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Ayaan Haroon’s Family Statement. Sheffield Children’s Hospital has never existed for our family when it mattered. From the very moment Ayaan needed lifesaving care, every system, every policy, and every socalled process failed him. Leadership abandoned him—and abandoned his bereaved family. Clinicians ignored him. And yet, after years of raising concerns, after thousands of pounds raised for this hospital, after countless formal requests for accountability, your own Trust clinicians now want the doors to be formally shut. How convenient. That position now forces a question that this Trust’s executive leadership must answer today on what basis do you believe communication or engagement with you should continue at all, given the catalogue of failures, concealment, and institutional conduct that cost Ayaan his life This complaint was initiated only because, days after Ayaan’s death, more than one of your own clinicians contacted me to state that his death was unexpected, strongly advised us to speak to the media, urged us to seek urgent legal advice from Irwin Mitchell Solicitors, and warned—within days—that Trust executives would seek to conceal the failings in Ayaan’s care, emphasising that swift action was essential if the truth was ever to be known, a prediction that has been borne out to be true despite the continued efforts of those now sitting in this room to maintain the façade of competence and control. What has compounded our distress is that the lack of independence in this process was not accidental — it was deliberate. In May 2023, when we formally requested an alternative investigation provider, we were issued with an ultimatum by Karen Conway of NHS England, stated explicitly in writing if we did not accept Niche, we would be excluded from the investigation entirely. This was not a freely made decision. It was coercion. This ultimatum was issued despite us explaining that our concerns were informed by the experience of another bereaved family — the family of Yusuf Nazir, whose child’s death had also been investigated by Niche and later found to have been the subject of a coverup. It was issued despite there being at least 15 other accredited investigation providers available at the time. I immediately escalated this in writing to the Trust’s executive leadership, setting out the seriousness of what was being imposed on us and the damage it would cause to confidence and legitimacy. No executive responded. That silence was not neutral — it was the first clear sign that a coverup was being allowed to take root. By failing to intervene, the Trust accepted and enabled this ultimatum. The insistence on proceeding in this way fundamentally undermined any claim to independence from the outset and set the tone for everything that followed — exclusion, defensiveness, and institutional selfprotection over truth. Our concerns about Niche were not speculative. They were grounded in evidence. Freedom of Information disclosures show that Niche has been commissioned for 152 out of 265 NHS investigations over the last ten years, despite the existence of at least 15 other accredited investigation providers available at the time. Such concentration is no accident — it is reckless, complacent, and insulting. It raises profound questions not about learning, but about whose reputations are being protected. A system that repeatedly returns to the same provider — even after multiple bereaved families have exposed serious failings, misconduct, and coverups — cannot plausibly claim to offer independent scrutiny. To call this “investigation” is almost comical it is a charade, a revolvingdoor exercise in selfprotection, dressed up as due process, while families are left to pick up the pieces of lives shattered by predictable and preventable failures. Quite frankly, anyone can verify this for themselves. A simple search of Niche Health and Social Care Consulting reveals a catalogue of controversy, repeated criticism from bereaved families, and a mounting trail of investigations that have been challenged, dismissed, or whitewashed. Against this backdrop, the NHS continued, preferential use of Niche is not merely questionable — it is an indefensible abdication of responsibility, a conscious choice to prioritise reputation over truth, and a slap in the face to every family who has been let down. As a family, we were thrust into a process that was clearly designed not to investigate, learn, or protect children, but to shield the organisation, manage reputational risk, and paper over catastrophic failures. It was a performance for appearances, a stage set to protect careers, while our child’s suffering and our grief were treated as inconvenient distractions. We were also warned by a consultant within this organisation that reports would be sanitised before publication, that inconvenient findings would be conveniently reframed as historical, and that our participation—and any publicfacing engagement—would be harvested for reputational gain. That warning has haunted us, because it has been borne out in every interaction, every document, every statement since. This is not mere perception it is confirmation from within the organisation itself that clinicians recognise the corrosive culture of coverup and selfprotection that dominates the Trust. The same patterns of delay, minimisation, and deflection continued with Aroob’s care. Independent clinicians raised urgent, evidencebased concerns and even provided an addendum designed to strengthen safeguards and reduce risk. Yet responses were delayed for months, repeatedly ignored despite chasing, and ultimately twisted into diluted or contested assurances rather than decisive action. This only confirms what we have long feared the Trust has not changed at all. When faced with challenge, even where a child’s life hangs in the balance, this organisation chooses protection of itself over protection of patients. We have also endured conduct that goes far beyond mere disagreement—it was intimidation, plain and simple. Requests for professional registration details of clinicians supporting us, and the subsequent formal ceaseanddesist letters, created a chilling effect not only for our family but for anyone who dared to advocate alongside us. This was never about patient safety, governance, or accountability it was about control, silencing, and protecting reputations. It forces the stark question how genuinely open is this organisation to scrutiny, dissent, or truth when children’s lives—and parents’ voices—are at stake Senior leaders have repeatedly offered the language of engagement, transparency, and learning—but words have been hollow. Too often, those assurances dissolved when scrutiny intensified, leaving actions delayed, meetings arranged only after pressure, and conciliatory language deployed only when exposure or media attention made it convenient. This pattern confirms what we have long feared engagement was never principled, never genuine, and entirely reactive—designed to protect reputations rather than children. Trust has been eroded not by our questioning, but by their selective, selfserving responses. What makes this particularly painful is that, despite enduring neglect, obstruction, and intimidation, we have continued to act in good faith. We supported this hospital publicly and raised thousands for its work, encouraged others to do the same, and engaged constructively at every stage. That stark contrast—between our integrity and commitment, and the evasive, selfprotective, and often hostile conduct of those in positions of authority—exposes not just failure, but moral bankruptcy at the top. I am here to place on record a direct challenge to the executives of this Trust. Given the catalogue of failures, concealment, intimidation, and badfaith conduct set out in this statement, the burden now rests with you to explain why any further communication or engagement with your executive leadership should continue at all. On what basis do you assert that trust, accountability, or integrity exist to justify further engagement Ayaan was failed. He lost his life because of catastrophic, preventable failures in his care. On 5 March 2023, he arrived in AE with oxygen saturations of 83 and a PEWS score of 7. Your own internal policy required immediate consultant review and 15minute observations. Instead, your clinicians carried out hourly observations. Impressive. You ignored the very early warning signs designed to save his life—and, in doing so, ensured it was lost. The window between 5 March and 8 March was a relentless series of ignored warnings. During these 72 hours, there were 17 nursing referrals for urgent medical review. On 17 separate occasions, bedside nurses raised the alarm about his deteriorating respiratory distress. On all 17 occasions, the medical team failed to act. Seventeen missed opportunities to save my son’s life—seventeen precise moments when escalation to ICU could have made the difference. Seventeen chances to do the right thing. Seventeen deliberate failures. Seventeen decisions that apparently deemed it acceptable for him to die. He was a disabled boy, yet he was treated as a burden by your clinicians, who simply did not care. They allowed him to die while withholding or delaying every lifesaving treatment that was available. And instead of acknowledging these failures, instead of accepting responsibility, this Trust has spent three years covering up, whitewashing, sanitising, and gaslighting us, dismissing over 500 concerns we raised. You treated our grief not as a tragedy demanding reflection, but as a problem to manage. Bravo. Absolutely exemplary leadership. For three years, this Trust has defended itself with a story that collapses under scrutiny. Your own commissioned investigator admits, in paragraph 2.655 of the Niche report, that “most of the data appertaining to Ayaan’s care went on to the systems after the complaint.” While Ayaan was alive, there were no meaningful contemporaneous records—nothing to show how his care was actually managed. Only after he died—only after our formal complaint, and only once media attention and reputational risk escalated—did detailed accounts suddenly appear, written retrospectively from memory. This is not documentation it is a coverup in plain sight. This conduct constitutes a flagrant breach of the Trust’s statutory Duty of Candour. Once serious harm and death were known, the Trust was legally obliged to provide truthful, timely, and complete information. Instead, it chose deception supplying misleading, inconsistent, and evershifting explanations that only changed when scrutiny intensified. This was not oversight or error—it was a calculated, institutional response designed to protect reputations over a child’s life. Such behaviour strikes directly at the foundations of patient safety, transparency, and public trust. This failure is compounded by the Trust’s complete inability—or unwillingness—to preserve evidence. Following Ayaan’s death and the raising of a serious incident and formal complaint, no immediate steps were taken to secure contemporaneous clinical records, lock audit trails, or safeguard original documentation. Digital forensic metadata shows that many records were created or exported in 2024—over a year after Ayaan died. These are not contemporaneous accounts they are retroactive reconstructions, crafted long after the fact. Verbal warnings that should have been documented at the time are entirely missing. Disturbingly, some medical records were later found unsigned in senior leadership offices, as if left to gather dust rather than being treated as evidence. This is not mere administrative failure it is a fundamental collapse of clinical governance, evidence preservation, and accountability, overseen by the very executives who are present here today. Memories that were precise when they protected the Trust, yet conveniently “faded” the moment accountability for Ayaan became unavoidable through courts. Remarkable. Selective recollection seems to operate not in the service of his care, but in safeguarding institutional reputation and preserving careers—at the expense of Ayaan’s life. The narrative pushed by Niche—that Ayaan died because of a “lifelimiting condition”—has been definitively disproven by your own Immunology team, who were conveniently never shown the draft report until we intervened, leaving you no choice but to provide access. How convenient that the very clinicians whose accounts were critical were excluded from the Niche draft in the first place—interviewed but never given the draft report—until you were caught out. They confirmed that Niche misinterpreted a basic research paper. If Niche cannot interpret a basic research paper correctly, it discredits the entire investigation and exposes the final report as incapable of being both fair and transparent. At that point, the only appropriate course of action would have been for Ruth Brown to recognise this fundamental failure and immediately seek an IPSI investigation. Instead, the Trust proceeded as if nothing had happened, leaving Ayaan’s family to contend with a pseudoreport that conceals catastrophic failings, rather than addressing them. This is not science it is whitewashed pseudoevidence, cynically deployed to excuse neglect and obscure the catastrophic failures that cost Ayaan his life. Furthermore, on 10 March 2023, Ayaan was randomized into the invasive PRESSURE study without our informed consent. Internal emails reveal that the Trust’s leadership and executives were fully aware at the time that consent had not been obtained. Their priority was not patient safety or legal compliance—it was media optics and protecting reputations. No lawful justification was ever provided for enrolling Ayaan. This was not an isolated incident. We now know that two children died in ICU following the PRESSURE study, and in neither case were the parents informed at the time. One of those children was Yusuf Nazir and the other was Ayaan Haroon. This demonstrates a shocking and systemic pattern of disregard for parental rights, patient safety, and the fundamental ethics that should govern paediatric care. The very people entrusted with safeguarding children were, instead, complicit in exposing them to unnecessary harm. You handpicked Niche—an investigator of your choosing—to deliver the outcome you wanted. A hospital that fails a patient does not get to investigate its own failings. That is not independence. That is a coverup, plain and simple. That is marking your own homework—the equivalent of asking a mother to write her own child’s reference, or a student to grade their own exam. Niche claimed to have paediatric experience in reality, they had conducted only one paediatric investigation out of 152 over the last 10 years—the case of Yusuf Nazir, which Wes Streeting has publicly described as whitewashed and sanitised. Their complete lack of relevant experience, coupled with the conflict of interest you engineered, fatally undermines any claim that this investigation could be fair, credible, or transparent. Ayaan’s death deserved independent scrutiny instead, your choices ensured it would be obscured, distorted, and sanitised. In nearly three years, Niche met with us only once, yet repeatedly issued public statements claiming to “care” about our family. Those statements were lies—blatant, calculated, and performative. I explicitly instructed them not to use Ayaan’s name in the media. They did so anyway. After credible threats were made to my phone last February, Niche made no attempt to contact us at all. This was never about investigation. It was never about truth, accountability, or learning. It was entirely about institutional protection, reputation management, and sanitising a narrative that exposed catastrophic failures—failures that cost Ayaan his life. In recorded meetings, Cathy Winfield explicitly stated that the Trust “owns” this report and that they will decide what is included. In other words, she admitted that the Trust will sanitise and whitewash the report before it is ever shared with us. This is a blatant confirmation that the investigation was never intended to be independent, transparent, or accountable. From the outset, the Trust prioritised protecting its reputation over acknowledging the catastrophic failings in Ayaan’s care. We also place on record a deeply uncomfortable truth thirtyeight white individuals have investigated our concerns, and not a single Muslim investigator has been involved at any stage. Every review, every report, has been filtered entirely through a white lens, with no meaningful understanding of the cultural, religious, or lived experience of our family. Your own Child Death Review CDR minutes contain racial profiling, falsely asserting that English is not parents’ first language and that we were refugees or asylum seekers. No referral to the Muslim chaplaincy was ever made. This complete absence of cultural representation evidences institutional racism—systemic, pervasive, and deliberately ignored at every level of the NHS. The repeated erasure of Muslim families from investigative processes demonstrates not only bias but a deliberate avoidance of accountability when the victims are from minority communities. The impact on our family is permanent. My wife will not meet with you. She cannot sit in the same room as the leadership team, led personally by Ruth Brown, who ignored her for 14 months after our child died and then spent three years not only attacking me personally but actively orchestrating the coverup of the catastrophic failings in Ayaan’s care. Our daughters have suffered deeply. Aroob asks us regularly, “Will the nurses and doctors kill me too” She is now forced to live under a system where the very clinicians who let Ayaan down—Dr Fernando and Dr Flemons, who directly contributed to his death—are still permitted to treat her. None of those responsible have faced any accountability. They continue to practise, unrepentant and unchallenged. The culture you have embedded in this Trust is unmistakable you harm patients, issue glowing apologies, pat the very clinicians who failed them on the back, promise that “lessons will be learned,” and then send those same individuals straight back to work. In any other profession, these people would face disciplinary action—or worse. Here, they are shielded, protected, and children like Aroob are still expected to place their lives in their hands. Truly, the priorities are astounding. Our daughters once dreamed of careers in healthcare—one aspiring to be a doctor, the other a nurse. Those ambitions have been extinguished. They witnessed police at our door. They witnessed threats to have their father sectioned—threats made by a Trust Solicitor who had no medical authority to make such a judgment, including explicit instructions suggesting I should be sectioned. They saw the deliberate destruction of our family’s livelihood. They will never work for the NHS. That tragic outcome rests squarely at the feet of this Trust. Threats of sectioning were raised, and our fitness as parents was actively questioned. This was not safeguarding—it was intimidation, abuse, and a profoundly disproportionate misuse of power. It was unjustified in every sense, and entirely reflective of a system more focused on control than care. Safeguarding frameworks were inverted and weaponised against us. Evidence shows that psychological support for our family was deliberately withheld until the Trust’s own solicitor, Marilyn Whittle, granted permission. This was not care—it was control. It was used to intimidate, discredit, and silence us, rather than to confront the failures that cost Ayaan his life. This is organisational abuse masquerading as safeguarding. Given the sustained harm, intimidation, and repeated badfaith conduct by this Trust’s leadership, the responsibility now rests squarely with the executives of this Trust to explain why any continued communication or engagement with them would be safe, lawful, or meaningful for our family. This is not a refusal to engage in learning or accountability—it is a direct challenge to those in positions of authority to justify how trust, integrity, or good faith could plausibly exist after the conduct set out above, and why further engagement should not itself place our family and our surviving child at risk. The behaviours described above do not put our family at risk alone. They reflect a continuing, systemic danger to every child treated by this Trust, where retrospective documentation, the silencing of challenge, and the deliberate avoidance of accountability remain unchecked. We are also expected to tolerate the Trust’s absurd fixation on taxis. I was falsely accused of covertly recording Trust staff in a licensed taxi, as though I were running a clandestine MI5 operation rather than travelling under threat. The vehicle had approved CCTV installed explicitly for my protection, in response to the hostility, intimidation, and false allegations being directed at me. This was not covert surveillance. It was lawful, declared, and deliberately misrepresented to entrap, discredit, and distract from the catastrophic failures that killed Ayaan. The dishonesty from leadership is complete. Both the Chief Nurse, Yvonne Millard, and the Trust’s solicitor, Stephanie Kennedy, explicitly stated that no Ultrasound or Echocardiogram was performed on Ayaan on 8 March 2023. That position was stated clearly and unequivocally. Yet the Niche report later introduced a new and extraordinary claim that the clinician had suddenly “regained his memory” and now asserted that an ultrasound had, in fact, been performed—but conveniently “forgotten” to be documented in any form. This is not a clinical error or an innocent lapse. It is a shifting, implausible, and deceptive narrative, constructed to obscure the truth and shield the Trust from accountability for failures that cost Ayaan his life. Delay, obstruction, and misrepresentation have defined this entire process. It took fourteen months for the Chief Executive, Ruth Brown, to meet us, and twentyone months for the Medical Director. Meanwhile, our daughters were tirelessly raising thousands of pounds for this hospital—efforts intended to support care and improvement. Internally, however, discussions among your executives focused not on learning from Ayaan’s death, but on managing us and the media attention our grief generated. Caring for children apparently came second protecting reputations came first. Even after Ayaan died, there was a deliberate attempt to erase him. When I asked whether Aroob could plant flowers for her brother in the memorial garden, we were told no—citing supposed “renovations.” Two years later, nothing has been touched. This is not oversight it is calculated indifference, a refusal to acknowledge the child whose life your clinicians failed, and a clear signal of how little accountability or respect your leadership affords to families like ours. We also place on record the hostility shown towards our family in public and charitable settings. In December 2023, Geoff Padmore raised internal concerns about our attendance at the hospital’s snowflake switchon—not over logistics, but because we were present as a family and, heaven forbid, I might speak to the media—as if I needed the Trust to give me public attention, which I have always managed perfectly on my own. This is the level of scrutiny and intimidation your leadership considers acceptable targeting grieving parents rather than addressing the failures that cost Ayaan his life. Yet you were very happy to accept our donation, but did not want us at the switchon. Ayaan’s clinicians at the Sleep House generously paid for a planter to remember him and wanted his name engraved. The Trust denied this, offering the flimsy excuse that it “might upset us”—an excuse that did nothing but upset their own staff, who had acted with care and compassion. This is the kind of thoughtless, performative obstruction that has defined their approach to our family from the start. Senior Muslim figures reached out directly to the Trust Chief Executive, Ruth Brown, and received identical, copyandpaste replies sent just minutes apart. Genuine dialogue was clearly never intended—communication was engineered to appear responsive while remaining utterly meaningless when it actually mattered. Aroob is living proof that the narrative used to excuse Ayaan’s death is false. She lives with the exact same condition—and she is thriving. Ayaan did not die because of his diagnosis. He died because of catastrophic failures in care, failures that were preventable, ignored, and ultimately fatal. We are now being told to redirect our concerns to the PHSO—as if we are “not your problem anymore.” Let me be clear redirecting us does not erase the harm, the negligence, or the deliberate failures that cost Ayaan his life. Attempts to wash your hands of accountability cannot undo the suffering inflicted on our family. We are escalating evidence of retrospective records, distorted science, investigator misconduct, fabricated allegations, threats of sectioning, institutional racism, and deliberate cover up directly to the Secretary of State for Health Wes Streeting. Every failure, every deception, and every attempt to protect reputations over lives will be laid bare. What is set out here represents only the tip of the iceberg. Were we to document in full the targeted and vicious campaign to silence us, this record would extend to dozens of pages. There is no meaningful dialogue through the ICB. Oversight must now be exercised directly by NHS England’s Chief Executive, Sir Jim Mackey. We retain the non negotiable right to access the full report prior to its publication. We also place you on notice that multiple journalists are already engaged and prepared to act immediately upon publication. Based on our direct review of the Niche draft report, we can state with absolute conviction that any final published version will be whitewashed, sanitised, and designed to conceal rather than confront the truth. The moment such a report is released, the evidence of that cover up will be made public. We will not be silenced by Niche. Little Ayaan deserved care, attention, and compassion—every right that any child should expect when in the hands of a hospital. Instead, he was met with neglect, delayed treatment, and indifference. The very clinicians entrusted with his life withheld or postponed lifesaving interventions, allowed systemic failures to persist, and treated his suffering as an inconvenience. He deserved protection he received abandonment. He deserved advocacy he received bureaucracy. He deserved truth he received obfuscation. In every sense, Ayaan was failed at every turn by those who were meant to care for him. This statement is made in full view of our MP, with no attempt at private negotiation or behindthescenes appeasement. This is the unvarnished truth, fully on the record, and it will not be softened, ignored, or rewritten to suit the Trust’s narrative. Every word reflects the lived reality of our family and the catastrophic failures that led to Ayaan’s death. This meeting places the responsibility on Trust executive leadership to explain why engagement regarding our complaints and their handling should continue, in light of the evidence and conduct set out in this statement. Finally, we place on record this most serious position We no longer trust this Trust to keep Aroob safe. We require Great Ormond Street Hospital or Alder Hey Children’s Hospital to oversee every aspect of her care. This is not a preference—it is a nonnegotiable safeguard. If you refuse, we will escalate publicly again. You will not be allowed to place a second child at risk. You failed Ayaan. We will not allow you to fail Aroob. Reconciliation is impossible until this Trust publicly admits its failings in Ayaan’s care. Had the Trust accepted its failings from the outset, we would not be sat here today with over 250 stakeholders who reached out to support us, while a queue of journalists waits to publish yet another story of a Muslim child let down by the NHS. Until then, there is nothing further to discuss. We remain committed to ensuring the right lessons are learned from Ayaan’s death. We will continue to advocate for patient safety, to ensure no other child suffers as he did, and to support the Trust where genuine learning is possible. Evidence confirms the dangers created by retrospective documentation, the deliberate omission of contemporaneous care notes, and clinicians who continued to practise without accountability. This complaints process has become fundamentally distrustful, evasive, and hostile, and it is now for Trust executive leadership to explain how any further engagement with them could be justified or conducted in good faith. The right to receive the full report and to have our concerns properly acknowledged cannot be denied or obstructed oversight must now come directly through NHS England’s Chief Executive, Sir Jim Mackey, as both the Trust and the ICB have repeatedly shown they cannot be trusted to act in good faith. While the conduct of hospital executives has brought engagement with them into serious question, our commitment to learning, truth, and safeguarding children remains unwavering. We have acted with grace, integrity, and determination, even in the face of a system that has repeatedly let us down, and we will continue to do so to honour Ayaan’s memory and protect our daughter, Aroob. By refusing accountability, the legacy you leave is not one of learning, care, or compassion. It is a legacy of coverups, lies, and betrayal of the very children and families you were meant to protect. You chose to protect reputations over lives. You chose PR over truth. You chose denial over action. The failures that killed Ayaan, the obstruction, and the ongoing risks to Aroob will define your leadership far longer than any statement, policy, or photoop ever could. You will be remembered for what you allowed to happen, and for the harm you deliberately ignored. This is the truth, and it will follow your legacy forever.