Sands – what we do

Sands, the stillbirth and neonatal death charity, was founded in 1978. We were set up by a small group of bereaved parents devastated by the death of their babies and in particular by a complete lack of acknowledgement and understanding of the significance and impact of their loss.

Since that time we have supported many thousands of families whose babies have died, offering emotional support, comfort and practical help.

Yet in spite of medical advances, the shocking reality in the UK in 2011 is that every day 17 babies are stillborn or die within the first twenty eight days of life.

We operate throughout the UK and have three core aims:

• We support anyone affected by the death of a baby;

• We work in partnership with health professionals to ensure that bereaved parents and families receive the best possible care;

• We promote and fund research that could help to reduce the loss of babies' lives.

Introduction

Over the last five years, we have grown rapidly. In particular, our growth in terms of income, resources and profile has enabled us to accelerate progress in developing each of our three core aims.

We are now entering a very exciting time for the charity as we continue to grow and reach out to those we seek to support and those we seek to influence.

With so much going on and so much planned, we feel that now is an excellent time to share our strategy with you. We hope the strategy outlined below will enable all those interested in our work to fully understand where we are going and what we hope to achieve over the next three years.

Support

Bereavement support is at the core of everything that we do at Sands; support offered through the Helpline, through our network of trained befrienders, through our  range of leaflets and publications, and through our online forum and message boards. We will continue to strengthen all our existing support services with an emphasis on extending their range, accessibility and diversity.

In particular, we will:

Develop and improve the support offered through the Helpline, Forum and other on-line services; Update and expand the range of Sands support literature to include 12 updated or new booklets; Produce materials in different formats so that support information is available to parents who do not read; Continue to expand the range of other support materials offered.

 

Improving Bereavement Care

The publication and launch of the third edition of Sands Pregnancy Loss and the Death of a Baby: Guidelines for Professionals in June 2007 re-established the Sands Guidelines as an essential benchmark for good practice when caring for parents who have a childbearing loss. Training based on the Guidelines is now delivered by our team of trained parent facilitators to more than 600 health professionals every year in the UK. We will continue to develop our pivotal role in improving bereavement care.

To achieve this we will:

Develop, pilot and promote the Sands Audit Tool so that Maternity Units can assess the care that they offer to bereaved parents and identify the changes that are needed in order to improve services; Improve the quality and quantity of training on perinatal bereavement care for student midwives; Support, develop and inform parent-led and other training for health professionals throughout the UK, based on the Sands Guidelines; Develop and implement training sessions to be offered via the Deaneries throughout the UK to all trainee obstetric and gynaecology doctors in the UK; Produce and promote a national care pathway for care after a baby dies, before, during or shortly after birth.

 

Research and Prevention

The launch of our Why 17? campaign in each of the UK countries during 2009/10 brought home to government and to a much wider public the unacceptable reality that each day in the UK eleven babies are stillborn and six die within the first 28 days of life.

Our Saving Babies’ Lives Report, 2009 emphasised that many of those deaths are potentially avoidable while others clearly highlight the gaps in our knowledge and the need for further research. The challenge for us now is to play a lead role in identifying and encouraging research while also focusing on those cases that are preventable.

To that end we will:

Support the Clinical Study Group on Stillbirth (within the National Reproductive Health Research Network) and other research groups in the UK and internationally, to identify perinatal research priorities and to carry out studies and clinical trials; Establish a substantial rolling Sands programme of direct research funding in collaboration with other research funders; Formulate clear messaging/position statements on key issues in perinatal death prevention for different audiences including: parents, health professionals, policy makers, politicians and the media; Collaborate with government and leading professionals on specific working groups set up to reduce perinatal deaths in England, Northern Ireland, Scotland and Wales; Develop and deliver information resources and training for Sands Regional Coordinators, Groups and Members to enable them to raise issues around prevention in their local area.

 

Groups

Sands Groups are a unique and invaluable resource. Over the next three years, we will place a particular emphasis on increasing the support and training provided to all our Groups to enable them to play an increasingly integrated role in progressing the objectives outlined above. 

By 2014, we will have:

Three paid Coordinators in Northern Ireland, Scotland and Wales; Groups covering 70% of Maternity Units in the UK; A combined team of 40 trained parent facilitators, linked to Sands Groups, who are able to deliver the Initial and Advanced Befriender training and the Sands Guidelines training; Delivered the Advanced Befriender training course to all those who have befriended for over 3 years; Established a regular Group Leadership training course, linked to the introduction of a new Group handbook, in each of the seven Networks of Sands Groups.

 

In Summary

We have seen significant and sustained growth over the last five years. We now enjoy a higher profile, but also increasing responsibilities and expectations.

We are now in an excellent position to really drive forward, develop and implement our core aims and objectives towards 2014.

The progress described here, which we aim to achieve over the next three years, is well within our potential, as embedded at the heart of everything we do is the promise that we will always remain true to our core instinct, to support anyone affected by the death of a baby.

 “I feel I must write to say how much I wish I had been given some support when I had our stillborn son Peter on October 6^th 1949. My husband saw him and said he was the image of me and so through all the years I have a picture in my mind. Peter was buried in a coffin with a man in a cemetery in Lambeth. We sadly never had any more children and I am always very pleased when October 6^th each year is over…… It still hurts after all these years……                                    (Barbara Price – July 22^nd 1992)