'Our son died aged 19 after NHS mistakes - he should still be here'

'Our son died aged 19 after NHS mistakes - he should still be here' An inquest found that mistakes were made and his death was preventable The parents of a 19-year-old with a rare blood disorder said their son “should still be here” after an inquest found “mistakes” in his care contributed to his preventable death. Neil and Louise Arrowsmith’s son Isaac was diagnosed with Haemoglobin Rainier disease, a rare inherited blood disorder that increases the risk of blood clots, at the age of 18. On December 19, 2025, aged 19, Isaac developed chest pain and breathlessness and began coughing up blood. He was diagnosed with pneumonia at Macclesfield District General Hospital and was discharged without tests to rule out a pulmonary embolism. As his condition worsened, Isaac returned to A&E on December 31 but was placed under a respiratory virtual ward – designed to provide hospital-level care at home within 48 hours – rather than being admitted. He later returned to hospital, but Louise, a 52-year-old manager, said that after waiting about 20 hours without being seen, Isaac went home believing he would be followed up through the virtual ward. On January 2, he collapsed at home and died from a pulmonary embolus, deep vein thrombosis and Haemoglobin Rainier disease. An inquest later found his death was preventable, concluding he was never referred to the virtual ward team, should have been admitted to hospital instead and would likely have survived had he been there when his condition deteriorated. Neil, a 45-year-old tutor who lives in Macclesfield, said: “I think his death would have been easier to accept if there was nothing anyone could have done. Now it’s hard not to get angry – Isaac should still be here with us today and he isn’t because of mistakes in his care.” After Isaac’s diagnosis of Haemoglobin Rainier disease, he received treatment at The Christie NHS Foundation Trust, involving regular blood tests and venesection. On December 19, Isaac developed severe chest pain and struggled to breathe at his mother Louise’s house. He called an ambulance and Louise met him at Macclesfield District General Hospital, where he was diagnosed with pneumonia. Louise said she told staff about his condition, and was “shocked” to discover not all A&E staff could access patient files. Isaac was sent home with antibiotics before returning later that day after coughing up blood, but he was discharged again. No tests were carried out to rule out a pulmonary embolism, despite him displaying symptoms consistent with the condition. “We put our trust in the doctors and thought the antibiotics needed to kick in,” Neil said. He added that Isaac’s condition was “up and down” over Christmas, which the family spent together despite Neil and Louise being divorced. On December 31, Isaac saw his GP due to ongoing symptoms and was referred for a chest X-ray and blood test to check for clotting. Before the tests could take place, he returned to Macclesfield District General Hospital after coughing up more blood. He was again diagnosed with pneumonia, but a doctor requested further respiratory investigations. Instead of being admitted, Isaac was told he would receive support from the respiratory virtual ward team within 48 hours. When Isaac got home, Neil said he looked “like an old man” and began coughing up blood again, so returned to hospital that evening. Louise said he waited for about 20 hours without being seen by the respiratory team and left hospital believing the virtual ward would follow up. On the morning of January 2, Isaac was still breathless, but told Louise he “felt OK” before she went to work. Later that day, he called her struggling to breathe and she sent Neil, who lived five minutes away, to check on him. Neil said Isaac was “pale” and “confused” when he arrived, so he called 999 and tried to calm his son by encouraging him to take deep breaths. “He suddenly lunged back and was gasping for air,” he said. “I got him into the recovery position on the sofa and rang 999 again. He’s not breathing and I’m in hysterics at that point and they talked me through CPR over the phone.” Paramedics attempted to resuscitate Isaac, but were unsuccessful and he died at 3.57pm. Neil then called Louise and they told Isaac’s younger siblings, Luke, now 18, and Naomi, now 15, that “their big brother isn’t coming back”. An inquest at Cheshire Coroner’s Court concluded on May 20 after hearings beginning in January. Louise and Neil expected to hear that “nothing more could have been done”, having already received a letter from East Cheshire NHS Trust after an internal investigation said as much. However, the inquest heard that Isaac was not referred to the respiratory virtual ward team and, had he been, he would not have met the criteria and would have been admitted to hospital. The coroner added that, had Isaac been admitted to hospital on December 31, he would have been there when he deteriorated on January 2 and would have been resuscitated. The coroner concluded that this caused or contributed to his death. Neil said: “It was a bombshell moment. It was as if they didn’t even really understand what a virtual ward was themselves… or how to follow their own process.” Isaac’s cause of death was recorded as pulmonary embolus, deep vein thrombosis and Haemoglobin Rainier disease. The coroner also found insufficient weight had been given to his underlying blood disorder and associated clotting risk, although this could not be said to have caused or contributed to his death. Neil said: “There were clear signs of pulmonary embolism and they just disregarded it, it was horrendous.” In the Prevention of Future Deaths report, the coroner raised concerns that similar deaths could occur unless action is taken. Neil and Louise said they did not receive a formal apology from the hospital or East Cheshire NHS Trust at the time. Louise said: “They won’t take any accountability. I’d be concerned for anyone seen by the doctor who didn’t make the referral – in my opinion, they are not fit to practise.” Louise and Neil have reported the case to the Care Quality Commission. They have since got back together and say they are taking life “day by day”. Neil said: “We realised we needed each other. Louise is the only other person who knows what I’m going through and feeling, and vice versa. We’re also fundraising for the Scouts because Isaac went for years, and it made him the man he was.” Dr John Hunter, chief medical officer at East Cheshire NHS Trust, said: “We would like to offer our sincerest apologies to Isaac’s family and friends, he did not receive the high level of care he should have had from us and for this we are truly sorry. Following the coroner’s review of the evidence and the issuing of a Prevention of Future Deaths report after Isaac’s tragic death, we have considered the findings fully and undertaken a detailed review of the areas where we fell short in Isaac’s care. “As a result, we’ve strengthened our educational programme within the trust to support clinicians in recognising how and why a misdiagnosis may happen. In addition to this we’ve also increased clinical awareness of thrombotic risk factors and the importance of early recognition and escalation. “We’ve also undertaken a review of our electronic patient record system, the findings from which will help support clinical decision-making in identifying and managing patients with an increased risk of venous thromboembolism. And we’ve also carried out a thorough review of how we conduct multidisciplinary reviews within the trust, and an action plan has been drawn up to address the issues identified by the coroner.” A spokesperson from the Care Quality Commission said: “We are aware of this very sad case and have had contact from Isaac’s family. We offer them our condolences. We are following up with the trust to seek further information and are reviewing their response to the coroner’s Prevention of Future Deaths report to determine whether there’s a need for further action on our part.” The family are receiving support from medical law specialists Enable Law regarding their legal options and any further investigations. Mike Bird, a partner and their solicitor at Enable Law, said: “It’s agonising to read Isaac’s story. The coroner’s inquest was incredibly important, because without that, the family would have been misled into believing that Isaac’s death was an unavoidable tragedy. “I desperately hope the changes the trust says it has implemented actually have a lasting impact on the NHS front line. We are in Isaac’s family’s corner.” To donate to the family’s fundraiser, visit JustGiving.