Struggling with my letter to the GP

[Kaceysimo]

So I’m trying to compose a letter to the GP to say how disappointed I am with the whole b12 Injection situation (them being cancelled, basically telling me I was selfish for trying to speak to the doctor about it and that people are dying and they have other patients to deal with), normally formulating letters is not a problem for me but I can’t even come up with an opening sentence!! I don’t know if its because it’s too emotive and personal for me, when I’m writing letters at work it never seems to be a problem, I have to sometimes rein myself in! Yet for some reason in this instance I just can’t articulate what I want to say! It’s like my mind is completely jumbled and that’s not just the fogs! Any help would be much appreciated. I don’t want to sit here in silence and let them think what they are doing is ok. The negative narrative around pernicious anaemia needs to stop! 😞

[Nackapan]

There is a draft on here somewhere .perhaps will appear at bottom of posts under topics?

Or use bits of other letters PAS and heamatogy one.

I would keep it short and concise.

Key points.

It's on the WHO essential medicine list.

Injections were made for absorbtion problems as tablets did nothing

Guidelines they are for.

life

Concerns about irreversible nerve damage without them.

Take no notice of being called selfish.

This woukdnt happen if you were not denied essential treatment.

If one if those people needed b12 inje tio s ....well

I've also had that vibe when turning up for mine ...

Wasting nurses time..

I'm going less frequently as doing some at home now.

We are misunderstood all of the time and this is no different.

Stay strong

Dont overthink your letter.

T

C

.

[Kaceysimo in reply to Nackapan]

Thank you! That’s great, going to block some time off tomorrow to compose, think I was going too much into everything then lost myself in what I was trying to say.

Oh the nurse rolls her eyes at me when I say I’m ready for my injection! So disheartening, wish they knew what it was like! I’ve even had one say it was a placebo and doesn’t do anything and my symptoms are in my head! The struggle continues.....

[Sleepybunny]

Hi,

Link about writing letters to GPs about B12 deficiency

b12deficiency.info/b12-writ...

You could include symptoms list and point out any symptoms that have got worse since treatment affected.

Maybe draw their attention to the possibility of permanent neurological damage if 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, avialble to PAS members only.

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

Blog post from Martyn Hooper's blog, mentions SACD

martynhooper.com/2010/09/21...

Perhaps include extracts from most recent BSH advice.

See next link to most recent PAS news item.

pernicious-anaemia-society....

Maybe join PAS and ask if they can suggest useful info to pass to GP.

PAS (Pernicious Anaemia Society)

Based in Wales, UK.

pernicious-anaemia-society....

There is a helpline number that PAS members can ring.

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.

I wrote very detailed replies on another forum thread with links to B12 deficiency 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'm not medically trained.