Bereaved families involved in Child Death Reviews say the process left them feeling ‘utterly bereft’ and that their child ‘no longer mattered’, according to a report carried out by Child Bereavement UK. One family told the charity: ‘We would have found comfort even in knowing that meetings were taking place in which our son and what happened to him was being discussed.’

Now Child Bereavement UK, which supports families when a child grieves or when a child dies, is calling for the standardisation of roles and training for keyworkers assigned to families in order to improve communication and support. 

In England and Wales, a Child Death Review takes place following the death of any child aged under 18. Managed by Child Death Overview Panels (CDOPS) the aim of the review is to determine whether the death was preventable, if there are lessons to be learned, and if there are any causes for concern or need for further investigations.

While families are not directly involved in any information gathering or investigations, a keyworker is assigned to be a single point of contact, providing information and support throughout the process.

Child Bereavement UK’s report, titled Supporting family involvement with the Child Death Review Process, surveyed 32 Child Death Overview Panels (CDOPS) via a questionnaire which asked about the role, responsibilities and training of keyworkers and how the role is funded. The responses revealed wide variations between CDOPS with keyworkers coming from a range of professional backgrounds with differing levels of expertise and training in supporting bereaved families. 

The report recommends that:

• All Child Death Overview Panels should follow the 2018 Statutory and Operationa Guidance in respect to the appointment of Child Death Review key workers and ensure that every bereaved family has this individual support.
• Consistent support for families from a key worker or key workers should start as soon as possible after a child has died (and before if a child is dying) and continue until the conclusion of the CDOP process.
• The role of key worker(s) should be adequately and appropriately funded – this should be a discreet and ring-fenced budget line.
• All those carrying out the key worker role should have a role description and person specification. There should be a nationally agreed, standardised version.
• All those carrying out the key worker role should have access to bereavement training which is regularly refreshed in-service.
• All those in the key worker role should use a standard, agreed contact tracker, for example, the tracker for contact after an expected death on the National Child MortalityDatabase (NCMD) website.

 Maninder Hayre, Child Bereavement UK’s Director of Services and Partnerships said:

 “While we welcome the role of the Child Death Review in terms of improving future outcomes for babies and children, the process is nevertheless daunting and unfamiliar for families. The death of a baby or child is one of the most devastating things a family will ever have to face - the role of the keyworker is vital in ensuring families are informed and considered at such a difficult time. The level of support a family can expect should be consistent wherever you live, and adequate training and standardisation of roles will go some way to ensuring this is the case.”

Child Bereavement UK is grateful to all the families who have generously shared their experiences, and to the following professionals for their help and advice with this report: Dr Jo Garstang, University of Birmingham; Professor Anne-Sophie Darlington and the QUINTET team at University of Southampton; Vicky Sleap, Deputy Director of the National Child Mortality Database;  Nikki Speed, CEO of SUDC-UK; Addleshaw Goddard and Weil, Gotshal & Manges LLP; and all CDOPs and their staff who responded to our requests.

Read the full report here. 

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Notes for Editors

Child Bereavement UK helps families to rebuild their lives when a child grieves or when a child dies. We support children and young people (up to the age of 25) when someone important to them has died or is not expected to live, and parents and the wider family when a baby or child or any age dies or is dying. We provide training to professionals in health and social care, education, and the voluntary and corporate sectors, equipping them to provide the best possible care to bereaved families.

www.childbereavementuk.com