During Sands Awareness month, Charlotte Bevan, provides a guest blog explaining the theme of this year's month 'Together we are Sands'.
June is Sands Awareness Month when Sands raises the profile of the impact of baby loss on families across the UK. This year our Together We Are Sands campaign highlights how every aspect of the work to save babies’ lives and improve care for parents is a collective commitment from health care professionals, researchers, policy makers, family supporters and indeed parents themselves.
13 babies a day
Thirteen babies die every day in the UK before, during or shortly after birth; that’s a baby death every 108 minutes. Behind each statistic is an individual family, trying to make sense of how and why their lives have irrevocably changed.
‘I miss my baby every second of every day and even though the pain will ease and the hurt will fade I will always, for the rest of my life, not have my baby’ Mother
While rates of baby deaths have reduced over the past decade, rates for some groups remain inflated, with Black and Asian babies having as much as two times more risk of dying. The same is true for families living in poverty. No baby should have a higher risk of dying because of their parents’ postcode, ethnicity or income; understanding why and eradicating these unacceptable inequalities takes collaboration, research, listening and innovation.
Understanding why babies die
Sands has been funding and advising research around baby deaths for over a decade. We have supported over 100 individual researchers with a focus on everything from the function of the placenta to care for the new-born. It may work to support public health messaging so that women understand what to look out for in terms of pregnancy risks, from infection to pregnancy-specific conditions. Knowing what the risks are and therefore what care to expect can be potentially life-saving.
Countless national reports and enquiries over the past decade have highlighted that care is often not personalised to each and every woman, that units can develop unsafe cultures of practice including an unwillingness to really learn when things go wrong. The litany of reports highlighting these issues is long: the Kirkup Report, the Each Baby Counts programme of work, the confidential enquiries run by MBRRACE-UK and most recently the Ockenden review. If little is done to understand why each and every baby dies, little is learnt about how to prevent tragedy for the next family or baby.
Reviews and investigations
This is why Sands is working to improve the way stillbirth and death reviews and investigations, the mandated (in England) processes that are undertaken when a baby dies to understand why the baby died. We have supported and been instrumental in the roll out across the UK of a new standardised Perinatal Mortality Review Tool (PMRT). This promotes a robust process of review of baby deaths that can identify what happened and where care should improve for the next family.
‘The review made us feel people cared’ Mother
Crucially the PMRT puts parents’ voices at the heart of the review into why their baby died. After all they are at the centre of their care and have the most at stake in understanding what happened. Our new online Parent Engagement in Review training webinar showcases the resources available to staff to ensure parents’ views and concerns about their care leading up to the death of their baby can be meaningfully captured, should parents want to engage.
Much of the training we do for health care professionals is about communication. Empowering staff to have the confidence to speak with and support parents and ensuring parents know what to expect. One of the greatest barriers to communication between parents and hospital staff is the unwillingness of staff to say the words ‘I’m sorry..’ in those moments when a death is diagnosed. This is often for fear of litigation. Sands’ ‘Saying Sorry is Not a Blame Game’ statement in our training module, illustrates that nowhere does ‘saying sorry’ imply legal liability for the death of a baby. It is simply an expression of human empathy at a tragic time in a parent’s life. Importantly parents value this expression of compassion, not just from family and friends but from hospital staff as well.
Duty of Candour
Of course, if there has been harm to parents or their baby that lead to a death or injury, there is a Duty of Candour to be transparent about aspects of poor or unsafe care that may have contributed to the outcome and an apology is therefore necessary. Sands is supporting the DISCERN study, research looking at how to improve open disclosure in these challenging situations when both health professionals fear litigation and professional isolation, and parents often feel the NHS acts defensively. But if being defensive means failure to learn and save a future life then not being open compounds tragedy upon tragedy. And for parents whose baby has died, not knowing why has the potential to cause further psychosocial harm.
‘Parents need the truth to move on through their grief. Without it, grieving is 100 times harder.’ Father
Bereavement care training
The DISCERN study will publish in the autumn and this fresh evidence on how to improve open disclosure and review processes in the UK will be embedded in our updated webinars. These will be available from our new training microsite alongside our Bereavement Care training, a space of expertise Sands has occupied for almost four decades, and which is now being embraced nationally the form of the National Bereavement Care Pathway. The NBCP covers not only stillbirths and neonatal deaths but care for families who experiences other types of loss. It’s estimated that one in four pregnancies ends in miscarriage and that 5,000 pregnancies are terminated for medical reasons every year.
There is a traditional African saying that ‘it takes a village to raise a child’. We believe it takes a whole community to save a child. That’s why our June awareness month is called Together We Are Sands.
We have carried out research into the professional duty of candour. You can find all our research here, as well as links on to guest blogs on candour.