A new independent evaluation has found that a pioneering advocate role is making a real difference to families who have experienced the heartbreak of pregnancy and baby loss while in maternity and neonatal care.

The research, carried out by the NIHR Rapid Service Evaluation Team (RSET) — a collaboration between University College London, the Nuffield Trust, and the University of Cambridge — was conducted in partnership with Sands. It focused on the pilot of the Maternity and Neonatal Independent Senior Advocate (MNISA) role, which is currently being trialled in several areas across England.

The report has been published on the Nuffield Trust website.

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.

Supporting bereaved families

One mother described her MNISA as “the golden thread throughout – it would have been a completely different situation without her.”

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.

“At Sands, we’re proud to have supported this important research and to continue advocating for bereaved parents and families. We believe every parent deserves to be heard, supported, and treated with compassion—especially in the most difficult of times. 

“The report will be given to the members of the newly formed Maternity Task force which is reporting to Wes Streeting. Sands will be looking to see how they respond and making sure the government understands the potential impact for the MNISA role and the importance of advocates in helping parents navigate the healthcare system.”

- Clea Harmer, Chief Executive, Sands.

What the researchers found

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

Feedback from the Senior Advocates interviewed was overwhelmingly positive:

• 94% of MNISAs agreed the role helps families feel listened to and heard.
• 82% said they were able to act on families’ concerns.
• 76% believed the role can influence long-term change in the system.

“This research was essential to understand the value of the MNISA role in giving families a trusted, independent voice after devastating maternity and neonatal outcomes. With the launch of the national maternity investigation and taskforce to drive improvements across England, the national importance of safer, more compassionate maternity care is clear. 

“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.
 

Breaking down barriers

The research also identified barriers that can prevent families from accessing the service, including:

• Lack of awareness or understanding of the role.
• Language barriers.
• Emotional overwhelm following a traumatic experience.
• Concerns about the independence of the advocate. 

However, these were often overcome through clear communication, in-person meetings, and the flexibility and empathy shown by MNISAs.

Improving training and care

The MNISA role is already having 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 highlights 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.

Sands is here to support

Sands accredited training for healthcare professionals is available across the UK. Our training is delivered by specialist facilitators and the resources are regularly updated to reflect emerging research, new guidelines and evolving clinical practice. 

Sands also provides a safe, understanding and caring community for anyone touched by pregnancy or baby loss. Find out more about all the ways we offer bereavement support.