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Stillbirth and Neonatal Death Charity Awareness Month: helping the NHS to support those who have experienced the loss of a baby

Posted: 30/06/2020

Experiencing a miscarriage, stillbirth or neonatal death is a hugely traumatic event for expectant parents and families. It is outside the expected natural order of life and it can therefore be more difficult to process what has happened and find a way to move forward. Bereaved parents can often be living with all-consuming grief, which can be compounded by trying to care for their other young children and coping with the effect of the loss on the wider family. However, the sad reality is that in 2018, around 5,000 babies were stillborn or died within the first four weeks of their lives, amounting to 75% of the deaths of children under 16 in that year. This means that baby loss is a real part of life and affects thousands of families every year.

The National Bereavement Care Pathway for Pregnancy and Baby Loss

A significant step forward in the care of families that have experienced stillbirth or the neonatal death of a baby came in the form of the National Bereavement Care Pathway for Pregnancy and Baby Loss (NBCP), which launched in 2017. The aim of the pathway is to ensure all bereaved parents are offered equal, high quality, individualised, safe and sensitive care in any experience of pregnancy or baby loss, be that miscarriage, termination of pregnancy for fetal anomaly, stillbirth, neonatal death, or sudden unexpected death in infancy up to 12 months. The pathway has been led by Sands, the stillbirth and neonatal death charity, working closely with a core group of partners consisting of other baby loss charities and professional organisations. The pathway was piloted by 32 healthcare operators in England, and it evidenced real changes for parents and professionals. As of March 2020, the pathway was live in 65 sites, and 123 out of 140 NHS trusts in England had formally expressed an interest in adopting the NBCP [1].

The death of a baby, at the same time as being hugely traumatic for the family in question, is also a very challenging and emotional time for healthcare professionals, which is why it is vital that they receive support to ensure that their interaction with a family that has experienced baby loss is positive and supportive. Healthcare professionals cannot take away the grief that parents feel at the time of the death of a baby, but with sensitive care, their conduct can have a lasting impact on a family’s wellbeing. Importantly, an independent evaluation of the NBCP concluded that it is having a positive impact, with 76% of professionals who were aware of the pathway agreeing that bereavement care had improved in their trust and 84% of parents agreeing that the hospital was a caring and supportive environment. The proportion of professionals who felt prepared to communicate with bereaved parents, and who felt supported to deliver good quality bereavement care, increased. It is important, therefore, that the remaining trusts where the NBCP has not yet been adopted are encouraged in this direction to ensure consistent bereavement care across the country.

Bereavement support outside the NHS

It is not only healthcare professionals who can have a significant impact on a person’s wellbeing following loss. The NBCP recognises this, and it is reflected in the pathway’s first online training module suitability to anyone in touch with bereaved families and parents, including professionals, friends, neighbours or colleagues. As the NBCP has not yet been rolled out fully across the NHS, there is still somewhat of a lottery as to how much specialist support families receive at this delicate period. In time, this inconsistency will be addressed but until then a number of charities provide invaluable support to families at their time of need.

Some of the ways in which these charities provide support are:

  • putting bereaved families in touch with other bereaved parents to provide support from someone who has experienced a similar situation;
  • through helplines that offer general support;
  • local support groups (provided by Sands and other charities); and
  • counselling services.

Counselling, in particular, has been shown to be effective at reducing the effects of trauma, and is often provided by the charity sector. Employers can also help by making sure they are educated on how to deal with baby loss and how to talk about this in the workplace, as returning to work after loss can be a particularly distressing and stressful time for a bereaved parent.

More progress in caring for families during loss came in the creation of Jack’s Law [2], which came into force in April 2020 and gave parents a statutory right to parental leave on the death of a child born after 24 weeks’ gestation, and who is under the age of 18 when they pass away. When a parent loses a baby at birth, they still have the right to maternity/paternity leave, but often only one parent (frequently the mother) utilises this, especially in the early days following the baby’s delivery. This additional leave under Jack’s Law provides the second parent, often the father, with a further two weeks to come to terms with their loss, over and above any parental leave they may have for the birth.

Helen Hammond, senior associate in the clinical negligence team at Penningtons Manches Cooper and specialist in cases involving pregnancy and neonatal care, comments: “The development of the National Bereavement Care Pathway, and the creation of Jack’s Law, show a gentle and gradual trend towards acceptance of the fact that when a baby dies in any circumstances, considerable time and support is needed to help a bereaved family move forward. I very much hope that this positive trend continues, in order to provide bereaved families with the support they need at such a traumatic time.”



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