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
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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.
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?
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. 👍
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.
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.
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.
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.
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.
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...
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!
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...
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.
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!
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!
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 !
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!
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 !
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!
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😔
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.
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