This meeting was held on 21 November 2024 in Victoria Street, London and via Microsoft Teams.

Attendees  

Members 

• Professor Sir Mike Richards – Chair
• Dr Graham Shortland – Consultant Paediatrician (Vice-Chair)
• Professor Natalie Armstrong – Implementation Scientist
• Eleanor Cozens – Patient and Public Voice (PPV)
• Greg Fell – Public Health Expert
• Dr Ros Given-Wilson – Chair, Adult Reference Group (ARG)
• Dr Sharon Hillier – Chair, Fetal, Maternal and Child Health Group (FMCH)
• Professor Chris Hyde – Public Health Specialist
• Professor Anneke Lucassen – Clinical Geneticist
• Dr Bethany Shinkins – Test Expert
• Professor Anne-Marie Slowther – Clinical Ethicist
• Professor Sian Taylor-Phillips – Chair, Research and Methodology Group (RMG)

Observers 

• Martin Allaby – Consultant in Public Health, National Institute for Health and Care Excellence (NICE)
• Nicola Brink – Public Health, States of Guernsey
• Tom Callender – Public Health Registrar
• Lisa Douet – National Institute for Health and Care Research
• David Elliman – Clinical lead for NHS Newborn Blood Spot Screening Programme
• Roberta James – Scottish Intercollegiate Guidelines Network (SIGN) Council, Scottish Government (attended part of the meeting)
• Christopher Johnes – Public Health Registrar
• Elizabeth Luckett – Senior Screening & Immunisation Manager NHS England (NHSE)
• Diane Matthews – Public Health, States of Guernsey
• Prof Zosia Miedzybrodzka – Clinical Lead, Scottish Genomics Network
• Cathy Morgan – Director of Secondary Prevention, Department of Health and Social Care (DHSC)
• Pranshu Mundada – Research Associate Health Economics, Warwick University
• Steve Powis – National Medical Director, NHS England (attended part of the meeting)
• Karla Hemming – Member, Research and Methodology Group
• Bilal Rashid – Economist, Health Protection Analysis, DHSC
• Emily Scott – Clinical Research Fellow, East of England Cancer Alliance
• Susan Spillane – Assistant Director, Health Information and Quality Authority (HIQA) Ireland
• Angela Timoney – SIGN Council, Scottish Government

UK Health Department officials 

• Carol Beattie – Department of Health, Northern Ireland
• Nimisha De Souza – DHSC
• Heather Payne – Maternal and Child Health, Welsh Government
• Tasmin Sommerfield – National Screening Oversight, NHS Scotland
• Helen Tutt – Screening, Welsh Government 

Secretariat    

• Andy De Souza – Senior Evidence Review Manager, Targeted Screening
• Rebecca Dliwayo – Senior Evidence Review Manager, Horizon Scanning
• Jo Harcombe – Head of UK NSC Information and Engagement Management
• Mike Harris – Head of UK NSC Transparency and Public Understanding
• Peggie Huangfu – Senior Evidence Review Manager, Targeted Screening
• Ailsa Johnson – Secretariat Network Convenor
• Silvia Lombardo – Modelling Lead
• Anne Mackie – Director of Programmes, UK National Screening Committee
• John Marshall – Evidence Lead
• Zeenat Mauthoor – Secretariat Expert Committee and Policy Liaison Manager
• Anne Stevenson – National Lead for Screening Feasibility, Evaluation and Development
• Omaer Syed – Senior Evidence Review Manager
• David Thompson – Senior Evidence Review Manager
• Katy Town – Horizon Scanning Lead
• Cristina Visintin – Research Lead

Invited

• Jim Bonham – Laboratory Adviser to the Newborn Screening Blood Spot Programme

• Jonothan Earnshaw – Consultant Vascular Surgeon

• Philip Gardner – UK NSC Lead for Screening Data, IT, Standards and Effectiveness

• Sophie Mitra – Screening Data Analyst, UK NSC

• Harriet Strachan – Screening Data Analyst, UK NSC

Apologies from observers / officials

• Ray Smith – DHSC

Welcome and apologies

The chair, Prof Mike Richards, welcomed all to the meeting.

The chair reminded attendees of the confidential nature of the discussions, presentations and papers for the meeting and reiterated that these should not be communicated outside the meeting until their publication on the UK NSC website. 

The meeting was attended by all 12 members and quorate.

Call for any new declarations of interests

No new declarations of interest relevant to the meeting were raised.

Minutes of the last meeting

The committee approved the minutes from the 21 March 2024 meeting as a true and accurate record.

Action 1 from the March meeting for the UK NSC to formally write to the Royal College of Obstetricians and Gynaecologists (RCOG) to recommend the updating of the vasa praevia guidelines has been completed.

The RCOG has agreed to update its guidance to include vasa praevia, addressing the gap in guidance for obstetricians and women.

Update on Actions from the November 2023 meeting:

• AAA effectiveness report to be brought to a future UK NSC meeting once completed (expected in June or November 2024) - Action closed, topic on the agenda for discussion
• Tyrosinaemia to be added to the June UK NSC meeting for provisional report to be presented to the committee - Action closed, topic on the agenda for discussion

Ongoing open actions were noted as follows:

• June 2022 – UK NSC to look into agreeing cost effectiveness thresholds and guidance as part of wider work to develop the new committee processes - Action closed, topic on the agenda for discussion
• November 2022 – Report on international consensus on informed choice to be brought to a future UK NSC meeting once work has been completed - Action closed, topic on the agenda for discussion
• November 2022 – Secretariat to add Recommendation 4 on the National Institute for Health Care Excellence (NICE) / Scottish Intercollegiate Guidelines Network (SIGN) to the UK NSC March 2023 agenda - completed
• November 2022 – Paper on feasibility, addressing CMOs’ recommendation 5 to be brought to the UK NSC meeting in March 2023 – completed

Matters arising – Director’s update

A verbal update was provided by Professor Anne Mackie on the following items:

Cost-effectiveness thresholds

Discussions are ongoing to establish a transparent approach to cost-effectiveness thresholds. Engagement is under way with DHSC economists and across advisory committees to plan and develop a methods guide for those undertaking economic analysis for the committee. Further discussions will consider whether the UK NSC should continue to use NICE guidelines or adopt the Green Book process.

Action 1: Bethany Shinkins to be invited to future discussions concerning the NICE guidelines and Green Book process.

Annual Call for topics 2024

The 2024 annual call received 26 submissions.  Plans and processes are in place for an expert evaluation to determine the next steps.

Prostate cancer update

Following Sir Chris Hoy’s announcement that he has been sadly diagnosed with terminal cancer, the UK NSC has received increased calls to look at prostate cancer screening.

The UK NSC does not currently recommend screening for prostate cancer while the Prostate Cancer Risk Management Programme (PCRMP) provides guidance for GPs on how to counsel asymptomatic men on the potential benefits and harms of PSA testing, emphasizing informed consent and choice for patients. 

The UK NSC commissioned a modelling study following submissions from the previous annual call to look at strategies to offer prostate cancer screening. Preliminary data is being reviewed, but complete findings will not be available until next year.

It was noted that the BBC Radio 4 ‘Inside Health’ programme featuring Sir Chris Hoy received positive feedback for its well informed and nuanced discussion on prostate cancer and screening.

Prostate cancer guidance and potential screening are high priorities but require robust evidence and careful consideration of assumptions. The UK NSC is actively engaging in discussions and reviewing emerging data.

Severe combined immune deficiency (SCID)

The in-service evaluation (ISE) for SCID will be presented at an upcoming Fetal Maternal Child Health (FMCH) group meeting, followed by a consultation. It is hoped that the final report will be ready for discussion at a UK NSC meeting next year.

Spinal muscular atrophy (SMA)

An ISE is being designed for SMA with NHSE and the National Institute for Health and Care Research’s [NIHR’s] Health Technology Assessment (HTA) Programme. Discussions with modellers are scheduled for week commencing 25 November.

It was noted that 2 of the 3 SMA drugs are currently under NICE Managed Access Agreements (MAAs). The MAA process has been extended and this may delay progress.

HPV Self-Sampling Consultation

A consultation opens week commencing 25 November on a recommendation to offer the option of HPV self-sampling to under-screened women (those women who have never been screened or have delayed screening for over 6 months).

Abdominal Aortic Aneurysm (AAA) Effectiveness Report

The UK NSC welcomed Jonothan Earnshaw, Consultant Vascular Surgeon, to discuss the findings of the AAA effectiveness work.

The effectiveness report examines whether the AAA screening programme was effective in its first decade (2013 to 2022), during which time 3.45 million men were invited for screening (78-85% attendance rate).

The AAA screening programme has led to a significant reduction in the number of men treated for ruptured aneurysms, with a 50% reduction in hospital treatments.  The programme remains cost-effective, preventing around 400 ruptures and 270 aneurysm-related deaths annually.

The committee reflected on smoking rates and targeted screening. Members discussed the lower uptake in socially deprived areas and the need to improve engagement with lower socioeconomic groups, and to focus on the 20% of men who do not attend screening. 

The UK NSC noted the findings and excellent quality of the report and thanked Jonothan and the team.  The committee asked for the report to be presented and discussed with the Adult Reference Group with a view to future effectiveness reporting for other screening programmes.

Action 2: The AAA Report to be presented at the Adult Reference Group meeting with a view to future effectiveness reporting for other screening programmes.

Tyrosinaemia Type 1

The UK NSC welcomed Jim Bonham, Laboratory Adviser to the Newborn Screening Blood Spot Programme, to update on the progress of implementing screening for Tyrosinaemia Type 1 (HT1).

HT1 prevents the body breaking down a substance called tyrosine found in food.  This is a rare condition (less than 1 in 100,000 births in the UK) which, if left untreated, can cause hepatic failure, renal damage, and long-term risk of liver cancer.

The recommendation to screen for this condition was made in 2023 and endorsed by Ministers in 2024 - as outlined in the UK NSC blog article ‘English government endorses recommendation to screen newborns for tyrosinaemia’. 

Prof Bonham’s report highlighted the complexity of implementing a new screening programme and the importance of standardisation across testing methods and regions.

To establish the framework for implementation, 2 working groups were set up.  The clinical group focused on pathway design, treatment guidelines and referral, competencies and training.  The laboratory group looked at quality control requirements and assay development and validation.

It was noted that measuring succinylacetone had been challenging compared with other metabolic disorders, and therefore requires additional extraction and derivatization steps.

Commercial versus laboratory-developed tests were reviewed and there was greater variation in results from laboratory-developed tests.  Due to the complexity of the assay and the methodological approaches available, the adoption of a commercial assay provided the most viable and robust alternative for inclusion in screening for HT1 in the UK.

Procurement options for commercial assays are being discussed. The cut-off value for a screen positive result to be used to inform parents, once an approach to methodology has been confirmed.

Communications and training for midwives and others in the screening pathway​ were discussed. It was noted that the patient facing information must align with the principle of informed choice.

The target start date for screening for HT1 in England is July 2025. 

The UK NSC noted the findings and quality of the implementation report and thanked Jim and the team. 

Stakeholder update

Mike Harris and Jo Harcombe, UK NSC Secretariat, gave a presentation on the UK NSC’s recent stakeholder engagement activity and analytics data from the UK NSC’s online platforms, including the recommendations web tool and the UK NSC blog.

The update highlighted a recent increase in interest in UK NSC content related to prostate cancer screening.

Informed choice principles

Jo Harcombe, UK NSC Secretariat, presented the updated UK NSC informed choice principles, which emphasise clear, concise, and accessible information, and the importance of evidence-based, timely, and respectful communication.

The committee approved the updated guidance, subject to a minor revision, with the understanding that it would be regularly reviewed as needed.

Action 3: The UK NSC to publish the updated guidance on informed choice

Dental disease recommendation

Peggie Huangfu, UK NSC Secretariat, presented the evidence for screening for dental disease in children.

The UK NSC last reviewed screening for dental disease in 2019 and previously in 2013. Both reviews made a recommendation to not offer screening for dental disease.  

Since the last UK NSC review (2019), in November 2023, the US Preventive Services Task Force (USPSTF) published a systematic review on oral health screening in children and adolescents, concluding that there is insufficient evidence to support routine screening for dental disease in this population. Following an internal evaluation of the quality of this review, and an updated search for new evidence published since 2023, it was agreed at the Fetal Maternal Child Health (FMCH) meeting in September 2024 that this work was sufficient to provide the evidence needed for the UK NSC to make its recommendation rather than commissioning a new evidence map.

The outcome of the review identified only one viable study to be included which was in relation to test accuracy on dental screening among children in a primary care setting. Based on the limited evidence and in keeping with the USPSTF systematic review it was proposed that the UK NSC moves this topic for a truncated public consultation of 6 weeks with a view to archive this topic. Following the public consultation only 1 comment was received, which focused on the prevention of dental disease in school aged children, suggesting a one-time dental assessment in School Year 1, along with annual educational talks on dental hygiene for both children and parents. While the UK NSC evidence team agrees that prevention of dental disease is very important for school children, it falls outside the scope of the UK NSC’s responsibilities. 

Members raised the issue of screening’s potential to reduce healthcare inequities and the need to consider targeted approaches. There is a tension between the lack of evidence for screening effectiveness and the desire to address dental health inequities, particularly in deprived communities. 

The committee agreed with the recommendation that a population screening programme should not be introduced. However, before archiving the recommendation, members supported a suggestion to first liaise with experts from the DHSC dental public health team.

Post meeting note: The UK NSC secretariat team met with the relevant DHSC policy team to discuss the findings of the UK NSC’s internal review. It was agreed that the evidence base on which to introduce a population screening programme had not been met and that this topic should be removed from its list of regular updates.

Oral health inequalities remain a significant public health problem in the UK. However, there is no evidence to suggest that the introduction of school-based screening for dental diseases would reduce these inequalities.

DHSC supports a preventative approach to tackling dental caries in children. Delivering better oral health: an evidence-based toolkit for prevention sets out the full range of interventions for dental caries and other oral health issues, as well as the evidence base for interventions. This identifies how to prevent the main oral diseases. A range of other resources to improve children’s oral health are published on GOV.UK.

Fetal Maternal Child Health (FMCH) Group

Dr Sharon Hillier, Chair of the FMCH group, updated on the key discussions from the September 2024 meeting.  The main topics reviewed included the complexity of whole genome sequencing (WGS), SMA modelling, and the implementation updates on HT1 screening.

The positive impact from new members to the FMCH was noted and demonstrated the group’s engagement with complex screening issues and evaluation methodologies across various maternal and child health contexts.

Adult Refence Group (ARG) update

The ARG chair, Dr Ros Given-Wilson, provided an update from the September ARG meeting, which included discussions on multi-cancer early detection (MCED) tests, incidental findings, and the use of HPV self-sampling for under-screened women. The ARG recommended moving forward with the consultation on HPV self-sampling.

Post meeting note: On 4 December 2024, the UK National Screening Committee (UK NSC) opened a consultation on whether to offer an HPV self-sampling option to under-screened people in the cervical screening programme: UK NSC consults on offering HPV self-sampling option to under-screened people in cervical screening programme – UK National Screening Committee

The consultation closes on 26 February 2025.

Research and Methodology Group (RMG) update

Dr Sian Taylor-Philips, Chair of the RMG, gave a verbal update on the confidential work from the RMG meeting held at the beginning of November. Key topics discussed included research on lung cancer screening and the development of risk models in cancer screening, and the evaluation of whole genome sequencing in newborns.

Any other business

No additional items were raised.