Throughout June we have been raising awareness of the fact that 15 babies die every day in the UK before, during or shortly after birth. Not only is this number far too high, it is also not falling fast enough. In fact the rate of reduction in the UK is up to three times slower than other European countries.
Sands works across the UK with governments, the NHS, other charities, professional bodies representing health professionals, and with relevant research and policy groups.
Our aim is to maintain a national focus on preventing the avoidable deaths of babies before, during or shortly after birth and to collaborate on work to improve the safety of maternity and neonatal care.
Below are 15 vital projects which Sands is either running or closely involved with:
1. MBRRACE-UK Perinatal Surveillance
What is it? A collaboration of researchers, clinicians and data experts which includes Sands as the lay member. Charlotte Bevan, Senior Research and Prevention Advisor at Sands, ensures the parent voice is integral to the work.
What does it do? Collects information from all UK hospitals on all babies who die before, during or shortly after birth (from 22 weeks). The work, which is funded by all four UK governments, aims to highlight variation from place to place and show trends over time. Are more or fewer babies dying? Who’s most at risk? Understanding these vital questions informs Health Services across the UK in delivering and improving care.
View the latest MBRRACE-UK reports here.
2. Each Baby Counts (EBC)
What is it? A programme by the Royal College of Obstetricians and Gynaecologists to reduce the numbers of babies who die or are brain injured because of something that happened during labour. Laura Price, Senior Research Officer at Sands, and Janet Scott. Research and Prevention Lead, provide the parent voice on the Independent Advisory Group.
What does it do? EBC collects information from maternity units across the UK on the local hospital review undertaken when a baby dies or is brain injured as a result of something that happened during labour. Each hospital review report is scrutinised by an Each Baby Counts assessor. The latest EBC report shockingly showed that in one out of three cases where a baby was harmed or died in 2015, the information in the review was so poor the EBC team couldn’t make any comment on the care. Where there was enough information in the review the team concluded that in three out of four cases, injury to the baby or death might have been prevented with better care.
The team pulls out common ‘themes’ of care that need to be improved with better guidance or more resources. They were also able to conclude that parents were invited to contribute to a review of their baby’s care in just 35% of reports they looked at. Sands' Research and Prevention team used the findings of a survey of Sands parents in 2016 to make recommendations on how parents should be included in reviews of their baby’s death. The ‘top tips’ featured in the EBC progress report, June 2016, have been shared widely by clinicians.
To read the reports and for more information visit the Each Baby Counts website – you can also sign up for the newsletter.
3. MBRRACE-UK Confidential Enquiries
What does it do? MBRRACE-UK also carries out confidential enquiries on babies who have died. Expert panels of clinicians look at anonymised (meaning the notes cannot be identified with a particular family or place of care) medical notes to understand what happened and if the mother and baby received the best care they could have. The care is graded showing where the panel thinks different care might have saved the baby’s life and impacted the mother's psychosocial wellbeing. Based on this, MBRRACE-UK makes key recommendations for where improvements in care should be made.
The first confidential enquiry, published in 2015, looked at babies who were otherwise healthy but were stillborn at the end of pregnancy (after 37 weeks gestation) in 2013. It found that in 60% of cases better care might have prevented the stillbirth. The current enquiry which publishes at the end of this year, looks at stillbirths and deaths resulting from an event in labour. Both these enquiry topics were put forward by Sands in a competitive process – as limited funding means enquiries are only undertaken every two years.
You can read the enquiry reports and lay summaries here.
4. Standardised Perinatal Mortality Review Tool
What is it? Research shows that around 60% of stillbirths at term and 75% of labour-related harm might be avoided with better care. Yet too often when a baby dies the care mother and baby received isn’t robustly examined or reviewed by hospitals to see if anything could have been done to save the baby or prevent harm to the mother. Sands started work in 2012 with the Department of Health and a group of experts to develop a framework of questions to guide health professionals through a review process when a baby dies so families get information that’s as clear as it can be about what happened. Importantly, we recommended parents are invited to use the review as means of getting answers to any questions they have about their care. Reviews are also vital so that hospitals can learn from any mistakes and improve care for future families.
What now? The Secretary of State pledged £500,000 to turn this work into an easy to use, web-based tool and work has begun to make this a reality. Sands staff members Charlotte Bevan and Janet Scott are part of the MBRRACE-UK collaborative group designing and developing the PMRT, which will be ready to roll out at the end of 2017.
To read more go to https://www.npeu.ox.ac.uk/pmrt.
5. Safer Pregnancy Website
What is it? Sands has long recognised that improving public health is an important aspect of preventing baby deaths. Our new Safer Pregnancy website is aimed at mums-to-be. It gives clear information about stillbirth risks as well as advice on things women can do to stay healthy and keep safe in pregnancy. While being aware of risks alone can’t prevent all stillbirths, the website is full of evidence-based information to help women make informed choices about their heath and care.
What does it do? This work came out of the Sands/Department of Health Task and Finish Group on Public Health messaging which began work in 2012. We worked with policy makers, clinicians and across the Department of Health to create an agreed set of messages around stillbirth risk. We ran focus groups of midwives and parents to be to test these messages because we wanted to inform rather than scare anyone. Our Safer Pregnancy website is written and managed by Sands with expert oversight and these messages are also included on the NHS Choices website. Dr Laura Price, Senior Research Advisor at Sands, led on the production of the website.
6. Sands Research Fund
We are dedicated to supporting research into the causes of stillbirths and neonatal deaths; and finding better ways of identifying and monitoring babies at increased risk of dying. We do this by funding studies using our Research Fund.
The studies we fund go through a rigorous selection process, coordinated by Sands' Senior Research Advisor, Dr Laura Price, to make sure we choose the best research that will make the most difference. We are guided by our independent Perinatal Expert Panel. To date we have funded over £750,000 of research. Find out about the studies we fund.
7. NHS Maternity Review and Maternity Transformation Programme
What is it? An independent review, chaired by Baroness Julia Cumberlege, was carried out into maternity services in England in 2015. Janet Scott, Research and Prevention Lead at Sands, was invited to be a member of the review panel. The Maternity Review looked at different aspects of maternity services and made recommendations covering organisation and culture. Sands helped organise engagement days and a survey specifically to get feedback from bereaved parents about their experiences of care. This had a significant impact on the final report, Better Births (PDF). The report highlighted the need for safer care and supported standardised hospital reviews when a baby dies, something that Sands has worked towards for many years.
You can view Janet Scott talking about the standardised review here.
NHS England has committed to delivering the recommendations in the Better Births report through the Maternity Transformation Programme. Dr Clea Harmer, Sands CEO, is a member of the new Stakeholder Council overseeing the work.
Find out more about the Maternity Transformation Programme.
8. Scottish Stillbirth Working Group
What is it? Set up in 2010 following the parliamentary launch of our Saving Babies’ Lives report, the group has overseen several improvements to care for women and babies that may save lives. These have included: improved detection of poor growth, improved management when a mum reports that her baby’s movements have changed or stopped and better information about risks for pregnant women.
What do we do? Janet Scott, Research and Prevention Lead at Sands, has contributed to the group throughout, sharing successful initiatives from across the UK. The Scottish Government’s target to reduce stillbirths by 15% by 2015 was achieved. Scotland has now set a target of a further 20% reduction by 2020.
9. Welsh National Stillbirth Working Group
What’s the background? Pressure from Sands and other charities in Wales led to a government stillbirth enquiry with a series of important recommendations to improve care and save lives. The Welsh National Stillbirth Group was established in 2011 led by Wales’ Chief Nursing Officer as part of the 1000 Lives Improvement programme. It focuses on saving babies’ lives in Wales and improving both bereavement care and perinatal pathology services, when families want a post mortem. Wales was particularly inspired by our work in public health messaging and began its own Safer Pregnancy Campaign in early 2017.
What do we do? Charlotte Bevan, Senior Research and Prevention advisor at Sands, represents us on the group with the support of Heather-Jane Coombs, Sands network co-ordinator for Wales. They ensure all views are heard and Wales is up to date with anything we might be doing elsewhere in the UK to improve care for families.
10. Northern Ireland Maternal and Infant Steering Group – NIMI
What is it? The Department of Health in Northern Ireland convened the NIMI group after Sands and BLISS campaigned in Stormont in 2011 for greater awareness of baby deaths and improvements to all aspects of care. The group focuses on improving care related to all baby deaths from miscarriage to babies who die up to a year old. Chaired by Northern Ireland’s Chief Medical Officer, NIMI includes clinicians, baby charities and health officials. It monitors progress on data collection, public health messages and auditing care around pregnancy and the early days after birth. Stephen Guy, Sands Northern Ireland network co-ordinator sits on the group, with Janet Scott from Research and Prevention, and Clea Harmer, CEO at Sands, contributing.
11. Saving Babies Lives Care Bundle
What is it? NHS England has responded to Sands call for a focus on reducing deaths in the UK, by introducing a Care Bundle. This is improved guidance on four important areas of care which individually, as well as together, could help reduce stillbirths as well as deaths in newborns. The elements are:
- Supporting women to stop smoking during pregnancy
- Measuring baby’s growth during pregnancy and using a growth chart to spot and problems
- Making pregnant women aware of the importance of their baby’s movements
- Better and ongoing training around CTG interpretation (the CTG is the trace showing the baby’s heart rate during labour
Dozens of English maternity units have taken up the Saving Babies’ Lives Care Bundle which will be updated in 2018. It’s soon to be supported by a website called the Stillbirth Hub, so watch this space.
How are we involved? Charlotte Bevan from Sands was on the development group that helped flesh out Elements 1 and 3 of the Bundle. She is now part of a team evaluating the Bundle’s impact both on women and health services and the development of the Stillbirth Hub.
For more information go to https://www.england.nhs.uk/mat-transformation/saving-babies/
12. Parent input into unit-level mortality review – Sands survey and PARENTS studies
What is it? Sands worked with the Department of Health in 2012, to develop a standardised approach to hospital reviews of care when a baby dies, in order to understand what happened, what lessons could be learned and where care should improve. From the start we called for parents’ views on the care they and their baby received to be a key part of the hospital investigation. Parents have a unique perspective of their care and yet are invited to participate in reviews in only 35% of baby deaths in labour at the end of pregnancy and even fewer in cases of third trimester stillbirth.
So what next? We surveyed parents in 2016 to find out if they wanted to be involved in reviews and looked at the best ways to include their perspective and questions around their care. Almost 300 parents responded. We combined the survey results with Sands-funded work done by the Bristol University PARENTS research team to come up with ‘top tips’ for hospital staff carrying out reviews. We continue to work on how best to include parents in the review process.
13. Stillbirth Clinical Studies Group (CSG)
What is this? Sands supports the Royal College of Obstetrics and Gynaecologists’ Stillbirth Clinical Studies Group – a group of leaders in UK clinical work and science around maternity care. The group meets twice a year to discuss research that focuses on stillbirth. The aim is to share expertise and knowledge and help others working in this area to design and carry out good-quality research that provides results which will make a difference to families of the future. The group identifies research gaps and proposes priority topics for government research funding bodies to support. Janet Scott and Laura Price from Sands' Research and Prevention team run the group as well as contribute the parents’ voice to the CSG.
A list of CSG members and meeting minutes are available here.
14. Child Death Overview Panels (CDOPs) National database
What is it? When a child dies any time from birth up to 18 years old, that death is reviewed by a local Child Death Overview Panel (CDOP) to understand what happened and if any lessons can be learnt locally to prevent future deaths. So far CDOPs have been working individually with a minimal amount of national reporting. In future there will be a more standardised process for all CDOPs as well as a national database to ensure national learning. The work to create that database is currently out to tender.
What do we do? Charlotte Bevan, Senior Research and Prevention Advisor at Sands, organised focus groups of parents to contribute to the discussion around a national database for CDOPs. Parents were enthusiastic about the idea and many don’t even know the CDOP process exists. When the database is commissioned, the Sands Research and Prevention team will hope to have a say in its development along with other charities and individual parents.
For more on the report on the national database: https://www.npeu.ox.ac.uk/cdr
15. International Stillbirth Alliance (ISA) Conferences
The ISA brings together researchers and parent groups from around the world to share information, understanding and experience of stillbirths, with an aim to reduce deaths globally and improve bereavement care for families. They have a conference every year – alternately in the developed and developing world.
Sands has been involved with ISA since 2004, supporting annual conference and contributing to the Board and communications work. By encouraging international research collaborations and comparing progress on stillbirth in different countries, ISA has had a major impact on global awareness.
ISA and the The Lancet? A team of ISA researchers authored two series of papers on stillbirth in the Lancet, Stillbirths (2011) and Ending Preventable Stillbirths (2016). These added to Sands' calls for change and had a significant impact on maternity policy in the UK. Janet Scott, Research and Prevention Lead at Sands, wrote the parent commentary for the first Series and Sands funded a paper on Stillbirths: economic and psychosocial consequences by A Heazell et al, for the second.
The next ISA conference is in Cork in September and then in Glasgow in 2018. Visit the ISA website for details.