Three years of national data about why babies die in England is either missing or of such poor quality it will not be reported on, according to the Health Quality Improvement Partnership (HQIP is the NHS agency which commissions the national Maternal, Newborn and Infant Clinical Outcome Review Programme, MNI-CORP)[i]. This will effectively mean a three year gap in an important national reporting system which has been in place for several decades.

The importance of continuing the work of the programme was a key demand in Sands’ Preventing Babies’ Deaths report in 2012. At the time of the report’s publication, the work of the MNI-CORP  was suspended. A contractual transition period meant that, for at least a year, the future direction of the work was uncertain. As a result collection of perinatal mortality data for England (2010–12) was incomplete and its subsequent analysis is now not possible. Three years of missing national audit data means that we have only limited information on the deaths of around 15,000 babies, each one of which represents a devastating loss to families.  

Elsewhere in the UK, reporting systems have succeeded in collecting and reporting national data. Perinatal deaths occurring in 2010, 2011 and 2012 in Wales have been reported on[ii] [ii2]and 2010 and 2011 in Scotland[iii], [iii2]

While England’s Office for National Statistics (ONS)[iv] collects a limited data set on babies who die before or shortly after birth, the MNI-CORP has broader significance. It collects more detailed information about babies who die and draws up both local and national pictures of what is going on, including the risks associated with mortality (lifestyle and demographic), as well as those associated with pregnancy and pre-existing maternal conditions. 

Through its national confidential enquiries, the MNI- CORP highlights the significance of poor care in babies’ deaths across the UK. Previous confidential enquiries have suggested that if care was improved, a significant proportion of stillbirths would be avoided.

The contract for the MNI-CORP work, formerly undertaken by the Centre for Maternal and Child Enquiries (CMACE), was reviewed in July 2011, but not allocated to a new provider until 30th May 2012. The new providers are a team from Oxford, Leicester, Liverpool and Birmingham Universities, University College London, a general practitioner from Oxford as well as Sands. The team is called MBRRACE-UK [i] (Mothers and Babies Reducing Risk through Audit and Confidential Enquiries) and includes clinicians, epidemiologists and a bereaved parent.

While there is no underestimating the significance of this break in data, HQIP have confirmed they are committed to supporting the work of the new providers: “While there has been a break in the MNI-CORP perinatal mortality data collection … HQIP, the IAG [HQIP’s Independent Advisory Group]  and the funders are wholly committed to supporting the current National Clinical Outcome Review Programme carried out by the new contractor MBRRACE-UK, to ensure data on deaths occurring in 2013 and onwards are collected and analysed in order to stimulate improvements in healthcare delivery for mothers and babies in the future.”

Sands were pleased to be invited to provide the parent voice to inform the work going forward; both Janet Scott and Charlotte Bevan are lay representatives and full members of the MBRRACE-UK collaboration. Our topic submission for confidential enquiry for the 2015 report on ‘Unexpected antepartum term stillbirth’ was successful and investigations into these deaths will begin in 2014. It has been almost 20 years since the UK’s over 4,000 stillbirths have been reviewed nationally and we hope that the enquiry will go some way to understanding how care for mothers and babies might be improved in the UK to prevent  tragic and avoidable deaths.