Asked by: Lord Freyberg (Crossbench - Excepted Hereditary)
Question to the Department of Health and Social Care:
To ask His Majesty's Government what assessment they have made of (1) reports of registration delays in multiple national cancer audit "State of the Nation" reports produced within the National Cancer Audit Collaborating Centre, (2) the impact of such delays on cancer audits and cancer research, and (3) how such delays compare with pre-pandemic levels; and what steps they are taking to return cancer registration to a timely and accurate state.
Answered by Baroness Merron - Parliamentary Under-Secretary (Department of Health and Social Care)
Cancer incidence is continuing to rise, and cancer cases are becoming more complex to register as genomics plays a rapidly growing role. NHS England continues to manage the balance between timeliness, completeness and quality in cancer registration data.
The National Cancer Audit Collaborating Centre (NATCAN) audits use data from the National Cancer Registration Dataset (NCRD) for England, which is considered the ‘gold standard’ because it draws data from various sources.
The National Disease Registration Service (NDRS) is not aware of delays in relation to NDRS data releases to NATCAN. Recommendations from the audit have informed the development of the recently published National Cancer Plan. The plan includes the ambition to increase data transparency on the quality of care and improve performance to drive up standards across the country and reduce regional variation on outcomes.
We are committed to improve the quality and granularity of cancer data to support better outcomes for cancer patients.
Asked by: Baroness Ritchie of Downpatrick (Labour - Life peer)
Question to the Department of Health and Social Care:
To ask His Majesty's Government what plans they have to publish national dementia outcomes for neighbourhood health services requiring integrated care boards to demonstrate timely access to specialist, community-based dementia support.
Answered by Baroness Merron - Parliamentary Under-Secretary (Department of Health and Social Care)
In developing the Modern Service Framework for Frailty and Dementia, we are engaging with a wide group of partners to understand what should be included to ensure the best outcomes for people living with dementia. As part of this exercise, we are considering all options to help reduce variation, including reviewing metrics and targets.
The Neighbourhood Health Service will be the driving force behind our new Genomics Population Health Service; and data will increasingly allow Neighbourhood Health Services to deliver genuinely predictive and pre-emptive care, transforming our care model entirely.
NHS England already collect and publish data about people with dementia at each general practice in England, to enable National Health Service general practitioners and commissioners to make informed choices about how to plan their dementia services around patients’ needs.
The Office for Health Improvement and Disparities Dementia Intelligence Network has also developed a tool for local systems, which includes an assessment of population characteristics such as rurality and socio-economic deprivation. This enables systems to investigate local variation in diagnosis and take informed action to enhance their diagnosis rates. The tool is available via the NHS Futures Collaboration platform.
Asked by: Lord Freyberg (Crossbench - Excepted Hereditary)
Question to the Department of Health and Social Care:
To ask His Majesty's Government what assessment they have made of the importance of prompt, large-scale molecular testing to the efficiency of commercial clinical trial recruitment, particularly in cancer; and of how prompt, large-scale molecular testing influences industry decisions on country prioritisation and site selection, in particular for late-phase trials conducted in England.
Answered by Baroness Merron - Parliamentary Under-Secretary (Department of Health and Social Care)
As set out in the Life Sciences Sector Plan, the Government aims to double commercial interventional trial participants by 2026, and again by 2029.
Access to large-scale molecular testing will play a role in delivering against this aim, since molecular testing can identify patients with specific biomarkers and target them into clinical trials. More consistent and equitable genomic testing across England will encourage commercial sponsors to place their clinical trials at research sites in the United Kingdom.
To deliver this, we are embedding genomic testing as routine practice within the NHS Genomic Medicine Service and its workforce. This includes seven NHS Genomic Laboratory Hubs delivering comprehensive genomic testing and analysis, such as whole genome sequencing, as part of routine care. The Genomics Education Programme is responsible for upskilling the entire multi-professional, multi-specialty National Health Service workforce in genomics.
The Government also supports the Rare Cancers Private Members Bill. The bill will make it easier for clinical trials on brain cancer to take place in England, by ensuring that the patient population can be more easily contacted by researchers.
Asked by: Lord Kamall (Conservative - Life peer)
Question to the Department of Health and Social Care:
To ask His Majesty's Government what assessment they have made of the report Closing the Gap: A roadmap for equitable access to genomic testing and precision medical trials for all patients with a brain tumour in the UK published by the Tessa Jowell Brain Cancer Mission in September 2024.
Answered by Baroness Merron - Parliamentary Under-Secretary (Department of Health and Social Care)
As part of the National Cancer Plan, officials have engaged with a range of stakeholders, including brain cancer clinical experts and charities, as well as receiving this report. The Department received over 11,000 responses to the Call for Evidence, which have been analysed to support the development the plan.
On 24 October 2025, NHS England published the Medium-Term Planning Framework – delivering change together 2026/27 to 2028/29. This sets out that all National Health Service providers must support embedding research as part of everyday care, meet the site-specific timeframes of the Government’s 150-day clinical trial set-up target, and for research activity and income to be reported to boards on a six-monthly basis.
We are also embedding genomic testing as routine practice within the NHS Genomic Medicine Service and its workforce. This includes seven NHS Genomic Laboratory Hubs delivering comprehensive genomic testing and analysis, such as whole genome sequencing, as part of routine care. The Genomics Education Programme is responsible for upskilling the entire multi-professional, multi-specialty NHS workforce in genomics.
The Government also supports the Rare Cancers Private Members Bill. The bill will make it easier for clinical trials on brain cancer to take place in England, by ensuring the patient population can be more easily contacted by researchers.
Asked by: Will Forster (Liberal Democrat - Woking)
Question to the Department of Health and Social Care:
To ask the Secretary of State for Health and Social Care, what steps the Government is taking to help raise awareness of 22q11.2 deletion syndrome.
Answered by Zubir Ahmed - Parliamentary Under-Secretary (Department of Health and Social Care)
The Government is committed to improving the lives of people living with rare diseases through the UK Rare Diseases Framework. One of the priorities of the Framework is improving awareness of rare diseases among healthcare professionals, including 22q11.2 deletion syndrome, also known as DiGeorge syndrome. In England, we will publish the fifth action plan updating on the progress of this priority of the UK Rare Diseases Framework in spring 2026.
NHS England supports increased awareness and understanding of DiGeorge syndrome through the NHS Genomics Education Programme which provides accessible evidence-based resources aimed at healthcare professionals, including a dedicated page on 22q deletion syndrome to support recognition, referral and appropriate use of genomic testing. Such resources are available at the following link:
https://www.genomicseducation.hee.nhs.uk/genotes/knowledge-hub/22q11-2-deletion-syndrome/
Information for families is also available at the following link:
https://www.nhs.uk/conditions/digeorge-syndrome/
Asked by: James MacCleary (Liberal Democrat - Lewes)
Question to the Department of Health and Social Care:
To ask the Secretary of State for Health and Social Care, what steps is his department taking to raise awareness of the warning signs of sudden arrhythmic death syndrome.
Answered by Ashley Dalton - Parliamentary Under-Secretary (Department of Health and Social Care)
Under the UK Rare Diseases Framework, the Government is working to improve awareness of rare diseases among healthcare professionals, including rare conditions that lead to sudden arrhythmic death syndrome (SADS).
NHS England has a published the national service specification Cardiology: Inherited Cardiac Conditions (All Ages), which is available at the following link:
https://www.england.nhs.uk/publication/cardiology-inherited-cardiac-conditions-all-ages/
This outlines the service model and mandatory guidelines for commissioned providers in England to support the diagnosis and treatment of patients or families affected by inherited cardiac conditions or sudden cardiac death. NHS England is currently reviewing this service specification and is working with stakeholders as part of this review including NHS clinical experts and the British Inherited Cardiovascular Conditions Society. The NHS England Genomics Education Programme has also developed a range of educational resources for healthcare professionals.
This includes a Knowledge Hub page on sudden arrhythmic death syndrome, including information on presentation, diagnosis, management, and links for clinicians to further resources. Further information is available at the following link:
https://www.genomicseducation.hee.nhs.uk/genotes/knowledge-hub/sudden-arrhythmic-death-syndrome/
Asked by: Rupert Lowe (Independent - Great Yarmouth)
Question to the Department of Health and Social Care:
To ask the Secretary of State for Health and Social Care, whether any NHS Trusts (a) employ specialist staff or (b) operate dedicated services to address genetic disorders associated with consanguinity.
Answered by Zubir Ahmed - Parliamentary Under-Secretary (Department of Health and Social Care)
The National Health Service in England supports patients with a variety of conditions related to genetics. NHS England is piloting and evaluating new models of care to improve the equity of access to genetic services for the small proportion of couples at increased genetic risk due to close relative marriage. NHS England is funding additional capacity in several professions, including midwifery, genomics associates, and neonatal nurses, in nine pilot sites through the Genetic Risk Equity Project. 3.8 whole time equivalent (WTE) midwives and one WTE neonatal nurse were in post in 2024/25 to deliver the Genetic Risk Equity Project.
Asked by: Rupert Lowe (Independent - Great Yarmouth)
Question to the Department of Health and Social Care:
To ask the Secretary of State for Health and Social Care, how many NHS staff there are whose responsibilities include addressing genetic disorders associated with consanguinity.
Answered by Zubir Ahmed - Parliamentary Under-Secretary (Department of Health and Social Care)
The National Health Service in England supports patients with a variety of conditions related to genetics. NHS England is piloting and evaluating new models of care to improve the equity of access to genetic services for the small proportion of couples at increased genetic risk due to close relative marriage. NHS England is funding additional capacity in several professions, including midwifery, genomics associates, and neonatal nurses, in nine pilot sites through the Genetic Risk Equity Project. 3.8 whole time equivalent (WTE) midwives and one WTE neonatal nurse were in post in 2024/25 to deliver the Genetic Risk Equity Project.
Asked by: John Lamont (Conservative - Berwickshire, Roxburgh and Selkirk)
Question to the Department of Health and Social Care:
To ask the Secretary of State for Health and Social Care, what steps is his Department is taking to ensure brain tumour patients have timely access to whole genome sequencing.
Answered by Zubir Ahmed - Parliamentary Under-Secretary (Department of Health and Social Care)
Genomic testing is delivered through the NHS Genomic Medicine Service via seven regional NHS Genomic Laboratory Hubs (NHS GLHs). Testing follows the National Genomic Test Directory, which includes whole genome sequencing (WGS) for neurological tumours, including primary brain cancers. NHS England has produced national sample handling guidance for WGS of solid tumours, including brain tumours, to maintain DNA quality and improve access to WGS by standardising the collection, processing, and transport of samples. Approaches to the handling of fresh tissue have also been reviewed to speed up processes. In 2025/26, NHS England is continuing its Cancer Genomics Improvement Programme to deliver quality improvement initiatives, education, local engagement, and the establishment of Cellular Pathology Genomic Centres to streamline cancer genomics pathways and accelerate genomic testing. These approaches are addressing variability and ensuring equitable regional access to WGS for brain tumour patients. NHS England monitors performance through Patient Level Contract Monitoring data and works with NHS GLHs to address variation and drive improvements.
Asked by: Pippa Heylings (Liberal Democrat - South Cambridgeshire)
Question to the Department of Health and Social Care:
To ask the Secretary of State for Health and Social Care, when he plans to launch the study to sequence the genomes of 150,000 adults.
Answered by Zubir Ahmed - Parliamentary Under-Secretary (Department of Health and Social Care)
The 10-Year Health Plan for England committed to launching a large-scale study, led by Genomics England, to sequence 150,000 adult genomes and assess how genomics can support routine preventive care. Work is now underway to design the study, develop scientific and clinical methodologies, and establish governance in line with major programme standards. Genomics England has commissioned a structured literature review and launched the Genomics, Healthcare and You engagement programme to understand diverse public and professional perspectives on pre-emptive, preventative population healthcare, while building trust and transparency. This engagement will run through 2025/26, with interim findings shaping study design and recruitment strategies which will be developed in 2026/27. Subject to ethics approval, the recruitment and sequencing of participants is expected to begin from 2027.