Question to the Department of Health and Social Care:

To ask the Secretary of State for Health and Social Care, what assessment his Department has made of the adequacy of the scope of draft NICE guidelines on haemochromatosis with regards to (a) known forms of haemochromatosis and (b) pathogenic variants attributable to other genetic mutations associated with iron overload.

The Department has made no such assessment. The National Institute for Health and Care Excellence (NICE) reviewed its guidelines portfolio in May 2023 to identify topics that it thinks will add the most value to the health and care system, considering key factors such as clinical benefit, cost effectiveness, the potential to increase productivity and support workforce issues and the potential to address health inequalities. As a result, NICE identified several topics, including the guidance on haemochromatosis, where work will stop for the time being to allow focus on key priorities. NICE consulted on the scope for the guideline on haemochromatosis in January 2023 but has not published the final scope.

These topics will be reconsidered by NICE’s new Prioritisation Board that is being established by its Chief Medical Officer, and as work to establish the prioritisation board progresses, more information on timescales will become available. NICE will make further information available on its website once topics have been reprioritised.