We received a telephone call yesterday from a very distraught member who was diagnosed with PA twenty-three years ago and has been having monthly injections since then.
Yesterday she turned up for her monthly treatment only to be told that “new guidelines from NICE state that patients with PA should now be treated by tablets”.
She was then prescribed 50mcg of Cyanocobalamin tablets.
We know of two members of this society who use oral tablets instead of injections but they take enormous doses in order that, hopefully, some of what they swallow will be absorbed ‘passively’ in their gut. The doses they take are 2mg each day. The lady was prescribed just 50 mcg (there are 1,000 mcg in a mg).
We are unaware of any new NICE guidelines relating to this. In fact, there are no NICE guidelines relating to Pernicious Anaemia, just a Clinical Knowledge Summary which has a glaring error in it (we’ve pointed this out to NICE who are considering revising it).
Today we will contact the Health Centre concerned by telephone and ask for an explanation of why the member’s treatment has effectively been stopped.
Readers may well remember that a few years ago a similar thing happened at a Health Centre in Dorset which we became involved in. In that case, every patient with PA was written to and told to buy 1mg tablets from Amazon. That policy was reversed following our involvement and injections were re-instated.
Injections are safe, cheap and highly effective as a replacement therapy for B12. However, the cost of nurse time in administering the dose is enough to make health services consider saving some money and time by replacing injections with tablets.
Be aware, that there are no new Guidelines by NICE about replacing injections with tablets.