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[Nackapan]

My 91 year old mum had been denied her b12 injection again. The district nursing team had I now discovered discharged her after the last one?? The Gp didn't order more bloods on my request as is the cases when a referral is made in district nursing .

She had her b12 injection today. 💉

I've spoken to the band 6 . My mum on her caseload.

I asked gor her not to be discharged again as I simply cannot go through this every 3 months. She laughed and said mum woukdnt be.

I think she thought I was joking. However I really cannot go through this every 3 months!! So hoping my mum will 'wake up a bit now . She did last time.

I did have a decent chat with the nurse and made the points of ; B12 an essential medication on WHO. How people canr cope without it ect . That she must see the benefits to her patients ect ect

She was receptive. As was the G.p. As was the pharmacy as dispensing 5 ampoules in November that expire in August (she has them 3 monthly) They won't be going in the bin this time!

Every opportunity to get the message out there.

[Hidden]

Well done Nackapan for persisting but it’s really not fair on you they could all do with a good shake.I’m glad your mum has had her shot and maybe when she sees how much better she feels after it she might be more co operative with you I hope so for your sake.best of luck x

[nellie237]

Hi Nackapan,

I've been reading your struggles to help your Mum with concern. Well done for hanging in there.

Why stop treatment at 91yrs? I can't find the words. I don't know you and I am upset that this happened to somebody so vulnerable and unable to fight her corner.

The nurse laughing was very inappropriate, but hope that it was more a case of she didn't know how to respond to the previous bad judgement on their part, rather than lack of caring.

[Nackapan in reply to nellie237]

The laugh was okay. As she finished her last sentence after her speil of what was happening with... Okay?

My answer was No

A few things needed ironing out in the proposed actions and care plan. (As simple as it was b12 injections 3 monthky)

I think the laugh was she wasn't prepared to ho through it all with me in 3 months either !!

Hooe so

[Janma123]

That is great news and 🤞. Hope your mum is better in herself after the injection.I wish my hubby would have his again but he doesn’t remember feeling any better - he remembers feeling rotten before and just after the injection but has absolutely no recollection of the 6 - 8 weeks when he was really well. He’s taking tablets and I’m going to give him them more often.

[Hidden in reply to Janma123]

Does he read this forum Janma123.? it may help reinforce how important it is for his health to keep up his frequency of injections if he reads some of the stories on here.It changed my life being able to control the severity of symptoms with that simple shot.

I hate doing them like lots of members here and my solution now is I just say right Monday’s and Thursdays are my days for top ups,Thursday gets me through the weekend pace then Monday tops up what I’ve used over the weekend to get me through to Thursday again! Works great for me now.best of luck

[Janma123 in reply to Hidden]

Hi Diddlydot, thank you for the lovely reply. He doesn’t read the forum unfortunately as reading is something he ‘lost’ following his stroke. He is needlephobic and would get wound up at the thought of an injection or blood test. He had been to the doctor a few times feeling tired and been put on Folic Acid for a couple of months. He then had a heart attack, quadruple bypass and 9 weeks later, a stroke. We had been to the doctor a couple of times as his scar was uncomfortable and he was also retaining fluid and his breathing was bothering him. He, as a result of the stroke was struggling to explain what was wrong and felt he was being fobbed off and that the GP wasn’t really interested. (It was a nurse in A&E several weeks later that picked up the fluid retention in his chest)He went for blood tests and was very bluntly told ‘you are anaemic in b12, you will need injections for life, here’s a prescription, make 6 appointments with the nurse’. No explanation or information given. No mention of neurological or other symptoms - he had several when I discovered the information on the nhs website.

Over the next two weeks he got himself into a ‘state’ and when it was a red liquid that was injected into his arm and it made him feel dreadful he was convinced it was a poison and that I was in cahoots with the doctor trying to get rid of him. His 6 doses had a small effect but made him feel awful but he had his top up 12 weeks later and had 2 rough weeks and about 4 ‘ok’ weeks before sliding back until he got the next top up.

By this point I had found this wonderful forum and knew what should have happened and that he had been deficient for several years.

Twelve months on the pandemic struck, injections for life were cancelled in favour of tablets and I have no hope of hubby going back to injections as he doesn’t associate his symptoms with the b12d - he blames age, the stroke, his heart surgery and his T2 diabetes. I don’t feel I can do anything but it is really tough watching him but knowing that there is a simple remedy that could give us so much life back. What we need is someone we know well to be getting the injections and him see the difference in them.

Take care.

[Hidden in reply to Janma123]

Gosh Janma123 you’ve really got your work cut out I reallly feel for you both and can I just say paranoia is another effect of b12 deficiency so don’t be too hard on him when he’s bandying around accusations it must be so hard on you.Have you tried the oral b12 spray it might help my husbands levels went up very nicely after three months using it,he wasn’t deficient just a bit low so I supplemented him with that also vit d3/k2 oral spray as he was deficient in that and again after three months retested and his levels were rising nicely.The oral sprays bypass the gut and get straight to where needed so no tummy upsets etc,might be kinder for him and make him feel a bit more trusting I know it’s difficult for you trying to deal with it.

Better You are the best ones you can buy from amazon or health food stores,maybe worth a try?

Best of luck and best wishes to you both he’s certainly had a rough ride.xx

[Nackapan in reply to Janma123]

Very frustrating . Tell him about the evidence for using tablets not great and a very small study. Anything really.

[Janma123 in reply to Nackapan]

I will just make sure his b12 is tested every time he has a blood test and if it falls it can be addressed then.

[Cherylclaire Forum Support]

Sounds like you are managing the healthcare team !This can't be helping in your recovery and you really don't need the stress.

Let's hope this has now been resolved. Finally.

[Sleepybunny]

Hi,

Just wondered if you have put this in writing to district nursing team and copied to your mum's GP with a copy for your mum and you?

If it happens again (hopefully not) you could then refer to the letter you wrote previously.

Have you ever considered going to the press?

[Nackapan in reply to Sleepybunny]

I have considered all of the above. Unfortunately not been very well. Also writing still a problem.

I totally agree a good idea

Will try and do at later date before next one due.