B12 injections stopped : Well the end... - Pernicious Anaemi...

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B12 injections stopped

Nackapan profile image
24 Replies

Well the end to the tale for now is the Gp surgery have basically bullied my mum into submission. They rang her . She can hardly hear. Deaf in one and partial hearing in the other.

She knows its causing an upset so she said it's alright she wont have them anymore!! She knows the nurses are busy.

Lost for words. Her level was 170( below range used ) and before she had inje tions she was rooted to the spot. It was awful. The Injections got her shuffling again si at least could get around house.

The usual way or the right way would be for a kind nurses to give her the injections to help her function mentally and physically . Not to stop them and upset her and everyone in the process.

It's not over .......

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Nackapan profile image
Nackapan
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24 Replies

Bloody disgraceful treating our elderly like this makes my blood boil.Keep battling as long as your able to and meantime step in if she’s willing and administer yourself.im so sorry.xx

wedgewood profile image
wedgewood

I feel for you Nackapan . The NHS is disgraceful towards your mother. That behaviour is cruel and unprofessional. Something must be done . Can she become a member of PAS , then they could intervene on her behalf . That surgery must not be allowed to get away with it. You must be beside yourself .

Narwhal10 profile image
Narwhal10

Oh my goodness Nackapan,

This is outrageous and I’m swearing on behalf of you and your family. Your mum has some quality of life with the injections.

I do hope you have the energy and strength to manage your own health and hers.

X

ugh that sounds awful. It’s not nice, everyone should be given the ability to function and the help they need to be able to. Good luck x

Nackapan profile image
Nackapan

Thankyou for all your replies .

It really does help me.

I would DIY bit I think my mum would say and I'd be In a heap of trouble she woukdnt'get' so im not going too .

I've not finished.

One of my daughtets will be home soon. She will do a brilliant letter .

She was an English teacher so has more polite eloquent language than me!

She will get up to speed and has b12 inje tions herself so 'gets it'

Often grandchildren are taken more note of too.

I'm too angry and frustrated I'm not well enough to get into gear .

More lessons with b12 deficiency/PA . Step down and micro manage.

Its all very well mum agreeing/bullied inti submission.

When she gets 'shut down ' and not functioning at all. The nurses and Gp dont see this . I have to deal with her.

It's almost like control over the elderly to become too ill to know what ti do or what happened.

They(medics) do not connect her 'shutting down ' to b12 deficiency/PA .

I saw the change in her after b12 Injections . She woke up. I really thought she was getting dementia but she wasnt . She had a better response than me. No ill effects at all. Not a cure all obviously but a help.

I'll let you all know the surgeries response at a later date.

It's not due until November.

Sleepybunny profile image
Sleepybunny

Hi,

I feel so angry on behalf of your mum so just brain stormed some ideas below.

Can you contact her MP about what she's going through? Apologies if I've suggested this before.

Can PAS suggest anything?

PAS (Pernicious Anaemia Society)

Based in Wales, UK.

pernicious-anaemia-society....

May be relevant info on B12 Deficiency Info.

b12deficiency.info/

What about Age UK?

ageuk.org.uk/services/age-u...

Advocacy

Is there any chance your mum would consider having an advocate to help her argue for reinstatement of injections?

citizensadvice.org.uk/healt...

UK Advocacy Charity for Elderly

opaal.org.uk/

Capacity

If she lacks capacity to make reasoned decisions is it possible to argue that lack of capacity was not taken into account when she agreed to them stopping injections?

Lack of capacity can be temporary or permanent.

Links about mental capacity

nhs.uk/conditions/consent-t...

nhs.uk/conditions/social-ca...

Has she made an LPA (Lasting Power of Attorney)?

Would she consider going to a private GP/hospital?

Integrated Community Teams/District Nurses

Not sure what the correct term is these days but I wondered if you could contact the ICT or DN team for your area and ask about possibility of your mother having jabs from them at some point.

Blog post about elderly and b12 deficiency (may be upsetting to read)

b12deficiency.info/blog/201...

Are there any other family members of close friends who could help argue her case?

Nackapan profile image
Nackapan in reply toSleepybunny

Thank you. I've spoken to the district nurse team. It was them that withdrew their home visits 3 monthly and handed that info back to her surgery. Then it all began!! It will get sorted. Just cant believe the medics attitude to this at all.

She had a blood test after shutting down when I first ill. So I immediately arranged for someone to get her to the surgery for a b12 blood test and others. 2 years ago. She was prescribed the Injections and as saw she can hardly move arranged the district nurse team to do them.

The district nurses rang my mum. Just told her they woukdnt be coming anymore . I wrongly thought Covid but they went on for last two .?? Last one in August.

I've since realised the contract has changed . Bid won by costing less. So cuts being made as cant deliver same service.

So what do they do. Hit the most vulnerable often without ' a voice'

How important is a vitamin anyway!!!

Ignorance

Discrimination

Bullying

in reply toNackapan

I really feel for you. It was the district nurses who treated my dying dad in an appallingly, unprofessional manner too.

Maybe you could write to your local paper naming the surgery, as a warning to other sufferers in the area .

Nackapan profile image
Nackapan in reply to

I'm sorry to hear that.

Palliative care is usually done with sensitivity.

I watched them in hospital care for my dad. They were good with him. No information or communication for mum or us though.

I'm concentrating on getting her treatment first. Thanks

in reply toSleepybunny

Some brilliant options there for Nackapan and so lovely to see members rallying round with suggestions.well done xx

Nackapan profile image
Nackapan in reply toSleepybunny

Yes it is that team. Provide won the bid.

The surgery says housebound is on her notes. Must be something they asked her on the phone that she said yes to?? When I asked she only gir hey were not coming.

Narwhal10 profile image
Narwhal10 in reply toNackapan

Oh dear Nackapan,

Your mum does not recognise her own frailty even after her fall. I do hope you delegate to your daughter and it’s good that she understands B12/PA.

Regardless of who has won the contract, patient safety, POVA (protection of vulnerable adults) and safeguarding are issues. Maybe the way around your mother’s compliance is CQC ‘Safeguarding Statement’ p6 which describes one issue of safeguarding as

Point 4.

‘Recognising that adults sometimes have complex interpersonal relationships and may be ambivalent, unclear or unrealistic about their personal circumstances and therefore potential risks to their safety or wellbeing.’

This also maybe of some use - From Comprehensive Geriatric Assessment :

‘ Frailty can be worsened by seemingly small events, such as a minor infection or a CHANGE IN MEDICATION I.e, not receiving her vitamin b12 I.M. injection at home. Whilst there is evidence that frailty may be modifiable, in the current system a person will typically present IN CRISIS with non-specific manifestations of frailty such as delirium, sudden immobility or (ANOTHER) fall.’

That’s even before your mum shows vitamin b12 deficiency symptoms again!!

I hope you are able to get some rest tonight and know our thoughts are with you.

X

Nackapan profile image
Nackapan in reply toNarwhal10

Thank you that's very helpful.

Sleepybunny profile image
Sleepybunny in reply toNackapan

NHS (England) link about frailty

england.nhs.uk/ourwork/clin...

NHS link about identifying frailty

england.nhs.uk/ourwork/clin...

Nackapan profile image
Nackapan in reply toSleepybunny

Thank you so much for all the information and help.

I think she needs her b12 before November . Not with it today when I went .

Janma123 profile image
Janma123

I really feel for you and your mum. Healthcare for the elderly (and not so elderly too) is sadly lacking at present. My dad will agree to something just so he’s not a ‘nuisance’ but half the time he doesn’t hear what’s been said, and says yes and no where he thinks he should! You are a determined person and will resolve this one.

Best of luck. Jane

Nackapan profile image
Nackapan in reply toJanma123

Thanks . It very difficult isnt it.

pitney profile image
pitney

so sorry to hear the way that your elderly mother is being treated Nackapan I think I would put pen to paper and write to the practice manager and also send a copy to your MP.

Good luck and best wishes

HeartyGilly profile image
HeartyGilly

Write to your MP with a copy to Edward Argar MP. They need to know what is going on. Edward Argar has already been informed about B12 issues.

Kazania profile image
Kazania

Utterly appalling. I am so sorry that you have all this extra worry on top of your own problems. Do take care of yourself too.

Ghound profile image
Ghound

I'm heart sorry to hear this, it's unbelievable in a so called civilised country ! I agree with the excellent suggestions from everyone here, and it sounds like you have good plans to move things forward, so I wish you all the very best . Thank goodness your Mum has such a wonderful family looking out for her ! xx

waveylines profile image
waveylines

I echoe the others Nackapan. Ask your daughter to pen a formal letter to the practise including the amazing quotes given above and at the bottom cc your MP & the CQC. Make sure you ask for a response within a specified time frame. Cc people in will make them act when they see others are being made aware. They dare not ignore it. The cost for the b12 jab is pennies and seeing as your mum has a slow healing cut as you say can be a combined visit. Its inexcusable.

Outrageous and frankly they've clearly forgotten their doctors oath ...."first do no harm."

Big big hugs xxx

Nackapan profile image
Nackapan in reply towaveylines

Yes thankyou. Will get my daughter to do it if necessary.

I think you missed the post yesterday.

A district nurse just turned up yesterday . Couldnt get in as mum had no idea she/he was coming .!!she didnt hear the doorbell. We have a light flashing it going on and on but if shes not expecting anyone shes not even put her hearing aid in!

Also because of certain events of signing up for expensive porches and at one stage had 4 energy providers. Agreed to pay £400 to have the drive power washed . Then tells me and I have ti get her out of contracs ect. CCTV installed. I've told her not to answer the door unless someone expected.

The nurse rang later saying they would return today. No idea who actioned it and who had a change of heart. ?? I doubt b12 will be done as they said it had stopped but hope as you say wound looked at and dressed and it would make sense to get the b12 done.

Will see !! Just no communication. Have my telephone number on her notes and now my sisters but she is often not available and away alot . A simple text to me to say coming. I live very close to her.

Why they want to give her another blood test for b12?? All seems ridiculous and actually cheaper to carry on with 3 monthly b12 injectuon dine by a district nurse. All this admin . Doctors time reading copies messages left on her notes left by me. I didnt even ask for wound to be looked at but said it affecting her mobility more?? She deficiency needs her b12 as quite vacant yesterday.

The vets text lol

waveylines profile image
waveylines

Seems confused and they are looking for a way out......hence the b12 blood test so if its above the range they are likely to say she no longer needs them.....lol Not meant to test b12 once on injections but ignorance breeds incompetance am afraid.

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