Asked by: Peter Dowd (Labour - Bootle)
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 UK National Screening Committee commissioning a cost-effectiveness modeling study for spinal muscular atrophy on the timeline for implementing newborn screenings across the UK.
Answered by Will Quince
The UK National Screening Committee reviewed screening for spinal muscular atrophy in June 2023. While acknowledging recent developments, it found that more evidence was needed to assess how screening might work safely in the United Kingdom.
Its recommendation was to develop a new cost effectiveness modelling study for the UK screening context, as well as start scoping in-service evaluation work in live services in the National Health Service in the UK.
Planning is now underway for the modelling and in-service evaluation, which will help to address these uncertainties and unanswered questions. The UK National Screening Committee will continue to engage with spinal muscular atrophy stakeholders to help shape and input into the work and will keep the public updated via blog articles and ongoing stakeholder engagement.
Asked by: Peter Dowd (Labour - Bootle)
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 (a) ensure and (b) monitor the (i) introduction, (ii) delivery and (iii) completion of the in-service evaluation for spinal muscular atrophy screening in the NHS.
Answered by Will Quince
The UK National Screening Committee reviewed screening for spinal muscular atrophy in June 2023. While acknowledging recent developments, it found that more evidence was needed to assess how screening might work safely in the United Kingdom.
Its recommendation was to develop a new cost effectiveness modelling study for the UK screening context, as well as start scoping in-service evaluation work in live services in the National Health Service in the UK.
Planning is now underway for the modelling and in-service evaluation, which will help to address these uncertainties and unanswered questions. The UK National Screening Committee will continue to engage with spinal muscular atrophy stakeholders to help shape and input into the work and will keep the public updated via blog articles and ongoing stakeholder engagement.
Asked by: Peter Dowd (Labour - Bootle)
Question to the Department of Health and Social Care:
To ask the Secretary of State for Health and Social Care, whether he has made a comparative assessment of the number of conditions screened under the NHS bloodspot programme with similar programmes in other European countries.
Answered by Will Quince
The UK National Screening Committee recently published a paper comparing the United Kingdom with other European countries, which is available at the following link:
https://www.thelancet.com/journals/lanepe/article/PIIS2666-7762(23)00133-3/fulltext
The paper will hopefully improve understanding of the way in which screening principles are developed and applied in new-born blood spot screening settings across the continent.
Asked by: Peter Dowd (Labour - Bootle)
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 merits of introducing newborn screening for spinal muscular atrophy on the priorities of the UK Rare Disease Framework.
Answered by Will Quince
The Rare Diseases Framework is a high-level document containing overarching priorities and underpinning themes for rare disease policy up to 2025. The Framework is not focused on specific diseases but aims to improve the lives of all people living with rare conditions. As such, no assessment has been made.
In June 2023, the UK National Screening Committee (UK NSC) recommended that a modelling study be carried out alongside an in-service evaluation of spinal muscular atrophy (SMA) screening in the National Health Service in the United Kingdom. This important work will give the UK NSC the evidence it needs to assess how newborn screening for SMA might work safely in the UK.
Asked by: Peter Dowd (Labour - Bootle)
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 adequacy of the timelines for the UK National Screening Committee’s in-service evaluation for severe combined immunodeficiency screening in the NHS; and whether his Department has plans to reduce the timeline for the upcoming in-service evaluation for spinal muscular atrophy screening.
Answered by Will Quince
In June 2023, the UK National Screening Committee (UK NSC) recommended that a modelling study be carried out alongside an in-service evaluation of spinal muscular atrophy (SMA) screening in the National Health Service. Around 70 babies a year are born with SMA in the United Kingdom (around 1 in every 10,000 live births), with approximately 60% of those having type 1 SMA (SMA1).
The new model will help define important issues for the in-service evaluation, while the evaluation will be used to collect data to feed into the model and test its assumptions. This important work will give the UK NSC the evidence it needs to assess how newborn screening for SMA might work safely in the UK.
Work is still in the planning stages therefore timescales are not established yet. The UK NSC will keep ministers informed, and the public up to date on progress via its blog and ongoing stakeholder engagement.
Asked by: Peter Dowd (Labour - Bootle)
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 the number of babies born with spinal muscular atrophy that may experience irreversible disability between August 2023 and the conclusion of the review into newborn screening.
Answered by Will Quince
In June 2023, the UK National Screening Committee (UK NSC) recommended that a modelling study be carried out alongside an in-service evaluation of spinal muscular atrophy (SMA) screening in the National Health Service. Around 70 babies a year are born with SMA in the United Kingdom (around 1 in every 10,000 live births), with approximately 60% of those having type 1 SMA (SMA1).
The new model will help define important issues for the in-service evaluation, while the evaluation will be used to collect data to feed into the model and test its assumptions. This important work will give the UK NSC the evidence it needs to assess how newborn screening for SMA might work safely in the UK.
Work is still in the planning stages therefore timescales are not established yet. The UK NSC will keep ministers informed, and the public up to date on progress via its blog and ongoing stakeholder engagement.
Asked by: Peter Dowd (Labour - Bootle)
Question to the Department of Health and Social Care:
To ask the Secretary of State for Health and Social Care, what information the UK National Screening Committee has provided on the (a) format, (b) scale and (c) duration of the upcoming in-service evaluation for spinal muscular atrophy screening in the NHS.
Answered by Will Quince
In June 2023, the UK National Screening Committee (UK NSC) recommended that a modelling study be carried out alongside an in-service evaluation of spinal muscular atrophy (SMA) screening in the National Health Service. Around 70 babies a year are born with SMA in the United Kingdom (around 1 in every 10,000 live births), with approximately 60% of those having type 1 SMA (SMA1).
The new model will help define important issues for the in-service evaluation, while the evaluation will be used to collect data to feed into the model and test its assumptions. This important work will give the UK NSC the evidence it needs to assess how newborn screening for SMA might work safely in the UK.
Work is still in the planning stages therefore timescales are not established yet. The UK NSC will keep ministers informed, and the public up to date on progress via its blog and ongoing stakeholder engagement.
Asked by: Peter Dowd (Labour - Bootle)
Question to the Department of Health and Social Care:
To ask the Secretary of State for Health and Social Care, whether he plans to expedite the introduction of newborn spinal muscular atrophy screenings.
Answered by Will Quince
In June 2023, the UK National Screening Committee (UK NSC) recommended that a modelling study be carried out alongside an in-service evaluation of spinal muscular atrophy (SMA) screening in the National Health Service. Around 70 babies a year are born with SMA in the United Kingdom (around 1 in every 10,000 live births), with approximately 60% of those having type 1 SMA (SMA1).
The new model will help define important issues for the in-service evaluation, while the evaluation will be used to collect data to feed into the model and test its assumptions. This important work will give the UK NSC the evidence it needs to assess how newborn screening for SMA might work safely in the UK.
Work is still in the planning stages therefore timescales are not established yet. The UK NSC will keep ministers informed, and the public up to date on progress via its blog and ongoing stakeholder engagement.
Asked by: Peter Dowd (Labour - Bootle)
Question to the Department of Health and Social Care:
To ask the Secretary of State for Health and Social Care, whether he plans to meet with the UK National Screening Committee to discuss the timescale for implementing an in-service evaluation for spinal muscular atrophy screening in the NHS.
Answered by Will Quince
In June 2023, the UK National Screening Committee (UK NSC) recommended that a modelling study be carried out alongside an in-service evaluation of spinal muscular atrophy (SMA) screening in the National Health Service. Around 70 babies a year are born with SMA in the United Kingdom (around 1 in every 10,000 live births), with approximately 60% of those having type 1 SMA (SMA1).
The new model will help define important issues for the in-service evaluation, while the evaluation will be used to collect data to feed into the model and test its assumptions. This important work will give the UK NSC the evidence it needs to assess how newborn screening for SMA might work safely in the UK.
Work is still in the planning stages therefore timescales are not established yet. The UK NSC will keep ministers informed, and the public up to date on progress via its blog and ongoing stakeholder engagement.
Asked by: Peter Dowd (Labour - Bootle)
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 5 July 2023 to Question 191810 on Ultrasonics, if his Department will make an assessment of the potential impact of increasing access to MR-Guided Focused Ultrasound treatments on (a) the ability of patients to return to work and (b) the economy.
Answered by Helen Whately - Minister of State (Department of Health and Social Care)
We have no plans to make an assessment.