Birthday present .: After an... - Pernicious Anaemi...

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Birthday present .

Nackapan profile image
24 Replies

After an unnecessary hoo ha of tracing my prescription I'd been assured was ready I went to pay. No charge I wax told?? They grinned abd said I'd reached 'the age

So that's a bonus after receiving my first NHS pension payment of ..£9.54 !!

A new nurse has started . She asked how often I wad having b12 injections. Had it been reviewed recently. Then asked if I'd had stomach surgery. Surely thst woukd be on my notes!

That threw me a bit

.She suggested to have an intrinsic factor antibody test

I said I'd think about it as I dudnt want a negative result to stop my treatment as nothing else has been found wrong. The only thing that has helped is b12 injections. She didn't hurt me giving it. Another bonus.

I'm deeply suspicious of bring offered one now after 21/2 ears. I will shelf the dilema for now.

Any thoughts anyone?

..

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Nackapan profile image
Nackapan
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24 Replies

Just curious had you been paying for b12 ?

Nackapan profile image
Nackapan in reply to

Not for the one given by the nurses at the surgery.Was paying my prescription charge of £9.35 for those i self inject.

Some areas give you a prescription so you pay snd collect it and then take it to the surgery to the nurses!

I don't get a prescription for needles ect though as there was a problem being able to so that.

As they are cheaper than the prescription charge I didnt push on thst and just bought them.

in reply toNackapan

Ah! So the nhs let's you purchase extra from them?

Nackapan profile image
Nackapan in reply to

No.

I have a prescription for b12 ampoules to inject at home.

You could never pay for extra only what's on a prescription with the NHS

Not sure what you mean?

in reply toNackapan

Sorry miss understood.

waveylines profile image
waveylines in reply toNackapan

Hey Nackapan......great news on the free prescriptions! Happy birthday! 🎉🎉The nurses get my needles and syringes from the local hospital. They get them for free so are happy to order them in. Maybe now they can see you are improving they will do that for you too? Saves a bit more dosh. They cant give you Separate needles and syringes on the prescription list as they are not listed!! Listed are all in one but then you cant change the needle which the nurse said I needed to because of the glass vials.

How are you these days?

Nackapan profile image
Nackapan in reply towaveylines

Thankyou fir that information.My symptoms have bedn changing. Im trying to think positive as not pleasant but I think any shift could be a sign of healing.

Did have a big set back after the first covid vaccination which was a bit of a shock and miserable.

Glad it's done though.

Finally seeing this month the

neuro opthmologist.

So still a 'work in progress'

Thanks for asking.

Last time we heard from you. You were spitting the dose .

How are you doing now?

waveylines profile image
waveylines in reply toNackapan

Aww glad you are finally going to see the neuro opthalmologist. What a long wait! Poor you.

Am ok. Move to twice daily injections a fair few months back or is it a year -time floes - and top up with methylcolabamin sublinguals when stressed (extension stresses!) My tremors have improved a lot but still struggling with bowel incontinence.........was meant to have an op......was on list for a year but then got dropped off it then consultant didnt remember me (though he did a colonoscopy over a year ago!) & wiggled out of it all by dismissing me. No follow up letters at all from a year ago or now from him. Incompetant? Over worked? Pandemic? GP backing me so will see his boss privately for a consult when am through extension stresses. Wearing pads isn't really a long term solution! Everything is a battle with the nhs.......but you know that sooooo well.

Nackapan profile image
Nackapan in reply towaveylines

That sounds awful.To opt out of an operation??

Meanwhile ask about a contraption that can be used to flush when required if appropriate. Until yiu get it sorted .

I read about it for a friend's son.

Cant tenember the name ..grr

I think poor poor admin. About your op.

Take care xx

waveylines profile image
waveylines in reply toNackapan

Poor everything! GP was appalled. I mean they told GP and me I was on op list. Maybe its a quick way of shortening it......then you become a new referral......says I cynically. And to be honest I dont want such incompetancy cutting me up!!

Nackapan profile image
Nackapan in reply towaveylines

No.I apparently didn't turn up fir a neuro Opthalmologist appointment on January thus yesr!!

I pointed out that a second letter text folliw up then sent.

No proof

Recieved nothing.

As of after all thus wait.

Like you I'm cynical it was exactly a yesr after referral date .

Missed target so funding goes down.

So knocked off list???

It was only chasing it with the help of my sugery I found out.

I was told had yo start again on a list. Oh NO

Thus is from a retired NHS worker who has had confidence and pride in the past.

I do hope it recovers with catch up to get out if it's present mess.

Admin afmin computers not linking up.

Doctors expected to fo too much admin. Not what they trained for and often useless at it.

I've been trying the NHS app. Gone through all ID access code from surgery . All it tells me is my prescription.

D I y exhausting.

There are good ones out there.

How do we throw the right 'rod's

A district nurse sent a text today saying on way to do my mums b12.

Hurrah.

A single ampoule arrived

So will have to chase that every time now.

Nothing easy it seems.

clivealive profile image
clivealiveForum Support in reply toNackapan

I bought and paid for my prescribed B12 for 30 years until twenty years ago when I reached the age of sixty after which the prescriptions were "free".

One consolation is that sixty isn't old - if you are a tree :)

(Belated good wishes for your birthday)

Nackapan profile image
Nackapan in reply toclivealive

Thank you. It was actually in June. Hope I was once a tree and grow stronger by the year !!

clivealive profile image
clivealiveForum Support in reply toNackapan

I'm just a-corn-y person :)

nellie237 profile image
nellie237

Happy birthday Nackapan. 🌸🌸🌸

I reached this milestone in 2019. I haven't had to pay for prescriptions for years as hypothyroid so exempt...........my chemist, with a big smile told me that I didn't need to sign the back of my prescriptions anymore.

'Reviews' are really worrying especially for the older population like your Mum. I find it appalling that if she didn't have you to advocate for her that her injections would have been stopped. In my opinion that goes against 'Do no harm'.

waveylines profile image
waveylines in reply tonellie237

I agree Nellie. The intrinsic factor misses loads......think it only picks up 40% of cases but GPs will use it to get out of treating and souldntbputbit pass them to stop treatment if negative. Not sure why as prescription charges dont come out of their budgets....

nellie237 profile image
nellie237 in reply towaveylines

I think all these 'reviews' are a result of the 1st Covid lockdown. I can understand GP's and nurses wanting to see fewer patients for face to face appointments, but in my opinion they should now be teaching anybody who is able to SI, and they don't seem to be doing that.

Nackapan profile image
Nackapan in reply tonellie237

Yes I'm wary I don't actually see the point now.

It is not a definitive test.

I've tried oral tablets/sprays ect.

My treatment needs to conti up.

I hate tests when you don't know if it's right or not

Even if its positive it might secure treatment but I've so much n12 in my blood.

I don't like the words shkukd or might.

I only lije tests you xsn actually act upon the results.

I think I will wait as so odd after over 2 years.

New management has brought a new nurses wanting to mske her mark.

I think she needs to read uo first though.

.

Cherylclaire profile image
CherylclaireForum Support in reply toNackapan

I think you are right. If the point is to reduce numbers of patients getting injections by using a test that can only scoop up about half the people who need B12 injections for life just to survive, then it's deluded, misguided and downright dangerous.

And that should not be a nurse's call. If this move is a surgery decision, then it should be relayed by a GP face-to-face, without using covid as an excuse to e-mail or write. That should not be a problem for anyone with the courage of their conviction.

If you are still undergoing tests, why don't they wait to see what that might offer up ?

After all, you have been waiting a long time for answers and as yet have no real diagnosis. It is beyond the remit of primary care now -so why would they run that risk ?

While on the subject of risk; how about your's ?

You have been very ill, in a way that is obvious to all - family, friends, local people - so must be evident to the surgery. You got much worse after your covid vaccination.

Could you risk having the one treatment you have been offered being stopped ?

And then having a second vaccine ?

Rather than trying for Brownie points, maybe the new nurse just wants to reduce her workload !

When my GP put me on a much more frequent regime, one of the nurses kept trying to make me go back to the GP (although she'd said "no need"), one got suspicious of me - and the other two recognised how ill I was.

This nurse doesn't know you, your history, your family history.

I'd wait- until you are sure of her. She may be aware of the inaccuracy of the test as a PA diagnostic tool, she may be trying to help you - but it's you she needs to impress first, not the GPs. Transparency of intention would have been a good start.

in reply toCherylclaire

Trouble today we have no real family doctors who know you and your family history. How many doctors look back at your notes when attending medical appointments. It's too much of tick boxes and get you out the door and the next patient in (if your lucky enough to get an appointment !).When I was young we had the same doctor of tens of years, now I haven't seen the same one for years. Just a conveyor belt. I do sympathise with the NHS with the pressure they have been under, but I also think that it's time to revert back to some of the old tried and tested practices.

Call me old fashioned if you like

🙄

Nackapan profile image
Nackapan in reply to

Yes I book with the same gp when possible. Continuity very important.

With a second opinion occasionally .

Saying that ivd had no face to face for 16 months now.

I've tried twice .

On one telephone consult told one thing only sbd tgrn call 111.

Not my gp.

That's after waiting 2 days fir s call back. I actually do not understand

Dentists are working.

Triaging in place nof working at present.

Cherylclaire profile image
CherylclaireForum Support in reply to

Not old-fashioned, it just made perfect sense- especially useful where PA so difficult to diagnose !

A bit of delving into family history in Nackapan 's case would reveal 3 generations struggling. In mine, Grave's disease, vitiligo, psoriasis prevalent - and autism in the younger generation. I'm sure plenty of other threads running through others' families. I always see the same GP because she knows what I am like at best and worst, can tell if I'm struggling, and knows where she has sent me already etc. over the past 5 years. I wouldn't have the energy, patience or memory to start again with someone else now. Or to be honest, the trust: so many GPs seem to know so little about B12 deficiency or about how severe/ numerous the symptoms can be.

It must be something that GPs would welcome too, as it would make life easier for them, a bit of detective work could help confirm their suspicions- more job satisfaction.

Nackapan profile image
Nackapan in reply toCherylclaire

Yes I agree.The whole experience threw me as I was just expecting another agency nurse.

Normally the lights are turned off for me as basic florescent strips . But she was in thd only room without a window.

She didn't acknowledge my struggle with that.

I wonder by asking if I'd had stomach surgery she was trying to dredge up anything she knew about PA ??

She wax visibly shocked at my frequency of injections.

She obviously hadn't looked at the screen.

You always look before serknv z new patient..always . Always before a consult.

Not a good sign for a new member of staff.

Haven't got the 'app' to work yet despite being told it had been done by the practice manager .

So have not been able to find out what there is to read.

You are right.

She simply was not happy said I'd need a review and s blood test.

It's not her call

I dud say b12 levrks do not need testing.

Also I wasn't happy with a test that could be used to stop treatment.

I said it all very low key as really wanted to get out of that lit room.

I've not booked z blood test snd said I'd think about it.

Very officious woman.

I'll be more prepared next time.

Oh why can't we have support and at least some understanding rather thsn being treated like a problem.

Surely Gps cant hide after the 19th!!

She should've in hindsight shown interest in my health .

Asking g how i am wouldve been a start

Not immediately wanting a review!

She also assured me my prescription had been done a week ago.

It hadn't been recieved by the pharmacy .Still wasn't there

The pharmacy rang thr surgery and got it sorted

To add insult to injury massive bruise ftom b12 injection.

Good news it seemed to pick ne up for the afternoon. Just as well to sort prescription

And the district nurse turned up to do mums b12 onjection.

My daughters was cancelled earlier j the week after getting ig moved to 10 weekly after asking for 8 weekly

It'd actually neglect .

Urging her to write for 8-10 weekly to go on her notes as difficulty with booking snd cancellations.

Not rocket science.

They don't seem to think it matters a week here or there!

Thank you for your comments.

Stops it whirling round for me!

Cherylclaire profile image
CherylclaireForum Support in reply toNackapan

I can imagine how difficult it is to have to deal with an officious newcomer when so ill, Nackapan . Plus a waste of energy. Visible shock at injection frequency means she'll have dived into your medical records the moment you left ! As you say, she really should have done her homework before seeing you for the first time. Alright, the injection didn't hurt - but caused bruising later. I'd give that one a swerve from now on.

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