Sands was founded in 1978 by a small group of bereaved parents devastated by the death of their babies, and by the total lack of acknowledgement and understanding of the significance and impact of their loss.
Since then, Sands has played a key role in raising public awareness of baby death across the UK, supported thousands of parents whose babies have died, worked closely with Health Care Professionals to improve the care bereaved parents receive, and funded much social and medical research to help better understand why babies die and prevent such tragedies.
Today, despite Sands’ successes, there is still much work to be done, not only in supporting anyone affected by the death of a baby, but in striving to reduce the baby death rate which remains unacceptably high in the UK.
In the mid-1970s, Bel Mooney, a journalist, and Hazelanne Lewis, a psychiatric social worker, both gave birth to stillborn babies. At that time in the UK, most parents were not allowed to see or hold their babies, no photographs were taken, parents were not told where their babies were buried, and they could not put their baby’s name on the stillbirth certificate. Bel wrote an article in the Guardian describing her experience, and Hazelanne then wrote to national newspapers asking bereaved parents to contact her and share their stories. An avalanche of replies from all over Britain revealed a vast unrecognised need for support and information for parents and families.
Hazelanne founded Sands, first called the Stillbirth Association, and later the Stillbirth and Perinatal Death Association (SPDA)
First successful campaign led to the Registrar General changing the name of the Certificate for Disposal of Stillborn Babies to Certificate for the Burial of Stillborn Babies.
First booklet was produced for bereaved parents, in collaboration with MIND, the mental health charity.
SPDA became a registered charity, with 50 self-help groups in the national network.
SPDA opened an office in London, and successfully campaigned to change the Stillbirth Registration Certificate so that parents could now include the name of their baby.
SPDA changed its name to Sands, the stillbirth and neonatal death society.
Sands expanded its support services, producing a new leaflet for parents and another for health professionals. Around 4,000 parents were supported by local Sands befrienders, and a further 1,500 supported by head office.
First edition of the Sands guidelines for professionals – Miscarriage, Stillbirth and Neonatal Death: Guidelines for Professionals – was produced.
Sands successfully campaigned to change the legal definition of stillbirth was changed from 28 weeks (set in 1953) to 24 weeks. Since then, any baby stillborn at or after 24 weeks gestation is recognised in law as an individual whose birth and death must be registered and who must be formally cremated or buried.
Sands launched the teardrop sticker scheme: a discreet sticker to be attached to a bereaved parent’s medical notes so that health professionals are informed of their situation and do not cause unnecessary hurt.
Sands Awareness Week launched, to raise funds for the helpline service, now handling 4,000 calls a year.
The Sands Garden opened at the National Memorial Arboretum in Staffordshire: a Sands memorial service takes place there in June every year.
Sands also joined a working group run by the Royal College of Nursing Gynaecology Nursing Forum which produced a report on the disposal of the bodies of babies lost early in pregnancy: Sensitive disposal of all fetal remains: guidance for nurses and midwives. This raised awareness and changed hospital practice.
The first Lights of Love evening was held in December at St Paul’s Church in Knightsbridge.
Seven Sands regional networks were established so that groups could share expertise, support each other, strengthen communication, and increase their effectiveness.
Sands published the third edition of its Guidelines and launched a national training programme for professionals based on the standards set in the Guidelines, and supported and sustained by local groups. Sands also hosted the third annual conference of the International Stillbirth Alliance (ISA), in Birmingham, bringing together parents, health professionals and researchers from 26 countries to try to understand and reduce the incidence of stillbirth and neonatal death.
Why17? campaign was launched to raise public awareness of the 17 babies who die every day in the UK and of the profound effects on parents of losing a baby, and to raise funds for Sands’ work.
Saving Babies’ Lives report was published and launched in each of the four UK governments, for the first time bringing together in one document all the key facts and issues surrounding stillbirth and neonatal death.
Successful lobbying in Scotland led to Scottish Government setting up the first-ever Scottish Expert Stillbirth Sub-group, including representation from Sands and with a mandate to reduce the number of stillbirths in Scotland.
Sands’ Seeing and Holding campaign to ensure that parents should always be offered a choice about whether or not they want to see and hold their baby leads to a change in NICE guidance.
Sands launched the Audit Tool for maternity services: Caring for parents whose baby has died, accredited by the Royal College of Midwives, which aimed to help those responsible for commissioning and providing maternity services to assess the quality of care they provide to bereaved parents, and identify any improvements that are needed.
Preventing Babies’ Deaths - what needs to be done report published, leading to the first-ever Stillbirth Workshop co-hosted by Sands and the Department of Health, and a government commitment to an ongoing programme of initiatives to look at preventing perinatal deaths in England.
Further lobbying by Sands saw the establishment of the National Stillbirth Group for Wales by the Welsh Government, with a specific priority to reduce perinatal mortality.
The Sands Post Mortem Consent Package launches, responding to a huge need for improving the consent process for both bereaved parents and professionals, given the wide discrepancy in UK practice.
Continued lobbying saw the British Government commit to a pledge to reduce stillbirth in the UK by 50% by 2030, and by 30% by 2020.
Sands worked closely with EastEnders writers and actors and the BBC to portray a stillbirth on the popular soap opera. As a result of this, Rakhee Thakrar, the actor whose character’s baby died, became a Sands Ambassador.