This week we met with a representative from the National Institute for Health and Care Excellence (NICE).
The meeting was very productive and positive as we made the case for NICE to produce a Guideline on the Diagnosis and Maintenance of Pernicious Anaemia.
Although NICE have accepted that there is a need for a Guideline they haven’t yet commissioned it into their workstream. This meeting was about what we can do to get the guideline commissioned and there were several suggestions that we will be following up on.
Getting NICE to produce a Guideline will mean that over a three to four year period NICE will consult with stakeholder groups, including ourselves, and thoroughly review the way in which Pernicious Anaemia is diagnosed and treated. This will mean that they will address the problems of poor tests not only for B12 Deficiency but also the serious problem with the test for true Pernicious Anaemia – the Intrinsic Factor Antibody Test.
We know that NICE consulted with the British Committee for Standards in Haematology (BCSH) when we first requested a Guideline but the BCSH presumably replied that it was beyond their remit and they could add nothing to their own Guideline issued in 2014.
The meeting has given us some hope that the Guideline will be produced in the near future. Our thanks to NICE for engaging with us and listening to what we had to say.
Do they recognise that too many patients have false negative results. ? so are then denied injections
Exactly! Too many doctors treat people who have hereditary PA (which is INCURABLE) give them b12 shots, test their levels and tell them they are cured, or don’t need shots, yet b12 only remains in the human body for 48 hours, and our bodies do not produce it, nor can we ingest it. I have Bermer’s, my grandmother had PA, they took her off her b12 shots, said it was her kidneys and she was fine, she died a year later of dementia and heart problems. She was so out of it. Yes, she was 94, but her mother was nearly 100 when she died, and had 3 different types of cancer. I think the doctors shortened her life, or at the very least caused her dementia to progress rapidly by telling her she no longer needed shots.
At least they listened, so a big thank you for your efforts on behalf of all sufferers.
Thank you for all your efforts on our behalf
At last …. but ‘a three to four year period’!!!!
Even if we could purchase over the counter like in other countries would help. Monitoring self injectors. I really don’t understand why they keep holding back on this! I have PA and I give up 🙁
Thank you for flying the flag. Such a serious condition but such a long wait & needless suffering.
Thank you for the work you all do on our behalf. Very much appreciated even though it will take some time to see / experience any results.
Grateful for the work you do to put our case. Oh my, but how slow it seems when we know what we need… and when do we need it…. NOW! It makes me so angry that I can buy B12 in so many different countries – and so cheaply too.
Thank you for representing us. I’m struggling right now with another round of anaemia and finally think I’m getting through to my GP that this is not just bad nutrition.
I’m writing on behalf of an 88 yr old friend who is on B12 every 3 months since being diagnosed with osteoporosis. (No idea why) At least 4weeks before due she becomes good for nothing, pain and irritable legs, foggy mind and sleeping+++ for starters. Just wondered if it would be safe to take oral B12 for this last month. Asked about having her injection sooner and told NICE guidlines say it’s only licensed for every 3month. Although we’ve been told there is one person in our surgery having it more often!!
I live in Ethiopia I been victim of this for 5 years now it come and go sometimes i researched about my case even tho my case was pa no one knows what it is no one was helping me couldn’t find a help or someone who can understand me and help me with its so difficult living in a world where your self is trapped somewhere couldn’t access my brain 100% always confused having anxiety