Down's syndrome patient dies after 19 days in hospital with no food
London - A man with Down’s syndrome suffered a ‘cruel and horrific’ death in hospital after being left without food for 19 days, his family has said.
Giuseppe ‘Joe’ Ulleri, 61, was admitted after a fall, but his sister Ria said she ‘thought he’d be home soon’.
Speaking publicly for the first time, she said he ‘wasted away’ after being ‘failed by the people who were supposed to look after him’. An inquest heard the tragedy happened because of ‘miscommunication and inaction’, with medical staff struggling to decide on the best way to feed Mr Ulleri.
He was admitted to Manchester Royal Infirmary on February 26, 2016. He died less than a month later, having lost 2st 12lbs.
His sister, 48, told how details read out at the Manchester inquest came as a shock. She said: ‘It wasn’t until the inquest that we learned just how much Joe had been neglected. It was horrific. It seemed so cruel.
‘At the very end, he was failed by the people who were supposed to look after him.’
Miss Ulleri, an actress who lives in London, said her brother was ‘sweet and funny’.
‘Growing up we knew there was something different about Joe, but we took it all in our stride,’ she said. ‘There was pressure from the doctors for Joe to go into residential care but my dad wouldn’t hear of it.’
Mr Ulleri fractured his pelvis, wrist and neck in the fall, but his injuries were initially missed and he was discharged.
Carers brought him back to hospital a day later over concerns he could not walk or swallow properly.
At the inquest, coroner Angharad Davies said that for medical reasons Mr Ulleri was made nil-by-mouth on March 4, and had a feeding tube inserted on March 9. It was removed a day later because he found it uncomfortable.
She said he had ‘long periods’ with ‘no nutritional support’ and for a long time, the ‘only nutrition he had was... when the tube was in place’.
Mr Ulleri’s brother Peter told the five-day inquest that it was agreed a tube would be inserted into his brother’s stomach on March 18. He said he told staff his brother’s condition was deteriorating due to lack of nutrition, adding: ‘Why the delay? He could die from this.’
He said the delay in giving nutrition meant Mr Ulleri, from Withington, was too weak to recover. He died two days later.
Miss Ulleri said: ‘I visited Joe in hospital and he wasn’t happy at all. He hated being in there. But I just thought it was a fall and that he’d soon be home again. I held him in my arms and I said goodbye as he took his last breath.
‘My heart was breaking. He had lost so much weight. He was a shadow of himself.’ Peter Ulleri said: ‘Why was there a delay in addressing his nutritional needs? Could more have been done to alleviate his bronchial problems?
‘We are looking to avoid future failures. We have got a lot of questions we feel are unresolved, that don’t just reflect on Joe, but on other people with Down’s syndrome.
‘At Manchester Royal Infirmary, the buildings are first-rate, but the care is third-rate.’
Another sibling, Giovanni, said of the period before a feeding tube was inserted in his brother’s stomach: ‘Not only was he thoroughly neglected, he was starved for 19 days.’
The inquest heard alternative methods of feeding, such as through a tube into Mr Ulleri’s stomach, were not considered for almost a fortnight after he was made nil-by-mouth.
Mr Ulleri’s cause of death was given as insufficient nutrition, osteopathic fractures and pneumonia. Returning a narrative verdict, the inquest jury foreman said Mr Ulleri received ‘inadequate nutrition plus delays to procedures’ to resolve his condition. Jurors described ‘a failure in his overall care, specifically nursing him in a supine position and a failure to provide adequate nutrition’. They added: ‘This constituted neglect.’
Mr Ulleri’s father Pietro died at the beginning of March, without knowing the full details of what happened. Reading a family statement after the inquest, a tearful Giovanni Ulleri said: ‘Our brother was the kindest and gentlest soul, yet he was allowed to die in the most horrendous way.’
He added: ‘There are too many Joes. All too often people with learning disabilities are treated as second-class citizens by the NHS and end up dying from indifference. The NHS and society as a whole needs to learn from Joe’s death.’
Professor Jane Eddleston, joint group medical director at Manchester University NHS Foundation Trust, said: ‘The care provided to Joe fell well below our standards and for this we apologise sincerely.’