I am steaming!

[pramela]

Just looked at my medical notes as looking for some test result, some idiot doctor has just posted this comment:

History: Having B12 injections 6 weekly - unusually frequent. Notes just say cobalamin deficiency no correspondence to clarify cause, suggest let TW decide if OK to relax frequency to more typical 3/12ly or even suspend?

This GP has just started in my surgery apparently as a gp trainer.

I am so angry that this man can make such a judgement on my life without speaking or even knowing me. Even my gp (TW mentioned in the note) has no idea and has tried to stop my injections before but didn't get very far with that one. He has been told that I don't need my levels checked as I am on treatment but continues to check my levels every blood test he makes me have.

This is what was the message given to him in blood test results back in 2018:

Serum vitamin B12 level

Serum vitamin B12 level > 2000 ng/L [180.0 - 866.0

Above high reference limit

Serum B12 monitoring is unnecessary when patient is receiving parenteral therapy.

I got injections up to every 6 weeks because I literally crawled into my then docotor's surgery begging for more frequent injections and he agreed and put a note on my file to that effect, or so I thought. This was after some uppity nurse tried to tell me that I couldn't have them this frequently and reported it. I had an argument with a locum doctor she reported it to about it, she had to apologise to me.

T

So, I am waiting for the letter stopping me injections.

[Nackapan]

I'm so sorry to hear this.I've seen similar on my notes.

Even sarcasm with ? MH problems, anxiety ect.

.my present prescription is 2 weekly.

Two neurologists have played this now when nurses meddled and senior doctor covering his back by contacting a neurologist.

I've recently sed

'This frequency to be reviewed yearly??

What's going to change ??????

There never asked what i eat.

What I drink or offered any other explanation for my symptoms.

My old surgery closed.

1 out if 6 at least listened and ordered loads of tests and a brain MRI abd referral to neurology.

She was convinced for some time i was clinically depressed.

That's when continuity helped.

She then believed I wasn't depressed and saw improvements on eod b12 injections.

A G.p trainer.

Oh dear

Write a letter . Mention PAS has information for professionals.

How dare he .

[ClaireWF1346 in reply to Nackapan]

I can feel your frustration! How dare they indeed. And it's so exhausting to battle them when you're already carefully balancing your physical and emotional energy to enjoy some standard of life. They tried to keep adding a B12 test with my last co-factor bloods and I had to reply to have it on record that I do NOT consent to them taking my blood to test for B12.

[Elainedean in reply to Nackapan]

Ho did you get to see your notes please ?

[ClaireWF1346 in reply to Elainedean]

I'm not sure if your question was for me...but my surgery uses SytmOnline which allows you to access your patient record (notes), test results, request repeat prescriptions etc. The reception team should be able to advise at your surgery as I think it's common practice for surgeries to have these now.

[pramela in reply to ClaireWF1346]

This is how I check my records. My gp doesn't even write correct records, he never puts in my notes what problem I have seen him about. When I questioned this with the person who deals with this I had to put the phone down on her as she was lying to me.

[Nackapan in reply to Elainedean]

I've got sn NHs app.Used to be able to access everything.

Its limited now .

Surgery sets what you can see !!

I've skso requested full medical notes .

That's still not happened a yesr on .

It was a SARs request.

When I.T replaced paper notes summaries should've made to transfer to it system.

I've got the last few yesrs only so far .

After ??10 years I think hospital notes gone/archived I don't know where.

[Sleepybunny in reply to Elainedean]

Patient Association article - Seeing your medical records

patients-association.org.uk...

[Regenallotment]

Deep breath and take them on! Speak to the practice manager, put it in writing. They must not get away with this. 🌱

[Sleepybunny]

Hi,

I'm sorry that you're going through a stressful time.

Have a look at my recent thread below. Might be some useful info in that as it mentions people having B12 injections stopped.

Is this the tip of the iceberg? NICE B12 deficiency guideline.

healthunlocked.com/pasoc/po....

[Cornwaller]

It is your blood. If you withdraw consent for b12 test then he cannot do the test.

They sound awful and you deserve so much better.

[Sleepybunny]

Patient Association article - Shared decision-making and informed consent

patients-association.org.uk...

Also see thread in my other reply.

[Cherylclaire Forum Support]

Why would anyone seriously imagine that we are all the same, just on this one condition, as regards treatment. Any GP must surely have noticed by now that we do not all present in the same state, with the same symptoms or severity of symptoms.

If GPs need training in-house, perhaps the best way to be of value to a practice (and save money) would be for a GP trainer to point this out - and continue a frequency of treatment that maintains an acceptable life quality. Don't mess with success.

Crawling into your surgery would count as "not there yet" regarding life quality, surely - a strong indication that more is required. That should be on record.

If 3/12 was our collective answer to our varied problems, there would be no need for this forum and no-one would need to self-inject. Look in the right-hand column on this page and go down to the heading Topics, subheading All things Pernicious Anaemia Society where there is a survey with results showing how often we think we need B12.

I am sorry that the GP trainer feels obliged to save costs by "relaxing" or suspending your B12 frequency. He should be concentrating on why your GP keeps ordering unnecessary tests for a managed condition. If your notes only say "cobalamin deficiency" without mentioning a cause, isn't that their failing ? More training opportunities required in that area, then !

Suspension of a treatment would indicate that your condition no longer exists: how have they determined this if they have no record of the cause ?

[Oneash]

Suggest this Dr. TWit goes for some proper professional development on B12 by going to a CluB-12 conference. club-12.org/

Big hugs.

[Hockey_player]

I saw a talk where the speaker (a doctor) explained where the once per 3 months guideline came from. It was based on some math that applies to healthy people and not those with pernicious anemia where the mechanism for recycling B12 is not working. I hope you keep getting all the B12 you need.

[Wwwdot in reply to Hockey_player]

I think that was Dr David Morris’s podcast with the B12D society.

[Fluffyfloo]

It really seems like these doctors and nurses actually HATE patients.

[Myoldcat in reply to Fluffyfloo]

Or they are more concerned about following surgery protocols than actually listening to and caring for patients. One (skimpy) size fits all, so goodness help you if it doesn't suit you!

[pramela]

I love people on here, have a problem someone always has an answer. Thanks to everyone who replied.

[pramela]

Update: My records, that I checked today, have a note on there from !st November, that they have stopped my 6 weekly injections to now 8 weekly for A YEAR and then they wil be looked at again.

Coded entry Has authorisation for medication under PSD (XaZ08) - MAINTENANCE DOSE: I authorise HYDROXOCOBALAMIN 1mg/ml by IM injection to be administered to this patient once every 2 MONTHS for Vitamin B12 deficiency for 1 YEAR from today (and to then be reviewed by a prescriber).

[Myoldcat]

Clearly you didn't consent as you weren't even asked!