After nearly four years of lobbying we have received an invitation to meet with Prof. Mark Baker, the Director of the Centre for Guidelines (CfG) at the National Institute for Health and Care Excellence (NICE).
This invitation follows on from a request for NICE to thoroughly review the way in which Pernicious Anaemia is diagnosed and treated and is the first step towards the production of Guidelines that will hopefully recognise the inadequacy of the current assay for determining any B12 Deficiency and the inaccuracy of the Intrinsic Factor Antibody Test that is used to determine whether any deficiency is caused by Pernicious Anaemia.
According to the NICE website the CfG ‘is responsible for designing and operating methods and systems to produce clinical guidelines for the NHS. CfG is also responsible for the work of the Medicines and Prescribing Centre including summaries of evidence on new medicines and unlicensed and off-label medicines and the management of the contract for the British National Formulary’.
“NICE have always been willing to listen to what we have to say” says Martyn Hooper, the current Chairman of the PA Society. “We have had several informal meetings over the past few years, but it was only after attending a NICE Training Event just before Christmas last year that the procedure for requesting Guidelines were identified” he says.
The meeting will be arranged on Monday and will probably take place in Manchester.
“The main purpose of the meeting will be to raise awareness of how the diagnostic failings are affecting patients. The evidence of the inadequacy of the tests is now universally recognised by experts in the field, and we will be providing NICE with a list of Medical and Scientific experts who are friends of this society and can be consulted for their advice”, says Martyn.