Is our NHS REALLY this hard up!!?? - Pernicious Anaemi...

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Is our NHS REALLY this hard up!!??

Ritchie1268 profile image
β€’31 Replies

While I was at my Dr's this morning I asked him about self injecting (which I now do every other day or so), he still said the NHS guideline is still every 3 months. So I told him to check the latest guidelines regarding every 2/3 months. Apparently they have to wait till NICE tell them & he hasn't heard anything other than 3 months!?

He didn't agree but he didn't disagree with me SI after telling me my B12 level was 125 when diagnosed in April 2018 & after I told him that once diagnosed, it doesn't make any difference what your B12 levels are, he now wants me to have my B12 level checked!!

But, the thing that totally blew me away was this. I asked him why my prescription of Folic acid was stopped last month, as I had been diagnosed with Folate & B12 deficiency, along with Pernicious Anemia. I said I thought I was supposed to take 400ug of Folic acid per day to help with the B12. "Yes that's correct" he said. So why was it stopped then? His reply was "To save the NHS money"

It was all I could do not to swear & rant so I just laughed & shrugged my shoulders.

I knew the UK under this Pathetic government was struggling but, is this country really in such a bad way!???

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Foggyme profile image
FoggymeAdministrator

Hi Richie. Your GP is wrong about having to wait for NICE to inform him of the alterations to prescribing intervals for hydroxcobalamin.

The online version of the BNF (prescribing guidelines for all drugs) has already been updated, as follows:

Hydroxocobalamin...

By intramuscular injection

For Adult

1β€―mg every 2–3β€―months.

(GP may be awaiting new version in paperback edition - which they have on their desk - so will have to view online for recent update)

All your GP has to do is look!

About the folic acid...prescriptions for many over the counter vitamins, minerals and drugs was stopped some time ago (I.e. folic acid, paracetamol, antacids...to name but a few items)...all these things cost less to buy over the counter, than on prescription.

For instance, folic acid 400mcg costs Β£2.70 for 90 tablets on prescription (plus add-on costs for admin, GP, and pharmacy time). The same costs Β£1 if bought from Tesco (equal quality etc.). So yes, changes introduced to save money.

A sad fact of the times...🀨.

As for checking your B12 levels following injections...nonsense, as you know. Costly nonsense, at that!

Come back if this impacts on getting the frequency of injections you need and we can point out evidence that you can take to your GP, if you need it.

πŸ‘

Ritchie1268 profile image
Ritchie1268β€’ in reply toFoggyme

Thanks Foggyme.

I told him to look online & where to find it etc.

Couldn't believe he wanted me to be tested again though.

I have a year's supply of B12 if I inject every other day that I got with Wedgewoods help from Amazon in Germany.

I hate needles though & I've wasted some as I've just stared at the loaded needle for hours sweating & shaking & end up throwing it! Don't know why as I've done it myself 7 times already in my leg & it doesn't even hurt! My partner does it for me at weekends but I just can't bring myself to do it at times. I'm strange like that πŸ™„πŸ˜

The day I couldn't get Folic acid I got a bottle from my local health shop for just over Β£3 so have been taking it regular.

I was just surprised (though I shouldn't be) the reason he gave for no longer getting it on prescription.

Thanks for your reply & help! πŸ‘

Ritchie

Foggyme profile image
FoggymeAdministratorβ€’ in reply toRitchie1268

Oh Ritchie1268...we're all strange in our own particular ways πŸ˜‰πŸ€£πŸ€£.

When shaking and sweating, load a syringe with water and inject repeatedly into an orange...and when shaking and sweating stops, substitute with a thigh...sounds silly but as pain is not the issue, habituation might just break that barrier.

Good luck with all πŸ‘

Ritchie1268 profile image
Ritchie1268β€’ in reply toFoggyme

Thank you again!!

My partner is a first responder & she actually got me to practice on an orange!

That was easy, but when it comes to actually sticking it in me, it's a whole different story.

The funny thing is & excuse me for saying this, I've lost loads of things with PA & B12 but my sense of humour remains! My partner said to me when I said I just can't do it: "well I've been used to having a small ***** for years so I don't know what your problem is!

πŸ™„πŸ€” Don't have a clue what she meant by that, all I can say is it's a good job I Love her πŸ˜‚πŸ˜‚

Foggyme profile image
FoggymeAdministratorβ€’ in reply toRitchie1268

Thank everything on this earth...and beyond...for retained sense of humour...and for a partner who's handy at those jabs.

Well done done you...and her πŸ˜‰πŸ˜€

Ritchie1268 profile image
Ritchie1268β€’ in reply toFoggyme

You just have to laugh don't you, or we'd all just crack up!

We laughed so much the first time she injected me, even though she's injected people before, I suppose it's different doing it to me. She held it like a dart, I said what you doing, I'm not a dart board!

Her words were, "I've put up with this for years, now, you're finally gonna feal what it's like to have a small ***** put in you for a change, God love her πŸ€”πŸ™„πŸ˜‚πŸ˜‚πŸ˜‚

Foggyme profile image
FoggymeAdministratorβ€’ in reply toRitchie1268

I’ve Just put in a few *****...spare some blushes πŸ˜³πŸ˜€

Ritchie1268 profile image
Ritchie1268β€’ in reply toFoggyme

Sorry I got carried away πŸ˜— Thank you!! 😁

Foggyme profile image
FoggymeAdministratorβ€’ in reply toRitchie1268

No problem...πŸ‘

Ritchie1268 profile image
Ritchie1268β€’ in reply toFoggyme

Foggyme.

Does it really cost just Β£1 from Tesco for Folic acid!

I know the first time I misplaced my folic acid tablets prescription (Brain fog & still haven't found them!!) I bought Folic/iron tablets from Boots but, when I told the pharmacist what I bought, she said I'd have to take the whole bottle to equate to the 400ug per day I used to get on prescription.

But thankfully I bought a months worth of 400ug per day from local health shop for I think was Β£3.26 for a months worth.

If Tesco is around a quid for the same I'll head to Tesco πŸ‘

Foggyme profile image
FoggymeAdministratorβ€’ in reply toRitchie1268

Yep...Tesco..Β£1 for 90 πŸ˜‰

Ritchie1268 profile image
Ritchie1268β€’ in reply toFoggyme

Brilliant, you're a star, thank you!!!

I have about a weeks worth left but, I'm at my partner's over the weekend who has a Tesco around the corner from her.

Think I'll be like a dodgy person at Xmas & buy loads to stock up at that price, just incase we get snowed in! πŸ˜‚πŸ‘

Foggyme profile image
FoggymeAdministratorβ€’ in reply toRitchie1268

Folic acid with a snow chaser....🀣

Ritchie1268 profile image
Ritchie1268β€’ in reply toFoggyme

Exactly πŸ˜†

But mine will be Folic Acid with a B12 chaser given by my better half, with a snowball to follow πŸ‘πŸ˜

helvella profile image
helvellaβ€’ in reply toRitchie1268

According to mysupermarket, who are not always right but usually not far off:

Valupak Folic Acid 400ug Tablets (90)

Ocado Β£1.00 1.1p / Tablet

Morrisons Β£1.00

Ritchie1268 profile image
Ritchie1268β€’ in reply tohelvella

Thank you helvella!

Gives me another option if Tesco have sold out.

Way cheaper than the Β£3.26 from my local health shop for a month's supply & even cheaper than a prescription!

Also, anything I can do to help save our country money & to help out our lovely caring government in their many cost cutting they are doing hey! Always willing to help πŸ€—πŸ™„πŸ€”

helvella profile image
helvellaβ€’ in reply toRitchie1268

Mind, looks like Tesco are offering three-for-two... :-)

Ritchie1268 profile image
Ritchie1268β€’ in reply tohelvella

Ooooooh!!

Guess I'll be Off to Tesco over the weekend then to get stocked up, just incase we get that

"polar vortex" We're yet to have that we should've had weeks ago! πŸ˜† I'll get a couple a year's supply if it's on offer with 3 for 2 so I can stock up for years just incase they're going to tell us that that Polar vortex We're yet to have turns into the next Ice age πŸ˜†Thank you helvellaπŸ‘

helvella profile image
helvellaβ€’ in reply toRitchie1268

The offer (they say) continues to 2020!

Ritchie1268 profile image
Ritchie1268β€’ in reply tohelvella

Well that gives me loads for hardly any Β£ squids!

Thank you πŸ‘

Liz061254 profile image
Liz061254β€’ in reply toRitchie1268

I buy all my co factors from Amazon and my injections Vials/ needles from Germany as I got so stressed out trying to get help from my GP and the most annoying thing about iris I was perfectly healthy until The NHS made a pigs ear of taking my gallbladder out 14 years ago and near killed me through gangrene & MRSA. Lost half my stomach & small intestine. Leaving me with Pernicious Anaemia almost bed ridden until I took on my own care.

clivealive profile image
clivealiveForum Support

Hi Ritchie1268 my 87 years old next door but one neighbour needed to have her ears syringed but her surgery (one mile away) said they could/would not do it and referred her to another NHS "establishment" five miles away on the other side of town who charged her Β£60 for two ears.

My "rottweiler" wife who drove the lady the ten mile journey there and back demanded to know why the charge was so high and was told it was all about costing the practice nurses time. Woof.

My surgery (two miles away) did my ears a month or so ago for free.

I must admit that I have cost my surgery dear over the last 53 years for more than 46 of which has been the supply and injecting me with Vitamin B12 for P.A. and I have to wonder how long it will be before "things change".

Ritchie1268 profile image
Ritchie1268β€’ in reply toclivealive

Hi Clive.

It's a very strange world we live in now my friend!!

I'm 51 now from (January 2nd) & worked damned hard from age 14, (markets at weekend while at school etc etc)

But, for 20 years I was hand stacking 125kg X 3000 concrete slabs daily which is now why I have degenerative disc desease in 5 discs in my back etc etc. But for the last 6 of the 26 yrs I worked for the same company, I was Operations Manager paying 40% tax etc, so I do apologise for the slight rant at my GP this morning but just wondering why after paying very many thousands into it over my working life, why they stop something they say I need for such a tiny cost!! But I'll buy it myself as I have been doing, it was just hearing it from my Dr's mouth, I thought Wow, this country really is now struggling πŸ™„

I was talking to my partner about it at the weekend & said. How come if we're (currently) all part of Europe, can I get B12 ampoules in Germany & Spain etc from any pharmacy over the counter, yet this daft country won't allow it.

She said as a first responder, even all counties are different in the UK.

Instead of having the same guidelines etc, for example, you'd be in Derbyshire where I am & in Staffordshire, 1 mile to their border from me, every policy & guideline is different.

But, when you have our current totally clueless health minister who says that "prevention is better than cure, eat loads of broccoli to prevent B12 deficiency" then what hope do we have Clive?? πŸ˜‚πŸ˜‚πŸ˜‚

Perhaps you should point out to your GP that failure to treat PA effectively runs the risk of long term neurological damage. Therefore, in alignment with the new NHS 10 year plan perhaps prevention might be better than cure?

PoDundee profile image
PoDundee

That’s awful. Contact your MP.

Ritchie1268 profile image
Ritchie1268β€’ in reply toPoDundee

Thank you. But I don't even know who my MP is now.

I contacted my MP around 4yrs ago when I wasn't getting the help I needed to get off the legal Heroin I was put on by my then GP for the disc desease in my back who got me addicted to something I knew nothing about. When I said I wanted my life back & wanted to come off the stuff that was responsible for killing very many thousands in the USA, I wasn't given the help I needed.

My MP even though he tried, didn't offer help, it was only through a drug charity in London that I got the help I needed & have now been free from it since August 2015, but it's taken a while & took away parts of me that still haven't returned.

Thank you for your comment!

Ritchie

Sleepybunny profile image
Sleepybunnyβ€’ in reply toRitchie1268

This link should list MP for your area.

parliament.uk/mps-lords-and...

Baggy8 profile image
Baggy8

I take the cheap supermarket folic acid from the supermarket. Just as effective . Like our own budgets, the NHS pennies count. If saving money this way means there’s more available for life changing drugs, so be it.

Ritchie1268 profile image
Ritchie1268β€’ in reply toBaggy8

I totally agree with you!

But I was gobsmacked when my GP actually told me! Especially when he said I needed it.

But do you really think the money saved will go back into the NHS to offer "Life changing drugs" that's where I have to totally disagree with you, sadly!!

Sleepybunny profile image
Sleepybunny

Hi,

"after I told him that once diagnosed, it doesn't make any difference what your B12 levels are, he now wants me to have my B12 level checked!! "

Have you shown him a copy of the BSH Cobalamin and Folate Guidelines with the relevant bit circled in red?

BSH Cobalamin and Folate Guidelines

b-s-h.org.uk/guidelines/gui...

If you look at the summary of B12 documents in third pinned post, there is info about testing B12 levels after treatment has started.

Ritchie1268 profile image
Ritchie1268β€’ in reply toSleepybunny

Thank you

sleepybunny that's a great help!

I do think, especially after the folic acid prescription, he will say I no longer need the injections now due to my now high levels of B12 due to me now self injecting.

My symptoms would return after only 3 days of the 3 monthly injection, to what I used to call "feeling normal" so I'll be sure to show him this.

Thanks again πŸ‘

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