Home / Life & Love / Family didnt know their Downs syndrome brother was being neglected

Family didnt know their Downs syndrome brother was being neglected

The sister of a 61-year-old man with Down’s syndrome who died after going without food for 19 days, because of ‘miscommunication and inaction’ by hospital staff, has spoken of her heartbreak.

Giuseppe ‘Joe’ Ulleri suffered an unexplained fall at home in a supported living complex in Withington, Manchester, and was admitted to Manchester Royal Infirmary on February 26, 2016 after being found in a pool of blood on his bedroom floor. 

He passed away less than a month later, after poor communication between medical staff and delays over deciding how best to feed him left him without nutrition for 19 days, causing him to lose 2st 12lbs.

Speaking publicly for the first time since her brother’s death, Ria Ulleri told MailOnline that Giuseppe was ‘sweet and funny’, and that her family did not know the extent of his neglect while he was in hospital. 

‘It wasn’t until the inquest that we learned just how much Joe had been neglected. It was horrific. It seemed so cruel,’ she said.

‘All through Joe’s life, we had fought for him to be included and treated with respect. 

‘Yet at the very end, he was failed by the people who were supposed to look after him.’ 

Speaking publicly for the first time since her brother's death, Ria Ulleri said Giuseppe  Ulleri was 'sweet and funny' and that her family did not know the extent of his neglect until his inquest

Speaking publicly for the first time since her brother's death, Ria Ulleri said Giuseppe  Ulleri was 'sweet and funny' and that her family did not know the extent of his neglect until his inquest

Speaking publicly for the first time since her brother’s death, Ria Ulleri said Giuseppe  Ulleri was ‘sweet and funny’ and that her family did not know the extent of his neglect until his inquest

Giuseppe 'Joe' Ulleri suffered an unexplained fall at home in Withington, Manchester, and was admitted to Manchester Royal Infirmary (MRI) on February 26, 2016. Less than a month later he passed away after 19 days without food

Giuseppe 'Joe' Ulleri suffered an unexplained fall at home in Withington, Manchester, and was admitted to Manchester Royal Infirmary (MRI) on February 26, 2016. Less than a month later he passed away after 19 days without food

Giuseppe ‘Joe’ Ulleri suffered an unexplained fall at home in Withington, Manchester, and was admitted to Manchester Royal Infirmary (MRI) on February 26, 2016. Less than a month later he passed away after 19 days without food

Ria, 48, an actress from London, said: ‘Joe was a sweet and funny man, but he needed support. It is tragic that the people he relied on to care for him were the ones who let him down.

‘Growing up we knew there was something different about Joe, but we took it all in our stride. He couldn’t really talk much but he made himself understood no problem.

‘He was really funny and entertaining, and we were very close. Our parents were Sardinian and Joe loved to dance to Sardinian music. He liked gardening too.

Ria said that when she left her brother in hospital, he held her hands and wouldn't let go. She added that looking back, 'it was as if he knew'

Ria said that when she left her brother in hospital, he held her hands and wouldn't let go. She added that looking back, 'it was as if he knew'

Ria said that when she left her brother in hospital, he held her hands and wouldn’t let go. She added that looking back, ‘it was as if he knew’ 

Joe (centre) was the oldest of four siblings (three pictured). Their mother, pictured right, had died when they were little and they were raised by their father, Pietro (left)

Joe (centre) was the oldest of four siblings (three pictured). Their mother, pictured right, had died when they were little and they were raised by their father, Pietro (left)

Joe (centre) was the oldest of four siblings (three pictured). Their mother, pictured right, had died when they were little and they were raised by their father, Pietro (left)

Ria, 48, an actress from London, said: 'Joe (pictured) was a sweet and funny man but he needed support. It is tragic that the people he relied on to care for him were the ones who let him down'

Ria, 48, an actress from London, said: 'Joe (pictured) was a sweet and funny man but he needed support. It is tragic that the people he relied on to care for him were the ones who let him down'

Ria, 48, an actress from London, said: ‘Joe (pictured) was a sweet and funny man but he needed support. It is tragic that the people he relied on to care for him were the ones who let him down’

Joe with his father Pietro.  Despite his objections when Pietro became ill, and Ria was diagnosed with MS in 2013, Joe moved into supported living

Joe with his father Pietro.  Despite his objections when Pietro became ill, and Ria was diagnosed with MS in 2013, Joe moved into supported living

Joe with his father Pietro.  Despite his objections when Pietro became ill, and Ria was diagnosed with MS in 2013, Joe moved into supported living

‘There was pressure from the doctors for Joe to go into residential care but my dad wouldn’t hear of it. Joe was part of the family and that’s just how it was.

Giuseppe was the eldest of four children. Their mother had died when they were little, and they were raised by their father, Pietro.

Despite his objections, when Pietro became ill and Ria was diagnosed with MS in 2013, Joe moved into supported living.   

‘The move gave Joe independence and it gave my dad some respite so it was better for everyone,’ Ria said. 

‘Although it was a difficult decision, he liked it there and the staff were fantastic.’

After his fall, Guiseppe fractured his pelvis, wrist and neck, but his injuries were initially missed by medics. They were only spotted after his carers brought him back to hospital a day later over concerns he could not walk or swallow properly. 

Speaking of his move into assisted living, Ria said: 'The move gave Joe independence and it gave my dad some respite so it was better for everyone'

Speaking of his move into assisted living, Ria said: 'The move gave Joe independence and it gave my dad some respite so it was better for everyone'

Speaking of his move into assisted living, Ria said: ‘The move gave Joe independence and it gave my dad some respite so it was better for everyone’

After his fall, Guiseppe fractured his pelvis, wrist and neck but his injuries were initially missed by medics and were only spotted after his carers brought him back to hospital a day later over concerns he could not walk or swallow properly

After his fall, Guiseppe fractured his pelvis, wrist and neck but his injuries were initially missed by medics and were only spotted after his carers brought him back to hospital a day later over concerns he could not walk or swallow properly

After his fall, Guiseppe fractured his pelvis, wrist and neck but his injuries were initially missed by medics and were only spotted after his carers brought him back to hospital a day later over concerns he could not walk or swallow properly

His difficulty swallowing continued for several days, leading to staff deciding to make him nil by mouth and put him on a naso-gastric feeding tube on March 9 to prevent him choking. 

But he found the tube uncomfortable and it was removed a day later. 

The inquest heard poor communication between medical staff and delays over deciding how best to feed him left him without nutrition for 19 days, causing him to ‘waste away’ before he died on March 20.  

Relatives told a coroner they had raised concerns with doctors about his lack of food, and described the hospital as having ‘first-rate buildings but third-rate medical care’. 

Ria 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'

Ria 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'

Ria 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’

Ria continued: ‘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 had no idea what lay ahead. But when I left he held my hands and he wouldn’t let go. Looking back, it was as if he knew.

‘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.’ 

An inquest into his death earlier this month recorded a narrative conclusion and cited an ‘overall failure of care’ and ‘failure to provide adequate nutrition’.

The inquest also found that these failures in care contributed to his death.

An inquest into Joe's death earlier this month recorded a narrative conclusion and cited an 'overall failure of care' and 'failure to provide adequate nutrition'

An inquest into Joe's death earlier this month recorded a narrative conclusion and cited an 'overall failure of care' and 'failure to provide adequate nutrition'

An inquest into Joe’s death earlier this month recorded a narrative conclusion and cited an ‘overall failure of care’ and ‘failure to provide adequate nutrition’

Speaking at the inquest, his brother Peter said: ‘We have two questions. Why the delay and did that delay contribute to Joe’s premature death?’  

‘Why was there a delay in addressing his nutritional needs?’ asked Peter. ‘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.’  

He added: ‘We also have major concerns about the quality of care he received at Manchester Royal Infirmary.

Joe with his two younger brothers as children.  Speaking at the inquest, his brother Peter said: 'We have two questions. Why the delay and did that delay contribute to Joe's premature death?'

Joe with his two younger brothers as children.  Speaking at the inquest, his brother Peter said: 'We have two questions. Why the delay and did that delay contribute to Joe's premature death?'

Joe with his two younger brothers as children.  Speaking at the inquest, his brother Peter said: ‘We have two questions. Why the delay and did that delay contribute to Joe’s premature death?’

Joe with his brother. Giovanni Ulleri had previously  told the jury when his brother was born in November 1954 his parents fell in love with the baby who had 'big eyes and a wide smile'

Joe with his brother. Giovanni Ulleri had previously  told the jury when his brother was born in November 1954 his parents fell in love with the baby who had 'big eyes and a wide smile'

Joe with his brother. Giovanni Ulleri had previously  told the jury when his brother was born in November 1954 his parents fell in love with the baby who had ‘big eyes and a wide smile’

‘The injuries he suffered were possibly life changing but they did not appear to be life threatening. There was a fragmented approach which gave us serious cause for concern. 

‘At MRI the buildings are first rate, but the care is third rate.’

Peter said he had previously raised concerns about Joe being nil by mouth and when he visited his brother two days before his death ‘he had lost a significant amount of weight.’ 

Two days later Mr Ulleri passed away with his brothers at his bedside.

Joe as a child. His brother said that Joe's life had enriched that of his three younger siblings and that they had a happy childhood. Their father called Joe 'a gift from god'

Joe as a child. His brother said that Joe's life had enriched that of his three younger siblings and that they had a happy childhood. Their father called Joe 'a gift from god'

Joe as a child. His brother said that Joe’s life had enriched that of his three younger siblings and that they had a happy childhood. Their father called Joe ‘a gift from god’

Earlier Giovanni Ulleri told the jury when his brother was born in November 1954 his parents fell in love with the baby who had ‘big eyes and a wide smile’.

‘I remember Dad telling me how Joe was not a burden but “a glorious blessing” and “a gift from God”,’ he said.

Speaking fondly about their childhood he said Joe’s life had enriched all of their lives.

‘He couldn’t talk but he was the best communicator I have ever met,’ said Giovanni.

‘We are still in shock that we won’t see that cheeky, innocent, toothless smile again or receive that gentle pat on the back or the tender embrace from one of his hugs

Joe, pictured cycling as a child, was cremated at his local church, where his family played his favourite song: 'Always Look On The Bright Side Of Life'

Joe, pictured cycling as a child, was cremated at his local church, where his family played his favourite song: 'Always Look On The Bright Side Of Life'

Joe, pictured cycling as a child, was cremated at his local church, where his family played his favourite song: ‘Always Look On The Bright Side Of Life’

‘I’m a better person for having had Joe in my life and so are all our family.’

Peter added he had phoned into a best interests meeting at the hospital on March 16 2016, where it was agreed that a percutaneous endoscopic gastrostomy, another feeding tube that is inserted into the patient’s stomach through the abdominal wall, would take place on March 18.

The witness said he believed his brother’s condition was deteriorating due to lack of sufficient nutrition, and said he told staff: ‘Why the delay? He could die from this.’       

Another witness, Sister Christine O’Grady, worked for L’Arche at the time and said she had ‘grave concern’ regarding the perceived lack of pain relief or nutrition Mr Ulleri was given in hospital.

Joe pictured with his brother's Giovanni and Peter as children. Peter said he believed his brother's condition was deteriorating due to lack of sufficient nutrition, and said he told staff: 'Why the delay? He could die from this.'

Joe pictured with his brother's Giovanni and Peter as children. Peter said he believed his brother's condition was deteriorating due to lack of sufficient nutrition, and said he told staff: 'Why the delay? He could die from this.'

Joe pictured with his brother’s Giovanni and Peter as children. Peter said he believed his brother’s condition was deteriorating due to lack of sufficient nutrition, and said he told staff: ‘Why the delay? He could die from this.’

She said that before he was made nil by mouth on March 4, 2016, he had started coughing when staff at the Manchester Royal Infirmary attempted to feed him, meaning he had not been properly fed for a considerable amount of time.

Sister O’Grady said to jurors she told a member of staff at the hospital: ‘If you don’t do anything about it, then I will be seeing you in court.’

The qualified nurse said she believed medics had decided to fit Joe with a RIG feeding tube, but was worried because that also involved a tube being placed down his nose and feared he would just pull it out.

‘I did not see Joe for a week because I was off sick, but when I went back to the hospital it was still not in place. I was really concerned about and I told them he was not getting any nutrition,’ she added.

Joe, pictured as a teenager, enjoyed fairly good health up until his death, the jury of seven men and five women heard

Joe, pictured as a teenager, enjoyed fairly good health up until his death, the jury of seven men and five women heard

Joe, pictured as a teenager, enjoyed fairly good health up until his death, the jury of seven men and five women heard

Sister O’Grady also said she did not see hospital staff refer to Joe’s ‘traffic light’ hospital passport which detailed his specific needs.

She said she felt staff from L’Arche, the supported living group where he lived, were excluded from his care and were asked to leave the room when doctors and nurses were dealing with him despite the fact ‘we knew his needs’. 

Naomi Tomlinson, who was also working for L’Arche at the time of Mr Ulleri’s death, said there seemed to be a lack of ‘joined-up thinking’ at the hospital.

Discussing the communication she had with staff the day before his death, she said: ‘Within 24 hours, there was a very quick escalation from ‘”Joe is not going to die” to “Joe is dying”.’

His brother Peter told the jury of seven men and five women that Joe had enjoyed fairly good health up until the last few years of his life.

One hospital staff member said that 'within 24 hours, there was a very quick escalation from '"Joe is not going to die" to "Joe is dying"'. Pictured: Joe as a child

One hospital staff member said that 'within 24 hours, there was a very quick escalation from '"Joe is not going to die" to "Joe is dying"'. Pictured: Joe as a child

One hospital staff member said that ‘within 24 hours, there was a very quick escalation from ‘”Joe is not going to die” to “Joe is dying”‘. Pictured: Joe as a child

‘That could be due to his relative old age for a Down’s syndrome person,’ he said.

Mr Ulleri lived with three other residents at the supported tenancy complex where staff were on duty 24 hours a day.

Despite having a troublesome knee and developing a stoop and poor eyesight he was ‘still mobile and continued to enjoy life’ which was ‘fulfilling’.

He also developed an issue with acid reflux and was diagnosed with Barrett’s esophagus, which can be an early sign of esophageal cancer.  

Manchester University NHS Foundation Trust has apologised and promised it will not happen again.

Manchester University NHS Foundation Trust has apologised and promised it will not happen again. Joe's sister Ria (pictured) said the treatment was 'cruel and horrific'

Manchester University NHS Foundation Trust has apologised and promised it will not happen again. Joe's sister Ria (pictured) said the treatment was 'cruel and horrific'

Manchester University NHS Foundation Trust has apologised and promised it will not happen again. Joe’s sister Ria (pictured) said the treatment was ‘cruel and horrific’

His cause of death was given as insufficient nutrition, osteopathic fractures, and pneumonia.

Joe was cremated at his local church, where his family played his favourite song: ‘Always Look On The Bright Side Of Life.’   

Acting area coroner for Manchester City Angharad Davies told an inquest jury: ‘Whilst in hospital Joe was looked after by a range of different staff, from nurses to speech specialists to dietitians.

‘A decision was made that he would be “nil by mouth” because of concerns he could breathe food into his lungs. A naso-gastric feeding tube was fitted, but that proved problematic and it was only in place for 24 hours.

‘After that Joe had a long period of time when he had no nutritional support, the only support was during that 24 hours when the tube was in place.’  

Sorry we are not currently accepting comments on this article.

Check Also

Nearly 100,000 children will be put in a failing primary school today

https://www.dailymail.co.uk/news/article-6926049/Nearly-100-000-children-dumped-failing-primary-school-today.html

Leave a Reply

Your e-mail address will not be published. Required fields are marked *

This site uses Akismet to reduce spam. Learn how your comment data is processed.