A victory with my NHS GP! 🥳 - Pernicious Anaemi...

Pernicious Anaemia Society

32,627 members23,989 posts

A victory with my NHS GP! 🥳

ClaireWF1346 profile image
50 Replies

I just wanted to share my joy that I've won my battle with my local surgery to get my EOD B12 injections on NHS prescription! After complaining in a persistent and factual manner about their handling of my health issues, I asked for them to provide injectable B12 over a pill that my stomach can't absorb. After my visit to Cambridge, I now have this on my medical records:"When you are running low on Hydroxocobalamin request more".

A small triumph and perhaps this campaign has helped their B12 deficiency education for future patients 🤞🏽

Written by
ClaireWF1346 profile image
ClaireWF1346
To view profiles and participate in discussions please or .
Read more about...
50 Replies
Jillymo profile image
Jillymo

Well done. 👏 🥳

I am also self injecting on the NHS !

What a triumph. 🤸

ClaireWF1346 profile image
ClaireWF1346 in reply toJillymo

I doubted they would even give me one every three months, but to agree to EOD dosing feels like a big win!

Jillymo profile image
Jillymo in reply toClaireWF1346

I used to have a district nurse do my injections every 2 months but sometimes they would miss me ! I got very annoyed and told them if they didn't come out I would do myself and did exactly that. Two months later when the nurse called there were two of them who had come out to show me how to self inject. I had been doing my own injections for three years but they didn't know that. I now get a prescription together with sharps to do myself. 😃

It is ridiculous to offer PA patients oral meds when they know full well they are not able to absorb them.

High five. ✋

ClaireWF1346 profile image
ClaireWF1346 in reply toJillymo

My GP didn't even flinch when I mentioned I would be SI...and he seems keen to be educated on this condition, so I feel like it's been worth the hassle. Last thing we all need is more stress! Sounds like you were an original trooper! I just need to figure out what to do with my sharps when the time comes...but I guess if the NHS are providing the B12 then they'll hopefully take my bin away?! Is that what happened with you?

Jillymo profile image
Jillymo in reply toClaireWF1346

I have to arrange for the council to collect my sharp bins !

Here is a tip - dont put the glass ampouls or syringes in the bin that way it takes much longer to fill. I have a jar I put the ampouls in and reycle with the glass and plastic covers and syringes go in with my plastic recycling. 👍

ClaireWF1346 profile image
ClaireWF1346 in reply toJillymo

Thanks!

MorningMist profile image
MorningMist in reply toJillymo

I’m glad I saw your reply on this. I constantly wonder how much to put in the sharps bin. I suppose the clue is the name - that it’s really for needles . Understandable in a medical setting not to separate the syringe.

Jillymo profile image
Jillymo in reply toMorningMist

Trying to get hold of the council is like trying to get hold of a Dr these days. As you have pointed out it is a 'sharp bin' and the plastic can go in the recycling. The ampouls I put in an empty jar and put in with the glass items to be recycled.

Bellabab profile image
Bellabab in reply toJillymo

If I were a council waste recycling worker and came across syringes with a red fluid in it I think I might get quite alarmed. To risk this to save pennies on a recycle bin is perhaps not the best decision.

Jillymo profile image
Jillymo in reply toBellabab

It is not a case of saving pennies it's a case of trying to save time in arranging for the council to collect.

There is a big difference between blood and B12. I rinse the syringes out before putting in the recycling so there is no problem.

Our recyclers come across all sorts of things such as sanitary wear so a syringe is of no threat and the sharps are safely put in the sharp bin to be disposed of.

Enuffisenuf profile image
Enuffisenuf in reply toBellabab

I was a bit concerned about that, so draw up a bit of water to flush out the pink. I wanted the plastic recycled rather than incinerated.

HeartyGilly profile image
HeartyGilly in reply toClaireWF1346

The Council will take away full sharps bins.

grumpyold profile image
grumpyold

I'm so pleased that you have won this battle.

So, going to the clinic in Cambridge was worth it then. Did you have a face to face with Dr K?

Did you need to provide your own blood test results?

I only have private blood test results which suggest I have macrocytic anaemia (above range MMA.)

NHS test results only show me just above range for MCH and MCV. They have just dismissed these above range results for years. Does being just above range, matter?

If you don't mind me asking, what was the cost?

We have "spoken" before on this forum......I am currently trying to weigh up my options/cost between getting 6 jabs from a beauty salon v having an appointment with Dr K.

I have no functional B12 deficiency diagnosis. I would hope that Dr K might help with this and I might be able to "persuade" the NHS that I do need help.

Again, just really really happy for you. Take care.

ClaireWF1346 profile image
ClaireWF1346 in reply togrumpyold

I'll drop you a private msg later x

grumpyold profile image
grumpyold in reply toClaireWF1346

Thankyou. x

Myoldcat profile image
Myoldcat in reply togrumpyold

I think seeing Dr K could be a longer lasting investment.

Nackapan profile image
Nackapan

Well done for your persistence. I also had EOD from Decrmber 2018 after going through 6 Gps finding one that listened snd prescribec what i needed .

I then went o to SI sc at home.

Presently have a 2 week NHS b12 injection / prescription.

Has however been challenged many times.

Good for you.

As fof j bub mh oe shatpx box sharps £1.70 ax one prescribed wax huge .

My council subtract and the company collect the sharps box.

I also buy my needles as was easier .

ClaireWF1346 profile image
ClaireWF1346 in reply toNackapan

I went through three GPs and a sent a stinking complaint...but so far, it seems to have worked. I don't expect GPs to be experts in every medical condition but just to refer when they're unsure or in my case (presenting them with PAS etc info) listening to patients that have done research. Not to sit arguing about the meaning of a negative IFAB for example and just handing out a totally useless pill with no further investigation...

Nackapan profile image
Nackapan in reply toClaireWF1346

Totally agree .Takes alot of energy .

Good to get success and hoping it helps the changes for future patients and us .

Delilahmy profile image
Delilahmy

hi Claire …. Really good news. Could you share the contact details with me for Dr K … thankyou

Orchard33 profile image
Orchard33

Brilliant. Well done and a precedent.

Myoldcat profile image
Myoldcat

That's excellent news Claire, the icing on the cake! My GP also started prescribing my B12 ampoules after I saw Dr. K and he wrote me a letter. I really felt it took the burden of decision making from the GPs busy shoulders and it wouldn't have happened otherwise. I also hope the next PA/B12 deficient patient he sees may be more sympathetically treated when they say they can't wait 3 months for their next injection!

ClaireWF1346 profile image
ClaireWF1346 in reply toMyoldcat

That it also my hope! Whether that knowledge will extend outside this GP I now see or not is a different matter. I'm yet to receive a full response to that letter...

Nackapan profile image
Nackapan in reply toClaireWF1346

I've not been to Dr k.Can be done without as wd know and shoukd be

Jason_h123 profile image
Jason_h123

excellent news, his letters certainly made a difference to me getting the same, although it is up for review at the moment so will see what happens!!

ClaireWF1346 profile image
ClaireWF1346 in reply toJason_h123

Good on you! 🤞🏽It continues

waveylines profile image
waveylines

Well done Claire. I've have them everyday on GP Prescription, via NHS Neurologist for about 4years. New GP Practise sropped thrm via a letter no consultation but my neurologist has got them reinstated. Makes a massive difference.

There's is a lot of nonsense that is spun that we only need jabs 3 or 2 monthly but if you don't store it like me you need them far more frequently. I do think these specialist pharmacists are reeking harm to patients as at the time thry told me there was insufficient clinical evidence and its outside prescribing guidance. Even though its guidance not rule!! Seemed my nhs professor of Neurology letter was not enough for them!! He sorted it though. Grateful to him.

ClaireWF1346 profile image
ClaireWF1346 in reply towaveylines

Good to hear someone with a positive NHS experience! There was no referral the cards for me despite neurological symptoms but it's nice to know somebody had the necessary treatment!

Nackapan profile image
Nackapan in reply toClaireWF1346

Thete are many positive NHS experiences and treatment but negative seem to be reported more .

Many Gps won't think out of the box or refer or think they know best when they don't on b12. !!

Nackapan profile image
Nackapan in reply towaveylines

Yes pharmacist mucked up my 2 weekly prescription .Blocked on computer as not within set up on computer of 'normal prescription '

So I fact my b12 stopped by a computer programe!!!

Luckily had a recent prescription.

Nurse refused and highlighted prescription not on my notes...grrr

Got the IM one that day as wasn't budging

Same as you got it reinstated twice from that cause .

B12again profile image
B12again in reply towaveylines

Just a heads up in case it’s not been seen. I’ve ask you a question in ‘chat’, never used it before. Thanks.

NOTI1 profile image
NOTI1

Hi Claire, that's great news, congratulations; progress for one gives hope to us all. Please could you also give me the contact details for Dr K.

Doris11 profile image
Doris11

Fantastic 🤩

Alpaca24 profile image
Alpaca24

Hi Claire, great to read about your success! Could you also send me contact details for Dr K please? Many thanks

Sleepybunny profile image
Sleepybunny

Well done for your persistence, ClaireWF1346.

Sleepybunny profile image
Sleepybunny in reply toSleepybunny

Thought this might be useful for you and others reading this thread.

Help for GPs

1) PAS website has page for health professionals. They can join

PAS as affiliate members, no charge.

pernicious-anaemia-society....

2) Club B12 is a group of researchers and doctors across world who are looking into B12.

They have regular zoom meetings and have hosted a conference in UK.

club-12.org/

3) Good articles to pass to GPs.

From Mayo Clinic, US

pubmed.ncbi.nlm.nih.gov/311...

The Many Faces of Cobalamin (Vitamin B12) Deficiency

Bruce H R Wolffenbuttel 1, Hanneke J C M Wouters 1 2, M Rebecca Heiner-Fokkema 3, Melanie M van der Klauw 1

Affiliations expand

PMID: 31193945 PMCID: PMC6543499 DOI: 10.1016/j.mayocpiqo.2019.03.002

Free PMC article

Recent BMJ article about B12 deficiency by B. Wolffenbuttel

In my personal opinion, he's one of the few doctors who understand B12 deficiency.

bmj.com/content/383/bmj-202...

Vitamin B12

BMJ 2023; 383 doi: doi.org/10.1136/bmj-2022-07... (Published 20 November 2023)

Cite this as: BMJ 2023;383:e071725

The author of above also wrote an article for PAS in Jan 2024.

Only One Chance

pernicious-anaemia-society....

Thread about Patient Safety, has links for those in UK having difficult health experiences with B12 deficiency

healthunlocked.com/pasoc/po...

Nackapan profile image
Nackapan

Just to point out .NHS consultants can also write to Gps .

Gp's should and can prescribe 'off licence'

They can also get advice from specialists by email to 'cover their backs '

Just pointing out for all .

Not everyone can afford private health or get to places.

Good that path has worked for many though .

ClaireWF1346 profile image
ClaireWF1346 in reply toNackapan

You are absolutely right, and this is what gets my blood boiling. My fight isn't for me, but for people who don't have spare cash to see a specialist or people who implicitly trust their GP, for whatever reason. If I had just accepted their solution, I'd be 6 weeks into a one a day 1mg B12 supplement and nothing else. 6 loading doses did nothing for me. I was getting new cognitive symptoms all the time and I dread to think how I would be now. This forum is invaluable for sharing advice though, so I think once people get on here they can see what we need and that is regular injections!

Nackapan profile image
Nackapan in reply toClaireWF1346

Yes the forum helped me in 'the fight' for more NHS treatment.

Also to make me aware I wasnt alone with severe daily symptoms by then.

Even to get g.ps to follow guidelines of every other day until further improvement.

I had a late diagnosis and delayed treatment.

This has to stop happening .

Women in particular are dismissed as having hormonal/ stress symptoms.

After 7 years of not needing a g.p going concerned I might be iron deficient or something ,told to relax and do some yoga .

I was so dumbfounded as 'had my list '

Then time up .

It was a woman G.p who finally believed and listened .

But it was also women ( nurses ) that later tried to refuse b12 injections !!

I couldnt think straight to ask for the relevant blood tests.

I shouldn't have had to so the thinking though!!!

Awareness, awareness how severe symptoms can be.

I've also sent many letters for meetings to include b12 / folate on 'routine bloods'

Shouldn't have to be manually added .

A tick box needed !

Cherylclaire profile image
CherylclaireForum Support

Well done, Claire ! This could all be so much easier, couldn't it ?

I was one of the lucky few.

My GP diagnosed me with functional B12 deficiency - after realising that I was still deteriorating on the usual frequency after B12 injections to treat B12 deficiency and then getting my MMA checked. She then restarted my B12 at as near as she could get to EOD injections (3 per week). The nurses got jittery and never gave me more than 2 a week - but that was enough to convince her that this new frequency was working for me. So impressed with my progress that she continued this frequency after a 3-month review.

Odd that so few GPs will follow the medical guidance given for those presenting with neurological symptoms. Or notice patients that are not improving and look to find out why.

Let's hope that medical professionals at your local surgery all notice how beneficial this frequency is for you !

ClaireWF1346 profile image
ClaireWF1346 in reply toCherylclaire

I do feel like the GP I am seeing is keen to see the progress now, so I do feel like it will all add to their knowledge of the condition. They kept telling me they were sorry to hear I hadn't improved after my 6 loading doses but weren't coming back with any solution or follow up so I felt totally depressed and hopeless for a time. Glad to be on the way out of that though!

Cherylclaire profile image
CherylclaireForum Support in reply toClaireWF1346

Wishing you well.

It will take time, but good that GP is concerned. Helps to have consultant guidance.

My own Oral Meds consultant, who was often distracted by his fears about my "sky-high" B12 levels, has had a complete change of heart since talking about me to experts; he now understands that I should not be trying to reduce my B12 intake, and that replacement with tablets would do nothing for me. What's more, he admitted so in front of a group of students. I liked him, not above learning ; makes for a better teacher, don't you think ?

Still, a shame he did not put that into his report, so I wrote back asking him who it was that had changed his opinion - and sent a copy to my GP. Reply or no, it's at least on record now !

Wwwdot profile image
Wwwdot

Hi Claire

Fabulous news!

My GP ignores Dr K and my NHS neurologist ignored my results too! I am so pleased that you have a good outcome.

I may try to get a ED prescription as that’s what I need - would save me a lot of money!

🤗🤗🤗

ClaireWF1346 profile image
ClaireWF1346 in reply toWwwdot

Not sure about you, but I'm stuck with one surgery as it's all on catchment areas. It must be awful when not even one GP will help. I am fortunate to have some savings to have used to go private, but some are not in that position and I am definitely keen to get B12 on prescription to save money on a long-term basis if I can. Good luck!

Cobalt1312 profile image
Cobalt1312

Way to go ClaireWF1346! You're helping to pave the way for the rest of us!!

LizWilsonpa profile image
LizWilsonpa

Hi Claire - thanks for sharing this good news. Well done for persevering.

Can you share Dr K’s details with me too please.

Has anyone else got details of other doctors they’d recommend?

I do feel it would be helpful to have confirmation of the need for frequent injections- even if I choose not to take it to my GP at this stage.

a-wonderful-seed profile image
a-wonderful-seed

Such a joy and a relief to hear a positive example. Made up for you!

However did you convince them? Was it all stern letter and emails with relevant links? Or did you have to have a confrontation? Whatever it was must have been very articulate, heroic, righteous.

Am battling NHS Wales atm, and they are having none of it. And I’m low income, so affording my ampoules (imported, with duties and all) isn’t exactly comfortable. I’m already been SI EOD out of pocket for three years, so I don’t think asking for help is unreasonable😔

Sleepybunny profile image
Sleepybunny in reply toa-wonderful-seed

Apologies if you've seen this before.

I left some links specific to Wales in this thread

Patient Safety (UK)

healthunlocked.com/pasoc/po...

a-wonderful-seed profile image
a-wonderful-seed in reply toSleepybunny

How brilliant, this is news to me! Off to read, diolch🙏🙏🙏

ClaireWF1346 profile image
ClaireWF1346 in reply toa-wonderful-seed

I had an awful experience with a locum and ended up writing a 9 page complaint about her. She just kept telling me I didn't have PA because my intisinic factor test was negative and when I told her that alone doesn't mean I don't have PA she just kept repeating herself. She also told me my most recent bloods were fine (they weren't, my folate was 4 when the lowest "normal" level is 5.5) and my B12 was 184 I think and told me they wouldn't be offering me any more injections because a daily B12 supplement would do.

So, in my complaint I was factual, citing NHS, PAS and medical journals as well as providing a sample of my diet to prove that I was eating enough B12 but wasn't absorbing it properly and they needed to find the root cause. But by this time I had booked to see Dr Klein and insisted I saw a partner at my practice - I told him I would be advised to self inject and that I wanted B12 on NHS prescription. He couldn't really argue with me after my letter and he is the only GP to admit he doesn't know a lot about B12D so in a way is learning from me. At my expense of course! He seemed relieved I was paying to go private - one less patient for the NHS to have to deal with! I know I am fortunate to have ended up with a prescription but it shouldn't be this way of course - every who needs one should be able to get one. Good luck, really hope you get somewhere with it. It's exhausting to have to fight when you're already battling so many symptoms.

Not what you're looking for?

You may also like...

GP visit and victory.

Got to see my GP today it's taken a 6 week wait to make sure I saw her as she is always great. I...
Pixiefae profile image

Victory

Thanks for all your advice everyone. Today I got my first B12 injection after telling gp I'd read...
wongy215 profile image

GP stopping my B12 injections. Replacing with oral B12

Hi. At my last appointment for my B12 injection, the nurse explained that new research had revealed...
Holly2201 profile image

Nasty experience with GP

Hi all I had a blood test a few weeks ago and it showed low ferritin, folate and B12. Gp put new on...
Dee215 profile image

One small victory!!

If people havnt read my previous post basically I had a hair strand tested for intolerances...
Rachel-285 profile image

Moderation team

See all
Foggyme profile image
FoggymeAdministrator
Gambit62 profile image
Gambit62Administrator
taka profile image
takaAdministrator

Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.

Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.