1. Families who lose a child often find themselves involved in complex bureaucracy and may have considerable difficulty obtaining a clear account of why their child died.
Current Family Involvement
2. Families, who have closest knowledge of the lost child, have little opportunity to contribute to review processes. There are numerous anecdotal examples from front-line clinicians that the post-bereavement care, communication, timescales and outcomes of any review, are very unsatisfactory for many families. There continue to be long delays before families are informed of post-mortem findings and involvement of medical practitioners in appropriately 'translating' those findings is not consistent. In stark contrast to a model of professionals working with parents during their child's life, it seems that a family's views, information and questions are sometimes not afforded priority after their child has died. This compounds their grief and loss. The quotes below illustrate some of these parental views.
'Being told the outcome of the Post Mortem by police officers was inappropriate. They had no medical training and were therefore unable to answer our questions about the cause of death and the answer provided, namely that our son choked on his vomit was incorrect.'
'We feel very strongly that a family who loses a child needs special consideration. They need access to medical professionals. We had that through our own efforts rather than through any system that was in place. Without that we would have been completely lost.'
'We were left with the distinct impression that there was no protocol or accepted way of dealing with our tragic circumstances.'
Child Death Review Working Group
3. A Child Death Review Working Group was set up to explore current practice in the review of child deaths in Scotland, and to consider whether Scotland should introduce a system for reviewing the circumstances surrounding the death of a child, in order to identify preventable causes of death which could improve child mortality rates in Scotland in the future.
4. The Working Group met 5 times between September 2012 and November 2013. It carried out a mapping exercise of: reviews and audits currently undertaken in Scotland; the deaths examined; data sources and data dissemination; and communication and support for families. The Chair visited the University of Oxford to learn lessons from the MBRRACE-UK system (Mothers and Babies: Reducing Risk through Audits and Confidential Enquiries across the UK) and also visited the Child Death Overview (CDOP) manager in Merseyside (see paragraph 24). The information in this report was also drawn from publicly available online sources, discussions with staff involved in reviewing child deaths in Scotland and from a survey of Child Health Commissioners within Scotland.
5. The Working Group considered whether Scotland should introduce a national system for reviewing the procedures and circumstances surrounding the death of a child in order to improve:
- Local process/collation and coordination
- Communication and support to families
- Strategic process - learning from deaths and disseminating that learning.
6. The group consisted of representatives from NHSScotland, the Royal College of Paediatrics and Child Health, Police, Crown Office, Procurators Fiscal Service, Scottish Cot Death Trust, University of Dundee and the Scottish Government.
Email: Mary Sloan