Pernicious anaemia

[Bobbles4]

Hi all.

I am currently having a battle to get my B12 injection. Ive rung the surgery 3 times in the last week as injection due. They keep saying someone will call back. Ive said in no uncertain terms i have pernicious anaemia and its not dietary?

I have already felt so ill this week . Tried explaining this to them but to no avail.

Yet we are told on the tv adverts they are open for business and we shouldn’t not call if we have health issues other than coronavirus.

I had a blood test last week so whats the difference between taking my blood or giving me my B12 injection. All this is pure madness!! At my wits end!

[Nackapan]

Drop a letter in they cant ignore.

Addressed to your Gp and copy inthe practice manager.

[Bobbles4 in reply to Nackapan]

Thankyou

[fbirder]

Yup, send a letter.

Tell them that you are worried that you may suffer permanent nerve damage if you do not receive proper treatment for your condition.

Include a copy of the BSH guidelines - b-s-h.org.uk/media/18259/bs...

Make sure to cc: the letter to the practice head, your local MP, and the local press, TV and radio.

[Bobbles4 in reply to fbirder]

Thankyou so much for your help

[Sleepybunny]

Hi Bobbles4,

Have you considered joining PAS?

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....

No meetings during pandemic.

B12d.org has some online meetings during pandemic.

b12d.org/event

B12 Deficiency Info website has a lot of helpful info.

b12deficiency.info/

Impact of Pandemic

Lots of UK forum members are struggling to get B12 treatment at moment.

I left a long reply in this next thread with info on impact of pandemic on B12 treatment in UK.

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

It includes links to recent PAS news items and blog posts from B12 Deficiency Info which have suggestions on how to cope if injections stopped/delayed/swapped for oral tablets.

Warning

I believe that many UK patients who have been on B12 injections will find it difficult to get them reinstated even after pandemic is over.

1) There are moves afoot in some areas of UK eg Gloucestershire to move patients permanently to oral tablets.

Blog post about Treatment of B12 deficiency in Gloucestershire (April 2020)

b12deficiency.info/blog/202...

PAS blog post about oral B12 treatment (August 2016)

martynhooper.com/2016/08/02...

2) There is pressure on GP surgeries to cut costs...I think some GP surgeries see patients treated with b12 injections as an easy target.

Have a look at the comments under this recent BMJ article about PA (Pernicious Anaemia)

bmj.com/content/369/bmj.m13...

Some of the responses below the article from GPs are very concerning. See response published on 24th April. Attitude of GPs seems very questionable to me.

Costs £30 to get access to original article. There was a recent thread about this article on the forum.

Challenging GPs

If you want to challenge their decision, I suggest putting queries about treatment into a brief as possible, polite letter to GP.

Try to include extracts from UK guidelines etc that support your arguments. Should be useful info in the links I included in this post.

Unhappy with Treatment (UK info)?

Letters to GPs about B12 deficiency

b12deficiency.info/b12-writ...

CAB NHS Complaints

citizensadvice.org.uk/healt...

Your local MP or representative of devolved administration in Scotland, Wales, NI should be interested in your story if you are struggling to get appropriate treatment.

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

healthunlocked.com/pasoc/po...

I am not medically trained.

[Bobbles4 in reply to Sleepybunny]

Thankyou so much for the information. Great help

[jimmy23 in reply to Sleepybunny]

I just wanted to say thanks for such a great post, I am in a similar position and reading that has given me some hope!