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Family Engagement strategy

Introduction

The terms of reference for the Investigation sets out three core aims, to:

  1. “develop and publish one set of national recommendations to: drive the improvements needed to ensure high-quality and safe maternity and neonatal care across England; reduce inequalities and promote health equity in the delivery of those services; and help bereaved and harmed families to receive justice and accountability in the future

  2. ensure that the lived experiences of women, babies and families, including fathers and non-birthing partners, are fully heard and used to inform the development of the national recommendations

  3. conduct and publish 12 local investigations of maternity and neonatal services in NHS trusts and use these alongside other sources of data and evidence gathered by the Investigation to inform the development of the national recommendations”

Family engagement is essential for the Investigation to deliver these aims. Family engagement will inform the Investigation’s findings, methodology and recommendations by:

  • collecting evidence that will enable the Investigation to understand the experiences of women and families, including fathers and non-birthing partners, and in particular families who have experienced bereavement and harm.
  • providing safe spaces and forums for bereaved and harmed families to share their experiences.
  • ensuring diverse representation of family experiences, particularly those women, fathers and non-birthing partners who are from Black and Asian communities, and other seldom-heard groups and communities experiencing health inequalities.
  • providing feedback on the Investigation’s methodology, to ensure it enables the voice of lived experience to be front and central.

This strategy sets out how we will engage with women and families, including fathers and non-birthing partners, throughout the investigation. Due to the rapid nature of the investigation, we will take a families first approach to engaging with families on key elements of the investigation’s areas of work including consultation on policies framing the investigation. However, given the timeframes, coproduction is not possible.

The investigation is not conducting reviews of individual cases as the investigation has been commissioned to look at systemic issues and make one set of national recommendations. The investigation is also not making findings of civil or criminal liability. 

Principles for family engagement

1. ‘Families First’

‘Families First’ originated as a key principle of the Hillsborough Independent Panel, and has been adopted in several subsequent investigations, including maternity investigations.

The investigation will adopt a Families First approach. This means that the investigation will:

  • Undertake to keep families at the heart of the investigation, informing them and consulting with them: this means that families have a voice that will be heard, but not a veto. This recognises that it may not always be possible to reflect everyone’s views in decisions made.
  • Commit to transparency: any developments will be communicated as openly and fully as soon as practicable. Commit to sharing findings and recommendations with families first: this means sharing the investigation’s findings and recommendations with families before other stakeholders. Emerging evidence and findings cannot be shared whilst the investigation is underway to protect the confidentiality of emerging evidence.

2. Engagement will be trauma-informed

The Investigation acknowledges that families have experienced significant grief, harm, and distress. Bereaved and harmed families will be sharing evidence that will be difficult to say and to hear.

The Chair, Expert Advisors and investigation support team will follow the Investigation’s trauma-informed guidelines. The guidelines will continue to remain in ‘draft’ as it is an iterative document. We will continue to add and refine these guidelines as we progress. For transparency these guidelines will be shared with families. All members of the Investigation team will also undertake trauma-informed training.

Emotional and psychological support will be available to families before, during and after their engagement with the investigation. The support available will be outlined in advance of, during and after interactions with the investigation.

The Chair, Expert Advisors and investigation support team will listen and act on family feedback to continuously improve how the investigation works with families.

3. Engagement will focus on reducing inequities and inequalities

The investigation acknowledges the significant inequalities that exist in maternity and neonatal experiences and outcomes. This is reflected in the terms of reference, which seeks to ‘identify drivers and impacts of inequalities’, with a focus on women, babies and families from Black and Asian backgrounds; from deprived groups; and from other marginalised groups. Engagement will ensure diverse voices are heard, including seldom-heard groups and those experiencing health inequalities and inequities, through proactive outreach on the call for evidence and through family evidence panels as part of the Trust reviews and system-wide review. Interpretation is available to support families in meetings and translation will be provided for key documents, upon request.

How the investigation will work with families

We would like to engage with as many families as possible, and we recognise that not every format will be suitable for every family. The investigation is inviting families to engage in a variety of ways with the investigation as set out below.

4. Receiving updates from the Chair

The Chair has committed to keeping bereaved and harmed families updated on investigation progress, for example through regular letters providing key updates and documents for review. Any bereaved and harmed families can request to receive these by contacting the Investigation support team.

Regular updates and key documents for the investigation will also be published on the Investigation’s website. Bereaved and harmed families will continue to be informed of any updates or publications before they are made available online.

5. Giving evidence to the Call for Evidence

  • As set out in the terms of reference, there will be a call for evidence open to the public. This will be for women and families, including fathers and non-birthing partners.
  • The call for evidence aims to understand individual experiences and areas for improvement. Families have been invited to contribute to the development of the themes and questions.
  • Recognising that government consultations and other surveys are often not representative in their responses, a communications strategy will be developed, and the investigation will work with voluntary and community groups to ensure the call for evidence is far reaching and responses are as representative as possible. This will include a specific focus on reaching seldom heard voices and supporting them to complete the survey.
  • The call for evidence is expected to run from January to March 2026.
  • The call for evidence will primarily be hosted online, with easy-read options available. A postal option will be made available to anyone who requests it. The Investigation will accept and consider any written evidence provided by families to the Investigation mailbox. Specific details will be shared in January.
  • Due to the anonymous nature of the call for evidence it will not be possible to link this evidence to individual responses to the call for evidence.

6. Giving evidence through an individual family interview with the Chair or Expert Advisors

  • Individual bereaved and harmed families may be interviewed by the Chair, an Expert Advisor, or a trained interviewer within the investigation support team. Interviews can be held face-to-face or virtually. Members of the investigation support team will assist with conducting interviews and with transcription of interviews. The Investigation will endeavour to offer as many individual interviews as possible.
  • The Investigation will share with families a list of themes to be covered prior to their interview. These topics will align to the terms of reference and methodology and will focus on gathering evidence on systemic issues. Some interviews will also focus on specific areas of work, for example on the legal framework for Coronial involvement in stillbirths and compensation arising from harms sustained from clinical negligence.
  • Themes are intended as a guide for families to think about ahead of their interview. They may not be relevant to all families and are not intended to limit the topics families can discuss.
  • The investigation is not conducting reviews of individual cases as the investigation has been commissioned to look at systemic issues and make one set of national recommendations. The investigation is also not making findings of civil or criminal liability.
  • Information on emotional and psychological support will be shared with families ahead of individual interviews, and at the beginning of and after the interview. Family members will also be invited to bring a support person to the interview, if they wish.
  • Timing: most interviews are expected to take place from January to February.

7. Giving evidence through a family evidence panel, hosted by the Chair or Expert Advisors

There will be evidence panels as part of each of the 12 Trust reviews, and as part of the system-wide review. Separately and not covered in this strategy, there will be evidence panels with staff as part of the 12 Trust Reviews, and evidence panels with inequalities experts, academics and other experts which will form part of the system-wide review.

Family evidence panels as part of the 12 Trust reviews

  • There will be family evidence panels as part of the 12 Trust reviews.
  • To support the aims set out in the terms of reference of hearing from bereaved and harmed families, and a diverse range of families, the investigation support team will make contact with a range of organisations and individuals when planning the family evidence panels, including:
    • Maternity and Neonatal Voice Partnerships
    • Maternity and Neonatal Independent Senior Advocates (where the Trust’s ICB has been part of the pilot)
    • Bereaved or harmed families or family groups who are in contact with the investigation
    • Local voluntary and community groups
    • Local MPs
  • For each Trust review there will be at least 2 family evidence panels, one with bereaved and harmed families, and another open to all families. Each panel is expected to have 10-15 family members participating and will be scheduled for 2 hours. Panels will primarily meet in person, but virtual panels will be arranged on request. Information on themes for discussion will be shared with families ahead of the panel.
  • An independent emotional and psychological support service is available to families engaging with the investigation. This is provided by PAM Wellness, who are an independent organisation. This will be available to families before, during and after meetings. We also encourage families to bring a support person along to the panel meetings.
  • In line with the Families First approach, for each Trust review, the family evidence panels will commence ahead of the site walkaround and staff panels and interviews with Trust leadership.
  • Timing: the 12 Trust reviews are planned to take place between November and late January.

Family evidence panels as part of the system-wide review and inequalities workstream

  • There will also be family evidence panels as part of the system-wide review, and inequalities areas of work.
  • The total number of panels is to be determined, and this will be guided by evidence on where there are inequalities in experiences or outcomes, and where there are communities for which evidence is lacking. There will be specific panels to hear the voices of Black, Asian, deprived communities and other seldom-heard communities, and inequalities experts.
  • We are not expecting these forums to be a place to share sensitive personal information or accounts, but family members may reference personal experience when discussing thematic issues.
  • Each panel is expected to have 10-15 family members participating. Panels will meet in person or virtual panels will be arranged at the request of family members and the format will be smaller (6-8 family members participating). A hybrid option (i.e. some attendees in-person and some virtual) will not be used for panels. Each panel will meet once as an evidence collection panel.
  • Timing: the system-wide panels are expected to take place from February/ March onwards.

8. Consulting with families on Investigation areas of work

In line with the Families First principles, the investigation will consult families on drafts of key documents before finalisation.

Ahead of each engagement, the investigation team will set out the type of input sought, options for engaging (e.g. written feedback, phone call, attending a workshop), what feedback can and can’t be taken into account, for example, if the timelines for a piece of work are fixed due to operational reasons.

As a minimum, family input will be sought on the following:

  • Draft methodology for the investigation
  • Call for evidence
  • Review of previous recommendations

Other areas of work to be added in line with the developing draft methodology.

Any family who considers themselves bereaved or harmed can request to participate in this process by contacting the Investigation support team.

Family information pack and support to enable families to engage with the investigation

An information pack will be shared with families ahead of meetings and engagements. This will include the themes to be discussed in the meeting or engagement, and information on the following:

  • Emotional and psychological support
  • Values and behaviours in meetings
  • Remuneration for time and expenses
  • Investigation protocols e.g. privacy notice, safeguarding, complaints
  • Frequently asked questions

Families will be asked about any accessibility requirements they have ahead of meetings and engagements. Families will also be asked to complete a participation form to confirm their attendance which will include providing their contact details, and to confirm that they have read the information provided.

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