When Joanne Barrett moved her disabled son into a care home she did it with best intention, little did the mum know he would be dead within three months.
The condition had made Michael chronically hungry and obese. He was looked after by his mum until he was 25 when she had to undergo an operation.
With no brothers or sisters to care for him Social services arranged for the 25-year-old to be taken into care.
Michael wanted to be moved into a care home specialising in his condition, whilst this was being arranged he was taken to Gayton House in January 2019.
His mum had concerns about the temporary home, she knew it was not the best place for her son.
The staff failed to provide adequate care for residents, on one day when his mum phoned Michael she was horrified to hear he was having lunch in bed because all the workers were still in bed.
Joanne, 55, said she was never contacted by the home to discuss her son’s food.
"A healthy diet does not consist of chicken nuggets, pizza, fried eggs and toast and then no exercise," she added.
Despite his condition Michael was allowed independent access to the kitchen.
On March 27, 2019, Joanne spoke to her son around 10am, it was the last communication she had with him. Before midday he suffered a fatal heart attack.
When Michael first went to the care home he weighed 29.6 stone at the time of his death he was 32.5 stone.
At the time Coroner said there was no evidence Michael died an unnatural death, but his family disagree, they believe the lack of care he received is partly to blame for his heart attack.
The case has now been reopened.
Being allowed more time to investigate Michael’s death the Coroner now says he died of complications related to his medical condition, but there was a “really serious failure to provide basic medical care” during his time in the care home.
Chris Callender of Simpson Millar Solicitors represented Michael’s family, they said the inquest found the "cumulative impact of the failure to provide appropriate care which may well have led to the loss of Michael’s life".
Joanne said: “I definitely feel let down by the system. I can’t even express in the strongest way you want.
“When you know something was preventable. When you’re dealing with people’s lives.
"Michael was there for three months and died there. You cannot compute it. How many people has this happened to?”
Chief Executive Officer of Prader-Willi Syndrome Association Susan Passmore told MyLondon: “This inquest has revealed how critical it is that anyone caring for someone with Prader-Willi syndrome is properly trained and their care properly managed.’’
A recent investigation by the NHS revealed the proportion of patients who die in hospital with learning disabilities is 64% compared to 47% of the general population.
Joanne is now trying to raise awareness of Prader Willi syndrome, the care system and the judicial process which she believes is “so dysfunctional” and “not fit for purpose”.
Michael was a devout Christian who helped elderly people learn computer skills and supported young people in the community. His mum said he worked so hard for others she had to start printing business cards for him.
There were 350 people at Michael Barrett’s funeral.
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