I have just been thanked by my nurse... - Pernicious Anaemi...

Pernicious Anaemia Society

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I have just been thanked by my nurse...

6 Replies

Just called into my GP for a first "monthly" B12 injection, due to the usual admin error, no prescription ready. We went on to have a discussion re why changed to monthly etc, nurse then quoted "blood tests every 12 weeks blah blah blah..." I then started commencing my speech on serum B12 and active B12 and "no more blood tests for life". She said she was only repeating what she has learnt and that her mum in law has PA and she wished she had knew all this information. I told her to look up Martyn Hooper and read up regarding NICE guidelines. She informed me that the surgery was giving tablets out to most patients, yet I continued to have injections (lucky me, no idea why). I informed her that has I worked for the NHS for 7 years as a complaints officer, and now I work in legal for a gp, my daughter is under a neurologist and me under a gastro consultant, that I am knowledgeable and would be geared up for any complaint necessary. She seemed very impressed and thanked me.

We both agreed that the admin at my gp centre is diabolical. I got tearful this morning as seeing the issues first hand and knowing that patients are suffering unnecessarily. I really hope this nurse now finds more knowledge and helps more patients as necessary, obviously including her mum in law.

I did say I was also prepared to self inject if necessary (actually I do.. .shh..) but seeing a nurse gave us both the opportunity to discuss other issues and ask questions. Especially as I have ongoing stomach problems, bloating, gas and diarrhoea, which I now take probiotics for and put it down to a side effect of PA. I do not drink alcohol or caffeine (boring life) in the hope that this will clear up or at lease ease.

Well best I get on with my GP's legal work and take a breath now I am late for work! :)

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6 Replies
briarhillcat profile image
briarhillcat

Sounds about right. I am sure many (or most GPs have not got a clue)

Nackapan profile image
Nackapan

Good to spread the word.

I'm trying too.

Not with your work background though.

Bellabab profile image
Bellabab

I drink lots of fresh, real coffee and I drink moderate amounts of alcohol. Neither give me any problems and I am confirmed PA , self injecting every other day for months. I do take probiotics and also omega 3 capsules. Breakfast is a rich, high nut and fruit muesli 30 grammes and 20 grammes of bran with 100 grammes of semi skimmed milk together with kefir and natural ("live") yogurt. Worth a try.

in reply toBellabab

Thanks, I have fruit, muesli, nuts and seeds for breakfast too. 1 tea, no further caffeine or alcohol. No dairy or sugar, yet bloating and upset stomach almost daily. Started probiotics a few weeks ago too. Maybe not connected, but believe I have low stomach acid too.

Bellabab profile image
Bellabab in reply to

I have pernicious anaemia so my parietal cells do not produce much acid as well as none of the chemicals needed to transport B12. I eat a satsuma for its acid content or drink some lemon squash (no added sugar) with some pure lemon juice added. This works and I can drink coffee and moderate quantities of alcohol.

Cherylclaire profile image
CherylclaireForum Support

Good for you.

Well, let's hope this nurse can now make a difference -but all these patients being refused injections may not get the opportunity to see her now, unless for flu jabs !

Wonder how they are all getting on ? Can't imagine having to start this awful struggle all over again, having come so far, so slowly !

I keep thinking "Surely, these medical professionals can't have so short a memory that they've forgotten what their patients were like without adequate injections ? " They can't have failed to notice the difference, when patients were getting what they needed finally. Why snatch all that away - no monitoring / support / discussion ? Surreal situation.

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