Listening to Parents, an in-depth survey of women’s and their partners’ experiences of care when their baby was stillborn or died shortly after death, has highlighted huge gaps in care and provision. While some of the 720 parents who responded said their care was sensitive and supportive care, others did not.
“Doctors, midwives and hospital staff were extremely gentle with us and all decisions made were without pressure.”
“I felt my consultant was too busy to care. Consultant simply said if you lose it you lose it. Nothing you can do. Very insensitive.“
Around two-thirds of parents whose baby died before labour suspected something was wrong, but around half of these parents felt their concerns weren’t listened to or taken seriously when they contacted a health professional.
Too many bereaved women stayed in rooms within earshot of newborn babies and women in labour (more than half in the case of mothers of stillborn babies). And when women returned home, some reported that the health professionals who visited them were clearly uncomfortable handling their situation. Many were not given information about how to cope with breast milk production, or contacts for counselling should they want it.
The report will inform improvements to Department of Health policy that must be made to avoid the postcode lottery of bereavement and postnatal care.
At Sands we have already incorporated some of the report’s main findings into our bereavement care training programme for professionals. Our workshops and courses cover many of the key areas flagged in the report as being in need of improvement, including:
- Communication skills and breaking bad news
- Acknowledging the needs of partners
- Logistics of leaving a room after receiving bad news – i.e. not having to walk past pregnant women or other patients
- Providing a suitable environment to give birth that is out of earshot of crying babies and labouring women
- Giving written information on post mortem consent
- Giving information on managing breast milk production
- Giving information on counselling services
- Awareness of high levels of anxiety/depression months after a loss - setting the context for care in a subsequent pregnancy
We have already seen evidence that our training is beginning to address some of these gaps in care highlighted in the report. For example, at the end of a recent workshop delivered at Borders General Hospital in Melrose, the following ‘best practice points’ were created by the midwives to put into action on their unit:
- Make use of the Sands Teardrop sticker alert system for medical notes
- Look at the birth environment including soundproofing the room
- Have a clear policy on ensuring lactation advice is offered
- Involve all levels of midwives in the care of bereaved parents
- Put in place a system for midwives to debrief difficult cases
The full report from the Listening to parents study, which was carried out by a team from the National Perinatal Epidemiology Unit at Oxford University and published in April 2014, can be found at www.npeu.ox.ac.uk/listeningtoparents. The team contacted all women who’d registered a stillbirth or neonatal death in England between 1 Jan and 31 March 2012 or 1 June and 31 August 2012 for the survey, and 720 women felt able to complete and return the study questionnaire.
For details on the Sands bereavement care training programme please contact training@uk-sands.org.