B12 District nurses/HCA

[Nackapan]

I got my 91 year old mums b12 injections reinstated in November 2020 after being told to go and get b12 tablets.

1. She cant go and get

2. She can't absorb tablets

4 b12 ampoules are in her home

Last one given by a district HCA

Has them 3 monthly. Was due mid March. Noone has given it.

When I took ger fot hef second Pfizer vaccine almost impossible. Immobile shut down headaches. Argumentative. (Only with me)

Fortunately two young male volunteers lifted her from the car and put her In a wheelchair before she bad a chance to protest . I had to get her home I was then poorly for 2 days.

I suddenly realised she was like thus before when without her b12 . In January for her first vaccine it was a struggle but no comparison she was bright 'with it '

I rang ger surgery (yes over an hour on hold( They didn't know . To ring district geth team then get back to them.

District health team non clinical said had been discharged 24.12.20 No more b12 injections being given by district nurses she's to pop to a shop and buy some tablets . Waiting for a nurses to ring

Meanwhile back to her surgery as promised. Nothing on her notes about being discharged!!

Mum not informed of anything Now waiting fur a tinv back from the surgery when a doctor has been spoken to

3.5 hours later no replies yet.

This really upsets me . Old people are literally being left to die . Innocently waiting fir the 'nurses' to call.

Mu mothers response is tk 'leave lt ' and not make a fuss . But when asked if she wants the b12 injection she does. She changes when due b12 .

She does not see the connections. She really needs more thsn 3 monthly. Not a tablets !!

Surely the doctor I'd breaching duty of care??

The HCas do the they are on a band 2 or 3 . This is not expensive nurses rime who are on a band 5 or 6 . I was a band 4 for 36 years so know the wages .

Do they really think this is cost effective tk make the elderly even more ill and vunerable so they end up in hospital or with carers or in a home.

That's without their suffering being denied an essential medication.

Unbelievable what us going on.

[Janma123]

It’s appalling what is happening at present. Routine checkups have gone out of the window - probably for good although they have always said prevention is better than cure. My hubby is like your mum - doesn’t remember the benefits from the injection, and so he is taking tablets but I don’t think they have much effect. It’s heartbreaking seeing him getting very slowly worse and not being able to do anything about it.

The behind the scenes buck-passing is also frustrating considering we have better record keeping technology than ever and still the right hand hasn’t a clue what the left is doing.

I hope you get things sorted soon. Jane

[Nackapan in reply to Janma123]

Thanks. I've managed to get her referred back into district nursing.Thus was done last November when they wanted her on tablets

Now they want a blood test and if levels okay wi not give her the b12 injection

That's the doctors decision. So I really hope as their mistake bloods won't be done.

She's been with thar surgery since 1959 .

I've not spoken to her doctor.

I've spoken tk the district nurse. The actual one that has her on her caseload.

She didn't understand b12 at all.

I have outlined her decline.

She was more concerned if she coujd crawl to the surgery to have it. J told hef they are not happening at the surgery

I want this sorted as if (I hope not) she ends up jn hospital or a home she won't receive them if we take it into our own hands as wong be on her notes

I.vw finally hot my covid vaccination locally tomorrow They are done at my mums surgery. I will ask and state her case again.

Only way I can get in there!!

!!

Spoke to mum. She thinks she does need if as not feeling right .

She just diesnt like seeing me agitated .

She says its no good for me.

She's right there.

It's also no good for me trying to do more for her as her treatment withdrawn.

Diabolical really.

[Cherylclaire Forum Support in reply to Nackapan]

Glad you could talk about it with your mum.Such a lot of time-wasting when it takes just a couple of minutes and can really affect quality of life. Energy-sapping for both of you too.

Also glad you are getting your vaccine.

Take care.

[Nackapan in reply to Cherylclaire]

Thank you. I moved to be in running distance to my mum after my.dad died.Not that i can run now!!

Yes communication a problem with her being very deaf and I'm only able to uses a loudspeaker on the phone .

So inperson best.

Hoping bloods are not done to test b12 levels . Not only not needed but painful fot her now.

As well as a waste of money.

And could block b12 treatment . Interestingly in November when it eS just done . No text . It didn't. Don't know the levels as mum doesn't ask anything.

Will find out later hopefully when it's being done.

It was their mistake discharging her in December so 🤷

Not sure if members have all got the PAS newsletter yet.

If so any problems you've had or family member there is a link to report it

I will be doing that in separate entries for every hurdle during the pandemic so will take some time.

I think short separate emails may make more impact.

If you can it's best to put in dates.

Sress caused

Symptoms caused

PAS are feeding it all back to The NHS

Perhaps you don't need to be a member to do this. Makes more sense.

[Cherylclaire Forum Support in reply to Nackapan]

Yes, a waste of money.I really hope that, since B12 injections were stopped during pandemic originally to protect patient and nursing staff from the inevitable close contact, they would not now believe that risk is worth it for a blood test ! I can see no reason for them to want to do this, other than to decide her level is now "normal" enough not to warrant another injection.

There is no point testing B12 levels once injections have begun, other than if there is a suspicion of functional B12 deficiency -which is rare and would hopefully have been recognised much earlier. The only other reason that I can think of is if the patient is taking tablets, and there is a suspicion that the tablets aren't being taken. Neither of these apply to your mum.

Face to face always best - my mum lived very close to me, and I could never entirely feel happy that she was okay unless I saw her. The phone is just not the same, is it?

Plus mums often say "I'm fine" when they're really not.

Trouble with them stopping injections for anyone is that later deterioration could then get misdiagnosed as one of many syndromes, or through consultants diagnosing each symptom individually, and of course there's always Amitriptylene. You could easily find yourself right back at the beginning !

Glad you are there to ensure that your mum gets what she needs.

[Cherylclaire Forum Support in reply to Nackapan]

- Just got the newsletter today, and filled out the survey. Don't know about 10 minutes- everything takes me so long (too much to say!).Saw the links to reporting to NICE about treatment of you/ family member.

That could really make a difference- worth doing and the more the better.

[Nackapan in reply to Cherylclaire]

Yes i did that survey. Not 1o mins fir me either lol

[Cherylclaire Forum Support in reply to Nackapan]

Yes- we're neither of us masters of the soundbite, are we Nackapan ?Started your painting yesterday, you'll be glad to hear.

In all other ways, I'm not doing so well lately: phone too loud, TV too hard to follow, no energy, hair falling out again and mouth splitting etc.

Luckily for me, can still paint -but not much use for anything else at the moment. Not seeing grandkids this week- don't want to scare them off !

Have added Floradix to my daily input -see if that helps. Can't be bothered with the current rigmarole just to get a blood test done.

[Nackapan in reply to Cherylclaire]

Oh thats rubbish. You enjoy seeing grandchildren.

Floradix is easily absorbed so j hope that gets extra iron into you if you think that's the problem with hair loss

Your last bloods were good as i remember.

I seem to be in a particukary bad patch too?? Can be worses though and have to remember that.

With me it's when I'm trying to act 'normal'

Lawn mowers and a new driveway work on 2 houses and then the drone if the machines to clean the new brick paving.

Noise which is very hard to distract from

Nor even attempted tv since December. Did manage a bif of radio today as the astra zenica wiped me out. Only to a into a debate about blood clots ..vaccines ....ugh. so changed that station.

Something different for my body to deal with. couldnt believe how painless the actual injection was. Glad its done for now.

You might be underestimating the effect of actually having covid has had on you??

I wrote fir a blood form thats being posted.

No rush as the Gp rang last about highest ever cholesterol levels and j was told to walk 2 miles a day

And push through. She told me to pace and rest last time!!

I've written a food diary as gone back to how i used to eat.

I've lost weight so hopefully the good fats raised the 'good cholesterol '

Ratio okay I thought thats what is important these days .

I got my sister to cut my hairoff until i can get to a hairdresser.

For some reason she didn't want me to return the favour lol

So much easier to get oil onto my scalp.

So I'm really scary to look at now. Children don't notice . But obviously zap energy.

Perhaps some scalp nutrition could help you or eating even more nuts and avocados. I have the milled nuts now fbirder recommended when tooth extraction stopped me eating hard things.

Hope youve plenty of nipple cream to heal your mouth again.

Olive oil I've found good for scalp and lips. Also lavender oil I uses fir most things.

Sometimes i realise there's no rhyme or reason for this rollercoaster.

Glad you are able to paint .

I hope then you csn be in your 'Own world ' for a while.

Hope the subject matter not too challenging or boring lol.

Take care. Hope you pick up soon.

P.s

My survey I took ages to complete didn't send ??

Came up with

Oops an error

Well I assume didnt send lol. No idea willi look again another day .

Someone recently posted about a switch being turned and so much better. Let's hope that happens for everyone at some stage in their recovery.

[Nackapan in reply to Nackapan]

The survey did send as j tried to do it again and it told me!

[Cherylclaire Forum Support in reply to Nackapan]

Glad to hear you got to have your say in the survey: important that we do. Would feel like hard work doing it over, though !

To be honest, I didn't have the energy for the grandchildren today - and you can't pretend with kids, can you ? I know what you mean about how draining it is to "act normal": felt like that at work in the end, which is why the opportunity for voluntary redundancy came as somewhat of a relief. Enjoyed doing more to the painting today- and not messed it up yet !

Yes, I was thinking iron because that's about the only thing not in my multivitamins & minerals tablets ! Think you are probably right about covid having an impact. My last blood results in November were the best I'd had for years- except for my cholesterol, as well! I was sent info on reducing it along with a copy of my results. Think covid would have been harder to beat if I hadn't been in such a good place.

Waiting to hear when I'm having my second vaccination. Hope you soon feel better. My first vaccination made me feel quite rough, but only for a day or two - then back to "normal".

[Nackapan in reply to Cherylclaire]

Spartone is another good way to get extra iron. Only 5mg but can have more than one through the day as absorbs better that way . One of my daughters uses it all the time as her hair was falling out and other symptoms of low ferritin. She also uses floradix. Has tablets of it too. So difficult to get the right balance. Especially ad we have no idea what is actually absorbed and utilised.

I'm in the ,'rough stage as spiked a temperature 27hrs after vaccine chest tight and heart thumping suddenly last night. Soon over. Quite frankly sick of fatigue and dealing with it all.

They say a good strong response means a strong immune system but it works anyhow. ??

Herd immunity is our only option it seems at present.

Yes hopefully back to better than recent 'normal' soon.

Good to have a day off with out children if your energy very low. Hope you see them soon.

Also second covid vaccination over and done with soon.

Good voluntary redundancy came for you.

NHS documents in the post . Pension kicks in soon. I wont be getting that Ferrari 🤣(not that I ever wanted one lol)

When well enough I will also email NHS England with comments about poor general PA understanding and treatment.

Want to give that my full attention. Vision far too blurry today .

Mind you typos might make them read it more !!

Needs something to make our comments stand out and actually taken on board

It all must help surly.

[Cherylclaire Forum Support in reply to Nackapan]

Sorry to hear about your vaccine reaction. Perhaps more likely to have hypersensitive immune system (?)Never mind about the Ferrari, you've still got your bike. Now all you need is the energy to use it. I'm aiming for "skint but happy", how about you ?

Feeling a bit more like me today.

Perhaps it's the sunshine doing me good - and that, at least, is free.

Just have to be careful not to burn my bald bits- might have to buy myself a hat like your's !

[Nackapan in reply to Cherylclaire]

Oh yes ivd been skint and happy many times. Handkerchief on your head will do thd trick lol.

That hat on loan from a daughter can't see them wanting that back

Glad you feel brighter today .

Im waiting for the haze/head to shift . B12 day so that should help.

[Cherylclaire Forum Support in reply to Nackapan]

Let us know tomorrow, okay ?

[Nackapan in reply to Cherylclaire]

Yesterday pottered a bit in the garden good to get outside then jittery again so back on the bed Didnt sleep too badly despite very sore arm and aches . Have taken paracetamol as if wears off get jittery so I assume low grade feverToday thought must be over the worst .

Had it Wednesday night.

Now Saturday.

Up annoyingly early.

Went down for breakfast after a bath . Felt okayish.

Downstairs and thought oh no ....that feeling of can't stay upright alss hanging onto things.

Bad memories .

Nausea when trying to eat but got it down me.

So weak

. Upset stomach.

Sat on the bed again.

Looked at the side effect list.

I only look after mostly ,to reassure myself within 'normal '

As the sudden onset 27 hours after chest tightness and thumping heart

And severe weakness not listed I found my card with the batch number on it(well I didnt(

and reported it in the yellow card system .

Only to find I'd done it already with no recollectiin !! And no batch number put on.

So I'm stuck on the bed unable to move much.

Just waiting for it to pass . Time zooming by as it does when 'out of it'

I think my b12 yesterday morning got me into the garden so I think I will have a higher frequency this week.

So important to get the vaccine done

Herd immunity ect .

I just seem to 'over respond' to any meds.

Not had a vaccine for 40 years. I think my body is saying what now??

My mum was fine after her 2 bit of an achey arm for a few hours .

So.odd after over 100 ++ of b12 injections going in my arms I get bruises . Hurts at the time . Alot of the time IM . Got sore muscles in arm before deciding yo do mostly sc.

My arm is visibly swollen at present. A huge bruise looming under the skin so sore . I didnr even feel the vaccine going in??

Realuse I'm prattling trying to make sense of it all.

Thank you for asking me to let you all know!

Hope you and everyone have a better day .

Cold but dry .

Good for walks.

[Nackapan in reply to Nackapan]

For animal lovers I was pinned down by 2 cats yesterday to keep still. Today they are on a rota with a rare appearance upstairs from a cat that's mostly outside.

Wondering where I am probably

Haven't brought a cup of tea yet though !

[Cherylclaire Forum Support in reply to Nackapan]

Please ensure that your GP is aware of these ill effects. They should know what is within the range of a "normal" reaction, what is acceptable. My arm was also swollen but no bruising - couldn't raise it for a good few days though.

But the dizziness and weakness that you are getting - as you said, bad memories.

Up your frequency - could help you, and won't harm - but do contact your GP.

I'd like to know that they are keeping an eye .

[Nackapan in reply to Cherylclaire]

Yes will inform Gp if possible today.

There's always 111 as well.

Have used that once before .

I think its a matter if sitting it out .

I apologise,

I wrote too much.

Like we all know on here ,always get things checked by your doctor if concerned

[Cherylclaire Forum Support in reply to Nackapan]

No you didn't write too much. Have had a look at "possible side effects" for AstraZeneca.

Feeling sick (1/10), being sick (1/10), feeling dizzy (1/100) and flu-like symptoms(1/10) are mentioned. It says most in trials were mild to moderate and resolved within a few days.

Since yours doesn't sound moderate, best to check by talking directly with a medical professional: hope you can get to talk to someone on Saturday, and put your mind at ease.

[Nackapan in reply to Cherylclaire]

Thank you

[Nackapan in reply to Cherylclaire]

Just to let you know I think I'm 'crawling out of the hole' now. Arm more noticeably very sore and itchy.

So other things must be better to notice more?

Still a away to go to even get to where I was before the vaccine !

Read somewhere it 'validates ' an ongoing condition ' to react more??

Picks on your vulnerabilities.

Hope every ones second one is more straight forward as your body has encountered it before.

I do realises this is unusual....typical

Most are fine

It's also good to be aware some do get ill like me.

Have to be on high alert to act quickly if needed .

[Cherylclaire Forum Support in reply to Nackapan]

Relieved to hear it.So much not known yet, it seems.

[Nackapan in reply to Cherylclaire]

Alot unknown. I'm still on the bed. Am booking an appointment with known G.p.tomorrow

111 still operating

My friend s brother I now know had a bad reaction but only lasted 3 days.No underlying known problems. Had his second one on Friday so hoping his second is better.

Alot if people coming out if the woodwork.

Some with underlying problems having relapses with their ongoing symptoms.

Some have been told it validates their ME or whatever. !!!what a thing to be told.

So another lottery it Seems.

Hope you are feeling better than you were .

[Cherylclaire Forum Support in reply to Nackapan]

Yes, much better. Thanks Nackapan and wishing you the same.

[clivealive Forum Support]

😠

[Nackapan in reply to clivealive]

Mum has a referral back into the district nursing team to get her b12 Injection done.Just hope bloods are not done I'm told sgoukdnr be necessary.

It's happened before someone just turns up and it's done.

So much for not letting strangers in un announced !!!

[bjhealing51]

I was having the same problemI asked the surgery if I could self inject and they were quite happy for me to do this

If you are comfortable to do it and your mum agrees

I just get the prescription at the chemist and the surgery will give you needles

It saves them time and as you have some medical training they will show you how to do it safely

[Nackapan in reply to bjhealing51]

Im actually not medical. They certainly won't train me .No time. I worked in the NHS as a band 4 . Assisting midwives on maternity.

Community teams on child protection behaviour issues feeding ect ect ect.

I do my own b12 and have a prescription but sc.

Good idea but it would be another hurdle as sc not licensed and it took ages to get my own prescription and 'consent to sc b12 at home.

Mum needs to be seen occasionally too.

One district health worker trained to do the Injections noticed hef mobility problems . She then had a referral fir pysio fir a while.

I'm so tempted but won't do a sc one .

Ladt time without warning someone turned up tk do bloods . 🤔

Mum would tell them too also not sure if she'd let me anyway.

Thankyou for your thoughts .

It will get sorted but annoyed with the energy it takes.

Also worried for others

I made the assumption if was done. I do provide a diary and calender but it's rarely if ever used. If I'm aware I uses it !!