Sebastien Hibberd was in excruciating pain, throwing up green vomit and suffering from diarrhoea in the 48 hours before his tragic death on October 12, 2015.
His frantic dad Russell repeatedly called 111 in the six hours before his death but call handlers failed to recognise the severity of his condition.
Sebastian suffered a cardiac arrest at his home in Plymouth, Devon, and died while waiting for medical attention.
His inquest in February last year heard 111 call handlers didn’t spot “red flags” that would have told them part of his bowel had collapsed from a condition called intussusception.
The 111 helpline uses the NHS Pathways tool which assesses patients’ conditions and directs them to urgent and emergency care services.
Now senior coroner Ian Arrow has told the NHS that unless the system is changed there will be further tragic deaths.
He wrote in a report that handlers are not “adequately assisted by Pathways” to recognise a child is seriously ill.
“During the course of the inquest the evidence revealed matters giving rise to concern. In my opinion there is a risk that future deaths will occur unless action is taken, “ Mr Arrow said.
He said that in particular there were inadequate Pathways questions for children over five about two of the symptoms for intussusception and a seriously ill child – cold hands and feet and green vomit.
Mr Arrow said that the Pathways’ questions do not allow a meaningful assessment of how much pain a child is in and there is a need to review the support for 111 handlers, who are not clinically trained, when dealing with unusual cases.
The coroner asked that NHS England review the need for a failsafe mechanism to ensure that when there are repeated calls over a child’s an assessment is made about if there should be a face-to-face meeting with a doctor.
He added: “In my opinion action should be taken to prevent future deaths and I believe you have the power to take such action by reviewing the present systems and protocols in place to assist in particular parents seeking assistance for ill children.”
NHS England and NHS Digital have until mid August to respond to the report.
Sebastian’s mother and father Nataliya and Russell said they were pleased with the coroner’s recommendations.
In a statement they said: “While nothing will bring our wonderful little boy back, this Prevention of Future Deaths Report is everything we have been asking for and we hope it will prevent any other family having to live through the nightmare that we have. For three long years we have been fighting for change, reading NHS reports and documents in pursuit of the truth, and we are extremely grateful to the coroner for agreeing to our request for an inquest and listening to our concerns.
“We would like to thank our legal team of Dawn Treloar and James Robottom as we would not have been able to have done this without them. We remain heartbroken that our little boy’s life has been taken from him, but we hope this report will prevent the tragic death of a precious son and brother.”
An NHS Digital spokesperson said: “Changes have been made to the relevant pathways” since Sebastian’s death, adding a patient with his type of symptoms are now “referred to an emergency department within an hour”.
The spokesman added: “We offer our sincerest condolences to Sebastian’s family following his tragic death. We conduct regular reviews of the system to ensure that it follows the latest clinical evidence and advice from specialist clinicians. Some of the pathways named in this case have already been routinely amended as part of this regular review cycle. We will consider the evidence presented and the findings by the coroner, to ensure that any necessary lessons are learned.”