Our Chief Executive, Nick Carroll, has written a foreword introducing a new report into child deaths in England issued by the National Child Mortality Database (NCMD) today.
Referring to the findings as “deeply worrying”, the report focuses on national trends relating to the circumstances of death surrounding children and young people with life-limiting conditions.
A shocking overreliance on the goodwill of teams caring for seriously ill children to work out of hours is among several areas of concern raised in the report. Others include a lack of 24/7 end of life care at home and issues with access to medications, advance care planning and named medical leads.
This is the first time that data surrounding the circumstances of child death in England has been collated and analysed on a national scale, specifically in relation to children with life-limiting conditions.
Each time a child dies, the team of professionals who cared for them, including health, public health, police, and children’s social care teams, must file a report on the circumstances of death. These are reviewed by a local board to determine whether there are any opportunities to improve care, and those learnings are collated by the NCMD to reveal national trends.
The NCMD’s latest report relates to deaths attributed to children with life-limiting conditions who died between 1 April 2019, when recording began, until 31 March 2022, the latest available data. It lays bare the unacceptable struggles too many families face as often overstretched care teams strive to sustain vital services.
Our Chief Executive Nick Carroll writes in his foreword that parents are being left “exhausted and angry” as a result, and wondering “why their beloved child isn’t a priority.”
We hear regularly from parents and carers that they had to fight throughout their child’s short life, so it is not a surprise that this vital report confirms that too many families struggle to access the support they need.
Nick Carroll, Chief Executive, Together for Short Lives
He says: “We hear regularly from parents and carers that they had to fight throughout their child’s short life, so it is not a surprise that this vital report confirms that too many families struggle to access the support they need.
“I am deeply worried by all the challenges this report highlights, including a lack of 24/7 end of life care at home and the issues with access to medications, advance care planning and named medical leads.
“The depressing reality is that this is not caused by medical complexity but by where a family lives. We know there are many examples of incredible care happening every day but the truth is that our system is not sustainable. Together for Short Lives’ vision is that every child, no matter where they live, can access sustainable, high quality palliative care. Time is short for seriously ill children and their families. Urgent action is needed from government, the NHS and others to fix it.”
The report states that around 54% of child deaths can be attributed to those with life-limiting or life-threatening conditions in England, with similar rates in other parts of the UK. The majority are due to genetic and birth defects (37%), with a lesser proportion attributed to events surrounding childbirth such as prematurity (25%) and childhood cancers (15%).
It can be concerning for families who are actively caring for a seriously ill child to hear that there are gaps in care offered to families. If you want to discuss any of your worries with a professional, you can contact our Family Support Hub where our team will be happy to support you.
