A b12 injection request was put through to my mums Gp again this morning. I will get a ring back once Gp has decided if a district nurse already going will do it. She saw no problem as on her notes . 'Housebound'im on her notes to speak on behalf of her.
Meanwhile I've now discovered 2 district nurses went uut this morning.
One to dress her leg wound.
One took bloods to get b12 levels and if okay no injection. 😡
My mum accepted all of this . She is 91 this month. Deaf. Also going downhill as she always does before her 3 monthly injection. What on earth is going on. Its always best if I go to her sugery but of course this cant happen.
It must be happening everywhere across the country still . Extra cruel when so vulnerable to start with .
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Nackapan
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Her injection is only due this month. The battle started straight after her lady one.
The trouble is I've had reasurrances will happen . All not communicating with each other.
I think direct contact rather than messaging will be next to Gp. Even letters are opened and scanned on notes then not read unless you phone and phone . They just get missed. The system is going wrong without face to face .
"took bloods to get b12 levels and if okay no injection"
If they stop injections.... if your mum is happy with the idea, could you or a friend or other relative write a brief letter to GP expressing concern over long term consequences of your mum's B12 jabs being withdrawn and maybe include one or more of articles below?
Let's hope this is more a case of poor communication than anything else.
It makes no sense at all to me - not on your mother's side obviously, but not on behalf of the nurses either. B12 has no known toxicity level historically, having been used in massive doses as an anti-toxin. So why worry about her high serum levels over her symptoms ?
Family history alone would suggest that stopping injections would be an unwise move.
As for how to get from prevention of them stopping injections completely on a serum B12 result to getting them to give her injections at a more useful frequency by acknowledgement of the "every 2-3 months" guidelines ...... relying on her GP to be up to date on this might not do it.
Well, let's hope your e-mail and Sleepybunny's links do get them to rethink their position regarding your mum's current lack of treatment.
Yes I'm trying not to get stressed by it . Pretty impossible though as I will have to deal with the consequences if she gets worse. I'm not an only child my sister is on board . I'm the local one though!!
Mums surgery called just now .
They will ask the district nurses to do it ..The ones that are going in already. Apparently the district nurses have stopped doing b12 injections and people put on tablets!
The Pernicious Anaemia Society link from Sleepybunny includes a statement from NHS England regarding B12 treatment during Covid:
".....NHS England and NHS Improvement are constantly reviewing the delivery of critical services in primary and secondary care, and seeking ways of safely re-establishing services where the absence of such services could put patients at risk. We would be very grateful for your help (PAS) in establishing whether there remain ongoing issues for patients in accessing their B12 injections or whether these are now resolved....."
It seemed clear to me on reading the statement that it was not ever their intention that NHS frontline staff stop B12 injections entirely, and that they were unaware that this was going on.
I would argue that during a pandemic, anyone who is B12 deficient with an unknown cause should be treated as someone with possible PA or absorption problem -and injections should be continued in the absence of a diagnosis. Particularly since it has been acknowledged that no truly reliable PA test exists with which to establish a diagnosis- even where one was sought initially.
Now is not either the moment to experiment with tablets as a substitute, when the potential results could so obviously include deterioration due to the patient's inability to process B12 in tablet form. "The district nurses have stopped doing B12 injections and people put on tablets" : they can't possibly be aware of the eventual consequences of this decision.
The question screaming in my head right now is "Why aren't they aware ? "
Nackapan , leaves you wondering how on Earth it all ended up like this, doesn't it ?
Yes its unbelievable. You quite rightly say now is not the time to experiment when you cant access services if get ill.
I've reported several times tablets are not acceptable. If tablets worked injections would not have been prescribed in the first place
....I'm amazed its up to the district nurse if they will do it. When I worked in the NHS the nurses followed doctors instructions . So have they been told not to do them??
I so wish tablets did work for everyone.
Apparently there is now a shortage of b12 tablets!!
I wonder who made all these decisions .
Yes and why are they not aware that injections are given as you cant absorb tablets ????
Well I replied to the link saying whats happening to 3 generations in my family .
My mum if no one to fight her corner would be denied it ??
All the reports on our forum quite distressing . Do different thingd across the country.
A friend (retired Gp) still will not have it that I need regular b12 injections. Keeps repeating but youve had your loading doses you will be swimming in it. Your stores will be fine now. ??? I've known him for over 35 years ....hes completely thrown by how ill ive been.....he is sadly not alone in this area of sheer lack of training. It was him that said to get the injections as quickly as possible though and was astounded b12 hadnt been tested before and my surgery hadnt got me in the day the blood test came back for an injection. So he knew the testing and urgency and loading doses and maintenance doses and that was it .
Hed never come across anyone with such a low reading as mine ??. Perhaps in his practice b12 was tested more and caught early if that was the case.
Perhaps a model that worked for most . Not all of course.
"district nurses have stopped doing b12 injections and people put on tablets!"
Have you got access to local guidelines on treating b12 deficiency for your CCG/Health Board?
Some of these local guidelines may have a temporary statement added which gives details of any changes to treatment due to pandemic.
"Now is not either the moment to experiment with tablets as a substitute"
Gloucestershire now have a treatment protocol that puts the majority of patients with b12 deficiency onto oral B12 and it's not just for the pandemic. See below for blog post from B12 Deficiency Info website about this.
I looked at the flowchart you mentioned...I would not be happy with it. There is no mention that people can have b12 deficiency even if B12 is within normal range.
My understanding is that this flowchart is not just for the pandemic as date on file says September 2018.
Is it okay to include a link to guidelines in this reply?
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Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Update on my daughter
Interesting development in the 'more frequent injections' battle
