A report into the death of a five-year-old Rotherham boy sent home from A&E has called for national guidance to take into account parents’ intuition that “something feels very wrong” about their child.
Yusuf Mahmud Nazir died of pneumonia and sepsis at Sheffield children’s hospital on 23 November 2022, almost a week after his parents first raised concerns that he was unwell.
He was seen by numerous clinicians who failed to listen to the concerns of his mother, Soniya Ahmed, that something was seriously wrong with Yusuf, instead relying solely on data that suggested he was not seriously ill.
The independent patient safety investigation (IPSI) report, commissioned by NHS England in response to significant concerns raised by Yusuf’s family, recommended that caregivers’ concerns be taken more seriously when assessing children.
The report asked healthcare organisations to consider treating parental intuition as a “legitimate and vital form of evidence” and asked: “What becomes possible when the instinct of a mother is given the same attention as a monitor reading?”
The report, written by Dr Peter Carter, an independent healthcare consultant and former chief executive and general secretary of the Royal College of Nursing, stated: “The system is not designed to capture ‘something feels very wrong’ as an input, and thus a gap opens between family and clinicians.
“In paediatric practice, it is increasingly recognised that relying solely on quantitative metrics can lead to false reassurance. A child might still have ‘normal’ observations while mounting a serious internal struggle, compensating such as maintaining blood pressure until crashing.”
It comes as a patient safety initiative known as Martha’s rule is being piloted in hospitals in England, giving parents the legal right to an urgent second opinion if they feel their child’s condition is deteriorating and their concerns are not being addressed.
It is named after 13-year-old Martha Mills, who died in 2021 from preventable sepsis at King’s College hospital in London after a cycling accident, and whose parents raised repeated concerns about her declining condition that were not taken into account by clinicians.
In Yusuf’s case, the report found his parents felt excluded from decision-making and his mother’s instinct that he was unwell was “repeatedly not addressed across services”. It made 16 recommendations for local and national healthcare bodies and found 12 failings, including healthcare professionals failing to communicate properly with each other or maintain adequate records and a lack of training.
Ahmed said: “The failings identified are truly shocking. Yusuf deserved better; every child does. I will never stop speaking his name. I will never stop fighting for him. We demand accountability, we demand change.”
Speaking at a press conference in Rotherham, Ahmed said: “For the medical staff there are lessons to be learned from this tragedy, but for us, our life, Yusuf has been taken away from us in the most horrific way. Every night when I close my eyes I hear Yusuf’s helpless voice in my ears saying: ‘Mummy, I can’t breathe, I can’t breathe, I really can’t.’
“And the image of him being handed over to me after his life ended, as though someone has torn my heart out and placed it in my hands.”
Yusuf’s family have written to the coroner asking for an inquest into his death.
Yusuf, who had asthma, was taken to the GP with a sore throat on 15 November 2022 and was prescribed antibiotics by an advanced nurse practitioner. Later that evening, his parents took him to Rotherham hospital urgent and emergency care centre (UECC) where he was seen in the early hours of the morning after a six-hour wait.
He was discharged with a diagnosis of severe tonsillitis and given an extended prescription of antibiotics. Two days later Yusuf was given further antibiotics by his GP for a possible chest infection, but his family became so concerned they called an ambulance and insisted the paramedics take him to Sheffield children’s hospital, rather than Rotherham.
Yusuf was admitted to the intensive care unit on 21 November but developed multi-organ failure and suffered several cardiac arrests that he did not survive.
The report, published on Thursday by NHS England, which came after meetings between the family and the health secretary, Wes Streeting, is the second into Yusuf’s care. A 2023 internal review by NHS South Yorkshire Integrated Care Board found there were no major failings.
Anna Thwaites, a partner at the law firm Bindmans who has represented the family from the beginning, along with counsel Adam Wagner KC from Doughty Street Chambers, said: “This has been a long and difficult journey for the family. They knew there were issues with Yusuf’s care and treatment, yet the first ‘independent’ investigation found that there were no failures linked with Sheffield children’s hospital.
“The second investigation revealed for the first time multiple and serious failings, but Yusuf’s family had to wait over two and a half years for this be revealed; the wait has been agonising for them.”
She added: “The family calls for action and change. The family do not want Yusuf’s death to be in vain. Another child cannot be failed.”
Dr Jeff Perring, the executive medical director at Sheffield children’s NHS foundation trust, said: “The report identifies important areas for learning and improvement, not only for us at Sheffield Children’s but also across the wider healthcare system. We are dedicated to delivering the improvements outlined in the report’s recommendations.”
Dr Jo Beahan, the medical director at Rotherham NHS foundation trust, said: “Our deepest sympathies remain with Yusuf’s family following such a sad loss of a loved family member. We fully cooperated with this investigation into Yusuf’s care. We have taken steps to address the recommendation and also the concerns raised by Yusuf’s family. Our thoughts continue to be with Yusuf’s family.”