Question to the Department of Health and Social Care:

To ask the Secretary of State for Health and Social Care, what steps his Department is taking to ensure that people at risk of genetic haemochromatosis have access to appropriate (a) screening, (b) treatment and (c) support.

Seventeen NHS Clinical Genomics Services (CGCs), commissioned by NHS England, deliver a comprehensive clinical genomic and counselling service that directs the diagnosis, risk assessment and lifelong clinical management of patients who have, or are at risk of having, a rare genetic or genomic condition. As part of the NHS CGS the patient and their family will access diagnosis and management, as well as receiving support so that they are able to understand their condition, its implications, and their options in relation to reproduction, screening, prevention and clinical management.

Genomic testing for haemochromatosis is available through the NHS Genomic Medicine Service for patients in NHS CGCs England. Testing is available for all eligible patients across England and any healthcare professional who suspects their patient may have haemochromatosis can refer their patient for testing via their local NHS CGS.

The UK National Screening Committee (UK NSC) last considered a screening programme for Hemochromatosis in March 2021 and screening was not recommended.

The UK NSC regularly reviews recommendations on screening for different conditions in the light of new research evidence becoming available. The UK NSC plans to look at the evidence to screen for hereditary haemochromatosis again in 2024.