Marie

[Royalblue1]

My doctors have just done B12 and folic acid blood tests, I was diagnosed in 2002 with pernicious anaemia. I have just been told that both results are high and that a doctor may want to speak to me. There is rumours that the surgery are trying to cut back on prescription and I am worried they will stop my b12 injection and folic acid.

[Narwhal10]

Hi Royalblue1,

You had a definite diagnosis of PA in 2002. You should have access to your Medical Records of the actual time, date, by whom and where of that diagnosis.

You should also have entries in your medical notes of time, date and by whom gave you each loading dose of 1mg/ml of Hydroxycobalamin. Each injection is a separate ‘event’.

Then you have a record of when you were put on a maintenance dose of hydroxycobalamin injections every [however many] weeks. Then every single injection are other ‘events’ in your Medical Records.

The same for Folate deficiency - it was found at time, date by whoever at whatever Surgery and you received prescriptions from Practice which stated dosage and were signed by whatever doctor. For whatever length of period. You took them to whatever pharmacy which dispensed them. So, they too have Records on their computer system of what has been issued to you.

Unfortunately, P.A. is poorly understood and the British Haematological Society states that once treatment has commenced it is pointless in testing levels. I do hope you are a member of the PA Society. It is worth providing their literature regarding retesting and it is worth knowing the Roles of people who work at your Practice.

Obviously, there are the GPs, there are Practice Managers and there are Prescribing Clerks. A Prescribing Clerk is an administrative role and part of their remit is to ensure the doctors are writing, signing medication accurately and correctly. Doctors do get tired and make mistakes.

So, as yet, you are unsure if they will stop your injections but your Medical Records are evidence that you need injections and if you know the ‘system’ then IF it should result in them attempting to stop injections, then you know HOW it can be dealt with very swiftly and effectively.

Your Medical Records are legal documents.

🐳

[Dee011960 in reply to Narwhal10]

I'm so sorry to hear your gp is doing this, as a follow PA patient, I was diagnosed in 2003, however due to changing surgeries and my original GP retiring, my PA diagnoses was lost! I keep having to fight for my injections throughout the Covid shutdowns and the trend to pass patients onto tablets, as it's been my experience from surgeries that you get get some absorption, but it doesn't stop all the symptoms coming back! I had to threaten suicide, as to get my injections back at every 10 weeks, as I tild them I can'tlice with the symptoms anymore. This is now in my records, but also the senior GP had to review my whole records and now there is a record stating not to stop injections! I don't believe in suicide, but it made the GP surgery look at their duty of care for their patients! Unfortunately, some people have a low B12 due to being vegetarian or vegan, they should possibly supplement their diets with B12 tablets. As you know if you have PA you cannot absorb B12 naturally via your stomach and the injections are your lifeline to having a better quality of life! Why can't this be done by the Pharmacist, if the GP surgery is finding this service to their patients is using up too much clinic time! I hope you get sorted with your GP ASAP.

[Narwhal10 in reply to Dee011960]

Hi Dee,

I am so sorry to read. Unfortunately, what most people do not understand regarding this “loosing PA diagnosis’ are actually Data Breaches.

There are far easier ways than threatening suicide. Each Integrated Care Board or Trust has a Data Protection Officer (DPO) and Information Governance Team. Information Governance (IG) is a massive legal framework surrounding data.

All, a person has to do when a GP Surgery looses diagnoses is remind them of these laws :-

a) Access to Health Records Act (1990).

b) Caldicott Principles (Published by the National Data Guardian for Health and Social Care on 8 December 2020).

c) Common Law Duty of Confidentiality (The U.K. Caldicott Guardian Council).

d) Computer Misuse Act (1990).

e) Confidentiality : NHS Code of Practice (Information Security Management - NHS Code of Practice published on 7 November 2003).

f) Data Security and Protection Toolkit (DSPT) (Published by the Department of Health and Social Care on 30 October 2017. Last updated 22 January 2018).

g) Freedom of Information Act (2000).

h) Information Security Management - NHS Code of Practice. (Published by the Department of Health and Social Care on 20 April 2007).

i) Network and Information Systems (NIS) Regulations (2018). (Published by the Department of Digital, Culture, Media & Sport on 20 April 2018. Last updated 4 January 2023).

j) Records Management Code of Practice (2021). (Published by the Department of Health and Social Care on 29 July 2016. Last updated 10 August 2021).

Inform ICB’s DPO and I.G. Team and GP surgery that the computer system has failed to retain your diagnosis. You can report externally as well to the Information Commissioner’s Office as well. I doubt very much a GP Surgery would like to pay a whacking fine to the National Audit Office for loosing your diagnosis.

If £5,000.00 suddenly grew legs and walked out of your bank account, it would be investigated pretty sharpish. It is exactly the same principle.

I tell everyone on here to apply for their Medical Records in hard copy for a reason. The NHS computer systems are rubbish.

Best wishes.

🐳

[Dee011960 in reply to Narwhal10]

Yep I have a copy of my medical records, however it does not show the telephone conversation I had with the GP or the telephone conversation the GP had with Haematology department. I do know that my original GP surgery was using a different electronic system to what they were using when I transferred from there. Also, they merged two surgeries into one. This is when data goes missing, as your full record isn't held on the 'current' system' and is held in an archive! I worked for local council but seconded into NHS mental health services, they had 5 different databases, this didn't help the patients as it kept losing vital information regarding their care and who should pay, some patients who have been put on S.3 are entitled to free aftercare!

My issue is I had gastritis at 18 and then had 6 stomach Operations by time I was 32, my ileum has been damaged and according to my gp at the time, said it will not be able heal and work again. So this has been the cause of my absorption problem,

But thank you for pointing out somethings I didn't know

[Narwhal10 in reply to Dee011960]

So, when records do not show something that it should, there is a problem. It needs to be reported and rectified promptly. They are your records. I am unsurprised by 5 different databases but it all impacts Patient Care. I did make fun of one doctor because they could not get the computer to do as they wished it to. With a cheesy grin on my face, I told them to press ALT, CONTROL & DELETE.

I am so sorry to learn of your illness which started at a tender age. Plus, all the operations that you have had to endure. It must have been really hard going and obviously still is. Unfortunately, many of us have really been ‘through the mill’ and still live with our diseases and illnesses.

Best wishes

🐳

[Nackapan in reply to Dee011960]

Sorry you had to go to such drastic measures to get your your b12 prescription.

I have had to fight to keep my b12 prescription of 2 weekly .

I have an absorption issue.

Which needs the exact same treatment as a PA diagnosis.

As so much is unknown and there's not a definitive test for PA they really shoukd go on

'Clinical response '

Original reason for prescribing b12 injections

In my case a never low serum b12 level .

Severe symptoms

Nothing else found to treat .

I wasn't given an IFA test but had a parietal cell antibody test which was negative .

I knew very little about the complexity of b12 at the time in 2018.

Your comment about pharmacists in theory makes sense.

However it was the pharmacy that cancelled my prescription twice !! ?

Then prescribed it straight to the surgery ,one ampoule at a time for the nurse to administer.

Caused mayhem.

A requested Gp appt not necessary but insisted by them to reinstate my prescription by Gp.

Worrying ax not net this Gp before !

Told sorted .

Then it happened again by pharmacy .

Ended up a computer system failing individual prescriptions of b12 !

So this thing of truing to stop b12 is across the board .

It's the ignorance of the condition.

Not understanding the unreliability of the PA test used .

Then when having a PA diagnosis ignoring that anyway as test not difinit ive!

Depending on timing of IFAB test and possibility of a false positive .

Another get out clause if legally challenged .

It shoukd be down to good doctors listening .

Ruling put other possible causes.

Recording the response to b12 Injections .

I've been labelled with all sorts but all I've needed is regular b12 injections .

All I'm on .

On no other meds previously.

I'd be a good case study .

Nothing to complicate .

As several of us would be !!

[Sleepybunny]

Hi,

Welcome to the forum.

I'm assuming you're in UK.

I left a reply with some useful info in the forum thread "How quickly would B12 Levels drop post injection?" above yours.

Have a look when you've got time.

[Nackapan]

Happened to me . All patients on b12 injections were sent a blood form and letter.In an old post .

I refused to have the blood test and made a Gp appointment.

Outrageous thus is going on .

Just shows the ignorance .

The stress it causes is shameful

[Twaddletop]

I truly don’t understand this Royalblue1. I’ve heard these rumours too. Many years ago when I was first found to have P.A., my GP told me quite bluntly that without injections I would die. Is the NHS planning mass murder?

[Narwhal10 in reply to Twaddletop]

Twaddletop,

I do hope you know the time, date, GP and it was written on your notes about your injections for life.

As far as I am aware the NHS has no plan regarding causing harm. It is at breaking point though having dealt with COVID, strikes by ambulance workers, consultants, junior doctors and nurses. All of which impacts Patient Safety.

Therefore, I feel a calm, objective approach is far better IF people have their injections stopped or reduced. At present, it is hearsay and speculation. However, people can plan for the event. One of the easiest options is to ask GPs to teach patients how to self-inject. This is because one of the biggest costs is the nurse appointment. If the footfall through a surgery is reduced, it would not only save a lot of money and time but it also empowers us.

It is far more effective if people may start preparing for that conversation.

Best wishes

🐳

[Twaddletop in reply to Narwhal10]

Thank you Narwhal, you’ve put my mind at ease. The only place I’ve heard rumours of injections being stopped is here. The NHS is on its knees and I understand their need to cost cut and to save time. I think my response was in a way due to a comment made by the GP who administered my first injection many years ago. I had not expected the sting and the doc told me I’d best get used to them because the alternative was death. That was my first inkling that P.A. was a serious, for life kind of condition. It really has stuck with me because I was a young woman then and had just found out I had PsA too.

[Mysteriillness in reply to Narwhal10]

Hello, Im a district nurse and most definitely everyone where I worked had their B12 injetions stopped during covid (probably unless you could effectively fight our corner which many patients cannot). They tried to stop my mums, who has dementia, and give her tablets but I asked if I could give them as a DN and they agreed. The message was that new guidance said tablets just as effective. I see in work people are gradually being restarted on them often after a hospital admission or something to review them, ut many elderly frail and confused people may well have been left without Im sorry to say. I feel these days many GPs may be looking for time saving and cost cutting and I'd say NICE maybe too.