Informing your GP: Hi, Since taking... - Pernicious Anaemi...

Pernicious Anaemia Society

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Informing your GP

SallyRees
SallyRees

Hi,

Since taking matters into my own hands after being informed that my monthly B12 injections were being stopped due to covid I’ve had one nagging question in my mind. Should I inform my GP and tell them what I’ve done?

After failing to reason with practice managers and 2 GP’s I chose to order my own source of B12 and self administer.

I felt completely let down by these people. The GP who originally prescribed my dose has since retired and I faced a brick wall when I suggested contacting him.

The new GP prescribed oral b12 supplementation even though I argued that I’m unable to absorb it.

I offered to self administer if they would authorise my prescription, but they refused.

After my initial relief of maintaining my B12 and avoiding the risks I’m now left wondering if I’m obliged to inform them.…🤷🏻‍♀️

57 Replies

It really is a difficult decision.

I told my first GP that I was self-injecting and he was horrified. Until I explained that the nurse had shown me how to do it, that I got my syringes and needles from Medisave and that B12 didn't need a prescription in Germany, so I got it from there - just as all Germans with PA get theirs.

Two months ago I changed GP practice. I shall not be telling them until I know them better. They already know that I inject twice a month, but I'm not sure how they'll react when they hear I do it twice a week.

So you have to decide how your GP will react.

SallyRees
SallyRees in reply to fbirder

It’s a toughie eh 😬 When I spoke with the GP I told him that he’d given me no choice but to try and obtain it and he gave me the “I wouldn’t advise it” line and even went on to say that in particular the German B12 was unreliable.

I’m sure this was said to put me off but I now wonder what attitude I’ll be met with if I need care on any another (non related) possible illnesses.

Maybe I’ll wait till this GP retires 😅

wedgewood
wedgewood in reply to SallyRees

I’ve seen the very same German B12 that I self-inject being used in a surgery in the U.K. ! So that's absolute nonsense when your doctor says that” in particular the German B12 is unreliable .” The German Pharmaceutical industry is controlled at least as strictly as ours . What was he/she hoping to achieve by spouting such nonsense ? That you would not self-inject and improve your health ? Outrageous !

SallyRees
SallyRees in reply to wedgewood

Honestly, I don’t know how I didn’t swear at him during this conversation 🤬 His refusal to even listen to me drove me insane.

I have no doubt that the German pharmaceutical industry and its regulations are any less stringent than our own.

I wrote a letter of complaint about the attitude and the curt manner in which he spoke to me but it hasn’t even been acknowledged.

He came out with rubbish about the stores of my B12 would be more than enough in my liver to sustain for 6 months!

Why aren’t our GP’s educated enough on B12 deficiency’s? My previous deficiency resulted in me being admitted to hospital and when I practically begged him to not let that happen in this covid environment he merely dismissed me.

Part of me thinks why should I let them know that I’ve taken matters into my own hands but then the other part of me is wondering that if I don’t could they refuse to treat me 🥺

Some links for those in UK unhappy with treatment.

Letters to GPs about B12 deficiency

b12deficiency.info/b12-writ...

Letters avoid face to face confrontation with GP and allow patient time to express their concerns effectively.

Best to keep letters as brief, to the point and polite as possible. It's harder to ignore a letter in my opinion.

When a letter is sent to GP, worth including a request that GP practice sends written confirmation to letter writer that they have received letter.

I included a request in letters that a copy of letter was filed with medical notes.

My understanding is that in UK, letters to GPs are supposed to be filed with medical notes so are therefore a record that an issue has been raised.

Useful to have a paper trail in case there is a need for a formal complaint over treatment in future.

Letters could contain relevant test results, date of diagnosis, brief family and personal medical history, extracts from UK B12 documents, requests for referrals to relevant specialists eg neurologists, haematologists, gastro enterologists.

Keep copies of any letters sent or received.

Most medical records are deleted after 8 years so don't rely on there being evidence of a past diagnosis of PA (Pernicious Anaemia) or other cause of B12 deficiency in current medical records.

CAB NHS Complaints

citizensadvice.org.uk/healt...

Local MPs/devolved representatives may be worth talking to if struggling to get recommended level of treatment.

PAS may be able to suggest useful info to pass to GP.

PAS (Pernicious Anaemia Society)

Based in Wales, UK.

pernicious-anaemia-society....

There is a helpline number that PAS members can ring.

See PAS leaflets and articles below.

pernicious-anaemia-society....

Some leaflets/articles can be accessed by non members.

PAS news item about concerns about treatment during pandemic.

pernicious-anaemia-society....

May be some other useful info in links below to threads where I wrote detailed replies.

healthunlocked.com/pasoc/po...

healthunlocked.com/pasoc/po...

I am not medically trained.

Wow! Many thanks for your time and all the information. There is a lot to take in but I want you to know your time and kindness is much appreciated.

I will defiantly look into the links you’ve provided and do my upmost to reinstate my injections.

In the meantime I can only reiterate how fortunate I feel to have found this community. With a lot of help from members here I have at least managed to self medicate and fend off the awful consequences of my GP’s attitude and ignorance.

Great that you are not medically trained Sleepybunny . The MEDICALLY TRAINED “ are completely ignorant where P.A. Is concerned .

Sleepbunny

I think you will find that records are not deleted but are archived, they only delete once a patient has passed away! However what you will find is GP surgeries have had at least 2 databases, 1 that was not linked to the national one and the national one that has existed for about 5-6 years ago could be longer, sorry I can't remember when it started but both these systems don't talk to each other and the previous data does not transfer!! All previous paper records are stored some items can be scanned in though when they are required! However, most GP's don't do this, as it too time consuming and they don't have the staff!! I used to work in secondary health and it's exactly the same there too!!

Thanks for info.

Link about how long UK medical records are retained for.

bma.org.uk/advice-and-suppo...

wedgewood
wedgewood in reply to SallyRees

B12 that’s stored in the liver has to be activated by the Intrinsic Factor before it can be absorbed . So Pernicious Anaemia patients cannot make use of it , due to lack of I.F. So no amount of stored B12 can be of use to us .

I had similar results from my GP too, made me very anxious. I asked for my blood results from last 3 blood tests and all but the last (when I was self injecting) came back low. There were also several flagged results which you would think a GP would look at one of which was very low creatine. One of my most noticeable symptoms at the time was muscle pain and weakness. His response to my query.........you’re not getting any younger, but he said it was probably polymyalgia and wanted to prescribe long term steroids which I refused. I’m not sure why they don’t want to look at the whole picture and try to prevent rather than cure.

How patronising! 😧 With so many symptoms and dangers it beggars belief that the GP’s refuse to treat us using something that costs pennies.

If you are in England, I’m sure i’ve seen an NHS email address in which to complain about your treatment re. B12 . Good luck! It’s all a struggle!

SallyRees
SallyRees in reply to Eloise81

Oh really? Off to google 😃🧐 Thank you.

Eloise81
Eloise81 in reply to SallyRees

I think it may have been on the PA Society information. I am a member so don’t know if you would have access without being one!

SallyRees
SallyRees in reply to Eloise81

Here you mean?

Eloise81
Eloise81 in reply to SallyRees

No, this is Health Unlocked. When in PA Society site there are resources in the form of documents & other information etc.

Eloise81
Eloise81 in reply to SallyRees

Hope this helps! Patients can complain to their local Clinical Commissioning Group or regional office of NHS England & NHS Improvement if they believe they are unhappy with the care they are receiving.They have provided the following email address for any ongoing issues:

england.spocskh@nhs.net

SallyRees
SallyRees in reply to Eloise81

Many thanks for the info and kindness, Eloise x

Eloise81
Eloise81 in reply to SallyRees

You’re welcome! I’ve got my own ‘fight’ going on right now too! 😢

SallyRees
SallyRees in reply to Eloise81

Sorry to hear that, Eloise!It’s a real injustice that the professionals we turn to for help continually fail us.

I wish you all the best in your battle. Keep strong 💪🏼

Sleepybunny
Sleepybunny in reply to Eloise81

CCGs 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/hospitals/...

I fought for more regular b12 injections. I've ended up with a prescription for 2 weekly. Whilst this was being sorted I actually bought my own with help on here.id been refused them a few times ...a long story then covid affecting everything.

It was stressful and so unnecessary but I was able to continue 'the fight' as I had b12 to inject !

I ve chosen not to tell the Gp yet as i tested out her reaction and she said weekly would be far too often .!!

However I'm pleased it's on my medical notes I'm having it 2 weekly.

I was put on oral b12 tablets but not as a replacement like you.

I again pleased on my notes tried to no avail.

In your situation.

I would continue with your SI

However I would write in phone in and say you are not able to absorb the oral tablets.

List symptoms you get when without or injection due

Say you've tried bit unfortunately not working for you.

I had to go through all 7 gps in the practice.

I get how distressing it gets .

Is it possible to change Gp or start afresh.

I would 'hold fire ' on complaint s at present.

It's a long process and your energy at present is best spent getting a prescription.

They will eventually reply but it takes so long.

Then you can carry on with dealing with their responses.

I ve had experience if this when I went through PALS about an a and e visit . They closed ranks and missed my point completely as actually it was about awareness and training issue not a complaint .

Gps I was able to move onto the next one.

Are you under a neurologist who is aware you need b12 injections?

I had to get a neurologist to write to Gp on 2 occasions.

Once to follow bnf guidelines of treating b12 with neurological symptoms.

You have no obligation to tell them.

Keep going to get them reinstated .

We shouldnt have to live with the fear of not getting b12 injections.

I hope you succeed .

Meanwhile stay as well as you can.

SallyRees
SallyRees in reply to Nackapan

Many thanks for your kind response.

So sorry to hear you’ve had such a struggle too.

When you try so hard to reason with ‘professional’ people and they stonewall refuse to listen the process becomes a real battle.

I think I’m going to persevere with requesting the reinstatement of my monthly injections.

Unfortunately I have only 2 GP’s at my practice and I’ve spoken to them both but as you can imagine they’ve got each other’s back and won’t break rank or go against one another.

In the meantime I’ll continue to I.M my B12 and summon up the energy to get this decision reversed.

Good health and wellness to you 😊

Parlay
Parlay in reply to SallyRees

I totally gave up fighting with my gp. Like you my gp that prescribed 8 weekly injections he retired and as the system has to be updated with a prescription every 6-12 months I was totally refused any more injections. I was told I needed a blood test to check my levels, I refused it saying I shouldn’t be tested as my levels will be ok as I’m already receiving injections and was deemed a difficult patient!!! Seeing as I already have no feeling in my hands and feet I just ordered my own and haven’t spoken with my gp since. I did worry to begin with but actually so many people are in the same boat that if we don’t look after ourselves no one else will at the doctors.

SallyRees
SallyRees in reply to Parlay

Sadly, I don’t think you and I are alone. I’m sure my doctors file sounds off sirens and warnings about being ‘difficult’.

It’s so frustrating when you know your own bodies needs but so hard to convey it to the folk that are supposed to help us huh.

You hit the nail on the head about the ‘difficult’ file. I now get odd looks after a GP or nurse has looked at the screen for a couple of mins to get a picture. The smile certainly fades :(

If the GP does not have the courtesy to treat you properly for PA, with two-monthly or three-monthly injections*, then I think they forfeit the right to expect full disclosure from you.

The question then is would your undisclosed self-medication compromise any other treatment they might recommend for any other ailment?

(e.g. when I got my COVID jab, it was important I disclosed that I was on Warfarin, and what my INR was).

But I can’t think of any, and if there are any, I still wouldn’t disclose my SI-ing until it became relevant.

*Yes I know these aren’t remotely often enough for most of us, but I wouldn’t hold it against my doctor, as long as (s)he gave these at least.

And maybe to a doctor that enlightened, I might hint about supplementing the regular surgery jabs 😛

I have to admit I’m feeling caught between wanting to prove the GP’s wrong and just thinking blow it! I’ll just take care of myself and to hell with them.

It shouldn’t be this way, but particularly at this (covid) time we’re faced with even bigger hurdles and I’m not sure I have the energy to fight them.

My GP stopped my 6 weekly injections when covid arrived, with the usual incorrect information. He did with reluctance agree to nurse instructing me to SI so I have purchased my own suplies which is quite liberating. I have asked GP to put in their records that I SI every 6 weeks. This is for life and I am concerned that with age I may not be able to physically inject myself. Many of the PA symptoms are the same as dementia so I don't want to end up mistakenly diagnosed due to only being able to get 3 monthly injections.

To be honest the ability to self inject as I get older stupidly hadn’t occurred to me. You’ve raised a really good point about informing the GP. Hmmm 🤔

This has been my concern too. Hoping a relative will be good enough to do it for me ;)

I had a huge battle to get the gp to agree to give me b12 in the first place! So I haven't told them about SI once a week 🤣 also with covid they refused to let me do it, so when they resume I'll have to deal with them then.

SallyRees
SallyRees in reply to Cali25

I think that’s how I’m going to approach it. Wait till normality resumes and then hopefully they will at the very least be easier to contact.

I'm in a similar position and am currently gathering all my information/research together to write to my GP surgery. They refused any B12 at all even though the BNF (their guideline) indicated that because of neurological involvement I should be treated with B12 injections every other day until symptoms disappear. Just as well that I took it into my own hands and get my own supplies to self inject as the BNF indicates!bnf.nice.org.uk/drug/hydrox...

Pernicious anaemia and other macrocytic anaemias with neurological involvement

By intramuscular injection

For Adult

Initially 1 mg once daily on alternate days until no further improvement, then 1 mg every 2 months.

I will have no concern about telling my GP all this and include the BNF guideline for doctors. It is their mistake not mine! I am following the BNF guidelines - they are not so they can't say much really. Maybe an apology? Ha ha!

Doesn't stop me from being very angry about it all though and wondering where I would be today if I had done nothing as they "reassuringly" advised.

Do you know what, you are spot on! Their ‘bible’ states what the should be doing. Thank goodness we’ve had the brains to take responsibly of our own health.

I swear this is about cost cutting. What I don’t understand it the logic, it’ll cause them more issues. 🤷🏻‍♀️

"include the BNF guideline for doctors"

Each CCG, Health Board and NHS Hospital Trust in UK will have their own local guidelines on treatment and diagnosis of B12 deficiency.

Some of these local guidelines differ from the guidance in BNF, BSH and NICE CKS links below. Some need to be updated

BSH Cobalamin and Folate Guidelines

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

BNF Hydroxycobalamin

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

NICE CKS

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

Some GPs may not follow BNF guidance because they are following local guidance instead.

I usually suggest to UK forum members that they track down the local guidance for their area of UK and compare it with BSH, BNF and NICE CKS links.

Find out the name of your CCG/Health Board/NHS Hospital Trust and search online for "name of CCG/Health Board Management of B12 Deficiency".

Top info, thank you so much for your help x

Thank you for those links. I was aware of them as I am a recently retired nurse but I will include all those links in any information I provide to my GP.

In my opinion the CCG certainly has way too much power. Doctors should be regulated by their GMC registration and be following medical guidelines and the ethics of that council for which they did their training in order to qualify as a Med PhD initially. Instead, their hands are tied with the CCG and Hospital Trusts to follow their guidelines regarding financial distribution and what their priorities are within their county so many essential or chronic cases are scrapped for false financial reasons. It's a no win situation that is headed by an organisation that knows nothing about healthcare and would be better off organising corporate companies like Tesco's.

So much wasted money with MRI's, Neuro, Haematology, Rheumatology clinics etc etc when a trial, at least, of B12 and other similar autoimmune treatments could so easily and cheaply be tried. Big pharmas - it is all so corrupt and unnecessary for patients that require genuine compassion and good, informative healthcare Anti depressants are cheap though and cause further deep concerns. Sadly, out of our hands.

I consider myself lucky that I have the knowledge to take this on board and conclude that I need to take on board my own results and self treatment. Many do not have this know how and it is of considerable concern to me that these people are just left to suffer and ultimately cost the NHS so much more financially in the long term - so short sighted.

I will follow up your suggested link re Health Board Management of B12 deficiency for my CCG but pretty sure I know what it will say already!

I appreciate your feedback and concern for so many who are suffering unnecessarily.

Here's some links to some local UK guidelines.

Most of these guidelines will have review dates and it's possible to comment on these guidelines as members of the public. Contact CCG or Health Board for info about how to. Local MPs and devolved representatives may be helpful.

Notts Area Prescribing Committee

nottsapc.nhs.uk/media/1330/...

Hull and East Riding Prescribing Committee

hey.nhs.uk/wp/wp-content/up...

Walsall CCG

walsallccg.nhs.uk/wp-conten...

Cambridge and Peterborough CCG

cambridgeshireandpeterborou...

Herefordshire and Worcestershire CCG

herefordshireandworcestersh...

Bath

ruh.nhs.uk/For_Clinicians/d...

Bury CCG

buryccg.nhs.uk/download/doc...

Published 2015 so must be due for a review although no review date given.

I hope that anyone reading this post is not in the CCG mentioned in blog post (from B12 Deficiency Info website) below which has a very unhelpful set of guidelines on treatment/diagnosis of B12 deficiency.

b12deficiency.info/blog/202...

There are other stories about CCGs on the above blog.

"So much wasted money with MRI's, Neuro, Haematology, Rheumatology clinics"

Couldn't agree more...I saw several neuros, a rheumatologist, an endocrinologist and several other specialists and kept asking could it be B12 deficiency but this idea was dismissed.

"Anti depressants are cheap though"

Yes...got offered plenty of those but they did nothing for me. I had to resort to treating myself and my mental health and physical symptoms improved tremendously.

I'm on the Oxfordshire/Gloucestershire border but my GP is in Oxfordshire.

I know of a number of people who are with the Gloucestershire GP Surgeries and have had a terrible time - refused/stopped all B12 jabs. Having said that, my Oxfordshire GP is clearly no better - hence my letter will be written and supported with relevant medical references/documents as back up.

Whatever happened to the Hippocratic Oath?

The passage from the original version of the Hippocratic Oath, “I will use my power to help the sick to the best of my ability and judgement; I will abstain from harming or wronging any man by it,” orders doctors to do their best in their job and not use their skill or knowledge to harm or kill their patients.

Sadly the Hippocratic Oath is not legally binding. It is more of an ethical signpost.

What happens if a doctor breaks the Hippocratic oath?

There is no “punishment” for breaking the Hippocratic Oath. However, breaking away from the core points of the oath can often lead to medical malpractice. Hopefully, most physicians follow the basics of the Hippocratic Oath not out a fear of punishment or lawsuits, but because it is simply the human thing to do!12 Jul 2017

If, when I was a registered nurse, I had treated any of my patients with similar disregard I would have lost my registration and been struck off the NMC register.

Hmmm . . . food for thought . . .

Cherylclaire
CherylclaireForum Support

The day after my first self-injection, I told my GP that I was going to self inject - in case she tried to talk me out of it. She didn't. I think because she'd seen me at my worst and at my best, had tried me on various frequencies, sent me to various consultants- and had recognised what was providing the most improvement. She asked me "When are you thinking of starting ?"

"Yesterday" I confessed.

My NHS injections continued, as did my blood tests: folate, ferritin, vitamin D, thyroid etc- but not B12 as unnecessary.

You need to have confidence and trust in your GP first though. It is a gamble.

Later, when I saw another GP, one who had never met me before, he completely panicked -and had my NHS injections stopped immediately, while my usual GP was on holiday!

Outraged at the time, I am now unaffected by this overreaction. I remain free to treat my symptoms as I see fit - without having to rely on nurses, GPs or consultants and their personal understanding of B12 deficiency.

That’s amazing that your treatment was cut off so suddenly, outrageous! Well done you for taking control, it’s not only a relief but it’s coupled with control and self satisfaction isn’t it 💪🏼😊

Yes I informed mine and she says she has noticed a big difference. And really pleased.

However, I was a Paramedic so fully qualified to self inject.

If you do tell them, you tell them how often and make sure they put it on your medical records.

This can be very helpful to NHS A&E department.

Am sure any relief off the NHS is a bonus right now.

NYC here. I absolutely would not inform your GP. You risk being labeled a "difficult" patient, or worse. What would be the benefit of telling them? Maybe document with a lawyer that you SI if you think you need to if you're worried about the future if/when you become unable to self inject.

Before my diagnosis, I was hospitalized, spiraling into dementia, unable to walk. Once they started loading doses, my mental acuity returned rapidly. Physical symptoms are taking longer. a few months after my release, though, they cut back my doses to once a month, nowhere near enough to stave off damage.

I bought my German supply asap and never looked back.

Good luck.

I’m sure I’m already dubbed ‘difficult’ 🤣 I’m so pleased you’re improving. I too bought my German supply and have enough for 2 years.

Make sure to check your expiration dates.

It’s the first thing I checked and I’m good until 2023. Purely out of curiosity, what are the consequences of using an out of date ampoule?

Other than the dose being ineffective, I don't think there are any, but that is a question for a doctor. I only mentioned it because I had been thinking about ordering more to stockpile my supply, before realizing that the ampoules have an expiration date.

I'm a little paranoid about running out. Before I began SI, I could not get a doctor to prescribe an injection more often than once a week, and I had to beg for that. This, despite the fact that it is documented that I was hospitalized for about a week before diagnosis, in the throes of dementia and unable to walk. So they know what can happen, and still denied me. It's absurd.

I absolutely need a daily injection. I recently attempted to go 2 days without. and it was a huge mistake.

I understand that my situation is extreme. Everyone is different. Thank you for your kind words.

Shocking that we are made to beg for what effectively should be pretty straightforward treatment isn’t it.

I too was hospitalised. Couldn’t walk straight or string a sentence together. So when my injections were stopped by an ill informed GP I decided to just take responsibility for my own health care.

The Hydroxocobalamin usually has a shelf life of two years, which thankfully has allowed me to stock up in these uncertain times. Here’s to staying well 😊

My (now retired) GP let me have a prescription for a monthly vial for si and luckily this has remained on my repeat prescription list so I’m better off than many.

However, I haven’t disclosed that I si twice weekly. I almost did to a Dr I thought had been very knowledgeable in other matters but when he noticed my monthly prescription he went to delete that and reinstate three monthly. I strongly objected and he left it at as it was but I decided not to reveal that I si as I’d rather have it on my records that I need a monthly injection than a 3 monthly.

So although I haven’t told my Dr that I si twice a week I wish I felt I could. I worry about being incapable of si in future through age, infirmity or being unable to source supplies.

I also worry that Drs will never understand the need for a more frequent injection regime if they feel all their PA/B12d patients happily survive on what the NHS provides. There must be a few thousand of us in the UK who si and I wish we could all agree to inform our Drs (perhaps when they’re less busy than they are at the moment though). At the very least it may be helpful if Drs could be informed of the extent of si in the UK as a challenge to their beliefs and prejudices.

SallyRees
SallyRees in reply to JanD236

I know that my own personal battle with my health authority is but a speck on the horizon. This blanket refusal from established drs to learn and to understand infuriates me.

Alas, although I love your suggestion that we group together to force a change I fear it’s going to take a lot more, much more. Alzheimer’s has existed for over 100 years but only relatively recently have they started trying to treat it. 😞

I think that you should inform your GP and tell them that you are following the guidelines. Only then will they realize the true extent of the problem. When I did so, they responded with a letter expressing concern. My husband wrote back very firmly explaining that we were following the guidelines and that my symptoms were responding. They backed off having covered themselves legally. Hopefully the argument will be won after the ongoing review by NICE.

SallyRees
SallyRees in reply to Retteacher

Let’s hope so 🙏🏼😊

Hi,

There are petitions to try to get B12 ampoules available over the counter in UK.

See links below for more info.

change.org/p/ian-hudson-ple...

One above has almost 96,000 signatures but still needs more.

b12deficiency.info/blog/202...

Signed 👍🏼😊 You should start a new thread with these links, sleepybunny. I think it’ll generate more signatures.

Wow! Just looked at the B12d blog in particular - unbelievable - so contradictory according to requirements /needs/wants in different situations and totally different guidelines. Totally baffling and outrageous! 😳😵🥵

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