This group has always been very supportive, particularly when I began my B12 deficiency ordeal. I was hoping I could get some advice on a very specific issue I am having with my maternal grandmother, who has had Pernicious Anaemia for as long as I can remember and likely where I inherited mine from.
My Grandmother, now 88, was moved to a care home last year after a series of falls in the night and mobility issues (stemming from Arthritis and Osteoporosis). Since moving there, her cognitive decline has been rapid and conversations are becoming a struggle for her (repetitiveness, forgetfulness, insists certain things happened which have not etc). She will call family members most evenings as she is confused and doesn't know where she is, or what's going on and generally very distressed. She often starts telling me she needs to go home and begins to describe her childhood home, with no recollection of where she has actually lived for the past 65 years. To the amazement of myself, the family and the care home, she continues to 'pass' dementia tests. We've been told there's 'nothing to see here'.
Coupled with her overwhelming fatigue, diarrhoea and mobility issues, I made some enquiries and I have been shocked and appalled to learn that when Nan became a resident and registered at the care home's registered Practice, they stopped my Nan's B12 injections, despite her Pernicious Anaemia and despite her having had them for decades... simply because when she registered, her blood test showed her B12 was now within range. After I made a fuss, the care home arranged for her to be retested and even though her B12 had dropped, they argued that it is still in range, so she no longer has 'the anaemia problem'. Regrettably, I do not have access to any of the figures and no one seems to be able to quantify these to me.
There is great difficulty in this, because although I have POA for Nan, the correct procedure is to go through the home and they tell me their hands are tied by what the surgery is saying. Despite me turning up to the surgery in person and phoning them directly, no one will speak to me. I feel like I'm failing Nan
She has not had a B12 injection since May 2022, which to me is no coincidence that this was around the time of her rapid decline. She is suffering as a result of this and it upsets me to think that these may be her final few years.
At this point, I think all I can do is take her out with me on day trips to privately give her B12 injections, but this will result in the surgery thinking that they are right. It will also make me unpopular with the care home who are responsible for her medication. I could not bear to think of this happening to another person, who doesn't have someone to fight for them or recognise a B12 deficiency.
Are there resources out there that can help me? I am aware of the NICE guidelines, but how do I enforce them? Is there someone with a bit of clout, who could speak on my behalf? Perhaps hold the surgery to account? How can I get the surgery to take me seriously when they won't even speak to me?
Please, I am desperate for any suggestions. She is so important to me, she was paramount in my upbringing and I want to return the favour and make sure that she is happy and healthy for the rest of her days.
Kind regards,
Tara.
Written by
TMur1990
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Your dear nans story has reduced me to tears it is of no wonder the poor soul doesn't know what is going on. Have you been in contact with the surgery manager ? They are not the easiest to get hold of but its worth a try.
The guidelines are put there for a reason so why the hell are they not following them is beyond me. I am livid this dear old lady is having to suffer through neglect. It might be worth batting an email to your MP stating the facts in the guidelines.
I do hope somebody can offer you further advice. 🤗
" they stopped my Nan's B12 injections, despite her Pernicious Anaemia and despite her having had them for decades... simply because when she registered, her blood test showed her B12 was now within range. After I made a fuss, the care home arranged for her to be retested and even though her B12 had dropped, they argued that it is still in range, so she no longer has 'the anaemia problem'. Regrettably, I do not have access to any of the figures and no one seems to be able to quantify these to me."
This is not how PA is professionally treated and this constitutes negligence and malpractice of the highest order. Significant B12 deficiency, including neurological damage can occur without anaemia. Measuring serum B12 after treatment has started is not effective to judge the efficacy of treatment. These are classic B12 treatment pitfalls that all experts who professionally treat B12 agree on such as B12 Institute: b12-institute.nl/en/diagnos...
I would try and work with the surgery/care home but if it was a relation of mine I would do what was necessary to keep them in good health.
Maybe it's worth mentioning that they could be sued for negligence. Solicitors Taylor Emmet have won several cases and got substantial damages. That might frightened them into restarting injections.
I was thinking along those lines too. A law suit against won't be good for business and you have a strong case against them. This is blatant negligence by 'care givers' who know nothing about B12 deficiency 😱
I am so extremely sorry and our grannies, mums and elders can be extremely dear to us.
Like Technoid says about retesting, there is no point. The British Society of Haematology also comment on retesting vitamin B12 after treatment has commenced.
I do hope that you are a member of the PAS. You can write to the Prescribing Clerk of your grandmother’s new GP surgery. A Prescribing Clerk is an administrative role that work alongside the pharmacists and check the GPs are prescribing the correct medication, correct dosages and frequencies.
Doctors can get completely bogged down with paperwork. They are human and make mistakes. You can usually find out their name from the surgery website or pop in to obtain it.
Dear So and So,
I am writing on behalf of my grandmother, Mrs Eliza Doolittle NHS NO: 12345678 Date of Birth : 24 December 1934 who is a resident at Savile Row, Burlington Gardens, London since 1 April 2023. I, Jessica Fletcher, of the above address have Power of Attorney.
My grandmother has Pernicious Anaemia and under the care of Dr John Watson of Sherlock Holmes Surgery received 1mg/ml of hydroxycobalamin intramuscular injections every (insert) weeks with good effect. She has been on this treatment regime for decades.
Since moving practice, one of the GPs at your surgery retested her vitamin B12 levels. Firstly, I did not consent on her behalf to serum testing and secondly, once hydroxycobalamin treatment has been commenced then retesting is futile. My grandmother’s treatment was stopped on an erroneous procedure. As a direct consequence her condition has significantly deteriorated. I would be extremely grateful that injections be reinstated with immediate effect.
Pernicious means deadly. Therefore, not only have you reduced her quality of life but there are implications for loss of life.
Kind regards,
Your name
cc: Your M.P.
Hand deliver the letter so you know it has got there and ask is Sheila, Doris or whatever their name is in.
I hope this helps, I am straight to the point for a reason. Your poor granny has had falls and mobility issues. One of my best friends is my Gran.
"Despite me turning up to the surgery in person and phoning them directly, no one will speak to me. I feel like I'm failing Nan "
Have you considered writing them a letter expressing your concerns for your nan and ask them in the letter to file it with her medical notes, pointing out you have POA.
If you can't find them online or by searching forum threads then best bet is to submit a FOI (freedom of Information) request to her ICB or Health Board asking which B12 deficiency guidelines they are using and for a link to or copy of them.
Go to ICB or Health board website, put FOI or Freedom of Information in search box and it should take you to a page that explains FOI process.
When you find them, compare them with NICE CKS (Clinical Knowledge Summary) B12 deficiency and folate deficiency link below.
The reason I urge people to find local B12 deficiency guidelines is that some local guidelines are not helpful and I think it's good to know what you are up against.
See blog post below about an area in UK with unhelpful B12 deficiency guidelines.
Table 1 in above article is about frequent misconceptions about B12 deficiency that health professionals may have.
Two B12 books
They were published a few years ago so bits may need updating. I gave a copy of Martyn Hooper's book to one set of GPs. Maybe home would like a copy.
"What You Need to Know About Pernicious Anaemia and B12 Deficiency" by Martyn Hooper
Martyn Hooper is the former chair of PAS (Pernicious Anaemia Society).
"Could it Be B12?: An Epidemic of Misdiagnoses" by Sally Pacholok and JJ. Stuart (US authors)
Very comprehensive with lots of case studies. Has chapters that mentions dementia and the elderly.
One thing that might be worth discussing with the home and GP is that inadequate treatment of B12 deficiency increases the risk of developing permanent neurological damage. In severe cases the brain and spinal cord can be affected.
PAS have a leaflet on SACD, sub acute combined degeneration of the spinal cord .
Might be worth passing to home/GP.
PAS article about SACD, sub acute combined degeneration of the spinal cord
I developed dementia symptoms in my 40s due to lack of recognition of deficiency and lack of treatment. Thankfully these resolved when I finally got B12.
If you have time, search "b12 deficiency elderly uk".
"After I made a fuss, the care home arranged for her to be retested and even though her B12 had dropped, they argued that it is still in range, so she no longer has 'the anaemia problem'.
When they say anaemia problem they are probably referring to macrocytic or megaloblastic anaemia. This leads to enlarged red blood cells.
If you have time, search " b12 deficiency macrocytic anaemia uk" and "B12 deficiency megaloblastic anaemia uk".
It's just wrong of them to wait until she's deficient again before giving her B12. Once a deficiency has been treated, continued injections for someone with PA are there to prevent a future deficiency.
Oh! for heaven's sake get her boosted up ASAP. I watched and listened in horror to my friend's darling mother deteriorate and ended up sceaming at full throttle for days on end. Drs. tried everything to help her to no avail. It was only after she died that I discovered she had PA and her medication had stopped, she was being lookd after at home but had to be hospitalised in the end..
What is wrong with these idiots, how did we sink this low in a supposed civilised country. - sorry but this to me is torture of a fellow human being. My heart goes out to the family.
I hear and feel your pain and it is awful and unnecessary to have anyone suffering like this
Lots of good advice here. Also contact the Quality Care Commission and make a formal complaint. Also send Narwhal’s letter which is brilliant and perhaps add that you are taking legal advice.
Meanwhile take her for coffee and cake each week 😉 and give her folate too. Also get a full blood count and check cofactors but you know that.
She is very lucky to have a granddaughter like you. Well done for supporting her and we will all support you.
As they are insisting she has no dementia also set up a Lasting Power of Attorney so you can ensure this doesn’t happen again.
I think you need to join the Pernicious Anaemia Society (if you have not already) - I am sure that someone there will be able to support you and to contact the surgery on your nan's behalf. They have the power of numbers behind them.
Narwhal10 's letter looks very persuasive and direct. No "he said, she said" - just what you are asking for and why your nan needs it. You can adapt it to suit your situation.
Since your nan has been without B12 injections for a long time and has been adversely affected by cognitive issues, the treatment should be for those with neurological symptoms (see NICE guidelines) - every other day injections until no more improvement can be gained, then a maintenance dose to ensure that these improvements do not gradually disappear again. This is not able to be seen in a blood sample - and NICE advise against retesting of serum B12 once treatment commences. As my GP used to say: "pointless".
It seems awful that no-one involved professionally with her care has managed to relate your nan's problems to her change in medication - from effective long-term treatment to nothing - and more awful to think of you trying to fight the system for her alone.
I'm really glad she's got you - but please get PAS to back you up.
Let us know what happens - and look after yourself, too. This stress may also affect your health.
By addressing the letter to a Prescribing Clerk (PC), I have actually ‘side stepped’ part of a system. The PC will hopefully escalate (process quickly) to a pharmacist. Pharmacists have the authority to question doctors whether they are consultants or not. It is part of patient safety, they check the medications that doctors have or have not prescribed. It includes dosage and frequencies.
The pharmacist may educate as well 🤷♀️. Saturday is PAS conference for members and one of the speakers is an intelligent pharmacist. It will be good to hear that aspect. Hopefully not too many long words to misspell or forget. 🙄
There are soliciters firms advertising for people who have had thier B12 stopped, so they can sue for them. I am sure the tune would change if you got one of these onboard. Would you like me to do some digging to find one of these legal firms.
So sorry to hear of the difficulties you and your Nan are having. If you get no success with the actions suggested above, and if finances aren’t a problem for you, I would be tempted to contact the private Cambridge Anaemia Clinic (at the Nuffield hospital, Cambridge), the doctor there is very supportive, and may be able to do a zoom appointment with you and your Nan (if it is impossible for you to get there). If you have access to previous letters /evidence of diagnosis of PA , it should be a simple matter for him to write to your Nan’s GP, and request that they restart injections. Another option is for self-treatment (and he can help with that too - with private prescriptions). Good luck anyway, whatever route you take.
You can do both, get her her shots & put legal pressure on them.
Sleepybunny has posted one of these, I believe. I find them a terrific resource for education & information and they contain medical footnotes. I would print all four and send them to various places in the home & surgery immediately, in tandem with your letter.
Many thanks to all of you who have taken the time to reply to me. I am overwhelmed by the invaluable advice and sources that you have all given me. I cannot thank you all enough.
I am myself a member of the PAS and have been since discovering my own my B12 deficiency in 2017 (Serum vitamin B12 level 88ng/L [130.0-800.0]). I myself have had to battle for B12 on a few occasions and I subscribed in support of the PAS. I am able to access the members areas and leaflets,
I am in the process of drafting my letter and including references, leaflets and links to the important information. I shall keep you all updated with the progress. I am expecting this to be a lengthy procedure, but I'll keep giving it my everything until she gets what she deserves.
We are all rooting for you. There was a post a year or so ago where several of us mentioned watching elderly relatives deteriorate due to untreated or under treated B12 deficiency, so poignant to read.
"I am expecting this to be a lengthy procedure"
I'm sure you'll do ŧhis anyway but keep copies of all communication eg copies of letters/emails/screenshots of messages.
Consider asking to record appointments. Good grounds to do so if suffering from fatigue, memory issues, concentration problems.etc. Ask in writing prior to appointment and include reasons why you need to record.
I'm not sure about process of asking to record an appointment if you're not the patient.
If you haven't already, I think it might be good to access all her medical records, blood test results etc if you're able to. I'm not sure about process of accessing records for someone else.
Maybe request access to written records as well as online records if it's possible.
I know of people who have accessed their records and found that something they expected to be in the records wasn't.
I just wanted to update you all and let you know that my letter was received and Nan's 12 weekly B12 has been reinstated. She had her first last week (although she had already forgotten about it that same evening).
The response I received from the GP:
'I have reinstated the B12 injections at the 3 monthly regime as she will not require loading doses as there is no evidence of B12 induced neurology and recent levels are within the normal range'.
My letter had fully stated and referenced the ineffectiveness of measuring B12 serum levels, along with a list of Nan's symptoms (inclusive of neurological symptoms) so it was disappointing to be told this.
I had hoped they would give her the appropriate loading doses. While this is a partial win I will continue to 'take Nan out for lunch' to the private clinic local to us as frequently as I can while I continue this argument. I've also recommended this 'lunch spot' to my mother and sister, to get her there as much as possible between us.
Once again, I am thankful to all of you for your support.
I'm very sorry for your Grandmother. What memories your post has given me.
I'm glad her B12s have been restored.
My mother also had her B12's stopped as GP told her she needed no 'more' as her blood test was 'good'.
She always knew when her PA jab was due as certain symptoms began.
As she got older she developed cancer in stomach a while after the withdrawal of T3..
Eventually she was diagnosed and died due to stomach cancer.
I also have P.A. and GP has told me I can have as many B12 injections I think I need. I haven't stopped or raised dose yet and doubt I will do so. I will if symptoms return.
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