My 90 year old mother who had severe mobility problems, arthritis in her hips. IBS to name a few had just been told she either has to go to the surgery for her 3 monthly b12 injections or have tablets prescribed. I contacted her surger who then said to contact Provide district nurses. Then had to wait for a call back from a nurse . Apparently as my mother on other medication she can obviously absorb. So b12 tablets will be fine?? They have dropped her from home visiting list . I pointed out she vunerable. 90 years old and is not safe to use a taxi apart from the £25 cost . Have to now wait for Gp to ring to make final decision. On so many levels this is so wrong. As everyone knows you even more likely to fall ect when due your b12 injection. When she missed one when I was ill.She literally was stuck in her chair most of the time and dizziness ect a problem too as well as mind!
So weary of trying to get justice .so if alone she would not go and end up in hospital. So theres a big saving made.
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Nackapan
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That’s so sad Nackapan and so much stress for you on top of your own issues.so so sorry to hear this you must be sick of battling with these useless idiots.
Yes. Its cruel. The risk of her falling is too great apart from all the other risks at present. She does use community transport once a fortnight but there are volunteers and a trolley in Tesco to hang on too . She disent go some weeks k do do that.
She cant rely on me anymore. I've employed a cleaner for her that I used to do and a gardner now . At 90 you would expect a 3 monthly visit not much to ask for. Everything else paid for . Even Age concern dont give paid help anymore. To be told to travel at her most vulnerable when due an injection is crazy. She cant use public transport. Ladt time she tried she ended up in hospital for one week! Rant over.
I wondered if it might be worth talking to her MP on her behalf.
Even if she can absorb other medication, it doesn't mean she can absorb B12. I thought B12 was a large molecule that needs help from intrinsic factor to be absorbed.
fbirder might be able to explain this better than I can.
Oh I've not heard of that. Thankyou. Gp not rang back yet to discuss. That itself is difficult ad even on loudspeaker it give me head pain.
It's very frustrating as I would normally help her. I'm just not able to at present. No way I could support her walking. Also found out today Age UK are not running services at all now. You paid but at least people checked out.
Only telephone advice. Well that's no good for toe nail cutting !! Also she very deaf. So perhaps that standing order that had been made for years should be stopped!! My dad set up 6 . He sadly died in 2004 so many years . Perhaps be changed to PAS instead !!
This is such terrible treatment and, I believe, part of what is happening countrywide to stop people's B12 injections. It is happening at my surgery in the Midlands. Mine have been cut from monthly to two-monthly. This is what I feared, that vulnerable people who can't fight getting their jabs cut. I know you are fighting for your mother, but there will be people in care homes with the same thing happening with no families to fight their cause. The following is a reply I received from the Pernicious Anaemia Society in July when I asked if there was a new guideline (which my gp said was being implemented).
There is no new guideline coming from NICE as due to Covid the new guideline on Pernicious Anaemia has been postponed. There will be a new BSH guideline coming but we do not know when, but it will not be shortly. Other than that, some CCG's have taken it upon themselves to create new guidelines.
So no, it is not individual surgeries, but it is also not NICE/BSH. It is coming from other organisations in between, CCG's and regional governments. You could ask your GP which guideline he is referring to as it is not NICE/BSH? We are working with our experts to address the situation as it is very confusing that there are multiple guidelines and they are conflicting. We are of the opinion NICE and the BSH should be followed but there is a large lobby going on from somewhere to put as many patients as possible on tablets and they are taken the current crisis as an opportunity to push this through. It is all about the costs, and very worrying. However, if you have a diagnosis of PA, injections should not be stopped. Some CCG's are retesting B12 (which we know is useless) and antibodies intrinsic factor. If these have ever been tested and found positive there is a clear diagnosis and retesting is not needed.
We hope to have more news about this coming soon and will then let everyone know via our website (Newspage) and social media.
What is going on? Is someone trying to 'do away with' B12 Deficiency as a disease?
This seems like its getting g totally out of control. So we must ask as PAS suggests to what guidelines the surgeries are using. ?? Why not NICE and BSH
I also had this reply from NICE at the same time, as I was asking about whether there was a guideline for every other day injections 12 years ago when I was diagnosed, as I had neuro probs.
------------------------------------
Thank you for contacting the National Institute of Health and Care Excellence (NICE).
NICE is an independent organisation responsible for providing national guidance for the NHS in the UK on promoting good health and preventing and treating ill health. Our role is to produce guidance (advice) for the NHS on how to treat health conditions.
NICE has not yet been asked to produce guidance on this topic. Topics for the NICE work programme are referred to NICE by the Department of Health and Social Care, NHS England and other Government departments in line with the national priorities that they have established.
However, as you are aware there is a Clinical Knowledge Summaries (CKS) on Anaemia - B12 and folate deficiency<cks.nice.org.uk/anaemia-b12....
For your information, CKS topics are developed by Clarity Informatics Ltd but are commissioned and funded by NICE. They are concise, accessible summaries of current evidence for primary care professionals. The topics focus on the most common and significant presentations in primary care. They give trusted information to support safe decision-making and improve standards of patient care. However they do not constitute NICE guidance.
We work with the publisher to make the CKS available on our website and, while they may refer to NICE guidance (if there is any that is relevant), they also use many other sources. They are written for health professionals working in primary care (usually GPs) however the guidance is freely available for anyone to access.
You asked about this recommendation from Anaemia - B12 and folate deficiency<cks.nice.org.uk/anaemia-b12... ‘Ideally, management should be guided by a specialist, but if specialist advice is not immediately available, consider the following: * Initially administer hydroxocobalamin 1 mg intramuscularly on alternate days until there is no further improvement, then administer hydroxocobalamin 1 mg intramuscularly every 2 months.’
I checked with Clarity Informatics who advised this recommendation was first included as part of the April 2008 update. Prior to this the recommendation was:
'Vitamin B12 replacement requires intramuscular injection, as the usual cause is malabsorption. Initial treatment if there is no neurological involvement is with six injections of hydroxocobalamin 1 mg at intervals of between 2–4 days, followed by 1 mg every 2–3 months for life. Initial treatment if there has been neurological involvement is with hydroxocobalamin 1 mg on alternate days until no further improvement, followed by 1 mg every 2 months for life.'
So sorry to hear this. It seems - in effect - euthanasia. As a 72 year old I already feel that GPS try this on elderly vulnerable people if they can. Good luck it’s exhausting!
Dear Nackapan, dealing with MPs etc is something that lots of us should do to get the message out there but you have to be feeling up to it. I have done is with our MSP and am about to bother her again on this because the reply she got from Grampian Health Board was unhelpful. This is stuff we can all do at some point. For helping your Mum now I suggest talking to a district nurse directly....they don’t always do what doctors tell them. Explaining to a nurse is easier than talking to a doctor and they are already angry about the B12 situation. In Our practice here the docs are only doing phone consultations when you go to the surgery only the nurses are seeing patients . They have done a raft of blood tests for me and each one of them has been angry that they couldn’t just do an injection as that is what I needed. If you cannot find a way to talk directly to the district nurses you can ask to see a nurse yourself ....maybe you are exhausted and need your iron tested.......that’s a given for all of us b12 deficient people. And then tell the nurse all about what is going on with your Mum and how worried you are. Nurses get stuff done in my experience. I have used this way round to get help for my Mum when my Dad was so I’ll with dementia and she wasn’t able to cope anymore.
Yes I spoke to the district nurse directly. She was the one that said my mum should be fine with b12 tablets. She would not change the decision. She said to contact mums doctor as final decision is theirs . Provide is a service commissioned in and they cover district nursing. The practice nurse and team separate. Apparently they 'accepted ' mum to do injections at the surgery.
I explained to the nurse that my mum says yes to everything and she is deaf. Even with a special amplifier she dosent hear everything. I pointed out when next injection due she will be 91. I wont repeat how the conversation ended . Put it this way I was as blunt as she was to me. No compassion. She is a nurse. Hopefully the doctor I ve had to deal with on several occasions and I'm on her notes to be able to discuss her care . He hopefully will see sense.
Sorry, I meant to say the reason for doing this is that some people in my parish who are elderly and at home have had their b12 injections done even though the policy is to put everyone on the useless pills and it is the district nurses who are doing them.
So sorry you are having all this extra trouble especially when you don’t feel that good yourself. I hope some of the suggestions other people have given you help. I do hope so. Take care of yourself too, even though it’s horrendously difficult at the moment. My surgery have a Facebook page, and today it ‘says now you can contact us’ and a link ........... it takes you to 111. Say no more! I hope you get help asap.
Someone questioned it, something I don’t bother with now, as initially the Practice Mgr took my post down ( it wasn’t offensive) He cooled off and we had an amicable exchange where he apologised. However, any kind of criticism isn’t welcome. So I don’t bother. Someone did say, with exclamations, and the reply was 111 can make appts at the surgery !!!!! I have found one GP helpful, when I can manage to get an appointment. Ist’s the way the world is going. But I’m not 90 like your Mother. It’s appalling and I really feel for you. Do take care of yourself (hope your Mother does get help somehow.
So sorry to hear you and your mum are having all these problems.
I do my own B12 injections and also my mothers and have been doing so for several years now. The surgery are more than happy with the arrangement. I was wondering whether you do your own injections and if so whether you could do your mums for her? Just thought it might be a temporary solution if nothing else
Yes I have thought of that than you. I'm only prepared to do sc. Not sure of mum would be okay about if lol! Doctor supposed to be to ringing me to discuss. Not happened yet.
District nurse most insistent her service is withdrawn and would be fine on tablets !!
Shd had been compliant all her life ive always fought the injustices for her after my dads death. I find it heartless ,cruel and just too risky. More for the falls as getting in and out a car is very difficult. . Shd shuffles as arthritis in her hips make her movements jerky. Of course frustration that j can nk longer be relied upon to hold her up . I said ad much to the district nurse who ive witnessed going into her house for minutes. I know they are busy . Who isnt at work. Its the only service she gets/got apart from her prescription is delivered. Which I set up after getting ill. I'm no where near up and running yet.
Along with other things paid for. I'm going to speak with her G.p . If that fails I'll get her hopefully to buy it or on prescription. Its next due when she 91yrs old.
Put in 'the pot ' for 45yrs . Started work at 15 in a factory full time. I think I'm feeling it as worked in the NHS for 36 years on a low band. So disappointed the way it's going. I used to be proud to be 'one of the cogs' to keep it moving . To see some of the most basic of services going is heartbreaking and not what it was set up to achieve. Too bitty now . Being run by skilled managers with no clinical experience though . So no understanding of shortcitting costs more in the long run. Preventative work removed ect ect ect
I understand your frustration. Like you I’ve worked in the nhs for many years and find it hard to accept treatment such as your mother is receiving. I agree with others in that you should definitely consider putting in a complaint and use PALs to support you if necessary. You and your poor mum shouldn’t be put in this position. I hope you get things sorted out and please let us know how you get on. Good luck
Hi Nackapan, have you considered putting in a complaint to the Practice Manager at your mums surgery? Tell them you’ll hold them responsible for any decline in her health, ask who made the decision to stop injections as you need their name for your solicitor! Good luck, hope you get it sorted.
This is interesting, just this week my Mums GP decided she no longer needed B12 injections, and he reluctantly said he would replace with low dose tablets. She is 84 and has dementia. He made this decision the week before her B12 was due, yet she still doesn't have the tablets. Not sure what good they will do. I didn't go on Saturday as I was poorly but I went yesterday, and I was appalled at the state of her. She had no energy whatsoever and really struggled to stay awake!
Why?? Why would they even bother to change her meds at this stage in her life? Not to mention the confusion around yet more tablets, my 88-year-old Dad struggles to administer the few she already has.
Oh dear I'm so sorry its happened to your mum too. It's actually disgusting to have treatment withdrawn . I've just another conversation with my mums surgery. Very helpful this time as she(receptionist is on b12 injections!! and understands.However it shouldnt be dependant on whi toy happen to speak to!! She thinks the best way is to phone before it's due with the date worked out. They then can submit it to the doctor as an admin task to refer into district nursing team again. So will see. It seems to be happening everywhere. My mum 91 when it's due. Severe mobility problems. It makes me so upset and angry as not every vulnerable person has an advocate.
I will keep my fingers crossed for your Mum. I wonder what is happening, makes you wonder if they are being told not to prescribe it, and why? I know they seem to have 'waves' to push one medication over another, but not heard of this withdrawal phase before. It's very worrying.
I am so frustrated for you Nackapan. I am so sorry. When you fight for her rights remember that there are many that don't have loved ones that are checked in for them. So it *might* give you some extra strength to realize that you are in turn helping beyond your mother. But I get it. You're not well yourself. It is a lot.
All the best to you both. Oh and even though you do subcutaneous, you can do intramuscular on your Mum just fine Nackapan. I know you stated differently, but you can!
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