Update: Read my NHS app. Nurse not only... - Pernicious Anaemi...

Pernicious Anaemia Society

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Nackapan profile image

Read my NHS app.

Nurse not only put a query with b12 medication.

But also put b12 frequency 2 monthly on my notes after Friday .

Another letter to practice Manager now.

1 No query as clearly stated in my notes what i have.

It was nurses interference

Her own query

2. I've never been on a 2 monthly frequency.

Ive asked for my notes to be amended.

GDPR (General data protection regulations )

The doctors write up accurate. Even mentioned The Pernicious Society I told him about saying overdose of b12 can't happen.

He had to add I had anxiety as treatment may be stopped as 'patient ' believes it still helping her !

He is asking a random neurologist for advice.

He also said I was skeptical if they would have s full understanding on b12 issues.

(Too right as dorsntv even know my case)

Actually hate having to write yet again but I'm not leaving 2 monthly b12 injections on my notes

Needs amending

19 Replies

Another unnecessary interence which has led you to yet another battle to get your B12 reinstated back to what it was. 😱 My B12s are 2monthly.

I am in the same boat my gp is sending me to a neurologist I have never seen before. Infact when my dr wrote him I dont even think she mentioned my low B12 and most certainly hasn't done any test's to find out if I have pa !

I can see you and I being labeled with fibromyalgia if not already or functional overlay as a cop out.

This ongoing battle seem's never ending but your right it doe's need to be ammended. That ruddy nurse needs to keep her nose out of what doesn't concern her and I were under the understanding only gp can change your meds.

Poor you. 🤗

Nackapan profile image
Nackapan in reply to Jillymo

Thanks for your reply. Yes I've seen ? chronic fatigue

? MH

? Neuro dysfunction

? Everything apart from? PA

Also been told panic attacks in a snd e before very low b1e found as actually tested gir the first time ever !!

I'm not being sent to z neurologist.

This doctor is just getting advice from one I've not Meg

and dirxng know my case.

Yes r....nurse should have just given me my prescribed injection .

I think as adrenaline running ag time if b2e injection finally given after an hour it's hac a strange effect on me.

Wired and inner jitters .

Not had that fir over a year!!

Hope you get on okay 👍

Sleepybunny profile image
Sleepybunny in reply to Nackapan

It seems so unfair that you're continually having to fight for adequate treatment

Links about amending medical records



Yep.... I was branded with CFS/ME/Fibromyalgia. Job done.... Grrrrr.... why are they doing this????

No training or interest in PA . Autonomic disorders, all terms of presenting symptoms .Rather than cause

I havecsjsi had content battles refusing antidepressants fur depression.

Mot off label fir pain relief .Even nearkyy convinced me once.

Even got as far as paying gir a prescription.

Then on getting home thought no actual anyone who's had alot illness pain will be low at times coping with if .That is 'normal'

If anything tge medics should acknowledge how well you are coping

Seems they have to try and pug you on something treating symptoms.

Quite frankly its a mess. You are sent round in circles with boxes ticked and very rarely listened to.

Clinical skills are being lost .

Continuity being lost.

Communication between consultants non existent

How will they put a jig saw puzzle together

Mg daughter sent round for years.

B12 tested after many years of suffering .

It was the root cause!!

That makes me sick to the stomach still how she could've had a different outcome.

Lost her teaching career



The Go apologised for missing neat non existant b12 folate ferritin macrocytic anaemia .

Did he fight to include b12 on all bloods


Sallyannl profile image
Sallyannl in reply to Nackapan

Ticking boxes does not mean job done !People walking around, participating in life

Enjoying life .... is JOB DONE !

Unfortunately it's an all too familiar story with nearly all illnesses.

I can only assume it's cheaper than scanning or do further tests to just stick a label on us, as you rightly say job done.

That's a double Grrrrrrr 😡

Yep and on to the next. Job done and no one is healed

I think those with the chronic ongoing illness without a definitive diagnosis end up in wrong 'boxes'.It worries me that you have to be so assertive . Sometimes impossible if too ill. To get 'heard.'

PA / B12 symptoms mimic so many things...they have to rule out

With a diagnosis at least a care plan and reviews.

After the damage done the care for my daughter has improved as has a diagnosis

It's the early testing and listening.and acting Saves quality of life and money!!

So a better diagnostic 'tool'

Better recognition

Better training

A and E being used yet again as GPS not available

Morale is low

Managers with no medical backgrounds in my opinion does not work.

Like IT systems set up with no clinical experience

Acute care thank goodness still working

I think we are very low down on the list

My husband has type one diabetes. No review nothing for 2 years.

That used to be well monitored ???

Agreed in every aspect. They are happy to hand out insulin which if used inappropriately is fatal but not B12 because pharma will lose out financially in a huge way. Paracetamol ibuprofen are spoon much more detrimental to the human body but you are free to buy them anywhere for pennies. There is no rhyme nor reason to medication and treatment just stats

Me too,

Fibromyalgia, functional neurological disorder. Not particularly bothered with regards to that as I’m quite happy treating myself in the comfort of my own home.

Exactly.... take control and make your own adjustments. It's the way forward to recovery and normality. Especially hygiene..... at least we know we are washing our hand and our environment is clean before we SI.

Links that mention B12 deficiency being misdiagnosed as ME/CFS/Fibromyalgia



New NICE guidance on treatment/diagnosis of ME/CFS (UK document) was published in October 2021


Section 1.2.3 briefly mentions that doctor should use their clinical judgement to decide if B12 and folate should be tested.

Hi Nackapan,

I’m am so sorry, it’s absolutely farcical. I’m sure you have got everything

under control but to you and others who may encounter this. On date and

time, Dr Whoever at whatever hospital, clinic, medical centre agreed with

you a plan of care (NHS Constitution-patient at heart of everything). The

rationale (reason for any treatment/intervention by a health professional)

was because you have symptoms a, b, c, d, e which severely impact your daily

living activities. Without this frequency, these return but you still live with

with x, y, z symptoms which affect your quality of life.

Now, the other point - someone, somewhere has written 2 monthly

frequency - Human error. NHS notes have to relevant, contemporaneous (up

to date and accurate). So, the mishandling of personal data, which

happens a lot in the NHS. Can also be a matter for the Information

Commissioner’s Office.

Best wishes

Nackapan profile image
Nackapan in reply to Narwhal10

Thank you.Yescive just asked them to amend my notes as putting 2 monthly b12 big error that will cause more problems .

Yes GDPR was mentioned as update was in 2018.

Wasn't aware of involving the commons office.

Thank you.

Hopefully can just be amended. J found another big error

Stating I DNA a COPD appointment.

1. wasn't aware i needed one

2. No appointment

3. I don't DNA ( do not attend)

Narwhal10 profile image
Narwhal10 in reply to Nackapan

Gosh what a catalogue of errors. If you had an appointment letter you’d have gone.

Link to ICO (Information Commissioner’s Office)


ICO Wales Office


ICO Scotland Office


ICO Northern Ireland Office


Cherylclaire profile image
CherylclaireForum Support

Oh dear Nackapan ! I'm so glad that I haven't got an NHS app.

I have spoken about this before but it is really clear that a chronic condition firstly and desperately needs continuity with a named GP of your own choice, someone you trust. Secondly needs face-to-face so that observations can be made : a GP to whom you are familiar will notice if you are worse. Awful that this is not now available to any of us.

Being sent for tests, scans, consultant appointments is stressful, usually disheartening and generally ends with more answers to single symptoms: IBS explained away my daily diarrhoea and my SIBO breath test results, depression explained away my fatigue and mood-swings etc, Burning Mouth Syndrome explained my sore/coated/pie-crust tongue, having smoked in the past explained away my dizziness, B12 addiction explained away my need for frequent B12 .... until there is nothing left to analyse - again, requires a trusted and tenacious GP to see through this mess.

Nurses' personal opinions certainly not required on your notes. I remember one of the nurses, miffed that I was then getting 2 NHS injections a week, saying "did you tell the doctor you wanted this or did it come from a consultant's letter ?" (- like I had any influence !)

All were reluctant, even my favourite one admitted she had Googled "B12 and toxicity"- shame the others never bothered to inform themselves in this way, as afterwards she was more than happy to inject me. Another showed sympathy for my "poor arms" despite having told them time and time again that I couldn't actually even feel whether I was getting injected or not (and sometimes had a creeping doubt that they hadn't done it !)

Keep on with this. You've come a long way but need to get the record set straight.

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