The family of Giuseppe ‘Joe’ Ulleri thought he was in safe hands when he was admitted to Manchester Royal Infirmary with fractures after a fall.
Don’t worry, he’s fine,’ the nurses reassured them. ‘People don’t die from broken bones.’
But Joe’s siblings Ria, Giovanni and Peter couldn’t help but worry: their brother — the eldest of the four — had Down’s syndrome, no verbal communication and was vulnerable.
In fact, they were so protective, they ensured Joe was never left alone, day or night. An army of devoted volunteer carers took turns at his bedside.
Peter, 57, visited two or three times during the week, while Giovanni, 55, and Ria, 48, who suffers from multiple sclerosis, drove up from their London homes every weekend.
Yet every time they visited Joe, 61, he often seemed to be in pain following the surgery to pin his broken pelvis and hip. He also had osteopathic neck and wrist fractures.
Ria noticed that Joe’s face no longer lit up when he saw her. Alarmingly thin, he was wasting away before their eyes.
Yet when the family raised concerns about his nutrition, or the lung infection which wasn’t clearing up, or pain relief, they were told it was all in hand.
Joe, however, never lived to enjoy the holiday to Sardinia that his family were planning so that he could see family and recuperate.
Less than a month after being admitted to the hospital on February 27, 2016, Joe died after succumbing to pneumonia.
For three years, the family believed it was just one of those tragic but unavoidable medical complications — until an inquest last week revealed the shocking neglect which contributed to their brother’s death.
The inquest jury heard how Joe was left without proper nutrition for ‘long periods’ as staff — hindered by ‘miscommunication and inaction’ — struggled to decide the best way to feed him.
Joe died having lost 2st 12lb, ‘effectively starved’ for 19 days, according to his devastated family.
Despite suffering fractures so severe, his orthopaedic surgeon noted, they were normally seen in car crash victims, following hip and pelvic surgery, Joe was given only paracetamol as pain relief.
He had difficulties swallowing, yet was kept lying flat in traction, allowing fluids to build up in his lungs.
Even more distressing, two days before his death, when medical staff tried to insert a gastro-nasal tube without sedation at 2.30 am, Joe was so traumatised he had to be physically restrained.
In a narrative verdict, the jury said the lack of nutrition, delays to procedures to resolve his condition and ‘a failure in his overall care’ constituted ‘neglect’. The cause of death was insufficient nutrition, osteopathic fractures and pneumonia.
‘It wasn’t until the inquest that we learned just how much Joe had been neglected,’ says Ria, an actress. ‘It was horrific. It seemed so cruel.’
The Ulleri family say they are now campaigning to reduce the number of premature deaths of people with learning disabilities. They hope Joe’s story will be a ‘catalyst for change’.
Calling for a Ministry of Health review, they say lessons still need to be learned ten years after the death of another vulnerable patient, Martin Ryan, 43, who died of starvation in an NHS hospital after 26 days without food following a stroke. Mr Ryan, like Joe, had Down’s syndrome.
Disability charity Mencap, whose 2008 report Death By Indifference first highlighted this issue, estimates that as many as 1,200 people with learning difficulties are still dying prematurely in the UK each year.
Giovanni, 55, an award-winning documentary maker, says: ‘We’ll never know what might have happened if Joe had received the care he deserved.
‘There were opportunities, I feel, when his life could have been saved, and I believe the reason why he wasn’t given that chance is because he was effectively discriminated against.
The way my brother was treated was cruel and inhumane — and the most upsetting part is that we didn’t know until after he had died. We trusted the medical staff who kept telling us he was fine.
‘To hear that Joe had to be held down to have a tube shoved down his throat in the early hours of the morning, unable to refuse or say no, was deeply upsetting.
‘My brother was treated like a second-class citizen, as if his life was somehow not worth as much as yours or mine because he had a learning disability and didn’t have a voice.’
When Joe was born in 1954, the term Down’s syndrome had yet to be applied to the genetic condition caused by an extra chromosome in a developing baby’s cells.
Giovanni still has the letter from doctors advising his late parents, Pietro and Frances-china, to put Joe into Calderstones Hospital in Blackburn — a grim former mental asylum which provided institutional care for children such as Joe.
The Ulleris, who settled in the UK from Sardinia after World War II, refused.
‘My father always used to say that Joe was a blessing, a gift from God, and to my parents’ huge credit, they took my brother everywhere at a time when you didn’t see anyone with Down’s syndrome around and there was a lot of abuse,’ says Giovanni.
‘Joe wasn’t hidden away, they were hugely proud of him, which I am deeply grateful for because Joe was my best friend, from the day I was born. He was just a joy for all of us.’
When their mother died from cancer in 1975, aged 45, when Ria was only four years old, their ‘heroic’ father single-handedly brought up all four children with the help of the Italian community who rallied round.
Pietro, who was considered the best tailor in Manchester, closed his shop and worked from home so he could care for Joe.
At 85, Pietro became too old to cope and Manchester’s social services stepped in. The council applied for a deprivation of liberty order as Joe was unable to look after himself, and in 2013 Joe was placed at the L’Arche supported-living home in Withington.
The existence of that order and Joe’s placement in social services care meant the NHS Trust was legally obliged to investigate his death.
The family believe the first failing came when Joe was taken to A&E by L’Arche staff after he was found injured on the floor of his bedroom at 5am, having fallen on February 26, 2016.