Terminally ill children unable to go home, report says

A report has highlighted issues that have prevented some terminally ill children in Derbyshire from dying at home, despite it being their wish to do so.

The Derby and Derbyshire Child Death Overview Panel (CDOP), a statutory body that reviews child deaths, warned that families "urgently need" improvements to end-of-life care following years of unaddressed concerns.

The report highlighted concerns around access to medical support, trained staff and medications in particular.

The NHS in Derbyshire was approached for comment.

The panel said several issues were affecting children's palliative and end-of-life care in the county.

These include an inability to provide 24-hour nursing support to families whose child wished to die at home, limited access to expert advice and appropriately trained doctors outside normal working hours, and difficulties obtaining medications for children.

The report also highlighted communication problems caused by different IT systems being used across health organisations, challenges for 16 and 17-year-olds with life-limiting conditions who can fall between paediatric and adult services, and delays in having a death appropriately verified out of hours, which can cause additional distress for families.

The report was put together in partnership with the county's Child Death Review Team, and highlights how "gaps" have been identified for child palliative care provision since 2020, after reviewing the case of a "brave young person" with terminal bone cancer who wanted to die at home but could not because the service was unavailable.

"Alongside their specialist oncology nurse, the young person courageously wrote of their experience and why they felt passionately that there should be provision for young people of any age to be able to die at home if that was what they chose," the team said.

"Unfortunately, since 2020 and in this year Derby and Derbyshire CDOP frequently hear stories that clearly demonstrate that the children in our area are not receiving consistent palliative care services...concerns raised in 2020 remain."

In an audit of almost 300 child deaths reviewed by the panel of children with life-limiting conditions, 16 cases identified concerns with the services and provision available.

The panel added however that there were cases where health and care staff had gone "significantly above and beyond" to provide support for families.

The report also identified "modifiable factors", or factors that may have contributed to the deaths of the children, and considered whether risks could have been reduced.

Of the 65 cases reviewed in 2024-25, 86% identified service provision factors such as lack of staffing, bed capacity, equipment and delays in treatment or illness recognition as contributory factors.

This is much higher than the England average for modifiable factors in such cases, which is closer to 40%.

The report does not say those factors directly caused the deaths.

Paul Parsons, head of clinical services at the charity Child Bereavement UK, said the gaps identified in care in Derbyshire could "really disrupt the normal grieving process", as well as deeply impact children who "don't have a voice about what they really want".

"If a child feels safe and secure in an environment that's familiar to them, then we know that outcomes...are much more positive in such difficult circumstances," he said.

"The grieving process is difficult enough to navigate anyway without these issues through this report, which has actually shown that the grieving process is contaminated, in a way, by a lack of care."

Parsons added parents should not have to think about "the practical things that just didn't happen" in their child's last moments.

The BBC has contacted NHS Derby and Derbyshire Integrated Care Board for a comment.

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