Daniel Klosi was a bright, happy four-year-old who loved playing with his friends at nursery, baking cakes and going to the cafe near his home in North London with his mum, Lindita and dad, Kastriot. On their living room wall is a huge portrait of him: a little boy with a smiling face and a rucksack on his back.
He was meant to start school last month. But Daniel, who was reading fluently at the age of two, will never wear his new rucksack or show his teachers his progress with reading and numbers.
He died from sepsis in the early hours of April 2 this year after his parents had taken him to A&E at the nearby Royal Free Hospital a total of four times – on each occasion begging doctors to take his worsening condition seriously.
Today, the couple are poleaxed by shock and grief, the loss of their beloved, vibrant boy still utterly incomprehensible.
‘I visit his grave and I take him flowers but I can’t believe he is there,’ Lindita says. ‘Since Daniel’s death life has held no meaning and never will again, because he was my only child. Without him, everything is broken.’
The day is warm but Lindita, 43, closes the window because she cannot bear to hear the sound of children at Daniel’s nearby nursery, laughing and playing outside. A psychiatrist, she finds it hard not to blame herself for not doing more.
Even in the midst of her grief, she’s scrupulously courteous and polite, and when she went to A&E with Daniel, it’s clear she took great care not to pull rank or make the junior doctors assessing her son feel uncomfortable.
‘Although I’m medically trained, in that situation I was a parent first,’ she says. ‘It wasn’t the place to show off. I didn’t think adding pressure would help.’
Lindita and Kastriot, 50, who works with autistic teenagers, did everything that concerned and vigilant parents are advised to do. When Daniel became increasingly ill over a period of six days in April, they phoned 111 and took him straight to hospital on the call handler’s advice. But it is of no comfort. Lindita is tortured by self-reproach.
‘I should have taken him to another hospital,’ she says, staring at Daniel’s toys, still piled in the corner of the room. ‘I trusted the doctors to know better than I did – I shouldn’t have.’
Sepsis is a life-threatening condition caused by the body overreacting to an infection, leading to a collapse in blood pressure and organ failure.
Shockingly, ten years after a landmark report that led to new standards for diagnosis and treatment, lives are still being unnecessarily lost to sepsis because hospitals are making the same mistakes as a decade ago.
That was the damning conclusion of the health ombudsman published last week. This came just weeks after Health Secretary Steve Barclay promised he would move quickly to implement Martha’s Law, after the avoidable death from sepsis of 13-year-old Martha Mills two years ago at another London hospital, enshrining families’ right to a second opinion if they feel their concerns are not being heard.
A coroner ruled that Martha would probably have survived if doctors had identified the warning signs of sepsis and transferred her to intensive care earlier, as her parents had asked. Prompt treatment with antibiotics and fluids would almost certainly have saved Daniel’s life, too.
He’d had a cough and a slight temperature for a few days before Lindita and Kastriot started to feel concerned. They gave him paracetamol and he was able to go to nursery. But on the evening of Sunday, March 26, his dry cough worsened and he seemed to be struggling to breathe, so they took him to A&E.
After four or five hours, Daniel was finally seen by a doctor and given a liquid steroid which eased his cough and he went back to nursery on Monday.
He was his normal self during the day, but still had a slight temperature each evening, indicating some kind of infection. ‘I thought it would pass, as childhood illnesses usually do,’ says Lindita.
But on Thursday evening Daniel became drowsy and shivery, and had no appetite. His breathing was laboured and he had a fever of 39.5c (normal is 36.4c).
Paracetamol and ibuprofen did not bring his temperature down, so at 11.30pm, Lindita and Kastriot took him back to the hospital. By the time a doctor saw him at 4.30am, he’d vomited three times and was complaining of tummy pain.
‘She gave him more paracetamol and an anti-sickness drug. We were worried about his chest, which was crackling, but she brushed us aside,’ Kastriot says. ‘She said, ‘It’s just a virus, it’s everywhere.’
‘We’d never seen him this ill, but we thought, ‘They are the experts. They know more than we do,’ and we took him home.’
By the next day Daniel was so unwell he could find comfort only in the arms of his parents. They took it in turns to hold him and rub his tummy.
‘He didn’t eat, sleep or pass urine for 12 hours,’ says Lindita.
Early on Saturday morning, almost a week since Daniel first fell ill, Lindita called 111. The nurse operator listened carefully to her thorough description of his condition: his temperature, lack of urine output and the fact his colour was changing from pink to pale and blotchy were all red-flag symptoms of sepsis.
Lindita was advised to take him straight back to A&E, where a referral would be waiting.
But instead of kindness and concern, they were met with condescension and apathy. When they arrived at 8am a frosty receptionist informed them: ‘We don’t take referrals from 111.’
‘You feel so small sometimes . . .’ Lindita says quietly, shaking her head in disbelief. ‘They knew nothing about Daniel’s deteriorating condition and we waited another five hours to be seen.’
‘It was kind of a nightmare,’ she adds, with some understatement. ‘You start to think of yourself as a nuisance. You try to do everything for your child, but you can’t get anything right.’
When they finally saw a doctor, Kastriot, concerned that Daniel’s tummy pain might be appendicitis, asked: ‘Could you order some blood tests or an ultrasound to make sure it is what you think?’ But his concerns were dismissed. ‘These small things could have saved Daniel’s life,’ Kastriot says. ‘But again, the doctor said, ‘Trust me. It’s a virus. He’ll be better in a few days.’
At 1pm, Daniel was discharged. At home, his parents took it in turns to hold their son, who was groaning with pain and could not be put down. At 4pm, they took him back to hospital for the third time in 24 hours. ‘The receptionist asked sharply, ‘Why did you come back? Didn’t the doctor tell you to go home?’,’ Lindita says. ‘She didn’t even want to book us in.’
Instead, unbelievably, while Kastriot held their dying child, the couple were asked to fill out a form about their ethnicity and religion to ‘update hospital files’.
‘We sat in the waiting room for another five hours while Daniel deteriorated in front of our eyes,’ he says. ‘His skin was clammy and blue, his extremities cold.’
In desperation Kastriot took a video of Daniel, hoping if he showed the nurses how ill his son was he’d be seen. He brings up the images on his phone, his jaw clenched tight, his hands shaking. ‘It was as if they were punishing us,’ he says with unbearable sadness. ‘To this day I cannot understand why they didn’t help us.’ At 9.40pm a young doctor tried to take a blood sample, but Daniel’s veins had collapsed. Still no alarm bells rang.
‘The most enraging thing is that he didn’t have a clue,’ Lindita says, raw anger surfacing. ‘A nurse was teaching him – between them, they eventually filled a syringe and then we were left alone again.’
An hour later, the results came back and Kastriot recalls: ‘A paediatrician and 20 doctors rushed into the room, one with a portable X-ray, another trying to put lines in with fluids and anti-biotics. Daniel didn’t manage to get any of them.’
Kastriot howls with anguish. ‘He was trying to say something. He wanted a hug. He was whispering the names of all the people he loved. He died in front of us, drowning in his own blood.’
Doctors tried to resuscitate Daniel, but he’d had a massive internal haemorrhage and it was too late. The blood test results showed he’d had the bacterial infection, Strep A and confirmed he had sepsis. An exact cause of death is yet to be confirmed by posy mortem. ‘The consultant said, ‘We’re so sorry, he deteriorated so fast,’ ‘ Lindita says. ‘How could she say that? It wasn’t true. He’d been deteriorating for days, but no one cared. And that’s how we lost our beautiful Daniel.’
Dr Ron Daniels, an NHS consultant in intensive care at Good Hope Hospital, Birmingham, and founder and CEO of The UK Sepsis Trust, has spent most of his working life raising awareness of sepsis. Every year there are around 245,000 cases – 3,000 of them children – in the UK, with 48,000 dying, including 300 children.
‘To put that figure into perspective, meningitis – which we all fear – claims fewer than 70 lives a year across all ages, so in comparison this is a really common problem,’ says Dr Daniels.
‘In my area in the Midlands, I know three professional couples – including doctors – who have lost young children in similar circumstances this year. The overarching theme of helplessness is common to all, including not being listened to – despite several of these parents being medical professionals themselves.’
Sepsis can occur as a consequence of any infection, bacterial (such as pneumonia or a urinary tract infection) or viral (a tummy bug or Covid-19, for instance). It can also be caused by something as simple as a cut or a sting. Most hospitals use a paediatric early warning score (PEWS) to calculate how ill a child is – this looks at signs such as heart rate, blood pressure and oxygen levels.
‘If the PEWS score is elevated or ‘triggering’ and the child is seriously ill with what appears to be an infection, then the clinical team should treat the child as having sepsis,’ says Dr Daniels.
‘This will include giving antibiotics, IV fluid resuscitation, getting the most senior help available as quickly as possible and the sending off of a full set of blood tests.’
But he adds: ‘There is another issue here around ‘softer’ signs. Parents are usually very well attuned to their children. Repeated presentations of the same child to A&E should in itself be a red flag. If a parent is saying, ‘My child is deteriorating, he’s worse than yesterday, I’ve never seen him this ill before’, it’s a very brave clinician who ignores that parent.’
Apart from the unspeakable tragedy for the parents, ‘it is very frustrating to hear stories like Daniel’s’, he says. ‘Why do healthcare professionals not realise that a third A&E attendance in two days is a red flag? Just look more closely. If you see multiple presentations of a deteriorating child with suspected infection, think, ‘Am I dealing with sepsis?’ ‘
Professor Akash Deep, director of Paediatric Intensive Care at King’s College Hospital, London, and also an international expert on sepsis, adds: ‘It is when healthcare professionals don’t think about sepsis that things go wrong.’
His advice to parents is clear: ‘Trust your instincts. You know your child better than any health professional. If they have an infection and are not feeding, are passing less urine or in any way looking different to how they normally do, ask the healthcare professional, ‘Is it sepsis?’ and if the answer is no, ask them, ‘If it isn’t sepsis then what could it be?’ This holds true for all healthcare professionals, including triage nurses.’
Ron Daniels adds: ‘If you feel you’re being brushed off by health professionals, who are there to save your child, it’s important to escalate things, ask to see a more senior doctor; ask for blood tests; ask for a second opinion.’
Daniel’s parents believe two factors above all else led to fatal errors in his case – he was seen by inexperienced doctors and they didn’t listen. Their behaviour seems utterly inexplicable – even cruel – to Kastriot and Lindita, who are convinced less sick patients were treated before Daniel while their increasing concern for their son was met with condescension and apathy.
‘It’s a very sad thing to say, but doctors are sometimes – in the wake of the pandemic and all the lauding of the NHS which that brought about – more arrogant than they used to be, and training during Covid-19 has suffered,’ says Ron Daniels. ‘A lot of junior doctors are undertrained and inexperienced. It’s the health professional’s job, not the parents’, to identify what is wrong with their child.’
The UK Sepsis Trust has been supporting Lindita and Kastriot. ‘A support nurse, Katie, contacted me two or three times a week after Daniel died,’ Lindita says. ‘She was the only person who understood what we are going through.’
Royal Free London NHS Foundation Trust, which runs the hospital, has launched an investigation and the couple have asked medical negligence lawyers at Irwin Mitchell to help them get some answers.
‘To be left waiting with a dying child . . .’ Kastriot shakes his head. ‘To me, it suggests something is fundamentally wrong with the system. How can you call it an emergency department when there is no sense of urgency?’
Kastriot is tortured by the way Daniel died – frightened and in so much pain.
‘I could have come to terms with it if everyone had done their best,’ he says. ‘If they’d done something. But to die in that way . . .’
Lindita’s last memory of her son is of holding his hand and singing him his favourite made-up song. She couldn’t bear to watch his last moments or see him after he died. The trauma replays over and over.
‘What happened to us shakes your beliefs, your values and your self-esteem,’ she says.
‘Daniel depended on us, it was our duty to look after him. Did we do as much as we could? And why did the doctors who could have helped him let him die?’
A spokesman for the Royal Free London said: ‘We are deeply sorry that Daniel died while under our care and would like to share our sincere and heartfelt condolences with his family.
‘An investigation into the care provided to Daniel is ongoing. We have been in regular contact with his parents and have been sharing the findings of the investigation with them as it continues to progress.
‘Once again, we would like to say how deeply sorry we are for their loss.’
Sarah Carter is a health and wellness expert residing in the UK. With a background in healthcare, she offers evidence-based advice on fitness, nutrition, and mental well-being, promoting healthier living for readers.