Question to the Department of Health and Social Care:

To ask the Secretary of State for Health and Social Care, what steps the National Institute for Health and Care Excellence is taking to ensure that patient voice is fully represented and engaged throughout the process of developing clinical guidelines for the treatment of genetic haemochromatosis in adults.

The National Institute for Health and Care Excellence (NICE) as an independent body made the decision in May 2023 to pause the development of guidance for haemochromatosis.

As work to establish the Prioritisation Board progresses during this year, more information on timescales will become available.

NICE consults a wide range of interested parties in the development of its guidelines, including patient groups.