The MNISA role was introduced in response to a series of national reviews into maternity care, including the Ockenden Review (2022), which called for urgent action to improve safety and support for families.

MNISAs provide vital support to women and families who have experienced serious incidents in maternity or neonatal care. They help families navigate complex systems, ensure their voices are heard, and use their experiences to influence positive change in the healthcare system.

The evaluation included interviews with 34 families across 11 regions, covering a range of experiences. 

It found that families overwhelmingly valued having access to an independent advocate during one of the most difficult periods of their lives. 

Advocates helped families by:

Helping them feel listened to and heard 

“Although we had our voices, it felt very much like we were silenced. Our advocate provided us almost like the pedestal to be heard and that’s all we wanted, to be heard, to be listened to, just to be validated and believed." - Mother whose baby died in the neonatal period

Providing compassionate support

“It certainly impacted our ability to grieve as a family and support my daughter, as parents - not as go-betweens between the hospitals.” - Grandmother whose granddaughter was stillborn

Better understand the care they had received

“You can't actually separate the black and the white to put your argument forward. That's what our advocate did for me. It was a massive weight off my chest.”  - Mother whose baby was stillborn

Reduce the emotional and practical burden following bereavement or serious harm

“I was able to just grieve and go through the process of grief not worrying. Because you feel like you’re letting your baby down if you don’t advocate for them yourself and you’re like, I can’t just let her death be in vain or let it just happen. I feel like a bad mum if I do that and so [our MNISA] taking that burden was amazing.” - Mother whose baby was stillborn

Raise concerns and contribute to improvements in maternity care

“One of the outcomes was that [the hospital] developed a preterm birth leaflet. We were absolutely distraught because when we looked at it, I expressed four of the symptoms in the weeks and hours leading up to our son’s death. I was just like, “Oh my god. This could have saved my baby’s life." - Mother whose baby died in the neonatal period

Many families described the service as a lifeline during an incredibly difficult time. One mother described her MNISA as: "The golden thread throughout – it would have been a completely different situation without her."

The key findings include:

• All families interviewed said the MNISA role should continue.
• Families who didn’t receive support said they would have valued having access to a MNISA.
• Families valued having a consistent, compassionate point of contact who could explain medical processes in plain language, support them through investigations, and help rebuild trust with healthcare providers.

Researchers found that the advocates provided a trusted, independent source of support while helping families navigate complex healthcare systems and ensuring their experiences informed learning and improvements across maternity services.

The findings come as national reviews and inquiries continue to highlight persistent failings in maternity care and the need to ensure families are listened to after adverse outcomes. The research suggests that independent advocacy has an important role to play in improving both family experiences and the quality of maternity care.

"Our findings show MNISAs helped families feel heard, supported, and empowered, while providing opportunities for systemic learning and change. RSET will continue to share and disseminate these insights. Our partnership with Sands ensured we could engage directly with families, grounding the evaluation in their experiences and amplifying voices that are too often overlooked.”

-    Professor Jenny Shand, Director of RSET, Professor of Applied Health Research, University College London.

The research paper is now available to read online. 

The report was published on the Nuffield Trust website. 

This poster shows a summary of the research Sands was involved in.

The MNISA role has had a wider impact. Advocates have contributed to national training materials and helped shape guidance to better reflect the needs of families. They’ve also brought family voices into board-level discussions, helping healthcare staff reflect and improve.

The research highlighted three key areas where change is still needed:

1.    Better communication with families after adverse outcomes.
2.    More personalised and compassionate care.
3.    Improved access to mental health and bereavement support.