I can’t believe it after 5 years of trying this new doctor has just rang to inform me he is to reinstate my B12 injections starting this Friday. I can’t thank you all enough for your kindness and support. Keep safe and well everyone.
[Edited by Admin: details removed to protect personal identity]
Great to get some good news on the forum...very pleased for you.
I hope your treatment problems have been sorted once and for all.
In case of future problems...
PAS (Pernicious Anaemia Society)
Based in Wales, UK.
pernicious-anaemia-society.org
There is a helpline number that PAS members can ring.
Unhappy with Treatment (UK info)?
Letters to GPs about B12 deficiency
b12deficiency.info/b12-writ...
Link above has letter templates that people can base own letters on.
Letters avoid face to face confrontation with GP and allow patient time to express their concerns effectively.
Best to keep letters as brief, to the point and polite as possible. It's harder to ignore a letter in my opinion.
Keep copies of any letters sent or received.
CAB NHS Complaints
citizensadvice.org.uk/healt...
HDA patient care trust
UK charity that offers free second opinions on medical diagnoses and medical treatment.
Currently not taking on new cases but this may change.
Local MP/devolved representative may be worth talking to if there are problems with getting adequate treatment in future.
PAS have a leaflet "Treatment is for Life" and many other useful leaflets/articles which some PAS members pass on to GPs.
pernicious-anaemia-society....
Some can be accessed by non members.
PAS news item about contacting NHSE (NHS England) about treatment concerns during pandemic.
pernicious-anaemia-society....
A few go to the press but this is not an easy option.
Newspaper article about patient struggling to get B12 treatment in Scotland
eveningtelegraph.co.uk/fp/i...
And a positive follow up story
eveningtelegraph.co.uk/fp/b...
Retention of UK medical records
bma.org.uk/advice-and-suppo...
Don't rely on there being evidence of a past diagnosis of PA (Pernicious Anaemia) or other cause of B12 deficiency in current medical records.
If you get proof of diagnosis eg positive test result/letter from specialist confirming diagnosis/other evidence etc keep a copy in a safe place.
Accessing Health Records (England)
nhs.uk/using-the-nhs/about-...
england.nhs.uk/contact-us/h...
patients-association.org.uk...
Each CCG/Health Board in UK will have their own local guidelines on treatment/diagnosis of B12 deficiency. Worth tracking down a copy of local guidelines for your area of UK and comparing it with BNF/BSH/NICE CKS links below.
Some local guidelines have been posted on the forum so may be worth searching forum posts for "local guidelines" or try an internet search or submit a FOI (Freedom of Information) request to CCG/Health Board asking for a copy of local B12 deficiency guidelines.
CCGs England
nhs.uk/servicedirectories/p...
Health Boards Wales
wales.nhs.uk/ourservices/di...
Health Boards Scotland
Health Boards Northern Ireland
online.hscni.net/hospitals/...
I've written some very detailed replies in the threads below which hopefully have B12 info you will find useful eg B12 books, more B12 articles, more UK B12 documents, B12 websites along with a few hints about managing unhelpful GPs.
healthunlocked.com/pasoc/po...
healthunlocked.com/pasoc/po...
healthunlocked.com/pasoc/po...
I am not medically trained.
Yay, Hedgehog !Very very pleased for you.
🍾🍾🍾🍾 bet you cant wait !
dido! Thanks for the support of those who manage PAS and this forum and all of it's members.
Pernicious anaemia?
New pernicious anaemia diagnosis
Pernicious anaemia 
Pernicious anaemia 
Pernicious Anaemia
