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.

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