Listen to parents of sick children rather than tests, NHS tells doctors
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Version 0 of 1. 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. 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. Jasmine died in 2011 as a result of acute disseminated encephalomyelitis, a neurological condition triggered by a virus she contracted over Christmas. Her parents took her to the GP because she had developed a squint and a strange gait when she walked. The GP immediately referred her to the local hospital’s paediatric unit, but things went wrong after that. “There had been major communication failures between our district hospital and Great Ormond Street, which meant that I was going into our local hospital to say my child is deteriorating, I really think she needs rapid assessment,” said Hughes. “Because Great Ormond Street had incorrect information, they were saying it was perfectly fine for me to wait for an appointment. “Had they understood that she was deteriorating they would have seen her much sooner. But I couldn’t get my concerns listened to.” Jasmine’s parents kept taking her to A&E, saying she was getting worse, but were seen by different doctors with different views on the cause of her illness. Eventually she became very ill and died while in intensive care. Parents who have sought out Hughes’ support group had in common “knowing something was very wrong and not feeling their concerns were properly responded to”, she said. There was an overreliance on the results of tests and the monitoring of vital signs such as temperature and blood pressure. “Those scores were being misinterpreted as reassurance,” she said. NHS Improvement says that parents’ concerns should carry more weight than these scores. It sets out a safety framework for caring for sick children which includes “developing a culture which is committed to overall improvement in patient safety, prioritising safety, leadership and executive accountability, and monitoring and measuring patient safety”. Doctors, nurses and other health professionals must be in partnership with the patient and their family, it says, and they must learn from any mistakes. |