Asked by: Gregory Campbell (Democratic Unionist Party - East Londonderry)
Question to the Department of Health and Social Care:
To ask the Secretary of State for Health and Social Care, what assessment she has made of the adequacy of diagnosis rates for genetic haemochromatosis.
Answered by Andrew Stephenson
While data is not held centrally on diagnosis rates for genetic haemochromatosis, genomic testing for haemochromatosis is available through the NHS Genomic Medicines Service (GMS) for patients in England who show an unexplained iron overload, suggestive of genetic haemochromatosis. Any clinician who suspects haemochromatosis can order this testing via local genomic laboratory hubs.
Seven NHS GMS Alliances play an important role in supporting the strategic systematic embedding of genomic medicine in end-to-end clinical pathways and clinical specialities. They help to achieve equitable access to standardised end-to-end pathways of care, inclusive of genomic testing, clinical genetics, and genomic counselling services. The alliances also raise awareness among clinicians and the public of the genomic testing available through the National Health Service and drive this embedding across all providers within their geography, from primary and community care to secondary and tertiary care.
Asked by: Wera Hobhouse (Liberal Democrat - Bath)
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.
Answered by Will Quince
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.
Asked by: John Hayes (Conservative - South Holland and The Deepings)
Question to the Department of Health and Social Care:
To ask the Secretary of State for Health and Social Care, with reference to recommendation 17 of the UK National Screening Committee's recommendations on screening for genetic haemochromatosis in adults, published 5 March 2021, when the UK National Screening Committee plans to arrange a stakeholder workshop focusing on potential research questions for reviews of screening for haemochromatosis; and whether he plans to invite patient stakeholder groups to this workshop.
Answered by Will Quince
The UK National Screening Committee (UK NSC) has a new expert research and methodology group (RMG) which offers support and advice to researchers and patient stakeholder groups on how best to influence screening recommendations.
The RMG and the UK NSC Secretariat will organise a stakeholder research meeting as soon as practicable to discuss screening for haemochromatosis.
Asked by: Sarah Olney (Liberal Democrat - Richmond Park)
Question to the Department of Health and Social Care:
To ask the Secretary of State for Health and Social Care, what funding his Department provides to GP practices for genetic testing for genetic haemochromatosis.
Answered by Will Quince
Whilst general practitioner (GP) practices are not directly funded to provide genomic testing for haemochromatosis, testing is available for all eligible patients across England through an NHS England centrally funded service. Any patient who is suspected of having haemochromatosis can be referred for testing via their local NHS Clinical Genomic Services (NHS CGSs), a comprehensive clinical genomic and counselling service that directs the diagnosis, risk assessment and lifelong clinical management of patients and their families who have, or are at risk of having, a rare genetic condition.
Individuals should discuss with their healthcare professional, for example, their GP, whether genomic testing is appropriate for them. Their GP will then make a decision whether to refer the individual either directly or via a NHS CGS for genomic testing following clinical review and the relevant genomic testing eligibility criteria.
Asked by: John Hayes (Conservative - South Holland and The Deepings)
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.
Answered by Helen Whately - Shadow Secretary of State for Work and Pensions
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.
Asked by: John Hayes (Conservative - South Holland and The Deepings)
Question to the Department of Health and Social Care:
To ask the Secretary of State for Health and Social Care, what steps his Department are taking to ensure that people with genetic haemochromatosis are able to register as blood donors with NHS Blood & Transplant.
Answered by Neil O'Brien - Shadow Minister (Education)
NHS Blood and Transplant (NHSBT) encourages patients with genetic haemochromatosis (GH) to donate blood and provides open access for individuals to self-refer. People with GH are important members of the blood donor community, and are welcome to donate blood when they are having their iron levels regularly monitored by their general practitioner or specialist team, are generally fit and well, have no organ or tissue damage and meet the standard donor eligibility criteria and designated donation intervals.
In addition, NHSBT has partnered with Haemochromatosis UK on a new campaign to reach patients with GH and encourage them to donate blood. Campaign materials have been sent out to all Haemochromatosis UK members and hospitals to cascade information to haematology nurses via transfusion practitioners to generate awareness where venesections, a treatment for GH, are taking place.
Asked by: John Hayes (Conservative - South Holland and The Deepings)
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 families with a confirmed diagnosis of genetic haemochromatosis can receive cascade screening of close relatives at risk of that condition.
Answered by Helen Whately - Shadow Secretary of State for Work and Pensions
Genomic testing for haemochromatosis is available through the NHS Genomic Medicine Service (GMS) for patients in England. Testing is available for all eligible patients across the whole of England and any healthcare professional who suspects their patient may have haemochromatosis can refer their patient for testing via their local NHS Clinical Genomic Service (NHS CGS). Testing for the common C282Y variant for hereditary haemochromatosis is covered under clinical indication R95 of the National Genomic Test Directory and clinical indication R96 if common variants have been excluded.
Asked by: John Hayes (Conservative - South Holland and The Deepings)
Question to the Department of Health and Social Care:
To ask the Secretary of State for Health and Social Care, when he expects the National Institute for Health and Care Excellence process of developing clinical guidelines for the treatment of genetic haemochromatosis in adults to restart.
Answered by Will Quince
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.
Asked by: John Hayes (Conservative - South Holland and The Deepings)
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.
Answered by Will Quince
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.
Asked by: Sarah Olney (Liberal Democrat - Richmond Park)
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 patients' level of access to testing for genetic haemochromatosis is consistent with the criteria set out in the NHS Genomics Test Directory.
Answered by Will Quince
Genomic testing in the National Health Service in England is provided through the NHS Genomic Medicine Service (GMS) and delivered by a national genomic testing network of seven NHS Genomic Laboratory Hubs (GLHs). The NHS GLHs deliver testing as directed by the National Genomic Test Directory, which outlines the full range of genomic testing offered by the NHS and sets out the eligibility criteria for patients to access testing as well as the genomic targets to be tested and the method that should be used, it is applicable nationally, providing a standardised approach.
The performance of the GLHs is monitored quarterly through an assurance framework, which ensures all GLHs are operating to national quality standards and identifies and minimises any potential variation, ensuring consistent delivery of the criteria outlined in the National Genomic Test Directory.