Saving babies' lives.
Supporting bereaved families.
Together, #WeAreSands
Sands Impact 2022-2023
Welcome
After launching our strategy in March 2022 where we outlined Sands’ vision to create a world where fewer babies die and where anyone affected receives the best possible care and support for as long as they need, this year we focused on delivering work that would help us achieve this.
Key to achieving our vision is the understanding that we can’t do this alone. When we work collaboratively and bring together our skills, expertise and experiences, we can do so much more.
Working together with our wonderfully committed local Sands groups across the UK, and with our volunteers, campaigners and fundraisers, we have made such a difference. We have done everything from creating much-needed reports and recommendations to improve maternity safety, to calling for and winning campaigns about better training for healthcare professionals and a commitment for more midwives to be recruited to the NHS. We have also grown our local peer-to-peer support and expanded our online support, and now more people can access Sands and all we offer in a way that works for them.
Thank you to everyone who has been a part of this work, Together We Are Sands, and together we can save babies’ lives and support bereaved families.
Clea Harmer, Chief Executive, Sands
"Pregnancy loss and baby death affect the lives of over half of adults in the UK. Yet it can be a lonely, isolating experience. The Sands community walks alongside anyone affected by this loss. We provide support that puts each person's individual needs front and centre in a way that endeavours to respect differences, to make sure everyone feels comfortable seeking support at any point during their grief journey. By making space for personal stories we aim to give bereaved parents and families a sense of understanding and community.”
Welcoming everyone who
needs our support
Extending support within Black and South Asian communities
Bereaved parents in Black and South Asian communities, where baby loss rates are some of the highest, also tell us of stigma, taboo and isolation. That's why we introduced more online support groups for Black and South Asian families, providing a safe space for shared understanding and support for people like Vanisha.
"In sharing the nuances of baby loss in our shared culture (faith, extended family/community and shame),... my own experience was better reflected and felt more understood."
Improving support for speakers of languages other than English
Translating our Bereavement Support Book into nine languages has made a vital resource accessible to more parents whose baby may die or whose baby has already died.
Making support more accessible for everyone
A new 'easy read' version of our Bereavement Support Book helps guide people with limited literacy or living with learning disabilities through this difficult time.
Compassionate support for parents choosing to end pregnancy for medical reasons
After hearing from parents who made the difficult decision to end their pregnancy and were unsure about available support, we have added more information about termination for medical reasons (TFMR) in the Bereavement Support Book. Parents experiencing this challenging situation told us they often feel judged at a time that's already frightening and can be lonely. Sands strives to support everyone experiencing pregnancy and baby loss in all circumstances.
Proactively bringing people to Sands
Reaching bereaved parents wherever they are
Many parents feel that meeting others who have experienced the death of a baby can offer real understanding. But sometimes it might not be possible for them to attend a Sands local support group or they may feel more comfortable talking about their experience online or from their own home. Our online meetings are a valuable source of support for any bereaved parent, and they’ve been set up to provide support in a way parents tell us works best for them. That’s why we’ve added separate groups especially for men, Black parents and families and parents and families from South Asian communities.
Putting people's needs first
Helping parents care for their baby in a way that fits with their faith
Alongside our Memory Boxes, we introduced Muslim Care Boxes which include faith-specific items. Bereaved parents tell us their baby will always be a part of their family, and Sands Memory and Care Boxes are a special place to keep meaningful items collected before and after saying goodbye to their babies. The boxes and their contents help the parental bond live on and make sure their baby is forever part of the family's story.
Evolving how and where we work for the biggest impact possible
Sands' work in local communities continues to gain momentum. Recognising Sands must grow and change to meet the needs of bereaved parents, we're altering and increasing support for families. While continuing to work at local and national levels across all four nations, we're also prioritising geographical areas and higher-risk groups.
Our campaigners are crucial to raising awareness of the status quo for some families and bringing about change, so we ran a survey of our campaigners to understand more about how they’d like to be involved. We have since established a campaigners’ e-newsletter to bring them closer to our work. Over two-thirds told us they would like to share their story to inform our campaigns and 50% are willing to contribute to materials. We are very grateful to the nearly 1,000 campaigners who shared their views to help us develop our campaigning.
Raising awareness of our cause and work
Baby Loss Awareness Week 2022
Stopping isolation in its tracks and making understanding and support for bereaved parents more forthcoming means breaking the silence around pregnancy loss and baby death. Alongside Sands, over 120 like-minded organisations came together for this year's Baby Loss Awareness Week. Together, we raised the conversation around baby death and created a space for bereaved parents, families and others to remember their babies, share experiences and feel supported.
Image Credit: atpwiles1968
Image Credit: atpwiles1968
Together, we're helping bereaved parents find comfort in shared experiences.
"It's a good feeling to know that along the way with events like Baby Loss Awareness Week, we're helping others too."
Sands Awareness Month 2022
Sands is a powerful community. And together, we save babies' lives and support bereaved families. This year, we helped the Sands community connect with others so more people understand the impact of baby loss, why Sands exists and what we do.
The community told us about their #MySandsConnection, shared their stories, attended Sands Garden Day alongside other bereaved families, fundraised with family and friends, donated to support our work and chose to become volunteers.
Amie’s #MySandsConnection
Amie’s daughter Charlotte was stillborn at 37 weeks in 2015. She found the care she was given by the hospital at the time helped her and her partner on their bereavement journey and has gone on to set up a Sands support group in her home town.
"My immediate bereavement care was excellent. I was taken great care of when delivering my daughter and had lots of memory making opportunities with her following her birth.
However, my bereavement care once I left hospital was just a few phone calls from the bereavement midwife but otherwise nothing. Counselling lists were at least six month waiting lists. So I found and used the Sands forums, my family and good friends as my support.”
"Many baby deaths could be prevented through investing in research and standards of care. That’s why we support pioneering research, drive improvements in maternity safety and work to reduce inequalities to make the UK the safest place in the world to have a baby. Parent voices and lived experiences inform that research, shape our campaigns and sit at the heart of our education and training, leading to better care and fewer babies dying.”
Collaborating and learning
Together, we're making change possible.
"Input from Sands is invaluable. It helps ground research in real-life experiences of women, links results to other projects and researchers and undoubtedly plays an important role in dissemination and adoption of results."
Strengthening research for the biggest impact on saving babies' lives
We supported over 90 research studies, working with researchers, healthcare and care professionals to understand more about why babies die, to make care safer and to improve support after loss. From input into research funding applications to developing and designing studies and facilitating bereaved parents sharing their experiences, we continue to invest our expertise in research that puts bereaved parents’ voices at its heart, to make the biggest difference to parents and families.
Demonstrating the impact of research studies and parents’ voice
With an expanding portfolio of research studies, we built a new system that closely tracks the progress and impact of all the research we support. This ensures we are focusing on high-quality studies that make the biggest difference and makes it possible to showcase where parents' voices are contributing to the evidence base.
Via our website you can see in an instant all the research we support and find details about the difference we’re making in the areas of most interest to you, whether it’s around environmental factors that may impact baby deaths, or the support that bereaved fathers and partners may need in the workplace.
Examples of some research projects:
i-choose project
We amplified parents’ voices by making it possible for them to feed into a research project whose aim was to agree what key aspects of parents' experiences need to be measured in all research related to bereavement care after stillbirth.
DISCERN study
The study aimed to understand what would improve open disclosure to harmed families when things go wrong in NHS maternity care. When units are not honest about poor care it can compound parents' experience of harm. As a collaborator on the study led by King's College London, Sands has ensured parents' experiences are captured at every stage of the study. We also consulted on an animation which will be included in training on open disclosure conversations and processes for healthcare professionals.
Learning from parents’ perspectives about why their baby died
For many parents the most pressing question when their baby dies is why? Understanding what happened is key for them, and for services to improve. By learning from when things go wrong, we can work with healthcare professionals to ensure care is improved before, during and after pregnancy. So we have focused our efforts on ensuring parents' voices about what happened are included in any review, to get a 360-degree view of their care to understand if safer, more personalised care might have saved their baby. Through a free 90-minute webinar, we trained up to 30 healthcare professionals every month. From chaplains to student midwives and neonatologists, we guided them in engaging and communicating with bereaved parents about the review process. Thanks to our work as a key member of the Perinatal Mortality Review Tool (PMRT) - the UK's national system for reviewing care - we were able to highlight that at least two deaths a day might be avoided with safer, more personalised care.
Parent insight guiding our future focus
Parents' voices shape our work, from the training and education for healthcare professionals to policy changes and our research focus. Making sure their voices are heard and lessons are learnt from their experience also gives bereaved parents the chance to leave a lasting legacy for their baby. The newly established Sands Insights Core Group brings together bereaved parents who use their experience and knowledge to influence where our focus should be for the biggest impact and what we need to do to create a wider, more inclusive parent network.
“The Insights parents helped to shape an evidence-based framework for health professionals’ education, setting out the skills and competencies they’ll need to learn about to deliver good bereavement care.
We also made sure the parent's voice was heard as part of a national data collection programme in collaboration with MBRRACE (Mothers and Babies: Reducing Risk through Audits and Confidential Enquiries across the UK), making it a priority to highlight places where there may be concerns about care safety. Through our input, we keep a focus on ensuring the data is used to reduce baby deaths."
Adding parents' voices to the crisis in perinatal pathology
There is an acute shortage of perinatal pathologists in the UK. As a result some bereaved parents are waiting more than six months to find out why their baby died and most baby post-mortems are taking over three months. Parents are left in limbo, unable to move on with their grief and without the information they need to plan another pregnancy. By raising strong concerns with policymakers and service providers at multiple levels in England, we have pushed hard to ensure parents’ needs are included in service changes and that information and training provision for healthcare professionals around baby post-mortems is addressed. By making parents’ voices heard, we’re highlighting the real impact of the current crisis in perinatal pathology. We continue to work on this issue to change outcomes for more families.
Improving safety in pregnancy, birth and the neonatal period
Successfully campaigning for safer staffing
We jointly delivered the Safe Staffing campaign during Baby Loss Awareness Week. A report published by two parliamentary groups and supported by Sands focused on maternity and baby loss, showed NHS maternity services are understaffed, overstretched, and too often letting down women, families, and staff. With the All-Party Parliamentary Groups on Baby Loss and Maternity, and with the help of the Sands and wider baby loss community, we called on the government to tackle the staff shortage in maternity services, impacting safety and bereavement care. Together with 3,500 people contacting their MPs and 25 of those MPs talking about the issue in Parliament, we influenced the government's commitment to hiring an extra 2,000 midwives in England and to a long-term and independently verified workforce plan.
"Over 3,500 people sent letters to their political representatives in all four nations of the UK for our Safe Staffing campaign. The government's announcements show what our community can achieve by making our voices heard regularly in the long term."
Securing policy change that will save more babies' lives and tackle inequalities
The Sands and Tommy's Joint Policy Unit (JPU) continued its mission to reduce inequalities in care that leave babies at higher risk of dying depending on their parents' postcode, ethnicity and income. We're committed to making sure pregnancy loss and baby death stay high on the political agenda and achieving policy changes steeped in research and evidence to eliminate inequalities, improve care and save babies' lives.
The Saving Babies' Lives report
Our inaugural report took shape this year, bringing together data from different sources for the first time to show the extent of pregnancy loss and baby death across the UK. It aims to put the spotlight on recent trends and evidence, as well as gaps in our understanding. The report will set out key areas where action is required by government and policymakers to reduce rates of miscarriage, stillbirth, pre-term birth and neonatal death. The Saving Babies' Lives report launched in May 2023.
National review of failings
The Ockenden review and East Kent reports highlighted serious failings within individual maternity services, and there is a growing recognition that similar issues are affecting services across the UK. Through our policy and research work, the JPU aims to identify and highlight the key changes needed to save more babies' lives. To support this, we're reviewing various reports and reviews to identify consistent themes that need to be addressed at a national level. Learning from every tragedy and making sure history never repeats itself sits at the core of our work to save babies’ lives.
Improving maternity care through the Maternity Consortium
Sands and Tommy's co-led the Maternity Consortium into its second year. Using our collective expertise, we join national and local voices behind a common agenda: to reduce health inequalities for families throughout the pregnancy journey from pre-conception through the first year of a baby's life.
In its second year, the Maternity Consortium led projects to:
- Share learning from the Starting Well Health and Wellbeing Fund: We hosted two webinars and developed two written case studies sharing learning, good practice and lived experience from the Starting Well projects, which are local programmes funded by the DHSC focused on reducing health inequalities from pre-conception up to two and a half years.
- Support maternal mental health services and perinatal mental health teams to deliver inclusive and accessible services: We delivered three events tailored to feedback from services to support education, networking and improved practice.
- Address inequity in neonatal care (led by Bliss): After engaging with healthcare professionals and families and an extensive literature review, Bliss created a 90-minute webinar for healthcare.
- Understand women's lived experience of children's social care during pregnancy and early motherhood: Birth Companions engaged with women to understand their experiences of children's social care involvement during their pregnancy and in the first two years of their child's life. They produced a short insight report and a webinar to share the findings.
Developing tools designed to drive better outcomes for families
Through our continued membership of MBRRACE-UK (Mothers and Babies: Reducing Risk through Audits and Confidential Enquiries across the UK) and as part of the collaborative committed to the ongoing development and adoption of the Perinatal Mortality Review Tool (PMRT), we're building a better understanding about where and why babies and mothers die every year. This vital information supports health services across the UK in delivering and improving care.
- Work continues building the principles of the National Bereavement Care Pathway (NBCP) into the PMRT. By capturing the quality of bereavement care when a baby's death is reviewed, we're helping inform and drive much-needed changes.
- The ongoing development of the PMRT is setting better standards for reviews and parent engagement as part of the Maternity Incentive Scheme for England set up to reward trusts that meet safety actions designed to improve the delivery of best practice in maternity and neonatal services.
- Newly developed online interactive maps established as part of the MBRRACE collaborative show how local maternity units perform in baby deaths, enabling greater transparency and visibility for the public.
Keeping safe maternity care on national agendas in all four nations
We continued to work at a UK-wide level to keep safe maternity care on the agenda, collaborating with other charities as part of the Pregnancy and Baby Charity Network, and as part of One Voice along with other key charities and Royal Colleges. In addition we continue to identify where and how we can make the biggest impact and meet the needs of each country through involvement in external programmes.
England
Through membership of the Maternity Transformation Stakeholder Council we fed into the development of the new Maternity and Neonatal 3-year Delivery Plan which aims to deliver safe, personalised and equitable care. We continued to jointly chair the Smoking in Pregnancy Challenge Group, calling on the government to publish a strategy outlining how to get back on track to meet its target to reduce the number of women who smoke during pregnancy. We also contributed to version 3 of the Saving Babies' Lives Care Bundle which included an element on diabetes in pregnancy.
As a member of the Steering Group of the National Child Mortality Database (NCMD) we continued to support its work gathering information on all babies and children who die in England, including a report evidencing the deaths of one in three children under the age of 18 are due to health problems during pregnancy, labour or soon after birth.
Scotland
We continued to support best practice in reviews and investigations after a child or baby dies through our work with National Hub Scotland. We were also part of the Neonatal Mortality Review Group which continues to look at the reasons behind the sudden rise in neonatal deaths in Scotland in 2021/2022.
As a part of the Scottish Perinatal Network Serious Adverse Events Review Group we were involved in ensuring that parents and families were compassionately included in review processes.
Wales
Through membership of the Welsh Maternity and Neonatal Network we continued to raise the importance of considering safety and perinatal mortality reduction, and in September 2022 presented at the Welsh Safety Summit in Cardiff ensuring the perspectives of bereaved parents were included.
Northern Ireland
Although work in Northern Ireland continued to be challenging in the absence of a Northern Ireland Executive, in our role as part of the Northern Ireland Maternal and Infant Group (NIMI) we continued to influence the work programme to ensure a focus on peri natal mortality.
Campaigning
Stark inequalities remain in the rates of baby death in the UK, especially when looking at ethnicity and socio-economic deprivation together.
Listening to bereaved parents to better understand inequalities
This year, we launched The Sands Listening Project to complement the MBRRACE confidential enquiry into Black and Asian women's care before and after their baby's death. Through focus groups and interviews, we're hearing from more than 50 parents about their experiences and are learning lessons to improve maternity safety and close the gap in inequalities. Our findings will be shared with maternity professionals, policymakers and others with the power to make change. In December 2023, we'll release our report alongside the MBRRACE enquiry, ensuring all voices are heard.
Together, we’re creating lasting change.
"We both have gained so much from Sands. Not only do we feel recognised as Asian bereaved parents but it's given us a purpose, and we now want to do more in Joshan's legacy."
All-Party Parliamentary Group (APPG) on Baby Loss
Sands is the secretariat for the All-Party Parliamentary Group (APPG) on Baby Loss which brings together MPs and Peers from across parties to work on this vital issue along with other organisations, government departments, healthcare professionals and bereaved parents.
The APPG’s overall aims are to develop policy that supports families dealing with the grief of baby loss, and to prevent it happening in the first place. It aims to raise awareness of what more can be done by the government, Parliament and other agencies to help those affected, and reduce the risk of baby loss.
Together, we're improving support from healthcare professionals.
"I still relive the moment the nurse asked me if I wanted to hold him and that my answer was that I didn't know. I wish a nurse or midwife sat me down and asked – would you like to discuss what could happen and what it could be like…"
