B12 injections stopped " Do not meet criteria"

[b12timbo]

2018 Diagnosed with low B12 ( Due to P.P.i. 2 X 20Mg daily). Receiving 10 weekly B12 IM injections

2023 January practice call me to advise I will no longer get injections as "I do not meet the criteria".

GP / practice fail to respond to requests for explanation .

2023 February I raised a complaint and SAR

2023 May I request a second opinion, ( partly due to their failure to respond to complaint / S.A.R.)

2023 June Practice responds to my complaint stating " in regard to the B12 injections you have requested I would like to let you know that the reqeust has been discussed with the practice partners at the partners meeting . The partners are in agreement that, unfortunately, you do not meet the criteria. Your case has been discussed with the clinical commissioning group who have agreed with our decision" .

Other than alluding to a B12 reading in the 200s I am unable to ascertain any information as to how they have arrived at this decision or what was disclosed to the CCQ.

( CCQ have also failed to respond to S.A.R. for copies of what was provided by GP practice regarding the removal of B12 injections

I am now forced to escalate to PHSO but need credible supporting evidence.

Any help gratefully received, in particular direction to the exact part of the Nice guidelines that state injections are for life.

Many Thanks

Tim

[charks]

Do you have PA? If not there aren't any guidelines about BI2 injections.

I'm afraid you are yet another victim of GP's appalling ignorance about B12 deficiency.

[b12timbo in reply to charks]

Thank you, Charks , for replying .

I was only diagnosed with low B12 as a result of a blood test, due to presenting with, amongst others, chronic fatigue, brain fog and pins and needles.

[Nackapan in reply to charks]

There are.Its about continuing b12 injections if a good clinical response.

Also as the

IFAB test only picks up 50% of those with PA

All NHS trusts have flow charts .

Often not looked at

It's guidelines that are not followed beyond thd loading doses lije every other day with neuro problems .

If other things ruled out and its not dietary .

Even with PA injections ate being stopped??

Q . To ask

What criteria ?

Who's made the decision

How else do they intend to trest me?

Without maintenence treatment non reversible damage can occur.

A Gp can prescribe inthe patients best interest

Quote that too.

[b12timbo in reply to Nackapan]

thank you for your response . I will investigate further tomorrow.

[jade_s]

I'm sorry you've gotten the runaround, it's happening to a lot of people in the UK. I can't access NICE guidelines because I"m not in the UK, but perhaps this will work for you cks.nice.org.uk/anaemia-b12...

There are also the BNF , the doctor's guide book, and the BCSH guidelines onlinelibrary.wiley.com/doi...

I also wrote a long reply to another person who posted today and is in a similar situation as yourself, please see healthunlocked.com/pasoc/po...

[b12timbo in reply to jade_s]

Thank you for responding, I will investigate further tomorrow.

[Nackapan]

B12 deficiency info Have a section on writing to your doctor if b12 injections are stopped .

PAS shoukd be able to help too.

NICE guidelines

Treating b1e def.

Look through sleepybunnys replies .

Loads of links .

Sorry this has happened .

I've had many 'rounds'

I keep it simple now and describe symptoms that come back .

Ask them to read guidelines without quoting any .

[b12timbo in reply to Nackapan]

Thank you for responding, I will investigate further tomorrow.

[Parlay]

PPI’s by their very nature to protect the stomach stop you absorbing all vitamins and minerals so your exhaicould be due to any number of deficiencies. Did they do blood tests to check your b12 before deciding to stop them?

[palmier]

I suppose because your low b12 was blame on the PPIs and not on pernicious anemia? But pernicious anemia is difficult to rule out, as you can have a negative IFA test (intrinsic factor antibody) despite having pernicious anemia. On what grounds did the doctor rule out PA? Just because there is a possible explanation, the PPIs, that isn't necessarily the right explanation. You shouldn't have to become deficient again before getting treatment. Once discovered, future low b12 should be prevented. Six months of deficiency may cause permanent nerve damage.

[Sleepybunny]

Hi,

I'm about to go out so apologies for a short reply and any abruptness.

I've assumed you're in UK.

How to write letters to GPs about B12 deficiency

b12deficiency.info/writing-...

If you haven't already, I suggest tracking down the local B12 deficiency guidelines for your ICB (Integrated Care Board - England) or Health Board - Wales/Scotland, not sure about NI.

List of ICBs in England.

nhs.uk/nhs-services/find-yo...

If you can't find the local B12 deficiency guidelines online or by searching forum posts here, best bet is to submit a FOI (Freedom of Information) request to ICB or Health Board asking which B12 deficiency guidelines are being used locally and for a link to or copy of them.

May be worth a search online for "name of ICB/Health board criteria B12 injections".

Put FOI or Freedom of Information in search box on GP surgery website or on ICB/Health Board website to take you to a page explaining the process.

Have you talked to your MP or devolved representative?

Should be something useful in these links.

Links to forum threads where I left detailed replies with lots of B12 deficiency info eg causes and symptoms, UK B12 documents, B12 books, B12 websites and B12 articles and a few hints on dealing with unhelpful GPs.

Some links may have details that could be upsetting.

Some of the info will be specific to UK.

healthunlocked.com/pasoc/po...

healthunlocked.com/pasoc/po...

healthunlocked.com/pasoc/po...

Link to thread about Patient Safety, has useful links for those in UK having difficult health experiences.

healthunlocked.com/pasoc/po...

Just something to think about....

Some forum members here have been diagnosed with high levels of stomach acid and put on PPIs only to find out later that they actually had low levels of stomach acid. The symptoms of high and low levels are very similar.

Low levels of stomach acid can be associated with PA(Pernicious Anaemia).

I'm not medically trained.

Good luck and keep asking questions.

There's lots of supportive people here.

[b12timbo in reply to Sleepybunny]

Thank you for your detailed reply. I am hampered by the fact they are refusing to explain how they arrived at the decision or what tests were done.

I am in the process of escalating to the CQC again.!

[Cherylclaire Forum Support]

Reading through Sleepybunny 's reply, it may be pertinent to find out why you were put on PPIs in the first instance. It is possible that this was because of a mistaken belief that you had too much acid (rather than not enough) - as outwardly, this would result in the same symptom. Worth checking ?

[Sleepybunny in reply to Cherylclaire]

If you're searching online for info about PPIs, stomach acidity etc .....

Achlorydia is the medical term for no stomach acid.

Hypochlorydia is the medical term for low stomach acid.

Link about hypochlorydia.

drmyhill.co.uk/wiki/hypochl...

Next link discusses a simple test that may show if low stomach acid (hypochlorydia) is a possibility.

avogel.co.uk/health/digesti...

Low stomach acid should be diagnosed by a doctor.

Did you ever see a gastro-enterologist?

Link about when B12 deficient patient should be referred to a neurologist/haematologist/gastro-enterologist in UK.

cks.nice.org.uk/topics/anae...

Links about PPI drugs and B12 deficiency

bmj.com/content/367/bmj.l64...

pulsetoday.co.uk/news/clini...

I found some interesting articles when I searched online for "PPI B12 deficiency UK" including a detailed document

Your ICB (Integrated Care Board) or Health Board may have published something on PPIs and B12 deficiency.

There is a form of gastritis associated with PA (Pernicious Anaemia) called AMAG, autoimmune metaplastic atrophic gastritis. Low stomach acid is a symptom of AMAG.

Link about gastritis from GUTS UK charity, AMAG is mentioned.

gutscharity.org.uk/advice-a...

Testing for PA (Pernicious Anaemia)

pernicious-anaemia-society....

[Nackapan]

Are you a member of PAS They should help