Transparency data

UK NSC minutes March 2025

Updated 23 June 2025

These minutes are draft.

This meeting was held on 27 March 2025 in Victoria Street, London, and via Microsoft Teams.

Attendees  

Members 

• Professor Sir Mike Richards – Chair 
• Dr Graham Shortland – Consultant Paediatrician (Vice-Chair)  
• 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)
• Sofia Araujo-Betancor – Evidence Synthesis Programme, Southampton National Institute for Health and Care Research (NIHR) Evaluation, Trials and Studies Coordinating Centre (NETSCC)
• Harrison Carter – Screening Director, NHS England
• Kim Cartledge – NIHR Evidence Synthesis Group 
• Katy Cooper – Sheffield Evidence Network for Screening Synthesis (SENSS)
• Lisa Douet – NIHR
• David Elliman – Clinical lead for NHS Newborn Blood Spot Screening Programme 
• Elizabeth Luckett – Senior Screening and Immunisation Manager, NHS England
• Diane Matthews – Public Health, States of Guernsey 
• Hayley McCarthy – Public Health Screening and Immunisation Manager, NHS England
• Zosia Miedzybrodzka – Clinical Lead, Scottish Genomics Network 
• Alexandra Lawrence – Consultant Gynaecological Oncologist, Royal London Hospital
• Susan Spillane – Assistant Director, Health Information and Quality Authority (HIQA) Ireland
• Lesley Stewart – Director, NIHR Evidence Synthesis Programme
• Chris Stinton – Senior Research Fellow, University of Warwick
• Harriet Strachan – Screening Data Analyst, UK National Screening Committee (UK NSC)
• Angela Timoney – Scottish Intercollegiate Guidelines Network (SIGN) Council, Scottish Government (attended part of the meeting)
• Penny Whiting – Evidence Synthesis Group, University of Bristol

UK Health Department officials 

• Carol Beattie – Department of Health, Northern Ireland
• Alexander Cruickshank – Scottish Government  
• Laura McGlynn – Scottish Government
• Hayley Pareas – Department of Health and Social Care (DHSC)

• Heather Payne – Maternal and Child Health, Welsh Government  

• Ray Smith – DHSC (attended part of the meeting)

• 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
• Ailsa Johnson – Secretariat Network Convenor
• Silvia Lombardo – Modelling Lead  
• Anne Mackie – Director of Programmes, UK NSC
• John Marshall – Evidence Lead
• Carolina Martinelli – Targeted Screening Lead
• Zeenat Mauthoor – Secretariat Expert Committee and Policy Liaison Manager  
• Omaer Syed – Senior Evidence Review Manager
• David Thompson – Senior Evidence Review Manager
• Katy Town – Horizon Scanning Lead
• Cristina Visintin – Research Lead  

Invited

• Joanne Milne-Toner – NHS Scotland
• Billie Moores – NHS England
• Zara Retallick – Economic Advisor, DHSC
• Stuart Wright – Health Economist, University of Manchester

Apologies from members and observers

• Professor Natalie Armstrong – Implementation Scientist 
• Mike Harris – Head of UK NSC Transparency and Public Understanding
• Roberta James – SIGN Council, Scottish Government
• Steve Powis – National Medical Director, NHS England

Welcome and apologies

The chair, Prof Mike Richards, welcomed all to the meeting, and informed the committee that his re-appointment as chair for a second term had recently been confirmed.

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 11 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 November 2024 meeting as a true and accurate record.

Update on Actions from the November 2024 meeting

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

Action 2: The AAA screening effectiveness report to be presented at the Adult Reference Group (ARG) meeting with a view to future effectiveness reporting for other screening programmes – Completed. To be presented at the ARG’s May meeting.  

Action 3: The UK NSC to publish the updated guidance on informed choice – Completed. Published and can be viewed at: UK NSC informed choice principles  

Matters arising – Director’s update

Prof Anne Mackie provided a verbal update on the following topics:

NHS England and DHSC

The UK NSC acknowledged the recent announcement by Prime Minister Keir Starmer and supported by Secretary of State Wes Streeting that NHS England is to be decommissioned, with the DHSC integrating the work of NHS England. The Committee noted the difficult time ahead at its host organisation and was sympathetic to the secretariat going through this uncertain time. 

Spinal muscular atrophy (SMA) screening

The UK NSC has recommended evaluative work on the implementation of screening for SMA.

The recommendation is to conduct an in-service evaluation (ISE) to learn more about the acceptability of screening, what the screening results will show and the effectiveness of short-term treatments.

The research brief has been developed with NHS England colleagues and the UK NSC secretariat and NIHR is currently waiting for government spending allocations to NHS England and DHSC before being able to proceed. Once funding is confirmed, NIHR will start the research process.

The committee noted the critical Lancet publication Spinal muscular atrophy in the UK: the human toll of slow decisions regarding the UK NSC’s handling of SMA screening. Disappointment was expressed given the extensive stakeholder engagement that has been involved with the SMA proposal. A formal response to the Lancet was submitted on behalf of the UK NSC to highlight the commitment to moving forward as quickly as possible with the evaluation of SMA screening. The UK NSC is awaiting confirmation that its response has been accepted for publication.

Stakeholder activity update

Jo Harcombe, UK NSC Secretariat, presented on the UK NSC’s regular engagement with various charities and organisations, and updated on recent stakeholder engagement activity and analytics data from the UK NSC’s online platforms.

Since the last meeting in November, the UK NSC has collaborated with Cancer Research UK (CRUK) and held a successful online seminar on multi-cancer detection tests (MCDs) that was attended by more than 200 stakeholders. In another engagement activity with CRUK, 2 UK NSC members participated in a webinar led by CRUK on the use of surrogate end points in cancer screening.  

Members of the public and stakeholders can keep up to date with past and future seminars by visiting: UK NSC seminars. 

The committee was also informed of the recent UK NSC stakeholder survey that was now live and due to close on 30 March: see the UK NSC blog post Please respond to UK NSC stakeholder survey. 

The stakeholder update highlighted the breadth of geographical reach with international visits to the recommendation pages increasing. It was noted that the most visited pages on GOV.UK are educational resources explaining what screening is and ethics/informed choice guidelines, with the most popular blog topics recently being human papillomavirus (HPV) validation results and prostate screening.

2024 annual call submissions

The UK NSC held the 2024 annual call for screening proposals from 1 July to 30 September last year. The call is for individuals, the public, and stakeholder groups to submit proposals for new screening programmes or modifications to existing ones. Katy Town and Carolina Martinelli presented information on the 26 submissions received.

Plans and evaluation processes are set up for expert review as well as collaboration and further discussions with external bodies such as NICE and SIGN.

Further discussions with submitters, referrals to other organisations, provision of information about ongoing work and requests for more information are continuing. Proposers will be informed of the outcome of their submissions and whether any evidence work will be commissioned.  

The high level of engagement with the annual call and the collaborative working relationships with NICE, SIGN and NHS England were acknowledged. Ongoing discussions continue to actively address the establishment of clear definitions, criteria and evidence review processes concerning the development of targeted screening.

HPV cervical screening self-sampling for under-screened groups

Carolina Martinelli updated the committee on the proposed recommendation on offering an HPV self-sampling cervical screening option for under-screened groups. It was noted that the term ‘under-screened’ refers to people who never or rarely attend their routine cervical screening appointments.

The previous UK NSC review in 2019 had concluded that further research was required before any self-sampling strategy could be recommended in the NHS Cervical Screening Programme (NHS CSP). Since then, several key pieces of research and pilots had taken place that had led to the current discussion and recent public consultation.

Participation in cervical screening has declined in recent years in the UK. International evidence, summarised in the meeting papers, suggests that HPV self-sampling can be an effective and acceptable way to improve engagement with the programme, especially among under-screened groups. Offering this option in the NHS CSP could improve participation and may reduce health inequalities, and the publication of the YouScreen study provides a reference point for the programme. The aim of the YouScreen study was to assess whether introducing the offer of self-sampling to under-screened groups would increase participation in the NHS CSP. The study started in 2021 and completed in 2024.

The YouScreen study looked at 3 delivery strategies, which were considered in a cost effectiveness analysis for the UK NSC to consider, offering self-sampling as:

1. Opportunistic offer in primary care settings
2. Direct mail-out of kits to homes
3. A combination of both of the above strategies

The YouScreen study found that offering self-sampling to under-screened people within the study area was feasible and an increase in participation was reported within the under-screened group.

All 3 proposed strategies were offered as possible options for considering self-sampling in the NHS CSP as part of the UK NSC’s consultation exercise, which was hosted on the UK NSC website.

The cost effectiveness analysis and implementation issues were debated extensively at the meeting. The following points were discussed:

• The coversheet summarised the key findings of the cost-effectiveness analysis, but the committee found that it did not clearly report on the updates relating to the probabilistic sensitivity analysis (PSA) made during consultation. These updates included higher laboratory test costs for self-sampling and mail-out wastage costs, which raised the incremental cost-effectiveness ratio (ICER), especially for the combined strategy. The committee asked for a clearer explanation of these changes in the coversheet.

[Post meeting note: the coversheet was updated following comments received during the meeting.]

• Members noted that the cost of self-sampling tests was lower than clinician-collected tests, but felt this difference was not clearly explained. The committee asked for more information to confirm that the base case cost estimate was realistic, especially since a sensitivity analysis using higher test costs showed a much less favourable cost-effectiveness result.

• It was noted that while the combined strategy might be more costly than delivering the individual strategies separately, many stakeholders from the public consultation suggested it might be better to proceed with a combined strategy because it addresses a wider range of barriers from an equity perspective. According to the YouScreen study, approximately 60% of under-screened people attend their GP at least once a year. A direct mail-out only approach also might not reach everyone, especially people without fixed addresses.

• A clear options appraisal of delivery strategies to help local decision makers was suggested. Members noted that, in YouScreen, the primary care opportunistic strategy was the most effective option as it had a higher response rate and reached a wider range of people than direct mail-out of kits.

• Members stressed that clear and accessible communications would be essential if a permissive approach was to be agreed.

• They also emphasised the need for thorough effective monitoring of implementation and outcomes, potentially via the NIHR.

• Implementation considerations across the UK nations were discussed.  NHS England representatives confirmed a preference for a consistent service across England, available to everyone at the same time, rather than through a geographically staggered roll out. It was acknowledged that more targeted approaches, especially in primary care, need to be considered and discussed further, along with the possibility of using primary care centres to collect kits and/or offer them during visits. 

• In the event of a UK NSC permissive recommendation, NHS England said it would consider taking an approach it had previously taken when offering self-test kits in the bowel cancer screening programme. This would involve a letter being sent to people in the target group giving them the option of requesting a testing kit to opt into self-sampling. The kit would then be posted out to them. If completed, the test would be processed through one of the current cervical screening programme laboratories. This process would be offered as a choice and integrated into the cervical screening process.

• The representatives of the other UK health departments in Scotland, Wales and Northern Ireland said they would also welcome further detail on how a permissive recommendation could be taken forwards due to the variation in healthcare arrangements across the UK. It was agreed that evaluation of delivery strategies would be essential and reviewing which is the most cost effective option in the longer term would be beneficial.

The UK NSC noted the findings from the review and cost effectiveness evaluation and expressed appreciation for the comments received from the public consultation.

The committee agreed to recommend offering self-sampling for HPV testing to under-screened groups eligible for the NHS CSP in the 4 UK countries, where it is considered a useful approach to improving informed participation in the programme.

This permissive recommendation would be an option provided alongside clinician-collected sampling. Members agreed that the approach to delivering the HPV self-sampling kits should follow the model used in YouScreen, using either an opportunistic offer in primary care, direct mail-out, or a combination of both, depending on the feasibility of implementation. The recommendation endorses the evidence-based delivery strategies used in YouScreen, while emphasising that alternative approaches to self-sampling kit delivery should be supported by robust evidence.

There is still uncertainty as to whether self-sampling is as good as clinician testing for women who already attend screening regularly. The UK NSC is therefore organising further studies to find out whether self-sampling could be offered and used effectively across the whole population.

Fetal Maternal Child Health (FMCH) Group

Dr Sharon Hillier, Chair of the FMCH group, updated on discussions from the January 2025 meeting.  The main topics reviewed included SMA, severe combined immunodeficiency (SCID), the annual call submissions and upcoming evidence reviews.

Adult Reference Group (ARG) update

The ARG chair, Dr Ros Given-Wilson, provided an update from the February meeting, which included discussions on the use of HPV self-sampling in the under-screened (details of which were presented at the UK NSC meeting). The group also discussed the annual call submissions and evidence reviews in development.

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 in February and presentations from researchers. The committee was reminded that the RMG accepts submissions for advice on research proposals and a timetable of submissions and discussions at future meetings are available at UK NSC research and methodology group.

Any Other Business

No additional items raised.