Notification guidance for CDR professionals
“If you don’t have time to do it right, when will you have time to do it over?” John Wooden, American basketball coach
How to complete a Child Death Notification form effectively
The statutory Child Death Notification form is arguably the most important form in the whole Child Death Review (CDR) process. Not only does it notify you of the death of a child but, when completed well, it can also give you a comprehensive list of all those professionals who cared for the child during their life and immediately after their death. It is this list which enables the CDOP administrator to carry out the rest of the process. Without it, gathering information on the child is very challenging.
By completing a notification form well, you will be:
- Helping the CDOP to gather information more quickly and review the death more comprehensively.
- Ensuring that NCMD can analyse information in real-time so emerging issues in child death can be picked up and the scale of any problem established.
- Supporting families by ensuring that all necessary information is provided to the process which will review the death of their child.
- Saving yourself time as a well completed form will mean that you will not need to be contacted again to provide more detail.
Who to involve
The following flowchart may help with who to consider sending reporting forms to under different circumstances (it provides a list of who the child may have had contact with in their life, depending on the situation):
Find below our step-by-step guidance to completing an effective notification form:
The initial fields on the notification form relate to the details of the child who has died. This information should be available from their notes. Inclusion of a valid NHS Number is vital to ensure that both the CDOP and the NCMD do not double count any deaths that might be notified more than once. In rare circumstances, the child may not have an NHS number, if this is the case, please note this in the notification details section of the form and explain the reason why.
The second section
The third section
Details of death
Information relating to COVID-19
Case management section
The notification details box
- A description of the medical and/or mental health conditions the child had.
- A description of the circumstances in which the child actually died. This is important even if it is a child with a life-limiting condition or a neonatal death.
- A basic description of what interaction they had with services. This might be minimal if the child dies suddenly and did not have any pre-existing medical conditions. This will include non-health services e.g. social care and police. Statements about what didn’t happen are as helpful as those about what did e.g. the child was not known to social care or the police.
- For children with life-limiting conditions, it is helpful to see what advance care planning there was and what community services they had access to, as this will help the CDOP to know what other agencies they might need to contact for information.
Example of ‘notification details’ (child with a life-limiting condition): The child had been diagnosed with a brain tumor 6 months prior to his death, following a two week history of headaches and vomiting. They presented to the GP and was referred to paediatrics for further investigation. At that time, a scan revealed an astrocytoma. The child was referred to the oncology service and received treatment, However unfortunately the disease progressed and, following discussion with the family, it was decided that they would be re-orientated to palliative care. An advance care plan was completed with the family and their choice was for the child to die at home. They were discharged home one week before death with a package of community nursing support and some medication for pain relief. On the day before death, they deteriorated and required some additional pain relief. They died the following morning with parents present.
The alert function
- Any deaths where COVID-19 is known or suspected or any death where the virus or lockdown restrictions may have been a factor.
- Any death where an urgent, national public safety message is required e.g. home safety for children such as the use of blind cords and nappy sacks etc.
- Any death where there is a problem with a product design e.g. car seats.
- Any death where there has been an equipment malfunction, adverse drug reaction or other sentinel event in relation to the child’s death.
- Each alert is reviewed individually, together with any other information submitted in the notification.
- A decision is made about whether and what action should be taken.
- This decision will be based on how many cases are affected by the issue and the severity of the problem. Please provide as much detail as you have available on each case to enable us to decide what action we should take.
- If action is required to prevent further death, NCMD will communicate safeguarding messages and work with key organisations to share them across the sector. Where appropriate, we will also report the incident to NHS England and other national bodies to consider further action such as public health messaging eg the MHRA Yellow Card System.
- Finally, we also maintain and report an aggregate summary of this data to NHS England so that they can determine the scale of the issue and consider any further actions at national level.
IMPORTANT: When using our alert, please ensure that you also continue to follow all existing local and national guidance already in place.
The final section
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