Programme (EPP) which you can access by telephone on 0300 421 1623

B12 deficiency is a long term condition, you have a lot to offer, make sure you are represented! Get you voice heard here and ask for their help.

Healthwatch
You could also call Healthwatch Gloucestershire on 0800 652 5193 tell them your story, ask for their help in accessing correct treatment.

Write to your CCG, why not email your MP and maybe send them this blog? Why not ask your friends and family to do the same?

The BSH have recently bowed under public pressure let’s help Gloucestershire to do the same here, make your voice count!

Don’t let your GP take you down Folly Lane, there is no time for foolishness or delay in treating B12 deficiency, time is of the essence and you deserve every chance possible of repairing your nerves.

Very best wishes

Tracey
www.b12deficiency.info

If you think you might be B12 deficient please click here, and please try not to supplement before testing.

Please add your signature here if you would like to support making B12 OTC in the UK – Please DO NOT pay to sign! Any money given does not go toward the cause you are supporting.

 

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

East Lancashire NHS Trust – you win the trophy hands down, for dangerously low, lower reference level for serum B12 test, 110 – 914ng/L!

Just take a look at these results, which are being ignored by the GP (see previous post) and then have a gasp at that lower reference range, are you still standing?  NO?…. neither is the patient.  They remain exhausted with regular blackouts.

What are you doing to your patients East Lancashire NHS Trust?

How many Lancastrians have been misdiagnosed with other illnesses due to the almost impossibility of achieving a diagnosis of B12 deficiency under this Trust?

IMG_20140611_100402

 

East Lancashire NHS Trust need to identify all the inevitable misdiagnoses due to this incredibly low reference range – we thought Cardiff and Vale NHS Trust were bad but this really takes the biscuit.

Exactly how many patients have been incorrectly misdiagnosed with;

Alzheimer’s/Dementia?

Depression?

Chronic fatigue syndrome?

Fibromyalgia?

Multiple sclerosis?

M.E.?

Psychosis?

Bipolar?

Vertigo?

Congestive heart failure?

Chronic pain disorder?

Anaemia?

Autism?

ADHD?

How many babies fail to thrive?

How many children have a diagnosis of developmental delay, mental retardation?

How many metformin taking diabetics have their neuropathy incorrectly attributed to diabetes?

How many new mothers sectioned with post natal depression from inactivated B12 supplies?

How many benign essential tremors have automatically led clinicians to an incorrect diagnosis of Parkinson’s?

How many Strokes and heart attacks?

How many suicides?

East Lancashire NHS Trust we implore you to change this assay kit and re test all who have gone before and to screen all those patients who have left the GP’s office with nothing more than a diagnosis of hypochondria.

TAKE ACTION NOW – THIS IS SERIOUS!!

Please visit www.b12deficiency.info

http://b12deficiency.info/children-and-b12.html

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

Please sign and share our petition

http://www.change.org/en-GB/petitions/ian-hudson-please-make-our-life-saving-injectable-vitamin-b12-hydroxocobalamin-available-over-the-counter

Best wishes,Tracey