At Sands we’re determined that every family has the best opportunity to see their baby grow up. We believe that together, with your support, we can save more babies’ lives. 

Sands has been fighting for safer maternity care and better support for bereaved families for decades. We do this by putting the voices of parents at the heart of all we do.  

Janet Scott and Charlotte Bevan are Joint Heads of the Saving Babies' Lives team at Sands. We asked them about the part Sands has played in understanding why some babies die and the impact of our work to reduce these deaths.

Janet started out in Sands helping parents access information about the medical cause of their baby's death but the more she found out about how many baby deaths could potentially be avoided, the more she felt Sands had a vital part to play to highlight this relatively ignored tragedy and work to prevent so many deaths happening.   

Charlotte came to Sands with a background in journalism. Her first daughter Hope died shortly after she was born due to things going wrong during her labour that might have been avoided with better care. When she first joined Sands the charity was not yet involved in research and there was no strategy for making maternity care safer. She wanted to take parents' stories and use their experiences and observations about what needed to change, to push for safer, more personalised care where parents voices were at the centre. 

Hi Janet and Charlotte, what's the biggest change you've seen since you joined Sands?

Janet: "It can be hard to imagine but before 2010 stillbirth rates had remained unchanged for 20 years.

"The accepted view at the time was that stillbirths were sad but 'just one of those things'.  But evidence we were  reading in some specialist national reports suggested that many term stillbirths could be prevented, yet this information was sitting on a shelf and almost no-one seemed to be taking it seriously. We set out to challenge the idea that stillbirths in the UK had reached an irreducible minimum."

How did you set about bringing down the numbers of stillbirths?

Charlotte: "We joined forces with a handful of obstetric researchers who were trying to understand what was behind the 70% of stillbirths that were described as ‘unexplained’. We knew parents left hospitals with so many questions about what had happened but were effectively left out of the loop in understanding why their baby had died. They were essentially voiceless.

 "Our journey took us to an international group of researchers who shared our view. We travelled across the UK speaking to midwives and doctors, politicians and NHS leaders, researchers and pathologists to find out what they could tell us about what needed to change. 

"Most importantly, we listened to bereaved parents who told us they were convinced their baby’s life might have been saved if their care had been different. The combined evidence made it clear that much more could be done to prevent babies from dying and it wasn't all just about novel research. Many lives could be saved with what we knew today about poor NHS care."

What did you do with all this evidence?

Janet: "We pulled together everything we discovered and in 2009 wrote a report called ‘Saving Babies Lives’ which laid out where we believed things needed to change. We launched the report in all four UK parliaments, alongside Sands' Why17 campaign. At that time 17 babies were dying every. We used each of their names written in the report with the words of both parents, clinicians and researchers. From then things began to change.

"Three years later, our follow-up report Preventing Babies' Deaths recommended six key actions for government and health service providers, including improving public health messages around stillbirth, restarting national data collection on which babies were dying and where across the UK and the need for more research."

Charlotte: "These key asks really set in motion much of the work that is in place today to reduce baby deaths, such as raising awareness amongst clinicians of the risks associated with a baby dying, improving the information and resaerch we have and ensuring lessons are learned after every baby’s death.

"Sands has ensured that parent voices remain at the centre of all this work. Their voices at the heart of understanding when and why care is not safe is absolutely vital. From 2010, mortality rates for babies started to fall for the first time in two decades. Today 13 babies die every day. It is still too many but progress has been made."

Where do you think the biggest challenges are today in saving more babies' lives?

Charlotte: "The latest figures from the Office for National Statistics show that  there s been an overall increase in the rate of babies dying before, during or soon after birth. This is worrying. Currently we are not on track to achieve the government target to halve the number of stillbirths and neonatal deaths in England by 2025 compared to 2010. Despite the progress of the decade, Sands needs to keep up the momentum and commitment to reducing deaths 

Janet: "Research is vital to fill the gaps in understanding why some babies die, and to develop new ways to stop that happening, and Sands supports a wide range of research studies looking at both saving lives and improving bereavement care. We know there is so much more to do. But we know from experience that Sands can make a difference - and that s what we work towards every day."

Find out how you can support Sands' work to save babies' lives.