Mar. 19 2024
Source Page: FOI responses published by MOD: week commencing 18 March 2024Found: Candidates with a current or past history of metabolic liver disease, including, but not limited to haemochromatosis
Dec. 06 2023
Source Page: FOI responses published by MOD: week commencing 4 December 2023Found: Candidates with a current or past history of metabolic liver disease, including, but not limited to haemochromatosis
Nov. 28 2023
Source Page: Clinical Impact Awards 2022: personal statementsFound: Successfully developed and delivered new clinical services in Immune thrombocytopenia, thrombosis, haemochromatosis
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.
Jul. 19 2023
Source Page: Human Medicines Regulations 2012 Advisory Bodies Annual Report 2022Found: This medicine is proposed to be used when the cancer cells have a genetic change that allows the cancer
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: 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: 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: 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.