Question to the Department of Health and Social Care:

To ask the Secretary of State for Health and Social Care, what steps he is taking to improve the (a) rates of diagnosis and (b) management of genetic haemochromatosis.

The Government is committed to making the United Kingdom a leader in embedding genomics in healthcare and offer a consistent, world class approach to the genetic identification of rare diseases, including genetic hemochromatosis. The Genomics Medicine Service was announced in October 2018, supported by the National Genomic Test Directory which specifies which genomic tests are commissioned by the National Health Service in England, the technology by which they are available, and the patients who will be eligible to access a test. Genetic haemochromatosis is included in the National Genomic Test Directory.

Services for patients with genetic haemochromatosis are commissioned locally through clinical commissioning groups with sustainability and transformation partnerships (STPs) enabling service coordination across wider footprints. The NHS Long Term Plan set out the ambition for all STPs to evolve into Integrated Care Systems (ICSs) by April 2021. ICSs are an ‘evolved’ form of an STP, making faster progress in integrating care across their area, bringing together organisations to provide more seamless care for patients.