Two years ago, we had a meeting with the head of the British National Formulary (BNF). The BNF is the booklet that is produced by the Royal Pharmaceutical Society and the Royal Society of Medicine and tells doctors how to treat particular diseases. At that meeting we were told that if we could produce evidence that the current guideline for treating Pernicious Anaemia (1mg injection every three months unless there’s neurological involvement) is not suitable for all patients then they would review the topic.
Yesterday we had a telephone interview with the Head of Content and we then presented them with our newly produced ‘Current Hydroxocobalamin Regimen for the Management of Pernicious Anaemia in the UK: A Review of the Evidence.’ Written by Dr Nicola Ward it is intended to show how the current guidelines are not suitable for all patients.
The conversation with the Head of Content was very promising but we were told that, because the BNF has now been accredited by NICE the process for changing the guidelines is thorough and consequently time-consuming. We were thanked for the Report (which is, as far as we know the first of its kind) and were assured that meetings would be held over the next three months. Hopefully we will have some positive news to report on this subject in the autumn.
Our thanks to Nicola for all her hard work in compiling the Review.
Injection of B12 every 3 weeks for 20 years and yet i still have numb feet, i am unsteady especially when tired and still have brain fog. Every 3 months is no good to me. I would never function.
Wonderful news. Thank you.
I cannot thank enough everyone contributing to this work.
I am praying for good news …that we will be heard and helped…I am on weekly shots…if I leave it any longer the neuropathy and neurological symptoms rear up…weekly works for me…while I am not perfect, I can function, weekly shots have given me some of my life back. I was able to have my 16 month grandtwins staying at my home for 1 week last week, all by myself, without the B12 I would be bedbound. Good luck and THANK YOU.
I really hope this gets changed , I am on 12 weekly b12 injections for PA and I feel it only last for 6 weeks and my GP will not give me earlier injections . I go to work come home and go to bed , also my mood gets so low , I’m exhausted all the time and pain everywhere ! Thanks for all the hard work the PA society do .
I am on once a week. Any longer which started at every three months and worked down until a lot of the symptoms eased at weekly. My family in particular noticed the improvements .I still show a lot of symptoms but things are a lot better. My G.P. was very supportive but even he balked when I suggested twice a week.
There seems to be a lot of ignorance in the medical profesion about here. I was lucky with my G.P.