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 Integrated Care Boards will be required to designate a named lead for the implementation of statutory guidance issued under the Down Syndrome Act 2022.
Answered by Zubir Ahmed - Parliamentary Under-Secretary (Department of Health and Social Care)
Under the Down Syndrome Act 2022, my Rt Hon. Friend, the Secretary of State for Health and Social Care, is required to give guidance to relevant authorities in health, social care, education, and housing services on what they should be doing to meet the needs of people with Down syndrome.
Relevant authorities, as defined in the schedule to the act, have a duty to have due regard to the final guidance once it is published. The act does not create any new functions beyond this duty. Rather, it brings together existing statutory requirements and guidance that relevant authorities must and/or should already be complying with to support people with Down syndrome and people with other conditions and/or a learning disability who have similar needs.
NHS England published statutory guidance on 9 May 2023 which says that every integrated care board (ICB) should identify a member of its board to lead on supporting the ICB to perform its functions effectively in the interest of people with Down syndrome. The statutory guidance sets out NHS England’s expectations about fulfilling executive lead functions and outlines the responsibilities of these roles in more detail, and is available at the following link:
https://www.england.nhs.uk/publication/executive-lead-roles-within-integrated-care-boards/
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 mechanisms will be used to monitor compliance by public bodies with statutory guidance issued under the Down Syndrome Act 2022.
Answered by Zubir Ahmed - Parliamentary Under-Secretary (Department of Health and Social Care)
Under the Down Syndrome Act 2022, my Rt Hon. Friend, the Secretary of State for Health and Social Care, is required to give guidance to relevant authorities in health, social care, education, and housing services on what they should be doing to meet the needs of people with Down syndrome.
Relevant authorities, as defined in the schedule to the act, have a duty to have due regard to the final guidance once it is published. The act does not create any new functions beyond this duty. Rather, it brings together existing statutory requirements and guidance that relevant authorities must and/or should already be complying with to support people with Down syndrome and people with other conditions and/or a learning disability who have similar needs.
NHS England published statutory guidance on 9 May 2023 which says that every integrated care board (ICB) should identify a member of its board to lead on supporting the ICB to perform its functions effectively in the interest of people with Down syndrome. The statutory guidance sets out NHS England’s expectations about fulfilling executive lead functions and outlines the responsibilities of these roles in more detail, and is available at the following link:
https://www.england.nhs.uk/publication/executive-lead-roles-within-integrated-care-boards/
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 role of community-based diagnostic services and AI-supported electrocardiogram interpretation in the early detection of inherited cardiac conditions in young people.
Answered by Karin Smyth - Minister of State (Department of Health and Social Care)
A number of diagnostics are used to detect inherited cardiac conditions in young people at an early stage, including electrocardiograms (ECGs) and imaging. National Health Service artificial intelligence-supported ECG interpretation helps detect inherited cardiac conditions in young people by identifying subtle, subclinical patterns in heart electrical activity that are invisible to the human eye.
12-lead ECGs and ambulatory ECG monitoring are core cardiac science diagnostic tests for any community diagnostic centre (CDC). Currently, electrocardiography services are provided in 108 of the 170 CDCs across England, helping to expand community based diagnostic provision for all patients, including young people.
NHS England’s Physiological Sciences strategic framework clearly positions AI as a key enabler of community-based diagnostics, supporting faster and more standardised analysis of ECG tests. We are actively working to expand access to AI enabled ECG investigations.
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 trends in the level of diagnostic overshadowing for people with Down syndrome; and whether that issue will be included in the final statutory guidance under the Down Syndrome Act 2022.
Answered by Zubir Ahmed - Parliamentary Under-Secretary (Department of Health and Social Care)
In 2023, NHS England produced a guide for frontline staff to support people with learning disabilities which asks staff to be aware of diagnostic overshadowing. NHS England does not hold data on the extent of diagnostic overshadowing for people with Down syndrome, nor is the data held centrally. This guide is available at the following link:
Through the implementation of the Down Syndrome Act 2022, the Government is striving to improve life outcomes for people with Down syndrome, raise awareness and understanding of their needs, and break down barriers to opportunity that they, and other disabled people, face.
Under the Down Syndrome Act, the Secretary of State for Health and Social Care is required to give guidance to relevant authorities in health, social care, education and housing services on what they should be doing to support the needs of people with Down syndrome. The draft guidance, which was published for public consultation on 5 November 2025, acknowledges that many people with Down syndrome may experience diagnostic overshadowing and recognises its impact on the care and treatment that people receive.
The Department welcomes specific suggestions of other topics for inclusion or additional detail on those already covered through the consultation. Once the consultation has closed, the Government will consider all consultation responses to inform the final guidance to be published.
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 the final statutory guidance issued under the Down Syndrome Act 2022 will include Down syndrome-specific training for health, education and social care professionals.
Answered by Zubir Ahmed - Parliamentary Under-Secretary (Department of Health and Social Care)
I refer the Rt Hon. Member to the answer I gave to the Hon. Member for Maidenhead on 5 January 2026 to Question 103131.
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 steps his Department has taken to ensure that references to learning disability and support needs in the draft statutory guidance under the Down Syndrome Act 2022 reflect the needs profile of people with Down syndrome.
Answered by Zubir Ahmed - Parliamentary Under-Secretary (Department of Health and Social Care)
Under the Down Syndrome Act, my Rt Hon. Friend, the Secretary of State for Health and Social Care, is required to give statutory guidance to relevant authorities in health, social care, education, and housing services on what they should be doing to meet the needs of people with Down syndrome. The consultation on the draft guidance was launched on 5 November 2025 and will remain open until 30 March 2026.
The draft guidance has been informed by over 1,500 responses to the call for evidence in 2022. A summary of these findings was published on 5 November 2025. In developing the draft guidance, the Department for Health and Social Care engaged with NHS England and all relevant Government departments, including the Department for Education. Officials also engaged with people with Down syndrome and those with other conditions and/or a learning disability who have similar needs, and their parents and carers, as well as experts and practitioners from multiple sectors, to ensure the guidance is robust, evidence-based and fit for purpose.
Based on what we were told during the call for evidence and subsequent engagement, a needs profile paper has also been developed which sets out the specific needs of people with Down syndrome. The needs paper, which has been published alongside the consultation, was used to inform the development of the draft guidance.
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 potential impact of electrocardiogram screening for young people engaged in organised sport, including the clinical effectiveness and cost effectiveness of such screening.
Answered by Stephen Kinnock - Minister of State (Department of Health and Social Care)
The Government is guided by the independent scientific advice of the UK National Screening Committee (UK NSC). It is only where the offer to screen provides more good than harm that a screening programme is recommended. The UK NSC makes its recommendations based on internationally recognised criteria and a rigorous evidence review and consultation process.
Every sudden cardiac death of a young person is a tragedy. The UK National Screening Committee (UK NSC) is currently re-examining the evidence for sudden cardiac death screening in young people, including those involved in organised sports, and will open a public consultation on this in the spring.
The Government welcome the UK NSC’s robust and rigorous approach to evaluating the benefits and harms of screening, as it is vital that screening policy is based on scientific evidence.
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, if he will set out the timetable for the UK National Screening Committee’s review of screening for sudden cardiac death in young people; and whether the large-scale screening audit data due for publication in February 2026 will be considered as part of that review.
Answered by Stephen Kinnock - Minister of State (Department of Health and Social Care)
The UK National Screening Committee (UK NSC) is currently re-examining the evidence for sudden cardiac death screening in young people and will open a public consultation on this in the spring.
The UK NSC secretariat is not aware of the audit referred to in this question. However, as the literature review needs to be completed and analysed before a consultation is published, any evidence published in February of this year will not be part of the UK NSC consultation.
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, with reference to the National Cancer Plan’s commitment to provide £70 million more in local authority Stop Smoking Services, whether that funding will be provided on an annual basis until 2030.
Answered by Ashley Dalton
To help people quit, the Government has invested an additional £70 million in both 2024/25 and 2025/26 to support local authority led Stop Smoking Services in England. We are already seeing the impact this has made, as the first year of additional funding, 2024/25, resulted in a 23% increase in the number of people supported to quit compared to the previous year, 2023/24.
From April, we are investing an additional £260 million over three years, from 2026/27 to 2028/29, in Stop Smoking Services within the Public Health Grant, meaning at least £150 million per year will be ringfenced for these services. This will give local authorities greater certainty on their funding for the next three years.
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 implications for his policies of responses to the consultation on the draft statutory guidance under the Down Syndrome Act 2022.
Answered by Zubir Ahmed - Parliamentary Under-Secretary (Department of Health and Social Care)
Through the implementation of the Down Syndrome Act 2022, the Government is striving to improve life outcomes for people with Down syndrome, raise awareness and understanding of their needs, and break down barriers to opportunity that they, and other disabled people, face.
The Down Syndrome Act 2022 requires my Rt Hon. Friend, the Secretary of State for Health and Social Care, to give guidance to relevant authorities in health, social care, education, and housing services on the actions they should be taking to support the needs of people with Down syndrome.
The public consultation on the draft guidance was launched on 5 November 2025 and will remain open until 30 March 2026. Once the consultation has closed, the Government will consider all consultation responses to inform the final guidance to be published.