Our year at a glance

Our strategy 2017-2020

Everything you’ll see in this report – the support we provide, the training we run, the research we fund and the way we raise money – is focused around our vision and three aims. We have four objectives to realise our vision and six commitments.

Government targets to reduce stillbirths and neonatal deaths*

UK stillbirth and neonatal mortality rates (2010-2018) and National Maternity Safety Ambition trajectories.

1. To reduce the number of babies dying before, during and shortly after birth

In the UK, 15 babies die every day, before, during or shortly after birth. That’s 3,200 stillbirths and 2,131 neonatal deaths in 2017*, similar to the previous year.

Major new initiatives to improve maternity and neonatal care have been introduced, alongside the national ambition to cut deaths by 20% by 2020 and 50% by 2025. While a fall in deaths is anticipated it’s likely to be a few years before the initiatives result in a meaningful reduction.

Learning from research is vital if we are to achieve a significant and sustained reduction in baby deaths. We need to know more about why many babies die and develop new treatments to prevent these deaths.

Sands has continued to identify and support high quality research projects that advance understanding of why babies die. For example, new research, part-funded by us, has revealed that women who develop diabetes in pregnancy which is not diagnosed, are much more likely to experience stillbirth. This increased risk can virtually be eliminated if the appropriate national guidelines for screening and diagnosis are followed.

Our work to support world class research helps to fill knowledge gaps, drive improvements in maternity and neonatal care and sustain the political will to reduce the number of baby deaths. Read more

Learn more about the studies we fund sands.org.uk/research

Working to make maternity and neonatal care safer across the UK

Sands is helping to ensure there are robust reviews of every baby’s death to learn lessons. This will help us improve care and give parents answers about why their baby died. By offering practical help to Trusts and Health Boards, we aim to make sure parent’s voices are part of the review of their baby’s death.

Sands has been involved in developing a range of parent engagement resources for the Perinatal Mortality Review Tool (PMRT), as well as working with the Healthcare Investigation Branch (HSIB) in England, and Serious Adverse Incident Review process in Scotland.

Following joint influencing by Sands and key policy coalitions, the NHS Long Term Plan published in January has a strong focus on maternity safety and a re-commitment to the national ambition to halve the rate of perinatal deaths by 2025.

Our safer and healthier pregnancy messages (based on the Safer Pregnancy website) were included in the revised Saving Babies Lives Care Bundle published by NHS England. All Trusts in England are incentivised to follow this national guidance.

2. Ensure the right care and support is available at the right time after the death of a baby

Compassionate, sensitive, family centred bereavement care can have a significant impact on the wellbeing of families in both the short and long term. Good quality care provides families with the opportunity to grieve safely and may contribute to the prevention of conditions such as PTSD, anxiety and depression.

It is recognised that bereavement care in the UK has improved in recent years, with some parents saying that they received excellent care. Unfortunately, this is not always the case and bereavement care across the UK remains patchy. This inconsistency is seen across healthcare providers and also between different types of loss. Sands passionately believes that all bereaved parents should have access to high quality, sensitive and individualised care, regardless of circumstance, gestation or postcode. It’s for this reason that Sands actively works with health care professionals to ensure they are equipped and able to deliver the best possible care.

Sands continues to deliver bereavement care workshops for health care professionals across the UK. Our curriculum has recently expanded and we are now in a position to deliver training for a variety of professions including midwives, nurses, students, doctors, health visitors, doulas, counsellors and interpreters.

This year we facilitated training workshops at 145 locations across the UK and feedback from attendees was excellent. Read more

The National Bereavement Care Pathway (NBCP), seeks to improve the quality and consistency of bereavement care received by parents from the NHS after pregnancy or baby loss.

Sands leads the government backed National Bereavement Care Pathway (NBCP) in collaboration with bereaved families, other charities and Royal Colleges, which provides health care professionals with frameworks, tools and educational resources to support excellent care. The NBCP is based around nine standards of bereavement care and includes pathways for miscarriage, termination of pregnancy for foetal anomaly, stillbirth, neonatal death and sudden unexpected death of an infant up to 12 months.

From October 2017 11 NHS Trusts piloted the NBCP in England and in April 2018 and a further 21 Trusts joined the programme. The NBCP is now being expanded into Scotland.

An independent evaluation concluded that the NBCP is having a positive impact. 

For more information on the NBCP, including access to resources and tools please visit nbcpathway.org.uk

The plan for the coming year is to improve access to our educational resources and to embed the NBCP so that health care professionals across the UK are equipped and able to provide excellent bereavement care.

2. Ensure the right care and support is available at the right time after the death of a baby

We aim to support bereaved families where they are and when they need us.

Discover ways we offer support

"I’ve called this helpline several times after my daughter died in January. The people I’ve spoken to have been amazing. They’ve helped me through the darkest moments of my life. They couldn’t be more supportive, knowledgeable. They know what to say and what not to say. Thanks for helping me survive the darkest of days."

Bereavement Support App

The Sands Bereavement Support App was created to help bereaved parents and families to find the right information and support at the right time. The idea to create an app was inspired by Nicole Regan-White, a bereaved mother, whose baby Jessica was stillborn after 42 weeks gestation on 24 December 2013.

The app can also be used by healthcare professionals, who would like to know how best to support bereaved parents and their families. Learn more and download the app at sands.org.uk/app

“Shortly after we lost Jessica I contacted Sands to let them know that searching for information was difficult and overwhelming for bereaved parents at the time of a baby’s death. In a digital age we discussed my idea of creating an app that can be downloaded in seconds that provides all the information a bereaved parent and their family would need anytime, anywhere.” - Nicole

Bereavement Support Book 

Throughout the year we worked to update the Sands Family Support Pack to a fresher, more up to date look and to include additional information on:

• Ages and stages of children’s grief

• Support for those who do not have children following loss
• More diverse images and language to appeal to a wider range of bereaved parents

The Bereavement Support Services team was supported by health care professionals, bereaved parents, volunteers and staff in reviewing and editing drafts. Parents were invited to share their own photographs for inclusion within the book, which enabled us to show images from a diverse range of parents including Black and Asian parents and same-sex couples and to reduce anxiety from parents contacting our team about “what to expect” when their baby is born. The book will be easier to store in hospitals and can also be given with non-Sands memory boxes more easily than the previous large pack.

3. To grow as one strong, sustainable and effective organisation

2018 was an amazing year for our volunteers. We are so proud of them and the work they do.

Offering peer support

Sands’ peer support meetings are a lifeline for parents. The company of other bereaved families, and the skilled facilitation of our befrienders, creates a safe space for parents to talk about their baby, perhaps for the first time. It is a place where they can acknowledge their grief, discuss their feelings, and start on the path to building a new normal, after experiencing barely imaginable loss.

Improving bereavement care

Uniquely, Sands volunteers and supporters project the voice of bereaved parents, giving insights into good bereavement care based on direct experience. Well-designed bereavement suites give parents a calm, appropriate space to make memories with their babies while in hospital. Equipment such as cuddle cots was also donated to hospitals following fundraising by our volunteers and supporters.

Memorial events

A memorial event allows those who have experienced the death of a baby to remember and say their names out loud among others who understand what that means. Our wonderful volunteers allow families around the country to mark special occasions with thoughtfully curated memorial events: family picnics in the summer, Wave of Light events during Baby Loss Awareness Week, Lights of Love services at Christmas, plus further services (including non-religious events) across the year to include Easter, Mother’s Day, and Father’s Day.

Sometimes an event is as simple as a walk in the park, to talk and remember. It could be having the chance to light a candle, write a name on a stone, or place a flower in the stream. Our volunteers support bereaved families in a variety of ways, not only those who befriend, but those who organise the events, or fundraise to support them. If you want to learn more, please visit sands.org.uk/volunteers.

Thanks to our inspiring volunteers there are now four new or updated memorial spaces in Bristol, Cardiff, Wrexham, and Oxford. Here parents and families can sit, reflect, and remember their baby in a dedicated space.

4. To raise awareness of the issues relating to stillbirth and neonatal death

We have improved our understanding of our audiences and their needs by taking an insight led, evidenced based approach to help inform our awareness raising activity and campaigns so that we are even more effective as the voice of bereaved parents.

Moving forward Sands has built strong relationships and connections both politically and with clinicians and researchers. It is important now to develop wider relationships with key influencers and opinion formers, especially with regard to younger age-groups. This will enable us to raise awareness of the issues around stillbirth and neonatal death more widely and to start to break the taboo.

#FindingTheWords campaign

The Sands Awareness Month Finding the Words campaign succeeded in raising awareness of the scale and scope of baby loss, challenging perceptions and empowering individuals. Discover more at sands.org.uk/findingthewords

“Sands are the reason I’m still here. Without their support I would have given up when my son was stillborn at 29 weeks. I now have my rainbow baby, and I’m still here to care for my 2 sunshine children. Thank you Sands.” Amy

Read more about our campaigns

Bereavement at Work

Many bereaved parents do not receive the support they feel they need from employers after the death of a baby.

2700+ bereaved parents, grandparents, and other family members responded to our survey, to find out whether they were supported in returning to work after the death of their baby

Baby Loss Awareness Week

Sands led the political engagement aspects of Baby Loss Awareness Week 2018, briefing over 600 UK politicians with over 100 attending events or speaking during debates aimed at improving bereavement care.

In October, Baby Loss Awareness Week 2018 focused for a second year on improving bereavement care. This year the policy call was for implementation of the National Bereavement Care Path. The week was hugely successful helping more people than ever to commemorate their babies’ lives, create change and raise awareness of baby loss.

In England, the Minister committed to writing to CQC to ask about integration of the National Bereavement Care Pathway into their inspection frameworks. In Wales, the Cabinet Secretary committed to reporting back on progress being made to improve bereavement care.

Get involved and be part of Baby Loss Awareness Week 2020, visit babyloss-awareness.org

3. To grow as one strong, sustainable and effective organisation

Sands 40th Anniversary

Together we have achieved so much since Sands was founded by two bereaved parents in 1978.

Sands continues to grow as one strong organisation, with a real focus on building both the culture needed to form the foundation for ‘one Sands’, and also the processes and policies that will support this way of working.

By the end of 2018/2019 all Sands Groups had moved into a single banking structure, a significant achievement for those involved, and a real cornerstone for working as a single organisation going forward.

2018 marks 40 years since Sands was founded by two bereaved mothers, Hazelanne Lewis and Bel Mooney. Our interactive timeline, 40 years of support, captured key achievements, honouring everyone who has worked with us. We’ve shared 40 stories from bereaved families to break the silence around baby loss and highlighted 40 amazing volunteers at a special awards ceremony. Read more about Sands 40th anniversary

Support from companies is vital to helps Sands raise awareness and to fund our important work and corporate fundraising remains a crucial area of growth for Sands.

We were enormously inspired by the outstanding fundraising efforts of all our partners and their employees who took part in a variety of activities; from bake sales, challenge events, charity golf days, skydives and even a Directors jailbreak!

£450,000 raised this year from organisations choosing to support Sands

£50,000 highlights included an incredible donation from Nex Group Plc following an employee nomination and a host of companies choosing Sands as their Charity of the Year partner

Following the support they receive from Sands, bereaved parents, their family members, friends and colleagues are often motivated to nominate Sands to benefit from a corporate donation from their employer, either through matched funding following a fundraising event or for a one-off donation. In December 2018, Jackie Clarke’s Granddaughter Ruby, was stillborn at 41 weeks. Jackie worked for Brit Insurance and nominated Sands for a corporate donation.

“The loss of our beloved Ruby has left a hole in all of our hearts but without the support of our bereavement midwife and Sands we would not be able to get through this terrible time. Their support is invaluable and we hope these corporate donations can go to help other parents and families like it has for us.” Jackie

We were fortunate enough to receive £10,000 and subsequently chosen as one of Brit Insurance’s charity partners.

Ruby’s mother, Leonie was also keen to see how her employer Liberty Global Group could help. £5,000 received from Liberty Global Group following a nomination and application.

Our corporate fundraiser also supported a friend of the family who wanted to nominate Sands via her employer Avison Young and we are delighted to have very recently being awarded a grant. £2,500 grant recently awared by Avison Young Employee Community Fund.

Fundraising from Trusts and Foundations continues to be a key area of growth enabling Sands to maintain and develop its work supporting bereaved families and those affected by baby loss and saving babies’ lives.

We are incredible grateful to all the companies, Trusts and Foundations that supported Sands in 2018, with particular thanks to the following: NEX Group plc, Marks and Spencer plc, The Fertility Partnership, Hiscox Insurance, Stadco Ltd, Brit Insurance, Tozers Solicitors LLP, Institute of Cemetery & Crematorium Management (ICCM), Lloyds Banking Group, Xperience Group, Aspect Capital, Teddy’s Wish Ltd, Charles Stanley, Landsdowne Partners UK LLP, Liberty Global Group, Mumford and Sons Gentleman of the Road Fund, Artemis Charitable Foundation, Juditeras Charitable Trust, Lola Rose Foundation, Mrs M A Black Charitable Trust, The Sir James Reckitt Charity Rugby Group Benevolent Fund, One Family Fund, Truemark Trust, Lincoln Spiritual Association, The Jessie Spencer Trust, The Macfarlane Charitable Trust, R S Brownless Charitable Trust, Yorkshire Building Society, Charitable Foundation, Horizon Discovery, Turtle Tots, The Co-operative Group.

To speak with our corporate partnerships team contact corporate.partnerships@sands.org.uk

To find out how your company can support Sands, visit sands.org.uk/corporate-support

Research and prevention

Preventing baby deaths is central to everything Sands does, but we need to communicate more effectively about this core aspect of our work and better demonstrate the difference that we can make both to bereaved families now and to all families in the future.

Improving Bereavement Care

Standards of care are improving gradually, especially where bereavement midwives are employed. However, care remains inconsistent and there is a need for doctors and other staff to engage in bereavement care education and for Sands to widen our teaching methods. We have also learnt that employers need support to respond sensitively to staff who have experienced a pregnancy or baby loss. There’s nothing like the parent voice to bring about change as was highlighted through the work of the Parent Advisory Group and through the evaluation of the National Bereavement Care Pathway pilot sites.

Bereavement Support

We have been working to diversify the support we offer to serve the needs of all family members, including fathers and siblings. We want to reach out to families that are at higher risk of stillbirth and neonatal death, and offer variety of ways to support them. Our support events ensure they allow room for hope and growth as well as special time to remember babies who have died. This is following feedback from parents who wanted to leave events feeling uplifted, positive and supported for the future.

If you’d like to read more visit sands.org.uk/impact2019