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
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.