NHS Improvement, which has reviewed the care of children who deteriorate while in hospital, says parents at the bedside are well placed to see any change in their child, but are not always heard and can be afraid to speak up.
Too often parents worry “about ‘time-wasting’ with any repeated concerns” or that they won’t be listened to, but “it is imperative that parents feel welcome and encouraged to speak up”, said Dr Mike Durkin, the NHS national director of patient safety.
Children can deteriorate very quickly and die if they do not get the right treatment fast. Sepsis – blood poisoning – sometimes caused by meningitis, kills babies and children if they do not rapidly get antibiotics. According to NHS Improvement, research shows that more than a quarter of preventable deaths in children and adults happen because they are not properly monitored so a change in their condition is not noticed.
NHS Improvement, whose report is backed by the medical royal colleges, has worked on it with parents who have lost a child. Joanne Hughes from Hitchin in Hertfordshire set up a support group called Mothers’ Instinct following the death of her 21-month-old daughter Jasmine.
Doctors and nurses must listen to parents who report that their sick child is getting worse and investigate their concerns, even if the usual tests suggest there is no cause for alarm, say new NHS recommendations.