Doctors letter

[JordanC]

Well I dropped my 2 page essay into my GP's office yesterday for the practice manager along with the printed notes from the links and posters from the PA society pages.

Fingers crossed but I'm not holding my breath! I've asked for a written response as to why I'm not getting the treatment based on the neurological symptoms and the guidelines, as well as the medical reasoning behind only having 12 weekly.

Thanks for all your hope and will post again when they respond

[clivealive Forum Support]

Hi JordanC I hope your "massive missive" does the trick and that you manage to "educate" another doctor thus helping his next B12D/P.A patient along who presents the same problems.

I've got my fingers crossed which makes typing somewhat difficult....

[Sleepybunny]

Just wanted to wish you good luck and I hope your letter has the desired effect.

Which guidelines did you mention in your letter? I found out that some areas (eg counties) of the UK have their own local NHS B12 Deficiency Guidelines that may differ in some details to the

1)BCSH Cobalamin and Folate guidelines

b-s-h.org.uk/guidelines/ click on Diagnosis of B12 and Folate Deficiency

2)NICE guidelines

cks.nice.org.uk/anaemia-b12...

3)BNF (British national formulary) Chapter 9 section 1.2

bnf.org/

The local NHS b12 deficiency guidelines might be found by an online search, a search on loacl NHS website or perhaps a FOI (freedom of information) request to local NHS website. When i found out the local B12 guidelines it helped me to understand why I had not got the treatment I expected.

I am not a medic just a person who has struggled to get a diagnosis.

[JordanC in reply to Sleepybunny]

Hi Sleepybunny,

Do you know what ones would apply tin Northern Ireland?

I think I included NICE and BNF, I have all the copies at home I'll have a look this evening

Thanks

[Sleepybunny in reply to JordanC]

Hi,

PAS might be able to tell you.

pernicious-anaemia-society....

PAS tel no [phone]

I assume the BCSH Cobalamin and Folate Guidelines, NICE and BNF apply to NI.

The local b12 deficiency guidelines I mention are those that apply to an individual NHS trust or CCG (Clinical Commisioning group)

nhs.uk/servicedirectories/p...

nhs.uk/servicedirectories/p...

[Gambit62 Administrator]

hope letter does the trick

[Foggyme Administrator]

Hi JordanC. And oh very well done. Hopefully, they'll be unable to ignore or argue with the evidence you've put together.

Will be keeping fingers crossed for you and watching out for your update.

Here's hoping....👍😀

[Hidden]

I wrote a letter 10 days ago to my mothers practice manager regarding B12 treatment and that you can't overdose on it. In January, her level was 243 and she ticked about ⅔ of the symptoms. She does also have diabetes so her GP said that all her problems were related to that . I did say it's possible to have more than one illness at a time. Didn't go down very well, so no treatment was forthcoming. We have therefore resorted to SL supplementing which have helped. A recent blood test showed her new level to be just over 1000 so her GP phoned up and told her to stop taking supplements, hence my letter to the practice manager. Sent all the relevant files too. I even offered to pay for one of their doctors to attend the Pernicious Anaemia conference in December. Had no reply yet 😕

[JordanC in reply to Hidden]

This is exactly why I'm It holding my breath, very few seem to a) understand it and b) care!!

You can complain to the ombudsman or NHS which is my next stop if I don't hear back or they say no