Asked by: Stuart Andrew (Conservative - Daventry)
Question to the Department of Health and Social Care:
To ask the Secretary of State for Health and Social Care, whether he has made an estimate of of the cost to the NHS of the resident doctors’ strike beginning on 7 April 2026.
Answered by Karin Smyth - Minister of State (Department of Health and Social Care)
We have estimated cost of strikes at £50 million per day for resident doctors currently. This would mean that the six-day strike beginning 7 April 2026 is estimated to cost approximately £300 million. We continue to update estimates as new data becomes available, in line with receiving business as usual financial data from National Health Service providers.
The NHS has tried and tested plans in place to minimise disruption and will work with partners to ensure safe care for patients continues to be available and emergency services continue to operate.
Asked by: Stuart Andrew (Conservative - Daventry)
Question to the Department of Health and Social Care:
To ask the Secretary of State for Health and Social Care, pursuant to the Answer of 19 December 2025 to Question 99742 on Screening: Babies, whether the research being undertaken to understand delays in diagnosis will include consideration of (a) the performance of the newborn screening programme and (b) the process by which conditions are added to that programme; and whether he will publish the terms of reference for that research.
Answered by Sharon Hodgson - Parliamentary Under-Secretary (Department of Health and Social Care)
Last year, the 10-Year Health Plan was published following a national conversation to make the National Health Service work better for people.
We know that significant unmet need remains for people living with rare diseases, and in February this year we published the England Rare Diseases Action Plan 2026 to highlight how delivery of the 10-Year Health Plan will address challenges for people living with rare diseases. The England Rare Diseases Action Plan 2026 is available at the following link:
The Department invests over £1.7 billion each year on research through the National Institute for Health and Care Research (NIHR). This includes the NIHR funded RareCare study which aims to better understand what causes delays to diagnosis so we can take steps to address this. The research includes looking at how we can measure time to diagnosis for rare diseases which includes those that are covered by Newborn Blood Spot (NBS).
Another example of NIHR funded research is the evaluation of test accuracy studies in NBS screening and rare disease settings. This project aims to provide guidance on the evidence needed to evaluate the accuracy of NBS screening to ultimately improve the quality of the available evidence base to support better decision making about new or modified screening programmes.
For very rare conditions, it is difficult to generate robust evidence to demonstrate the value of screening, because so few babies are affected. The UK National Screening Committee (UK NSC), which advises the Government on all screening matters, is working with experts and partner organisations to look at how to make it easier to develop the evidence needed to make robust recommendations on the addition of more rare diseases to the NBS screening programme.
Information about how the UK NSC makes screening recommendations, and how stakeholders and members of the public can be involved, is available at the following link:
https://www.gov.uk/government/collections/uk-nsc-evidence-consultations-and-reviews
The UK NSC’s terms of reference are available online and can be found via the following link:
https://www.gov.uk/government/organisations/uk-national-screening-committee/about#terms-of-reference
These were last reviewed and updated in 2022. The terms of reference are set by the four United Kingdom health departments and are signed off by the four chief medical officers.
In the last few years, the UK NSC has recommended lung cancer screening, newborn screening for tyrosinaemia type 1, human papillomavirus self-sampling in under-screened women in the Cervical Screening Programme, research activity into rare diseases such as spinal muscular atrophy and severe combined immunodeficiency, the extension of intervals for diabetic eye screening, the use of DNA in the mother’s blood in the Fetal Anomaly Screening Programme, digital pathology in the cancer screening programmes, and extra tests for Edwards syndrome in pregnancy. It has also worked with partners to develop a very large trial on artificial intelligence in breast screening.
The UK NSC uses international published evidence from all across the world. Some countries or regions reportedly screen for a condition when it is only at the pilot or research stage. Some ‘screening programmes’ just test for a condition rather than being end-to-end quality-assured programmes that include diagnosis, treatment, and care. And screening in some countries is delivered regionally, or even just by individual hospitals, rather than nationally. They are therefore not directly comparable to the national screening programmes offered in the UK.
The UK NSC last reviewed screening for metachromatic leukodystrophy (MLD) in 2025. At the November 2025 UK NSC meeting, committee members concluded that there was not enough evidence to support newborn screening for MLD. However, members agreed that MLD would be a good candidate for inclusion in a multi-condition in-service evaluation (ISE) within the UK newborn blood spot screening programme, called EquipoISE. Full details of this review, including the evidence that was considered, are available at the following link:
https://view-health-screening-recommendations.service.gov.uk/metachromatic-leukodystrophy/
EquipoISE is a proposed rolling, multi-condition ISE embedded within the NHS NBS screening programme that would help the UK NSC make timely evidence-based recommendations on multiple rare conditions. EquipoISE would evaluate multiple conditions simultaneously, sharing a single research infrastructure. This would significantly reduce costs and setup time, rather than conducting expensive, one-off studies for each individual rare condition.
The UK NSC is using EquipoISE in its work with experts and partner organisations to look at how to make it easier to develop the evidence needed to make robust recommendations on the addition of more rare diseases to the NHS NBS screening programme.
UK NSC members and Department officials met with stakeholders, including ArchAngel MLD Trust, the MPS Society, MLD Support UK, and the Newborn Screening Collaborative, in February this year.
Asked by: Stuart Andrew (Conservative - Daventry)
Question to the Department of Health and Social Care:
To ask the Secretary of State for Health and Social Care, pursuant to the Answer of 7 January 2026 to Question 99743, whether his Department has met with ArchAngel MLD Trust, the MPS Society, MLD Support UK and the Newborn Screening Collaborative; and whether he plans to meet those organisations.
Answered by Sharon Hodgson - Parliamentary Under-Secretary (Department of Health and Social Care)
Last year, the 10-Year Health Plan was published following a national conversation to make the National Health Service work better for people.
We know that significant unmet need remains for people living with rare diseases, and in February this year we published the England Rare Diseases Action Plan 2026 to highlight how delivery of the 10-Year Health Plan will address challenges for people living with rare diseases. The England Rare Diseases Action Plan 2026 is available at the following link:
The Department invests over £1.7 billion each year on research through the National Institute for Health and Care Research (NIHR). This includes the NIHR funded RareCare study which aims to better understand what causes delays to diagnosis so we can take steps to address this. The research includes looking at how we can measure time to diagnosis for rare diseases which includes those that are covered by Newborn Blood Spot (NBS).
Another example of NIHR funded research is the evaluation of test accuracy studies in NBS screening and rare disease settings. This project aims to provide guidance on the evidence needed to evaluate the accuracy of NBS screening to ultimately improve the quality of the available evidence base to support better decision making about new or modified screening programmes.
For very rare conditions, it is difficult to generate robust evidence to demonstrate the value of screening, because so few babies are affected. The UK National Screening Committee (UK NSC), which advises the Government on all screening matters, is working with experts and partner organisations to look at how to make it easier to develop the evidence needed to make robust recommendations on the addition of more rare diseases to the NBS screening programme.
Information about how the UK NSC makes screening recommendations, and how stakeholders and members of the public can be involved, is available at the following link:
https://www.gov.uk/government/collections/uk-nsc-evidence-consultations-and-reviews
The UK NSC’s terms of reference are available online and can be found via the following link:
https://www.gov.uk/government/organisations/uk-national-screening-committee/about#terms-of-reference
These were last reviewed and updated in 2022. The terms of reference are set by the four United Kingdom health departments and are signed off by the four chief medical officers.
In the last few years, the UK NSC has recommended lung cancer screening, newborn screening for tyrosinaemia type 1, human papillomavirus self-sampling in under-screened women in the Cervical Screening Programme, research activity into rare diseases such as spinal muscular atrophy and severe combined immunodeficiency, the extension of intervals for diabetic eye screening, the use of DNA in the mother’s blood in the Fetal Anomaly Screening Programme, digital pathology in the cancer screening programmes, and extra tests for Edwards syndrome in pregnancy. It has also worked with partners to develop a very large trial on artificial intelligence in breast screening.
The UK NSC uses international published evidence from all across the world. Some countries or regions reportedly screen for a condition when it is only at the pilot or research stage. Some ‘screening programmes’ just test for a condition rather than being end-to-end quality-assured programmes that include diagnosis, treatment, and care. And screening in some countries is delivered regionally, or even just by individual hospitals, rather than nationally. They are therefore not directly comparable to the national screening programmes offered in the UK.
The UK NSC last reviewed screening for metachromatic leukodystrophy (MLD) in 2025. At the November 2025 UK NSC meeting, committee members concluded that there was not enough evidence to support newborn screening for MLD. However, members agreed that MLD would be a good candidate for inclusion in a multi-condition in-service evaluation (ISE) within the UK newborn blood spot screening programme, called EquipoISE. Full details of this review, including the evidence that was considered, are available at the following link:
https://view-health-screening-recommendations.service.gov.uk/metachromatic-leukodystrophy/
EquipoISE is a proposed rolling, multi-condition ISE embedded within the NHS NBS screening programme that would help the UK NSC make timely evidence-based recommendations on multiple rare conditions. EquipoISE would evaluate multiple conditions simultaneously, sharing a single research infrastructure. This would significantly reduce costs and setup time, rather than conducting expensive, one-off studies for each individual rare condition.
The UK NSC is using EquipoISE in its work with experts and partner organisations to look at how to make it easier to develop the evidence needed to make robust recommendations on the addition of more rare diseases to the NHS NBS screening programme.
UK NSC members and Department officials met with stakeholders, including ArchAngel MLD Trust, the MPS Society, MLD Support UK, and the Newborn Screening Collaborative, in February this year.
Asked by: Stuart Andrew (Conservative - Daventry)
Question to the Department of Health and Social Care:
To ask the Secretary of State for Health and Social Care, pursuant to the Answer of 7 January 2026 to Question 99744, what steps his Department is taking to improve the availability and quality of evidence for rare diseases.
Answered by Sharon Hodgson - Parliamentary Under-Secretary (Department of Health and Social Care)
Last year, the 10-Year Health Plan was published following a national conversation to make the National Health Service work better for people.
We know that significant unmet need remains for people living with rare diseases, and in February this year we published the England Rare Diseases Action Plan 2026 to highlight how delivery of the 10-Year Health Plan will address challenges for people living with rare diseases. The England Rare Diseases Action Plan 2026 is available at the following link:
The Department invests over £1.7 billion each year on research through the National Institute for Health and Care Research (NIHR). This includes the NIHR funded RareCare study which aims to better understand what causes delays to diagnosis so we can take steps to address this. The research includes looking at how we can measure time to diagnosis for rare diseases which includes those that are covered by Newborn Blood Spot (NBS).
Another example of NIHR funded research is the evaluation of test accuracy studies in NBS screening and rare disease settings. This project aims to provide guidance on the evidence needed to evaluate the accuracy of NBS screening to ultimately improve the quality of the available evidence base to support better decision making about new or modified screening programmes.
For very rare conditions, it is difficult to generate robust evidence to demonstrate the value of screening, because so few babies are affected. The UK National Screening Committee (UK NSC), which advises the Government on all screening matters, is working with experts and partner organisations to look at how to make it easier to develop the evidence needed to make robust recommendations on the addition of more rare diseases to the NBS screening programme.
Information about how the UK NSC makes screening recommendations, and how stakeholders and members of the public can be involved, is available at the following link:
https://www.gov.uk/government/collections/uk-nsc-evidence-consultations-and-reviews
The UK NSC’s terms of reference are available online and can be found via the following link:
https://www.gov.uk/government/organisations/uk-national-screening-committee/about#terms-of-reference
These were last reviewed and updated in 2022. The terms of reference are set by the four United Kingdom health departments and are signed off by the four chief medical officers.
In the last few years, the UK NSC has recommended lung cancer screening, newborn screening for tyrosinaemia type 1, human papillomavirus self-sampling in under-screened women in the Cervical Screening Programme, research activity into rare diseases such as spinal muscular atrophy and severe combined immunodeficiency, the extension of intervals for diabetic eye screening, the use of DNA in the mother’s blood in the Fetal Anomaly Screening Programme, digital pathology in the cancer screening programmes, and extra tests for Edwards syndrome in pregnancy. It has also worked with partners to develop a very large trial on artificial intelligence in breast screening.
The UK NSC uses international published evidence from all across the world. Some countries or regions reportedly screen for a condition when it is only at the pilot or research stage. Some ‘screening programmes’ just test for a condition rather than being end-to-end quality-assured programmes that include diagnosis, treatment, and care. And screening in some countries is delivered regionally, or even just by individual hospitals, rather than nationally. They are therefore not directly comparable to the national screening programmes offered in the UK.
The UK NSC last reviewed screening for metachromatic leukodystrophy (MLD) in 2025. At the November 2025 UK NSC meeting, committee members concluded that there was not enough evidence to support newborn screening for MLD. However, members agreed that MLD would be a good candidate for inclusion in a multi-condition in-service evaluation (ISE) within the UK newborn blood spot screening programme, called EquipoISE. Full details of this review, including the evidence that was considered, are available at the following link:
https://view-health-screening-recommendations.service.gov.uk/metachromatic-leukodystrophy/
EquipoISE is a proposed rolling, multi-condition ISE embedded within the NHS NBS screening programme that would help the UK NSC make timely evidence-based recommendations on multiple rare conditions. EquipoISE would evaluate multiple conditions simultaneously, sharing a single research infrastructure. This would significantly reduce costs and setup time, rather than conducting expensive, one-off studies for each individual rare condition.
The UK NSC is using EquipoISE in its work with experts and partner organisations to look at how to make it easier to develop the evidence needed to make robust recommendations on the addition of more rare diseases to the NHS NBS screening programme.
UK NSC members and Department officials met with stakeholders, including ArchAngel MLD Trust, the MPS Society, MLD Support UK, and the Newborn Screening Collaborative, in February this year.
Asked by: Stuart Andrew (Conservative - Daventry)
Question to the Department of Health and Social Care:
To ask the Secretary of State for Health and Social Care, whether his Department uses international data when assessing evidence for rare diseases; and if he will make an assessment of the potential role of such data in relation to metachromatic leukodystrophy.
Answered by Sharon Hodgson - Parliamentary Under-Secretary (Department of Health and Social Care)
Last year, the 10-Year Health Plan was published following a national conversation to make the National Health Service work better for people.
We know that significant unmet need remains for people living with rare diseases, and in February this year we published the England Rare Diseases Action Plan 2026 to highlight how delivery of the 10-Year Health Plan will address challenges for people living with rare diseases. The England Rare Diseases Action Plan 2026 is available at the following link:
The Department invests over £1.7 billion each year on research through the National Institute for Health and Care Research (NIHR). This includes the NIHR funded RareCare study which aims to better understand what causes delays to diagnosis so we can take steps to address this. The research includes looking at how we can measure time to diagnosis for rare diseases which includes those that are covered by Newborn Blood Spot (NBS).
Another example of NIHR funded research is the evaluation of test accuracy studies in NBS screening and rare disease settings. This project aims to provide guidance on the evidence needed to evaluate the accuracy of NBS screening to ultimately improve the quality of the available evidence base to support better decision making about new or modified screening programmes.
For very rare conditions, it is difficult to generate robust evidence to demonstrate the value of screening, because so few babies are affected. The UK National Screening Committee (UK NSC), which advises the Government on all screening matters, is working with experts and partner organisations to look at how to make it easier to develop the evidence needed to make robust recommendations on the addition of more rare diseases to the NBS screening programme.
Information about how the UK NSC makes screening recommendations, and how stakeholders and members of the public can be involved, is available at the following link:
https://www.gov.uk/government/collections/uk-nsc-evidence-consultations-and-reviews
The UK NSC’s terms of reference are available online and can be found via the following link:
https://www.gov.uk/government/organisations/uk-national-screening-committee/about#terms-of-reference
These were last reviewed and updated in 2022. The terms of reference are set by the four United Kingdom health departments and are signed off by the four chief medical officers.
In the last few years, the UK NSC has recommended lung cancer screening, newborn screening for tyrosinaemia type 1, human papillomavirus self-sampling in under-screened women in the Cervical Screening Programme, research activity into rare diseases such as spinal muscular atrophy and severe combined immunodeficiency, the extension of intervals for diabetic eye screening, the use of DNA in the mother’s blood in the Fetal Anomaly Screening Programme, digital pathology in the cancer screening programmes, and extra tests for Edwards syndrome in pregnancy. It has also worked with partners to develop a very large trial on artificial intelligence in breast screening.
The UK NSC uses international published evidence from all across the world. Some countries or regions reportedly screen for a condition when it is only at the pilot or research stage. Some ‘screening programmes’ just test for a condition rather than being end-to-end quality-assured programmes that include diagnosis, treatment, and care. And screening in some countries is delivered regionally, or even just by individual hospitals, rather than nationally. They are therefore not directly comparable to the national screening programmes offered in the UK.
The UK NSC last reviewed screening for metachromatic leukodystrophy (MLD) in 2025. At the November 2025 UK NSC meeting, committee members concluded that there was not enough evidence to support newborn screening for MLD. However, members agreed that MLD would be a good candidate for inclusion in a multi-condition in-service evaluation (ISE) within the UK newborn blood spot screening programme, called EquipoISE. Full details of this review, including the evidence that was considered, are available at the following link:
https://view-health-screening-recommendations.service.gov.uk/metachromatic-leukodystrophy/
EquipoISE is a proposed rolling, multi-condition ISE embedded within the NHS NBS screening programme that would help the UK NSC make timely evidence-based recommendations on multiple rare conditions. EquipoISE would evaluate multiple conditions simultaneously, sharing a single research infrastructure. This would significantly reduce costs and setup time, rather than conducting expensive, one-off studies for each individual rare condition.
The UK NSC is using EquipoISE in its work with experts and partner organisations to look at how to make it easier to develop the evidence needed to make robust recommendations on the addition of more rare diseases to the NHS NBS screening programme.
UK NSC members and Department officials met with stakeholders, including ArchAngel MLD Trust, the MPS Society, MLD Support UK, and the Newborn Screening Collaborative, in February this year.
Asked by: Stuart Andrew (Conservative - Daventry)
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 suitability of using estimated free sugars data within the 2018 Nutrient Profile Model for regulatory purposes.
Answered by Sharon Hodgson - Parliamentary Under-Secretary (Department of Health and Social Care)
The Government has committed to updating the standards behind the current advertising and promotions restrictions on ‘less healthy’ food and drink.
The advertising and promotions restrictions currently rely on the outdated Nutrient Profiling Model (NPM) 2004/05. The new NPM has been updated in line with the latest dietary advice from the United Kingdom’s Scientific Advisory Committee on Nutrition, particularly in relation to free sugar and fibre. The Government published the new NPM on 27 January. Applying it to the restrictions will strengthen these policies by bringing more products of concern for children’s health into scope.
On 25 March, we launched a 12-week consultation on the proposed application of the new NPM to the advertising and promotion restrictions and published an impact assessment of the direct costs to businesses and intended health outcomes. We will use evidence from the consultation to inform the final impact assessment, which we will publish prior to amending the advertising and promotions restrictions legislation.
The NPM is not about restricting reformulation. The aim is to stop the targeting of ‘less healthy’ food and drink marketing to children and to encourage further reformulation and the promotion of healthier options. While some products previously reformulated to meet the NPM 2004/05 may need to go further, the new NPM continues to incentivise reformulation and supports industry to deliver healthier products over time by allowing greater credit for fibre.
We have published detailed technical guidance to support consistent calculation of free sugars, including a clear definition, a decision tree to help identify when a free sugars calculation is needed, and worked examples across a wide range of food and drink products. We continue to engage closely with industry and other stakeholders to address technical points relating to the new NPM and calculating free sugars and to determine what might support them further.
Asked by: Stuart Andrew (Conservative - Daventry)
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 practical achievability of product reformulation in relation to the 2018 Nutrient Profile Model.
Answered by Sharon Hodgson - Parliamentary Under-Secretary (Department of Health and Social Care)
The Government has committed to updating the standards behind the current advertising and promotions restrictions on ‘less healthy’ food and drink.
The advertising and promotions restrictions currently rely on the outdated Nutrient Profiling Model (NPM) 2004/05. The new NPM has been updated in line with the latest dietary advice from the United Kingdom’s Scientific Advisory Committee on Nutrition, particularly in relation to free sugar and fibre. The Government published the new NPM on 27 January. Applying it to the restrictions will strengthen these policies by bringing more products of concern for children’s health into scope.
On 25 March, we launched a 12-week consultation on the proposed application of the new NPM to the advertising and promotion restrictions and published an impact assessment of the direct costs to businesses and intended health outcomes. We will use evidence from the consultation to inform the final impact assessment, which we will publish prior to amending the advertising and promotions restrictions legislation.
The NPM is not about restricting reformulation. The aim is to stop the targeting of ‘less healthy’ food and drink marketing to children and to encourage further reformulation and the promotion of healthier options. While some products previously reformulated to meet the NPM 2004/05 may need to go further, the new NPM continues to incentivise reformulation and supports industry to deliver healthier products over time by allowing greater credit for fibre.
We have published detailed technical guidance to support consistent calculation of free sugars, including a clear definition, a decision tree to help identify when a free sugars calculation is needed, and worked examples across a wide range of food and drink products. We continue to engage closely with industry and other stakeholders to address technical points relating to the new NPM and calculating free sugars and to determine what might support them further.
Asked by: Stuart Andrew (Conservative - Daventry)
Question to the Department of Health and Social Care:
To ask the Secretary of State for Health and Social Care, what assessment he has made of the potential impact of the withdrawal of additional speciality training places for resident doctors in 2026-27 on NHS workforce planning.
Answered by Karin Smyth - Minister of State (Department of Health and Social Care)
On 22 March, the Government made a formal offer to the British Medical Association (BMA) Resident Doctors Committee (RDC) to seek to resolve their dispute. This was the product of joint negotiation with BMA RDC officers. The offer included a package of measures to tackle training bottlenecks, including increasing specialty training places by up to 4,500 over three years.
This offer was rejected by the committee on 25 March, and the BMA RDC immediately called industrial action in England for 7 to 13 April 2026.
An assessment was made by my Rt Hon. Friend, the Secretary of State for Health and Social Care, and senior leaders within NHS England that due to the financial and operational impact of the six day strike action in April, the 1,000 additional roles set to be launched in April could not go ahead as planned.
We will still be introducing the additional 1,000 training posts committed to in the 10-Year Health Plan over the next three years.
The decision not to bring forward the launch of 1,000 additional training places to this April will not reduce the number of doctors working in the National Health Service or its ability to serve patients. The additional posts would have changed the proportion of doctors in formal training pathways or in local employment or non-training roles.
Asked by: Stuart Andrew (Conservative - Daventry)
Question to the Department of Health and Social Care:
To ask the Secretary of State for Health and Social Care, pursuant to the Answer of 7 January 2026 to Question 99741, what evidence the UK National Screening Committee considered in reaching its recommendation on screening for metachromatic leukodystrophy; and what assessment it made of the balance of benefits and harms.
Answered by Sharon Hodgson - Parliamentary Under-Secretary (Department of Health and Social Care)
Last year, the 10-Year Health Plan was published following a national conversation to make the National Health Service work better for people.
We know that significant unmet need remains for people living with rare diseases, and in February this year we published the England Rare Diseases Action Plan 2026 to highlight how delivery of the 10-Year Health Plan will address challenges for people living with rare diseases. The England Rare Diseases Action Plan 2026 is available at the following link:
The Department invests over £1.7 billion each year on research through the National Institute for Health and Care Research (NIHR). This includes the NIHR funded RareCare study which aims to better understand what causes delays to diagnosis so we can take steps to address this. The research includes looking at how we can measure time to diagnosis for rare diseases which includes those that are covered by Newborn Blood Spot (NBS).
Another example of NIHR funded research is the evaluation of test accuracy studies in NBS screening and rare disease settings. This project aims to provide guidance on the evidence needed to evaluate the accuracy of NBS screening to ultimately improve the quality of the available evidence base to support better decision making about new or modified screening programmes.
For very rare conditions, it is difficult to generate robust evidence to demonstrate the value of screening, because so few babies are affected. The UK National Screening Committee (UK NSC), which advises the Government on all screening matters, is working with experts and partner organisations to look at how to make it easier to develop the evidence needed to make robust recommendations on the addition of more rare diseases to the NBS screening programme.
Information about how the UK NSC makes screening recommendations, and how stakeholders and members of the public can be involved, is available at the following link:
https://www.gov.uk/government/collections/uk-nsc-evidence-consultations-and-reviews
The UK NSC’s terms of reference are available online and can be found via the following link:
https://www.gov.uk/government/organisations/uk-national-screening-committee/about#terms-of-reference
These were last reviewed and updated in 2022. The terms of reference are set by the four United Kingdom health departments and are signed off by the four chief medical officers.
In the last few years, the UK NSC has recommended lung cancer screening, newborn screening for tyrosinaemia type 1, human papillomavirus self-sampling in under-screened women in the Cervical Screening Programme, research activity into rare diseases such as spinal muscular atrophy and severe combined immunodeficiency, the extension of intervals for diabetic eye screening, the use of DNA in the mother’s blood in the Fetal Anomaly Screening Programme, digital pathology in the cancer screening programmes, and extra tests for Edwards syndrome in pregnancy. It has also worked with partners to develop a very large trial on artificial intelligence in breast screening.
The UK NSC uses international published evidence from all across the world. Some countries or regions reportedly screen for a condition when it is only at the pilot or research stage. Some ‘screening programmes’ just test for a condition rather than being end-to-end quality-assured programmes that include diagnosis, treatment, and care. And screening in some countries is delivered regionally, or even just by individual hospitals, rather than nationally. They are therefore not directly comparable to the national screening programmes offered in the UK.
The UK NSC last reviewed screening for metachromatic leukodystrophy (MLD) in 2025. At the November 2025 UK NSC meeting, committee members concluded that there was not enough evidence to support newborn screening for MLD. However, members agreed that MLD would be a good candidate for inclusion in a multi-condition in-service evaluation (ISE) within the UK newborn blood spot screening programme, called EquipoISE. Full details of this review, including the evidence that was considered, are available at the following link:
https://view-health-screening-recommendations.service.gov.uk/metachromatic-leukodystrophy/
EquipoISE is a proposed rolling, multi-condition ISE embedded within the NHS NBS screening programme that would help the UK NSC make timely evidence-based recommendations on multiple rare conditions. EquipoISE would evaluate multiple conditions simultaneously, sharing a single research infrastructure. This would significantly reduce costs and setup time, rather than conducting expensive, one-off studies for each individual rare condition.
The UK NSC is using EquipoISE in its work with experts and partner organisations to look at how to make it easier to develop the evidence needed to make robust recommendations on the addition of more rare diseases to the NHS NBS screening programme.
UK NSC members and Department officials met with stakeholders, including ArchAngel MLD Trust, the MPS Society, MLD Support UK, and the Newborn Screening Collaborative, in February this year.
Asked by: Stuart Andrew (Conservative - Daventry)
Question to the Department of Health and Social Care:
To ask the Secretary of State for Health and Social Care, whether he considers the impact assessment carried out in relation to the 2018 Nutrient Profile Model to remain adequate.
Answered by Sharon Hodgson - Parliamentary Under-Secretary (Department of Health and Social Care)
The Government has committed to updating the standards behind the current advertising and promotions restrictions on ‘less healthy’ food and drink.
The advertising and promotions restrictions currently rely on the outdated Nutrient Profiling Model (NPM) 2004/05. The new NPM has been updated in line with the latest dietary advice from the United Kingdom’s Scientific Advisory Committee on Nutrition, particularly in relation to free sugar and fibre. The Government published the new NPM on 27 January. Applying it to the restrictions will strengthen these policies by bringing more products of concern for children’s health into scope.
On 25 March, we launched a 12-week consultation on the proposed application of the new NPM to the advertising and promotion restrictions and published an impact assessment of the direct costs to businesses and intended health outcomes. We will use evidence from the consultation to inform the final impact assessment, which we will publish prior to amending the advertising and promotions restrictions legislation.
The NPM is not about restricting reformulation. The aim is to stop the targeting of ‘less healthy’ food and drink marketing to children and to encourage further reformulation and the promotion of healthier options. While some products previously reformulated to meet the NPM 2004/05 may need to go further, the new NPM continues to incentivise reformulation and supports industry to deliver healthier products over time by allowing greater credit for fibre.
We have published detailed technical guidance to support consistent calculation of free sugars, including a clear definition, a decision tree to help identify when a free sugars calculation is needed, and worked examples across a wide range of food and drink products. We continue to engage closely with industry and other stakeholders to address technical points relating to the new NPM and calculating free sugars and to determine what might support them further.