Guidance

UK NSC Fetal, Maternal and Child Health Group terms of reference

Published 17 January 2024

1. Aims

The Fetal, Maternal and Child Health (FMCH) group aims to:

• guide, scrutinise and oversee the development of evidence products relating to antenatal and newborn screening from start to finish
• provide input, interpretation and clarification on the evidence, drawing on relevant expertise including clinical, user, academic, economic and ethical perspectives
• explore new proposals to implement new population, targeted and stratified screening programmes not provided by the NHS within each of the 4 nations
• discuss and assess innovative and emerging technologies and their proven effectiveness for use within an NHS screening programme
• examine proposals to continue, modify or withdraw existing screening programmes
• consider and explore wider innovation, horizon scanning and stakeholder engagement
• appraise and monitor in-service evaluations (ISEs) to test potential new screening programmes or changes to existing ones

The group will work in a clear, transparent, timely and consistent manner. It will develop advice for the UK National Screening Committee (UK NSC) to consider and make recommendations based on the best scientific evidence and expert input available.

2. Accountability and reporting arrangements

The FMCH group is an expert group reporting to the UK NSC. It is one of 3 groups that support and provide expert input to the committee.

The FMCH group will work according to the UK NSC workplan to review conditions as agreed by the Chief Medical Officers.

The FMCH group is also the responsible body that oversees the running of ISEs in antenatal and newborn screening and keeps abreast of issues before presenting them to the UK NSC.

The Blood Spot Task Group, which aims to identify practical and innovative approaches to evidence development, facilitation of research and evaluation of evidence in newborn blood spot (NBS) screening, reports to the FMCH.

The FMCH chair and the UK NSC secretariat can escalate issues to the UK NSC and vice versa.

2.1 Quorum arrangements

There are no formal quorum arrangements for the group. However, to ensure transparency and ownership, decisions made at meetings attended by less than 50% of members will be cross-checked with absent members before agreement and actioning.

3. Membership

Individual members are appointed based on their personal expertise, not as representatives of a particular profession, employer or interest group, and have a duty to act in the public interest. Members may also sit on different stakeholder groups. Members should make it clear if they are declaring an organisation’s view rather than a personal view.

FMCH members are expected to adhere to the UK NSC code of practice and follow the Seven Principles of Public Life set out by the Committee on Standards in Public Life. The suggested core membership expertise is listed in sections 4 and 5 below. Conflicts of interest will be managed as per the UK NSC code of practice.

4.   Terms of appointment

4.1 Chair

The chair of the FMCH is formally appointed through recruitment by the Department of Health and Social Care (DHSC), which hosts the UK NSC.

The chair is accountable to the UK NSC for carrying out their duties and for their performance.

The chair will be a formal member of the UK NSC and will convey FMCH’s recommendations to the UK NSC. A vice-chair is appointed within the group.

The chair is appointed for a term of 3 years, with a review of appointment at the end of each term. A maximum of 3 terms may be served.

Appointment to the FMCH group is on a voluntary basis.

4.2   Core members

Members are appointed by an open and transparent expressions of interest recruitment process led by the UK NSC secretariat.

Core members serve for a minimum period of 3 years. Members may serve on the group for a maximum of 3 terms (each of 3 years). The chairs of the UK NSC and the FMCH have the discretion to extend the maximum number of terms.

The UK NSC secretariat will review the core membership of the FMCH at least once every 3 years with a view to maintaining continuity.

4.3 Deputy arrangements

Members are appointed to the FMCH group based on their personal expertise, and continuity of that expertise is important. Arrangements to send deputies must therefore be avoided.

4.4   Termination of membership

Members wishing to resign should give 3 months’ notice in writing to the UK NSC secretariat and the FMCH chair. If a member is unable to fulfil their commitments for any reason, they should inform the UK NSC secretariat at the earliest opportunity. Membership will be terminated if a member fails to attend 3 consecutive meetings. Membership may be suspended for a period of up to 12 months for the reason of long-term absence from work.

4.5   Other attendees at expert group meetings

Designated representatives (‘officials’) may routinely attend the FMCH meetings as observers to keep abreast of developments.

Such attendees are invited to actively develop, support and advise on work under FMCH review to enable and ensure national alignment across the UK. Their role is also to provide additional information to the FMCH group. Officials must at all times respect and uphold the independence of the committee in formulating its advice to the UK NSC.

Attendees have access to FMCH papers and can contribute to the discussion in FMCH meetings.

At the chair’s discretion, technical experts may be invited to meetings if further input is required to help support the FMCH group in its understanding of the complexity of a matter in order to reach a decision and subsequently advise the UK NSC. A technical expert will have specific knowledge and first-hand experience to be able to advise and answer queries on topics from an impartial perspective. An invitation for a technical expert will not be necessary for all conditions but for topics where the chair feels it is required. Technical experts must respect and uphold the independence of the committee when formulating its advice.

5. Members’ responsibilities

Members are responsible for:

• preparing for meetings by reading papers in advance and forwarding any other business (AOB) agenda items to the secretariat ahead of each meeting
• providing expertise and contributions to support relevant initiatives (at and outside of meetings)
• bringing relevant issues to the attention of the group and the UK NSC secretariat
• ensuring discussions are collaborative, constructive and clear
• contributing to discussions on the development of evidence products
• championing, where required, the development of an evidence product between the secretariat, FMCH group and external reviewers based on their expertise
• fulfilling assigned actions by agreed deadlines
• responding to communications from the secretariat in a timely manner

Additionally, the chair is responsible for:

• reporting to the UK NSC on the work of the FMCH group
• providing input into meeting agendas
• reviewing and commenting on minutes
• working with the secretariat to develop and progress work within the FMCH group’s remit

5.1 Work outside formal meetings

Because of their specific expertise, some members of the group may be asked to take part in and/or have an advisory role in specific projects which could involve participation in extra meetings.

5.2   Frequency and management of meetings

Meetings can be held virtually or face-to-face. The FMCH group is required to meet 3 times a year ahead of UK NSC scheduled meetings. It is proposed that the January and September meetings are held virtually with the May meeting being held face to face. Dial-in facilities will be provided at all meetings. All FMCH meetings are closed meetings (not open to the public). Members are expected to attend all meetings in person if face-to-face, or online if a virtual meeting. If a member cannot attend a face-to-face meeting in person, a digital communication option will be made available. Meetings’ attendance and contribution will be subject to annual appraisal by the FMCH chair.

The secretariat will produce a summary of the proceedings. Meetings will be recorded for minuting purposes only, and the recording will be deleted after the minutes are signed off by the chair.

Draft minutes will be shared for chair’s review, ideally within 20 working days of the meeting. After completion of this review, minutes will be shared with members as ‘draft pending ratification at the next FMCH meeting’.

5.3   Handling of meeting papers and development of advice

Unless agreed with the chair and the UK NSC secretariat, papers and other documents should be considered as policy in development and therefore confidential. They should not be shared outside the group.

Meeting papers circulated to the group are classified as ‘closed’ papers where advice is under development and matters under discussion are confidential or of a sensitive nature. All meeting papers must be treated as confidential and not shared more widely.

The FMCH group complies with the Freedom of Information Act (FOIA) 2000, noting however that certain information may be exempt from disclosure under FOIA 2000.

6.   Secretariat responsibilities

The secretariat is responsible for:

• arranging meeting times, locations (if appropriate) and facilities
• maintaining an up-to-date central list of members and a register of any relevant interests
• circulating agendas and supporting materials to members a minimum of 7 days (including 5 working days) in advance of meetings
• accurately capturing and tracking actions from the group
• drafting and finalising summaries of minutes with the chair’s input
• managing the group’s documents as per DHSC information management policy
• monitoring developments on ongoing and new evidence reviews
• maintaining close links between the Research and Methodology Group (RMG) and the UK NSC’s horizon scanning function to keep the FMCH up to date with national and international developments in screening and to discuss and escalate areas of further work
• overseeing the membership and recruitment campaigns to ensure the group has the right expertise and skillset to fulfil the group’s remit

7.   Declaration of interests

Members should declare conflicts of interests annually. Conflicts of interest should also be made known to the chair at the start of each meeting.

When a member has a conflict of interest for an agenda item they will be required to remove themselves from the meeting while the subject is being discussed.

It is the members’ responsibility to promptly notify the chair and secretariat of any changes to their declaration of interests during their service on the group.

The secretariat will maintain and review a register of members’ relevant interests annually. Information may be disclosed to third parties in accordance with the FOIA 2000 and will be published in registers or minutes that the UK NSC holds, if required.

See UK NSC declarations of interest principles and guidance.

8. Expenses

FMCH members are not remunerated for their work on the group. They can claim expenses in accordance with the DHSC rules for travel and subsistence. FMCH members will not gain financial benefit from their membership.

9. Communications with the media

In line with the UK NSC’s Code of Practice, members of the FMCH should not speak to the media as a member or voice of the FMCH. All enquiries from the media should be directed to the DHSC press office so that the UK NSC secretariat can respond on behalf of the FMCH and the UK NSC.