Dr stopped B12 injections.

[Observer]

My father who is in his 80's has been told by his GP that his 3 monthly B12 injections are being stopped because he has sufficient in his blood. He was diagnosed with P. A. several years ago. This does not sound right to me. Any advice appreciated.

[Nackapan]

It is nor right He needs it more than ever now. Get him to write to Gp.

Demand the renstsyrment of his treatment he was promised for with a PA diagnosis.

My mum is 90 has not got s PA diagnosins but has been having injections for the last year.

It is a know fact b12 denotes with older age.

[ACritical in reply to Nackapan]

Want us pensioners of their books, less hassle and saves the NHS.😏

[Nackapan in reply to ACritical]

Well it's not happening . Weve pug put pennies in !!

[Sleepybunny]

Hi,

I'd recommend that your dad or perhaps you on his behalf consider joining PAS who can offer useful info and support.

PAS (Pernicious Anaemia Society)

Based in Wales, UK.

pernicious-anaemia-society....

There is a helpline number that PAS members can ring.

PAS membership

pernicious-anaemia-society....

PAS support groups in UK

pernicious-anaemia-society....

No meetings during pandemic.

PA treatment is for life.

PAS have a leaflet/article "Treatment is for Life" that PAS members can print out and pass to their GPs.

pernicious-anaemia-society.... See Page 1 of articles.

Unhappy with Treatment (UK info)

1) Link about writing letters to GPs about B12 deficiency

b12deficiency.info/b12-writ...

I recommend putting queries about treatment into a letter to GP and possibly copied to practice manager as well. Keep copies of any letters sent or received.

In UK, letters to GP are supposed to be filed with medical notes so hopefully harder to ignore. Having a paper trail is useful in case there is a need for formal complaint in the future eg letter can be proof that an issue was raised with GP practice.

In any letter, you could draw attention to the potentially severe consequences of untreated or under treated B12 deficiency including that due to PA eg possibility of damage to spinal cord.

Neurological Consequences of B12 Deficiency

PAS news item

pernicious-anaemia-society....

PAS article about SACD, sub acute combined degeneration of the spinal cord, access to PAS members only.

pernicious-anaemia-society.... See Page 2 of articles.

Has he got any neurological symptoms? Make sure GP knows about them.

See links below to UK B12 treatment info.

BNF

bnf.nice.org.uk/drug/hydrox...

BSH Cobalamin and Folate Guidelines

b-s-h.org.uk/guidelines/gui...

May be worth referring to BNF and also BSH Cobalamin and Folate Guidelines in any letter.

2) CAB NHS Complaints

citizensadvice.org.uk/healt...

3) MPs /devolved representatives may be worth talking to.

BSH Guidance

BSH (British Society of Haematology) published guidance for GPs to use during pandemic.

It's possible your dad's practice is using out of date BSH guidance so perhaps you or he could check that his practice is using latest guidance discussed in link below.

pernicious-anaemia-society....

Local Guidelines

Most parts of UK have their own local guidelines on B12 treatment. I suggest trying to track down the local guidelines for where your dad lives. Some of these local guidelines can vary from what is in BSH guidance.

CCGs in England

nhs.uk/servicedirectories/p...

Health Boards Wales

wales.nhs.uk/ourservices/di...

Health Boards Scotland

scot.nhs.uk/organisations/

Health Boards Northern Ireland

online.hscni.net/home/hsc-s...

I wrote very detailed replies on another forum thread with links to B12 deficiency symptoms lists, B12 books, B12 websites, UK B12 documents and other B12 info including some hints on dealing with unhelpful GPs which might have something useful.

healthunlocked.com/pasoc/po...

The pandemic is impacting patients' B12 treatment in UK.

I left a detailed reply about impact of pandemic on B12 treatment in UK in next link which might be of interest.

healthunlocked.com/pasoc/po.....

If all else fails, some UK members on the forum choose to self treat if NHS treatment not enough.

I am not medically trained.

Cynical me wonders if it's a cost cutting exercise and perhaps they are picking on people who might find it harder to argue against decisions like this.

I may add more later so check back.

I am not medically trained.

[Observer in reply to Sleepybunny]

Thank you very much, that is a great help.

[Sleepybunny in reply to Observer]

Hi,

"and had lots of neurological sysptoms"

In UK, BNF (British National Formulary) suggests following treatment pattern for those with neuro symptoms

A B12 loading injection every other day for as long as symptoms continue to improve followed by an injection every 2 months

If no neuro symptoms are present, it's 6 loading injections over 2 weeks followed by an injection every 2 or 3 months.

See BNF and BSH Cobalamin and Folate Guidelines links in my other post plus this link to NICE Clinical Knowledge summary

NICE CKS

cks.nice.org.uk/anaemia-b12...

Perhaps the next time your dad sees the GP face to face, he could ask them to open their copy of the BNF book to Chapter 9 Section 1.2 and ask them to read what treatment it recommends for those with B12 deficiency with neuro symptoms.

Link about writing to GP if under treated for B12 deficiency with neuro symptoms

b12deficiency.info/b12-writ...

I hope that your dad gets the treatment he needs.

[Observer]

Thank you for your kind words. My father has had lots of various health issues in the last few years and was untreated for low B12 for quite a long period of time and had lots of neurological sysptoms and was put on strong anti depressants for a while which made things worse. He has had a medication review today and they have written to his GP asking to reverse their decision. He is going back on Thursday to see the GP so hopefully will get an answer then.

[wedgewood]

Glad to see that you have had plenty of answers . We are reading of such cases on a daily basis now . It is truly outrageous .It is a fact that once B12 injections are commenced for P.A. , no further testing of B12 makes sense.. I has to remain high . The doctors should read the guidelines .Your father has my every sympathy , and we all hope to hear that he has had his injections reinstated . If that doesn’t happen. Please join t the society and you will get help.

[Observer in reply to wedgewood]

OK will update the thread later this week.

[Foggyme Administrator in reply to Observer]

Observer. So sorry to hear of the issues your father is having. It's shocking and something that we're hearing more and more of in forum.

Members have left some very good information for you. It's a fact that, as others have said, the BSH guidelines, NICE, BMJ et al all state that once B12 injections have started, no further testing of B12 is required - levels will (and should) always be high - often way over the top of the reference range - because large doses have been injected (not rocket science, is it - our it shouldn’t be). In short, serum B12 levels are meaningless in those who are having B12 injections.

Serum B12 levels therefore cannot be used to monitor the efficacy of or need for continued treatment - the treatment for PA is life-long and treatment regimens should be maintained at a level that keeps one symptoms free, irrespective of what serum B12 levels might be.

Just wondering if someone is able to go with your father on Thursday...taking evidence from some of the links provided here - to help him 'fight his PA corner'? GP's are often more attentive and proactive if there is a witness present (what a sad thing to have to say).

As others have said, a B12 treatment appeal (including evidence from BSH etc. guidelines) is often more effective when put in writing (a formal letter has to be entered in his medical records)... that often sharpens thinking and produces action.

Also worth noting that whilst many Clinical Commissioning Groups (CCG's) develop 'local guidelines' for the treatment of PA/B12 deficiency, these rarely follow the guidelines set out by professional bodies...and are often so contradictory and wrong that they are dangerous to health. These 'guidelines' are usually produced by those who have little knowledge about PA or B12 deficiency. But don't know that.

If his GP is still reluctant to provide treatment, might be worth asking at what stage your father can expect to develop subacute degeneration of the spinal cord due to lack of treatment (or under treatment) with B12 injections - and smile sweetly and ask who will then be held accountable! Many GP's have no idea that this can arise due to failures in treatment regimes. I'm not suggesting that your father will get this - just that asking the question may 'encourage' them to think...and act.

If continued treatment is refused, you could always ask them to write to your father, outlining their reasons for refusing treatment, enclosing evidence to support that decision - evidence from professional bodies and other than the so-called 'local guidelines' (they won't be able to because there isn’t any). It's perfectly appropriate thing to ask and it's in line with the tenants of evidence based medical practice.

I do so hope that all goes well on Thursday. We'd love to hear how things go so it'd be lovely to get an update. A tip - it may be better to put up a new post as older posts become 'lost' in the forum traffic as they slide down the forum pages - so updates to older posts often slip by unnoticed 😉.

Very best of luck to you both.

[Leils]

I'm outraged on your behalf.

Sounds like he needs more, not less.

Hope you can get them reinstated

[briarhillcat]

He NEEDS them. Yet again ignorant doctors are doing this. Push for it for him, bless him.

[Tiggers321]

I would say the same! With P.A. injections will be needed for life to maintain good b12 levels x