TREATED AS IF HIS LIFE WAS WORTHLESS
Joe had Down’s and couldn’t speak. Yet shockingly he was ‘starved’ for 19 days on an NHS ward and died. Small wonder that his horrified family say he was...
‘Don’t worry, he’s fine,’ nurses said ‘How I wish now I’d kicked up a fuss’
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 Franceschina, 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.
After initial examinations, Joe was discharged, according to the family’s barrister Simon Cridland, ‘with an undiagnosed broken neck, undiagnosed broken wrist and undiagnosed broken hip’. Professor Peter Selby, who was asked by the hospital to prepare a report on Joe’s care, told the inquest this first assessment was ‘acceptable’, noting that there was no ‘clinical suggestion of injury elsewhere’, so he was ‘appropriately treated and discharged’.
But Giovanni says: ‘Just because someone can’t tell you they are in pain doesn’t mean they aren’t seriously injured, so to us it’s totally unacceptable.’
When concerned care home staff took Joe back to hospital the following day, scans revealed the fractures — their severity being the result of an undiagnosed osteoporosis.
The surgery to repair Joe’s hip was successful, but given his difficulty swallowing and the risk of aspiration, he was declared nil-by-mouth on
March 4. By then, all he’d eaten were a couple of spoonfuls of Weetabix, but it’s not known exactly what nutrition he received because, the court heard, it hadn’t been fully recorded on his charts.
A gastro-nasal feeding tube was inserted March 9 but removed after 24 hours when Joe, distressed and uncomfortable, kept trying to pull it out and it was dislodged.
One carer, trained nurse Sister Christine O’Grady, told the inquest she had such ‘grave concerns’ about the lack of pain relief for Joe that she had said to one hospital worker: ‘I’ll see you in court.’ On March 9, after visiting Joe in hospital, a care manager for Manchester’s social services sent an e-mail to the hospital’s safeguarding department raising concerns over lack of adequate pain relief, fluid and nutrition, but senior medical staff never saw it. Family, too, spoke up for Joe. ‘One time, Joe was clearly in pain and I rushed out and asked one of the nurses: “Sorry to disturb you, I know you’re really busy, but could you please take a look at my brother because I think he’s in a lot of pain,” recalls Giovanni, who has worked for the current affairs programmes World In Action, Panorama and C4 Dispatches.
‘She replied: “I’ve got 20 normal patients to deal with, I’ll get round to it as soon as I can.” I was really upset, but I didn’t say anything at the time because I was worried I’d annoy the nursing staff and it might cause a problem for Joe.
‘How I wish now I’d kicked up a fuss, demanded to see whoever was in charge, but I trusted the medical staff. I thought they knew better than us. But I feel I failed my brother and will live with that guilt for the rest of my life.’
On March 16, it was agreed with the family at a ‘ best interests’ meeting at the hospital that a feeding tube would be inserted directly into Joe’s stomach on March 18 to resolve the issue about feeding.
Peter Ulleri says: ‘I told staff my brother’s condition was deteriorating due to lack of nutrition and I couldn’t understand why this operation wasn’t being done immediately. I said: “What’s the delay? He could die from this.”
‘I was told it couldn’t go ahead that day because they were short of an anaesthetist, so Joe had to wait another two days. There was no urgency. There seemed to be a complete lack of ambition.’
Unknown to the family, a nasalgastric tube had to be temporarily refitted to feed dye into the stomach which would show up on X-ray to help doctors correctly site the thin feeding tube.
Joe’s carer that night, David Kraus Ward, told the inquest he advised hospital staff that Joe needed pain relief and sedation, but the 20-minute procedure went ahead in the early hours without it.
‘He was the most distressed at that point that I’ve ever seen him,’ he added. Joe died two days later.
Peter Ulleri says: ‘Joe was in a first- class building but received third-rate care. This isn’t about the individuals working within the NHS, I believe it’s a problem with leadership and management.
‘After Joe died, at a meeting with senior hospital staff, I asked who’d been in charge of Joe’s care. They couldn’t give me an answer.’
It was one of Joe’s volunteer carers — a retired GP who’d seen his own wife succumb to pneumonia — who warned the Ulleri family that Joe was dying, prompting Giovanni to demand a meeting with a registrar who confirmed Joe’s chest infection was serious and the next 48 hours were critical.
‘I had a phone call at 5am on March 20 from a nurse saying: “You need to come over,”’ says Giovanni, who was staying at a nearby hotel overnight with his sister.
‘Joe was struggling and his breathing was getting more shallow. The hardest thing I have ever had to do in my life was to go and tell my father that Joe didn’t have long, bring him to the hospital and say goodbye.
‘My dad was saying: “I told you. I told you they just don’t care.”
‘I said: “It’s not like that, Dad, these things happen.” That was before I had any idea of what had really happened.’
Today, Ria still hasn’t recovered from Joe’s death. ‘I held Joe in my arms and I said goodbye as he took his last breath,’ she says. ‘My heart was breaking. He’d lost so much weight, he was a shadow of himself.’
That grief was compounded by their father’s death at 92, in March.
After the inquest, Manchester University NHS Trust publicly apologised for the failings in Joe’s care, admitting ‘it fell well below our standards’.
Professor Jane Eddleston, the Trust’s joint group medical director, added that measures had been implemented to ensure this did not happen again,including ‘extensive work on nutrition and hydration’ and ‘how we care for patients who have a learning disability’.
An NHS England spokesman said they were ‘taking further steps to make sure every local area reviews all deaths of people with a learning disability, autism or both, so staff can improve care’.
Giovanni adds: ‘We need to look at the way we treat the most vulnerable members of society — because if we get it right for them, we get it right for everybody.
‘I love the NHS, it is our most treasured gift, but unfortunately when it came to my brother he was not given the care or treatment you or I would have received and that is shameful and appalling.’
DID someone with learning difficulties in your family experience similar abuse or neglect? Email femailreaders@ dailymail.co.uk
‘I said goodbye as he took his last breath’