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Quality of investigations into unexpected deaths of infants and young children in England after implementation of national child death review procedures in 2008: a retrospective assessment

Members of the NCMD Steering Group, Peter Fleming and Peter Blair, co-authored this study published on 27 September 2019 in the BMJ Journal ‘Archives of Disease in Childhood.’

The retrospective assessment looks at the quality of investigations into unexpected deaths of infants and young children in England after implementation of national child death review procedures in 2008.

Read the abstract details below and click the links for full information.

Year of sudden unexpected death (91 deaths). SIDS, sudden Infant death syndrome; SUDC, sudden unexplained death in childhood.

 

Objectives

In 2008, new statutory national procedures for responding to unexpected child deaths were introduced throughout England. There has, to date, been no national audit of these procedures.

Study design

Families bereaved by the unexpected death of a child under 4 years of age since 2008 were invited to participate. Factors contributing to the death and investigations after the death were explored. Telephone interviews were conducted, and coroners’ documents were obtained. The nature and quality of investigations was compared with the required procedures; information on each case was reviewed by a multiagency panel; and the death was categorised using the Avon clinicopathological classification.

Results

Data were obtained from 91 bereaved families (64 infant deaths and 27 children aged 1–3 years); 85 remained unexplained after postmortem examination. Documentation of multiagency assessments was poorly recorded. Most (88%) families received a home visit from the police, but few (37%) received joint visits by police and healthcare professionals. Postmortem examinations closely followed national guidance; 94% involved paediatric pathologists; 61% of families had a final meeting with a paediatrician to explain the investigation outcome. There was no improvement in frequency of home visits by health professionals or final meetings with paediatricians between 2008–2013 and 2014–2017 and no improvement in parental satisfaction with the process.

Conclusions

Statutory procedures need to be followed more closely. The implementation of a national child mortality database from 2019 will allow continuing audit of the quality of investigations after unexpected child deaths. An important area amenable to improvement is increased involvement by paediatricians.

This is an open access article distributed in accordance with the Creative Commons Attribution Non Commercial (CC BY-NC 4.0) license, which permits others to distribute, remix, adapt, build upon this work non-commercially, and license their derivative works on different terms, provided the original work is properly cited, appropriate credit is given, any changes made indicated, and the use is non-commercial. See: http://creativecommons.org/licenses/by-nc/4.0/.

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Vicky Sleap, NCMD Project Manager, on the importance of the Child Death Review Process. 

When I first started to work in the world of child death reviews, almost a decade ago now, I was very nervous about telling people what I did for a living. I worried about mentioning the word “death” particularly in relation to children. I worried about whether the person I was speaking to had lost a child and how they would respond to my role.

People often say when children die it is against the natural order of things, we should not out live our children and the pain caused by this is one of the worst things any family can experience. Undoubtedly these things are true, however as I began to understand more about the child death review process and its value my perception changed.

I started to see what is gained by the process for both family members of the children who have died and the professionals who help to care for those children during life and after death. I reflected on the power of this process to be the voice of the child after their death, to help those who remain to learn and become better at what we do. Not just in terms of our medical understanding but in terms of our understanding of all their needs and the needs of those around them.

Shortly after I started in this role, I was speaking to a friend of mine who tragically lost his son in a road traffic collision a number of years ago. He lives in another country and so the process of reviewing the deaths of children is a little different there. I explained about what happens in England and the kind of things we have learned from the deaths of children in these circumstances. He wished that such a process had existed when his son died, and he told me that if we could learn something that meant another parent did not have to go through what he had gone through, that would mean his son’s death was not in vain.

Over the years I have had the privilege to speak to a number of bereaved parents who have described similar feelings and my view of the process now is that we have a duty to those families who bear the weight of the loss of their children to learn from these events. I knew that the work being done by Child Death Overview Panels was important and valuable, but I also knew that because the panels existed in local areas, we could not see the whole picture as the information collected and lessons learned were not altogether in one place. Imagine that? You have this huge resource of information held in lots of different places and it has led to improvements for children in local areas, but what a huge difference it would make if those improvements were made in every area. How many children’s lives might you make a difference to then?

So, the commissioning of the National Child Mortality Database is the solution to this problem. To me it represents our commitment to improving the lives of young people, it is a tool in our arsenal to combat child mortality and most importantly it is the collective voice of all the children who have died helping us to be better.

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Steps we are taking to improve NCMD and eCDOP

During the first few months after our launch, we received a lot of extremely valuable feedback from CDOPs who have been in touch with us directly to let us know of any difficulties or problems arising from the system. As a result of this, we will be undertaking a lot of development work on NCMD and eCDOP over the next few months. For details of these changes and improvements please visit our website. 

If you spot anything else which you feel could be improved or changed, send your recommendation to ncmd-programme@bristol.ac.uk. 

This includes: 

• There will be some updates made to fields to make sure that the ones required for the LSCB1 return are mandatory in both the NCMD portal and eCDOP.
• There will be changes to what you can enter in some fields to make it quicker for you to complete them. This will also help us with standardising outputs and thus with data analysis. For example, the birth weight field will be changed so you can only type numbers rather than numbers and letters in the field. We will also be requesting that the birth weight is recorded in grams only.
• We are developing an additional functionality for eCDOP to allow a CDOP in the child’s area of death, to take ownership of a case and review it at their panel instead of at the CDOP of residence panel. This is to accommodate the new national guidance which states that by agreement between areas, another CDOP can panel the case if, for example, all the care has been received in that area.
• A new organisation list of hospitals and hospices has been added. We were aware that the previous list was difficult for people to navigate and are pleased to have been able to respond to this feedback. We have worked hard to try and identify all the hospitals and hospices you may need to select. However, please let us know if there is one missing that you want us to add by emailing ncmd-programme@bristol.ac.uk.
• The categorisation of death list will be re-ordered so it is in the same order as the on the statutory analysis form. It will also include exactly the same wording as on the analysis form including correction of spelling of the word “malignancy”.

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Following her recent attendance of the National Network of Child Death Overview Panels (NNCDOP) meeting on 13 and 14 March in Birmingham, Sylvia Stoianova reflects on the complex emotions brought about by change.

Spring is hope, new life they say, time for planning and anticipation. It can also bring different, more complex emotions that are also intertwined with memories of happy moments and new beginnings that will never be again.

This spring was different for me as well. This spring I had the honour to closely connect with a truly special community when I attended the annual NNCDOP conference on 13-14 March in Birmingham. A month after this event I still feel its influence on me, I am still hearing the words of the speakers, feeling the emotions they brought me and still reflecting on what I have learnt and how this learning can guide me to do better work. I heard some of the most inspiring speakers I have ever had the privilege to listen to. I know that they will be my motivation in this work and anything else I take on in future; with their drive, optimism and faith. Despite the extreme sorrows that some of them went through as parents and the incredible challenges and trauma they’ve experienced as professionals they still stand up and speak to all of us with their strong and empowering voice. We all have the duty to listen to what they have to say, our duty as citizens, professionals and as human beings.

Amongst the talks that had the strongest impact on me were that of Detective Chief Inspector Jonathan Holmes who talked to us about cognitive closure, the need for it to be recognised and appropriate training provided for child death investigations. Fiona Spargo-Mabbs spoke about the loss of her son and I highly recommend reading more about the Daniel Spargo-Mabbs Foundation founded by Fiona and her husband for more information about their highly important and admirable work. Kath Thompson introduced us to her work with the Merseyside Youth Association on training children and young people for raising awareness for suicide. Kath talked about how important is for suicide to be on everyone’s radar when working with young people and that professionals need to realise that every young person is at risk.

The Annual NNCDOP conference was a wonderfully organised event – well thought out, planned and attended; with an impressive programme of inspiring, thought provoking and educational lectures and workshops. The atmosphere was charged with positivism, dedication and care. But at the same time, it felt understated, non-demonstrative; it was simply real, down to earth. It was obvious to me, this being my first NNCDOP conference, that everyone was united by the same aim and drive – to make things better.

When speaking about the National Child Mortality Database my colleague, Vicky Sleap, often says that the national data collection and analysis system was so long waited for that it became like a unicorn, everyone believes in it, but no one has ever seen one. But this spring was not only different for me. It became symbolic for a whole nation as with it NCMD came to life: a true awakening, a new beginning, long anticipated and hoped for. On 1st April the NCMD electronic system was launched. We can truly look now into a future of better knowledge, learning and understanding from across the whole country to empower policy makers so they can drive improvements in services and thus reduce child mortality in England.

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This was a complex piece of work which required a detailed understanding of legislation relating to the
child death review process, GDPR and other legal principles, including the Common Law Duty of
Confidence.

As a result of this collaboration we were able to establish a clear and
binding legal obligation on the child death review partners (local authorities and
clinical commissioning groups) to transfer data to the NCMD system.

The three documents that establish this are:

• The Children Act 2004
• Working Together to Safeguard Children (2018)
• The Child Death Review Statutory and Operational Guidance.

These documents establish the appropriate legal basis for the NCMD system to hold the data provided to it by CDOPs.

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