New post from PAS on injections being stopped.

[fbirder]

pernicious-anaemia-society....

[helvella]

We often see doctors playing the "not licensed for ..." card when they DON'T want to prescribe some treatment or other. Yet, as identified here, they are playing it the other way - when it suits them. Leaving PAS and patients to point out:

These 50mcg tablets are licensed for vitamin B12 deficiency of dietary origin only.

[Nackapan]

It's a shame sc not mentioned. It was before ??

[fbirder in reply to Nackapan]

That adds the problem of SC B12 not being licensed.

[Nackapan in reply to fbirder]

Yes. Its really odd as it was first given by SC and a more fool proof way if not able to get training in doing IM.

The medics go 'off llicience 'on drugs all the time.

Surely better than tablets. And si many recordings ready made as instructions for diabetics to just put on their website.

It was on the other PAS info. Written by a Gp!!

[fbirder in reply to Nackapan]

That was the same one that said people with PA could get by on tablets.

Really glad about the update.

[Mum2]

I am considering a complaint as my injection was due 24th March but was cancelled the day before. I was promised a letter 'soon'. I asked for a script as a nurse at work was willing to inject (I understand the issue re staff levels, cross contamination etc so offered this alternative). I was refused and,again promised a letter 'soon'. Last week I wrote to ask where my letter was and was told I will receive it 'at some point'.

I have just undergone tests as I have peripheral neuropathy which resulted in the end of my midwifery career (took a year to get tests), so I am suffering potential symptoms. I also have worsening dysphagia and chronic constipation (GP thinks my bowel has stopped working). Was due for tests but current issues have resulted in cancellation. I do not want to annoy my GP as she has been good re referrals etc but do feel let down by this denial of injections and no further info but feel it is wrong to complain currently.

[Nackapan in reply to Mum2]

I think it important to continue your b12 injections. I also wanted a prescription first for sc with a letter from neurologist sanctioning sc. Refused. Si then said IM refused.

I am having them at the surgery. Most put on tablets.

So it's worth asking . Thus is your treatment. I also bought my own as I thought and still di think they csn get stopped anytime.

I'm not going back to that very dark place . I've still along way ti go.

Hope you get your treatment soon. I dont see it as complaining I just see it as pushing for your treatment. Otherwise tiy will take up more of a medics time if you get more ill.

[Mum2 in reply to Nackapan]

That is true, I had not considered it from perspective of taking up more time.

[Sleepybunny in reply to Mum2]

Hi,

I can't see a problem with expressing concerns about treatment in a brief polite letter to GP.

Unhappy with Treatment (UK info)

Letters to GPs about B12 deficiency

b12deficiency.info/b12-writ...

CAB NHS Complaints

citizensadvice.org.uk/healt...

If jabs stopped due to pandemic, have a look at my reply in this forum thread.

healthunlocked.com/pasoc/po...

I wrote a very detailed reply on another forum thread with links to symptoms lists, causes of b12 deficiency, B12 books, B12 websites, UK B12 documents and other B12 info which you might find helpful.

healthunlocked.com/pasoc/po...

I am not medically trained.

[Mum2]

Finally received my letter, 25 days after my cancelled injection appointment, my notes have been reviewed and I am a suitable candidate for oral B12. Gloucestershire CCG have decided oral is as good as injections. I have responded with a list of reasons why I should not use oral but hold out no hope of changing their minds. I have a phone call on Tuesday about folate malabsorption symptoms despite being on 5mg folic acid - I think the numerous laxatives I am on are preventing me absorbing the folic acid. However, I may cancel as I don't think the call will achieve much and may cancel. If I can't absorb oral folic acid, I won't be able to absorb oral b12. I have resigned myself to the fact I will have to SI for all b12 in future.

I have ordered from versandepo and it was handed to DHL on 24 March so have an enquiry in place with DHL as to the whereabouts of my parcel.

[Mum2 in reply to Mum2]

GP just rang . B12 booked for friday - 🥳