Update on my partner

[Nic878]

Just wanted to say thank you to everyone. We are 4 weeks into EOD injections a local pharmacist showed me how to inject my partner and iv been doing them for him. Originally using panpharma but it was sold out so have just started with pascoe 1500. Much easier to draw up and inject and apparently no sting. We've joined b12 society's Facebook group "wake up b12" My complaint against drs has got somewhere we have a new GP at the practice who is supportive of my partner doing EOD self injecting. Has prescribed folic acid and is keeping a regular check on his pottasium levels and is checking his vitamin d and testing from crohns, hormone tests you name it. I think I scared them with my complaints but as long as my partner is getting help he needs thats all that matters. Highly recommended b12 deficiency society Facebook page to anyone not on there, loads of helpful information

[Jillymo]

This is wonderful new's.

At last your hubby is getting the treatment he deserves and hopefully now on the mend. A Dr who agree's with him self injecting is a huge bonus.

Lets hope it is a happier healthier New Year for you both. 🥳

[Nic878 in reply to Jillymo]

Thank you same for you also 😊

[Narwhal10]

Hi Nic878,

Congratulations that is good to read. I am not a fan of Facebook. The other day I was talking to a Clinician and Social Media. At interview, their spouse was questioned about what could be read on-line.

I know nurses have been sacked for what they have written on Facebook. People really do forget that they are in the Public Domain. It really is a great way to monitor people. However, I see a lot of Misinformation, Disinformation, Mal-information. People also have to be careful of Trolls and Sock Puppets.

Now, with regards to your complaint, it is good way to raise concerns in a non-emotive way. Reflective Practice is part of Medicine. So, by drawing your individual experience to management it can feed into better Recognition and Treatment of Pernicious Anaemia/B12.

I do hope hubby recovers. It is a journey.

All the best.

🐳

My colleague’s spouse is a Barrister.

[Nic878 in reply to Narwhal10]

I'll be quite honest I hate Facebook I have literally only signed up for this purpose. I contacted the b12 deficiency society by email they are a registered charity who are helping write the new nice guidelines and they emailed back and explained they have a Facebook group. I thought bugger im not on Facebook but decided to join for this purpose. The admin is ran by those who have completed training in b12 deficiency and treatment, they follow the protocol of Dr Joseph Chandy and the information in files is excellent. I do agree on regards to social media though.I have realised over the years that I have abit of a talent for complaining lol not necessarily a good thing and I agree best to remove emotions and stick to facts

[Narwhal10 in reply to Nic878]

Excellent. Dr Chandy’s book of Vitamin B12 in Clinical Practice is worth a read. His story is also worth knowing. You will see how badly he was treated.

Now, I have nothing to hide so on here I completed my biography. However, my personal and business email inbox and personal messages on here are a different kettle of fish.

The expression is ‘Nobody knows if you are a dog on the internet.’

Whilst I was a Clinician (who was not taught about P.A and Vitamin B12 deficiency) I was also a ‘whistle blower’ because I had previously been a Civil Servant. I knew the steps to take and where to take my concerns of poor management.

I do wish to explain that I cried for a whole day when I found out about P.A and Vitamin B12 deficiency. I had let families down. So, now I do something about it.

Everyone on here either has the illness or are seeking help for themselves and others.

Yesterday, I had to cancel my own appointment because I had an energy crash. Your husband has to build up slowly and surely because we have relapses.

P.A and Vitamin B12 deficiency is a chronic condition and needs to be carefully managed. Dr Asim Naqvi is the Medical Advisor of the B12 Society.

Best wishes.

🐳

[Sleepybunny]

"My complaint against drs has got somewhere "

I'm so pleased to read that and I'm hoping your hubby will soon see some improvement.

I've put link below ,which you've probably seen, in case other UK readers of this thread are having difficult times with GPs.

Thread about Patient Safety, has links that might be useful for those in UK having difficult health experiences with B12 deficiency.

healthunlocked.com/pasoc/po...

[Nic878 in reply to Sleepybunny]

I'd like to think I can help and advocate for other b12 deficiency suffers one day and give something back as the help I recieved from yourself, wedgewood and other members on here has been such a massive help in starting us off on our journey for help. A month ago I felt pretty helpless now I feel like my knowledge is expanding and finding I know enough to push drs

[Narwhal10 in reply to Nic878]

Hi Nic878,

People can actually do something now to help. If Medical Students, Nursing Students are not being taught then consider writing to your nearest university, donate a book to their library on P.A./B12Deficiency and give a brief outline of your husband’s experience. You never know, he may even be asked to pop along and give a little talk to the students. 😉

[WIZARD6787]

Good effort! Great success. The goal! As an unintended consequence, somebody that sees that particularly GP in the future maybe saved much pain and suffering. Perhaps the way real change happens.