Yet another GP trying to stop B12 injections

[ClaireWF1346]

I have been 'lucky' to get B12 ampoules on prescription but I suspect (although I'm not surprised) that my GP is showing signs of withdrawing this prescription. I have just seen on my patient record that a GP at my surgery has sent a letter to the B12 specialist in Cambridge to ask:

1. What is the duration of Claire`s SC B12 injections?

2. How often do you recommend that her bloods be checked? Claire has asked for this to be checked every 3 months – B12, Ferritin, Vitamin D which we do not feel is needed or sustainable. I would be interest to see what you think, perhaps yearly?

I have NEVER asked for my B12 to be checked. In fact, I had to tell them in very plain terms in July that I do NOT consent to a B12 test (and the reasons why this test is inappropriate). They can't even interpret my request accurately (for folate, vit D and ferritin tests), despite it being there in black and white! I have also not asked for these every 3 months, but my folate went from 4 to <24 in the three months of initial supplementation, so it seems like a good time frame to re-test following adaptations to my co-factors. The first blood test at three months after starting SI was requested by the specialist.

I checked the letter from the specialist, which my surgery has a copy of both physically and electronically, and it clearly states:

"The treatment is B12 injections but it is also very important to pay attention to iron, folate and Vitamin D levels. B12 injections (hydroxocobalamin) every other day until you are better. You will need B12 injections for life. We can use blood tests to monitor iron, folate and Vitamin D and this is very important when treating B12 deficiency."

Seems pretty clear to me, but they obviously seem to know better at my surgery, despite them offering absolutely no investigation into WHY I am suddenly deficient in B12. I am not the only one to be treated like this, but yet again, I find it absolutely disgusting how we are all being treated. My Parliamentary and Health Service Ombudsman complaint now has a caseworker but it could be a long wait before anything is done. Meanwhile, they continue to neglect me. It is just so frustrating and draining!

[Jillymo]

I wish I knew what to suggest but so many are facing the same battle. It is both mentally and phisically draining. My medication review is in Jan, I am waiting for the swines to try and stop mine.

Make sure your case worker puts everything in writing.

[ClaireWF1346 in reply to Jillymo]

It really is draining and the last thing we need. I've started feeling more like myself after 7 months of SI and without consultation or even just asking me how I am feeling these days they are looking to stop my injections and refuse the co-factor bloods tests. The caseworker is currently reviewing the information I submitted and will be in touch...but it could take over 6 months. It is just so unnecessary and I can't help but feel that they are trying to push people to go private.

[JanD236]

I might be wrong but I have a feeling that if a folate test is requested that B12 is automatically tested too. Maybe this is why the GP mentions B12?

[FlipperTD in reply to JanD236]

Once upon a time, it was standard practice to do B12 & Folate because an undiagnosed macrocytic anaemia could be caused by either, so it made sense. Then, some labs used methodology that did B12 & Folate simultaneously [Simultrac S assay kit] but nowadays, the tests are performed separately, and can be requested, or not, for whatever reason. So you're partially right, but not entirely!

Stick with it. Good luck.

[ClaireWF1346 in reply to JanD236]

They tested folate without B12 in July after they added it on and I withdrew my consent. In my opinion, they are simply demonstrating their lack of awareness of this condition since they don't understand how important the co-factors are. If they test B12, it will be sky high = more "evidence" for them that I shouldn't have my prescription anymore. Depsite having it in black and white from the specialist...

[Gambit62 Administrator]

Under GDPR you have the right to have incorrect information removed from your records. As yu are saying that some of the note is incorrect I suggest you point this out to the surgery and ask them to correct.

[Sleepybunny in reply to Gambit62]

I found some helpful links when I searched online for "correcting mistakes in medical records UK".

[ClaireWF1346 in reply to Gambit62]

Thank you. It is so draining to be fighting them and it leads to anxiety when I do have a face to face with a GP. But I will point out this error. I did email the specialist myself to explain I did not ask for B12 testing so that he knows it's not coming from me.

[ClaireWF1346 in reply to Gambit62]

Thank you. I will see if the specialist corrects them first and if not I'll ask them to correct it.

[Wwwdot]

Hi Claire

Frustrating is an understatement but yes I agree.

I have changed my GP and put in a complaint to the practice and my Integrated Care Board.

The GP has responded to my letter of complaint by cherry picking their actions over the last couple of years that demonstrate an element of care but basically say they did not do more as they were aware I was under the care of a specialist.

Yet, they did not prescribe me any B12 after my 6 loading doses despite my request nor did they arrange gastric screening as per NICE guidelines despite my request. In fact the GP did not share the letter of diagnosis from the same specialist you saw with the gastroenterologist- I had to do that even though the GP had a copy. Rexz helped me write a letter to get the screening I needed - thank you again my friend.

The parting shot from the GP was that I had two negative IFAB tests and no conclusive test to confirm PA which whilst true is also true for most people. (The specialist we both saw says only two of his 2000+ patients tested positive in IFAB test)

The absence of a positive test does not negate the presence and suffering of PA. Furthermore the GP cited my cessation of IBS symptoms through diet and self treatment as evidence that I could not have had PA in the first place!

Definitely a no win attitude It is beyond me how a professional care giver can be so obtuse and narrow minded and arrogant. I hope my new GP delivers what he promised since he at least recognised that I need support to manage my progression of my illness.

🤗🤗🤗

[ClaireWF1346 in reply to Wwwdot]

Cherry picking actions sounds very familiar! As does the instistence about the negative IFAB test meaning no PA. Did your complaint to the ICB go anywhere? If this continues I will see if I can move surgery but my neighbour is at a different one and has also been fighting for a steroid injection that stops her shoulder agony...and she's 86.

[Wwwdot in reply to ClaireWF1346]

Hi Claire

The ICB complaint is at early stage - 3 week delay in my part as I had family issues and was unwell after the gastroscopy so dropped the ball. Trying to get back to active management but going to have a rest I think until after Christmas as I am mentally tired.

I have plateaued at the moment in 2-3 injections a day but had a stark reminder around 4am today when I awoke with a panic attack that my body is not yet ready for too many 2 a day days. Had two in the trot … when will I learn!!

Well done for formalising your complaint. I find it gets me down realising that so many people with unavoidable illnesses are having to compete against lifestyle induced illnesses for limited resources.

But clearly I have a glass half full lens today - I put it down to skipping injections. Hopefully will bounce back in next few days

🤗🤗🤗

[deniseinmilden]

Firstly: well done! Good on you.

Secondly you are able to write eloquently and you need to get the above observations back to them in writing.

I strongly suggest you use the text boxes in an eConsult to write to them (just basically ignore the other bits you have to do and just tick reasonably relevant boxes to enable you to progress through the form to the next text box), and at the end, select the "please email me a copy of my answers" dot so you have a copy of what you have written. This should go straight onto your notes and you can go into your surgery and ask the receptionist to check with you that it has!

This was how I was advised to deal with a problem at my surgery, by one of the better receptionists, and I have found it has been effective.

Good luck!

Don't give up hope - we're all with you!!

[ClaireWF1346 in reply to deniseinmilden]

My surgery uses SystmOnline and when I send a request in (their preferred method and mine now, for transparency) it goes on to my online record. Is eConsult a different type of surgery system?

[Sleepybunny]

Hi,

Just wondered if you'd contacted the specialist to say your GPs letter was incorrect and if the specialist knows that you have withdrawn your consent for b12 to be tested.

[ClaireWF1346 in reply to Sleepybunny]

The first thing I did! I didn't want the specialist to think it was coming from me! I am going to screenshot my patient record which shows clearly I have only ever asked for folate, ferritin and vitamin D, citing the sections from the specialist's letter that state they are needed and why. My main concern is them stopping my prescription as it seems they are itching to. I haven't seen a GP about this condition since April (just after I started SI), so they have no idea how I am.

[Sleepybunny]

Good luck ClaireWF1346,

We're all thinking of you.

For anyone else in UK having similar issues.

ICO article about data correction.

ico.org.uk/for-the-public/y...

ICO Wales

ico.org.uk/about-the-ico/wh...

ICO Scotland

ico.org.uk/about-the-ico/wh...

These threads may have some useful info.

Patient Safety

healthunlocked.com/pasoc/po...

Thread discussing recent increase in UK forum members having B12 injections stopped or swapped for high dose oral B12.

healthunlocked.com/pasoc/po....

[holyshedballs]

Claire,

I was in the same position as you and was on the path to an Ombudsman complaint

BUT

the surgery relented and gave me my monthly B12 injections

Therefore my only comment is to hang on in there. maybe ask for an interview with the doctor to make clear what your treatment and tests are. if you make the first move and they refuse, this will go against the surgery and can be brought to the Ombudsman's attention.

I would take someone with you if you choose to do this.