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.

 

6 thoughts on “Gloucestershire treatment algorithm is harmful and at odds with NICE

  1. An excellent article, thank you Tracey. I live in Gloucestershire, diagnosed with PA 5 years ago. I was told by my GP yesterday that they weren’t ‘allowed’ to give injections anymore and I had to buy oral supplements. When I questioned this he said it was out of his hands and came from a higher authority, that overrides the NICE guidelines. He said my symptoms (extreme fatigue, painful joints, aching muscles) were often cited by other patients before they are due their jab but there is no evidence that this is related to B12 deficiency. He invited me to have a blood test before deciding whether or not to give me my injection. Obviously the FBC is fine, so no jab.
    I consider myself fortunate, in that I have the confidence to challenge my GP and I am also happy to SI as I am not prepared to play Russian roulette with my health. However I am going to complain about this as it is putting so many people’s health on the line. I remember how incapacitated and ill I was before I was diagnosed and started getting regular injection. I can’t imagine being that ill and scared and not getting the right treatment. It is just so wrong

    • Thank you for taking the time to comment Karen. I get so bored of hearing ‘there is no evidence’ in regard to how a patient experiences B12 deficiency. There is plenty of robust evidence if the choice is made to look for it and of course, the major source of evidence should simply be listening to the patient. I am appalled that so many people have no choice but to buy essential treatment from another country in order to stay well. You are right – “It is just so wrong!”
      Best wishes Tracey

  2. I despair. 25 years depressed and on Seroxat for 5 years… came off… MOther died. Doctor suggested all family be tested for b12 deficiency. All 4 of us positive. All 4 unable to absorb orally. All 4 put on injections. Lifesaving treatment now told to take tabs. In Spain you can buy cyanocobalamin injects 5 for 3 euros at all chemists. That’s what I’ll be doing if they insist on this. I value my sanity too much.

  3. I’m in Gloucestershire. I Was diagnosed just before the lockdown. B12 148.. Not dietry( PA negative) likely cause poor absorption from previous bowel resection.
    Had all neuro symptoms and more. I was unable to function and off work.
    I’ve had 4 loading jabs( was only offered 5 in the first place) been prescribed supplements and told to go back for a retest in 6 months.
    Now sourced my own supply and self injecting ☹️
    Am so disappointed that this is a countywide issue for a lifesaving treatment!

    • I agree Sam, people should not have to feel they need to buy online in order to access vital medication but it is the only way so many can cope when faced with a GP who has a lack of knowledge.
      Best wishes Tracey

  4. Thanks for sharing, Tracey. Remember, this is the county where medics almost left me debilitated with neurological symptoms for the rest of my life. After my GP failed to even carry out a blood test, referring only to my past history of depression and deciding I merely had a “poor stress tolerance”, as you know, I was left feeling exhausted, psychotic, having seizures, tremors, and muscle stiffness for over a year. Did I ever get an apology? No! Just a letter justifying his actions as he said that my b12 levels were just below normal at 144. GPs continue to be the bain of my life. It was only thanks to you, Tracey, that I ever received treatment at all. Now supplementing with b12 bought from Germany as this is the only way I can keep functioning.

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