Refused injection due to covid

[Gwyn25]

Can anyone help? I am now 63 and was diagnosed with pernicious anaemia in my 40s. I have been having b12 injections every 12 weeks since then. I no longer need to take iron and haven't had to for years. My Dr's surgery are refusing to give me my injection due to covid restrictions and it is now 6 months since my last. They say they are prioritising patients who are most in need. Apparently I'm not, but am so tired, depressed and feeling just not myself. I wake up constantly throughout the night with pins and needles in my arms. I am having terrible hot sweats. Apparently as I am not anaemic from blood tests fine 2 weeks ago I am not a priority. What do I do? I live in Wales.

[fbirder]

Tell them you have pins and needles. Tell them you are worried about permanent nerve damage.

[wedgewood]

You are probably not iron anaemic , but by the sound of your symptoms you are B12 anaemic , definitely . I suggest that you write a letter to your GP and the surgery manager , saying that your symptoms have returned , and you need injections ( preferably loading doses, after this long period without an injection ) ASAP . I think a letter is important . It will have to be put on file.

[Nackapan]

This is awful . Write to your doctor stating you have PA were told b12 injections are for life. State you are unwell and having neutological symptoms returning.

Copy in practice manager

Copy in MP

Did they include b12 on your blood test? I wonder. On what grounds can they refuse your treatment.

I was going to the surgery 2 weekly. Weekly now. Nurses are protected. I wear a mask and gloves and dont touch anything apart from having to hold a tissue over door bell as surgery is locked.

6 months is a long time.

[Nackapan in reply to Nackapan]

Didnt see last reply. But we all saying the same!!

[Frankish]

This is awful, I had to resort to SI but I saw that this lady was helped by B12 info, perhaps try them?

I would like to give a big thank you to Tracey for being instrumental in getting my B12 injections reinstated after 4 months of futile efforts on my own part.

Christina. Lancashire. July 2020

b12deficiency.info/testimon...

[Sleepybunny]

Hi,

If you're not already a PAS member, I suggest joining and talking to them.

They can offer useful info and support.

PAS (Pernicious Anaemia Society)

Based in Wales, UK.

pernicious-anaemia-society....

There is a helpline number that PAS members can ring.

PAS support groups in UK

pernicious-anaemia-society....

There are two support groups in Wales.

PAS have a leaflet "Treatment is for Life" which PAS members can print out and pass to their GPs.

pernicious-anaemia-society....

Unhappy with Treatment (UK info)?

Letters to GPs about B12 deficiency

b12deficiency.info/b12-writ...

In UK, my understanding is that letters to GPs are supposed to be filed with medical notes so hopefully less likely to be ignored.

Useful to have a paper trail in case there is a need for a formal complaint in future.

CAB NHS Complaints

citizensadvice.org.uk/healt...

MPs/devolved representatives may be worth contacting.

In any letter, you could draw GPs attention to possibility of permanent neurological damage including damage to spinal cord if a patient is untreated or under treated.

Neurological Consequences of B12 Deficiency

PAS news item

pernicious-anaemia-society....

PAS article about SACD, sub acute combined degeneration of the spinal cord, access to PAS members only.

pernicious-anaemia-society.... See page 2 of articles.

See next link about writing to GP if under treated for B12 deficiency with neuro symptoms.

b12deficiency.info/b12-writ...

You could check your GP surgery is using the most up to date guidance from BSH (British Society of Haematology) on B12 treatment during pandemic. See PAS news item below.

pernicious-anaemia-society....

It could be that they are using out of date guidance.

Local Guidelines

Might be worth tracking down any local guidelines on b12 treatment that are being used by your local health board.

Health Boards in Wales

wales.nhs.uk/ourservices/di...

Symptoms Diary

Are you keeping a daily symptoms diary of how your symptoms change from day to day and if and when any treatment is received?

Make a note of any symptoms that have returned since treatment stopped and any new symptoms, especially every neurological symptom.

This could be useful evidence of improvement or deterioration in symptoms to show GPs.

I wrote very detailed replies on another forum thread with links to B12 deficiency symptoms lists, B12 books, B12 websites, UK B12 documents and other B12 info including some hints on dealing with unhelpful GPs which might have something useful.

healthunlocked.com/pasoc/po...

The pandemic is impacting patients' B12 treatment in UK.

I left a detailed reply about impact of pandemic on B12 treatment in UK in next link which might be of interest.

healthunlocked.com/pasoc/po.....

Some UK forum members feel their only option is to self treat when NHS treatment is not enough.

My personal opinion is that self treatment is a last resort but I was driven to it when unable to get any B12 treatment from NHS several years ago.

I am not medically trained.

[Debbiscott16]

This is disgraceful, I have been luckily receiving mine.

Why are doctors so dismissive of B12? It's like the medical profession bo ho it! Why?

I hope you get the situation resolved very soon x

[Hberryh]

Hiya. My gp isn't doing them either. My last jab was January. They have prescribed tablets instead, seem to be ok but I'm not the best at taking them. Could you ask for those? I'm guessing that they aren't as effective as the injections though?

[Frenchiebabe]

You should find that local ccg has now said that injections of B12 can be restarted so give them a call

[Fabrica]

I was told by my GP receptionist that I could only have tablets and not injections. I insisted that I could not absorb it in tablet form and she immediately agreed I could have the injections. I presume it was policy for them to try and fob people off with tablets as she was not qualified to judge need.

[Mthfr]

Do it yourself.

There's no way I'm sitting in 2 waiting rooms with a bunch of sick people before or during Covid.

I know when I'm due, the sleep, pain, pallor the list goes on.

I get my B12 over the counter and insulin syringes off the internet. Box of 100 for around $40 AU. While your there, grab yourself some Folinic acid (B9)

Didn't think I would ever be able to do it myself. But there you go. Way less painful than when an over stretched nurse does it.

By all means, wait for your doctor, you probably should.

But your symptoms are real and so are mine, so sick of not being taken seriously.