"That's All We Wanted, to Be Heard, Listened to, Just to Be Validated and Believed": Family Experiences of Advocacy Support in Maternity and Neonatal Services.

Authors

Rachel Lawrence, Julie Hartley, Nadia Crellin, Nina Hemmings, Holly Walton, Emma Dodsworth, Sarah Fisher, Naomi J Fulop, Saheli Gandhi, Kevin Herbert, Sonia Macleod, Cate Maddison, Raj Mehta, Stephen Morris, Pei Li Ng, Chris Sherlaw-Johnson, Ben Wills, Jenny Shand

Published in

Health expectations : an international journal of public participation in health care and health policy. Volume 29. Issue 4. Pages e70750.

Abstract

Systemic failures in maternity and neonatal care have resulted in adverse outcomes for families. The 2020 Ockenden review (interim findings) recommended creating an Independent Senior Advocate Role as an Immediate and Essential Action. During 2024-March 2026, the Maternity and Neonatal Independent Senior Advocate (MNISA) service was piloted in 16 Integrated Care Boards (ICBs)¹ and aimed to (1) enable families to feel listened to and heard, with their concerns acted upon, and (2) influence system change. MNISAs supported families following the death or serious injury of a mother or baby during NHS care.
To explore the experiences of families who did, and did not, receive MNISA support and the perceived impact of MNISAs.
A rapid qualitative study with families who did, and did not, receive MNISA support in 11 ICBs. Interviews were conducted, or written responses to interview questions were collected via an electronic survey tool. All responses were analysed using rapid assessment procedure sheets and inductive thematic analysis.
We interviewed 34 families (n = 31 received support and n = 3 did not, but were eligible). Findings indicate that MNISAs met service aims by listening to and validating families, enabling their voices to be heard, supporting them to navigate investigative processes and understand their care, facilitating family-led change. MNISA support was continuous, which helped to alleviate the emotional overwhelm that families experienced. Important barriers to access and engagement were identified. Families who did not receive the service indicated that they would have valued independent advocacy support. All families felt that the service should continue.
Independent advocacy in maternity care creates opportunities for families to be heard and listened to, supporting family-led change. Further research is essential to understand the ongoing and sustained impact of independent advocacy on family experiences, how the positioning of these services can facilitate equitable access and their role in preventing avoidable harm.

PMID:
42400202
Bibliographic data and abstract were imported from PubMed on 04 Jul 2026.

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