Charities call for end to postcode lottery of care for bereaved parents

A coalition of more than 40 charities working to prevent baby deaths and pregnancy loss is today urging an end to the postcode lottery in bereavement care for parents.

Pregnancy and baby loss affects thousands of families each year across the UK and it is vital to offer bereavement care and support to anyone who has lost a child or pregnancy.

However, the care offered to parents in hospital is worryingly inconsistent. It can depend on where parents live, at what stage of pregnancy or birth the loss occurs, and whether individual healthcare professionals know how to respond.

Currently, fewer than half (46%) of maternity units in the UK provide mandatory bereavement care training, while one in three Health Trusts and Boards have no dedicated bereavement rooms in each maternity unit they cover.¹ And in neonatal units, 41% of services have no access to a trained mental health worker.²

The charities are now calling for:

1. All UK hospitals to be required to offer excellent bereavement care to parents.³

2. A member of staff appointed to lead on bereavement care in every hospital department where pregnancy loss and baby death occurs.⁴

3. Bereavement rooms to be available and accessible in all hospitals.

4. All health and social care professionals to receive the highest standard of bereavement care training.⁵

The call is timed to coincide with the start of Baby Loss Awareness Week (9-15 October) when bereaved parents, their families and friends, unite across the world to commemorate their babies’ lives.

Dr Clea Harmer, Chief Executive of Sands (Stillbirth and neonatal death charity), said: “It is long overdue that the NHS makes the provision of excellent bereavement care mandatory across the UK. Despite claims that it is a priority, there is still a shortage of dedicated bereavement rooms and too few health care professionals are getting the essential training they need to sensitively support grieving parents.

“Good bereavement care is rooted in simple acts of kindness and respect, giving a family whose world has fallen apart the time they need with their baby, and minimising anything that could add to their suffering. So it is very worrying that parents have told us they can hear the sounds of crying babies, and mothers and fathers congratulating each other on the birth of their healthy babies, while they grieve.

“We believe every parent should be offered the bereavement support they need, when they need it, for as long as they need it. One way to make this happen is for a National Bereavement Care Pathway⁶ to be included in the Government’s Mandate to NHS England, and to ensure a similar approach is taken across the UK. I urge all those responsible to make sure no parent is left to cope with the death of their baby alone.”

Baby Loss Awareness Week helps raise awareness of how pregnancy and baby loss affects thousands of families each year across the UK. It is a unique opportunity to help families remember their babies, whether it be in public or private, and feel less isolated and alone by giving them the opportunity to join with others.

The Week culminates in a global Wave of Light at 7pm on 15 October when candles will be lit across the world to remember all those babies who have died too soon.⁷ Landmark buildings will be lit up pink and blue – the colours of Baby Loss Awareness Week.⁸

For further information on Baby Loss Awareness Week 2017 visit: www.babyloss-awareness.org

Notes to editors

1. Audit of bereavement care provision in UK maternity units (Sands 2016). Survey responses were obtained from 79 Trusts and Health Boards across the UK, covering at least 364, 2016 deliveries, 1453 stillbirths and 543 neonatal deaths in 2015. Data was collected from June- August 2016.
2. Bliss baby report: Hanging in the balance (Bliss, 2015).
3. Parents’ experiences of care can stay with them for a lifetime, and it is important that staff have support and training in order to deliver appropriate standards of care. (Kenworthy and Kirkham, 2011). Parents who’ve experienced pregnancy loss or the death of a baby have shared their views of good bereavement care at: https://babyloss-awareness.org/experiences
4. Different types of pregnancy losses and the death of a baby include ectopic pregnancy, early or late miscarriage, stillbirth, neonatal death, Sudden Infant Death Syndrome, termination for medical reasons (foetal abnormality or risk to mother’s health). Pregnancy loss or baby death can occur in a range of settings, including the gynaecology ward, Early Pregnancy Unit, labour ward, SCBU Special Care Baby Unit, NICU Neonatal Intensive Care Unit, A&E, Scanning department, or at home.
5. Professionals who may be involved in caring for bereaved parents and families include doctors, obstetricians, all midwives (including students), nurses, sonographers, heath visitors, healthcare assistants, counsellors, support workers, and social workers.
6. The National Bereavement Care Pathway is a healthcare initiative that aims to improve the quality of bereavement care experienced by parents and families at all stages of pregnancy and baby loss up to 12 months. The Pathway is being managed by Sands (Stillbirth and neonatal death charity), ARC (Antenatal Results & Choices), Bliss, Lullaby Trust, and the Miscarriage Association; and has the backing of the Department of Health and the All Party Parliamentary Group on Baby Loss. Eleven sites in England will trial the use of new materials, guidelines and training for professionals to help improve the care bereaved parents receive.
7. Anyone can join a digital Wave of Light from 7pm on 15 October by posting a photo of their candle to Facebook or Twitter with the hashtag #waveoflight.
8. Buildings that have confirmed they will be lit pink and blue for Baby Loss Awareness Week include: Balmoral Hotel Edinburgh, Birmingham Town Hall and Central Library, Cardiff City Hall, Chorley Town Hall, Colchester Castle, Coventry Cathedral, Ice Arena Wales, Steve Prescott Bridge (Liverpool), The Kelpies (Scotland), Millennium Bridge (Newcastle-on-Tyne), White Rose Shopping Centre (Leeds), York Hospital.

Further information:

Please contact Lee Armitt, Press and PR Officer on 020 3897 3449/07587 925411 or media@sands.org.uk with any questions or to arrange an interview with Dr Clea Harmer.

Baby Loss Awareness Week participating charities:

Abigail’s Footsteps, Aching Arms, Action on Pre-eclampsia, ARC (Antenatal Results and Choices, Bliss, Cariad Angel Gowns, Child Bereavement UK, CMV Action, The Ectopic Pregnancy Trust, The Last Kiss Foundation, Group B Strep Support, ICP Support, Jude Brady Foundation, Kicks Count, Life After Loss, The Lily Mae Foundation, The Lullaby Trust, Making Miracles, Miscarriage And Stillborn Support, Miscarriage Information Support Service, The Miscarriage Association, The Multiple Births Foundation, National Maternity Support Foundation, Petals, Pregnancy Crisis Care (Plymouth & SE Cornwall), SANDS Lothians, Scottish Cot Death Trust, Sands (Stillbirth & Neonatal Death charity), SiMBA, Spinal Muscular Atrophy Support UK, Tommy’s, The Twins and Multiple Births Association (Tamba), Teddy’s Wish, Together for Short Lives.

Full contact details of all the charities is available from https://babyloss-awareness.org/charities/