Experts have warned hundreds of “hidden” children who rely on machines to help them breathe at home are at significant risk of harm due to staff shortages, poor equipment and a lack of training.
The number of children who rely on long-term ventilation is rising but new research has shown the dangers they face with more than 220 safety incidents reported to the NHS between 2013 and 2017.
In more than 40 per cent of incidents the child came to harm, with two needing CPR after their hearts stopped. Other children had to have emergency treatment or were rushed back to hospital.
Many parents reported concerns with the skills of staff looking after their children or reported paid carers falling asleep while caring for their child.
Families reported having to cover multiple night shifts due to staff shortages, while also having to care for their child during the day.
Other patient safety incidents including broken or faulty equipment or information on packaging that did not match the item or incorrect equipment being delivered.
Poor communication and planning was also a key factor in incidents. In one example a child, who needed 24-hour ventilation, was not visited for days after being discharged from hospital which was blamed on a shortage of nurses.
The number of children on home ventilation in the UK has increased from 844 in 2008 to an estimated 1,500 by 2015. The NHS is also planning to reform paediatric critical care services with more children looked after closer to their home.
Consultant Emily Harrop, who led the study, said it was “easy for the plight of individual complex children to slip down the agenda”.
She warned: “This is a very hidden group of very vulnerable children who are at risk without investment in staffing, access to training and good communication.
“There is a dwindling supply of staff and an increasing number of children, and the direction of travel is not going to be safe unless we do something about that.
“What I worry about is changes being made around the place of care for children with complex needs, without the understanding of the investment needed for that.”
Dr Harrop, medical director at the Helen and Douglas House children’s hospice in Oxford, added: “There are not the physical bodies and the more children that become ventilated at home the more carers we are going to need and I’m not sure where they are going to come from.”
The study, published online in the Archives of Disease in Childhood, said the number of reported incidents “likely represent the tip of the iceberg”.
Out of the 220 incidents, 99 were linked to unavailable or faulty equipment, 91 were linked to procedures such as the wrong size tracheostomy tube with 27 incidents linked to concerns around staff availability and competency.
There were also 18 communication issues and 16 relating to the information, support and training needs of families.