A heartbroken mum claims her disabled son was “warehoused” in a hospital for more than a year before his death.
Emma Findlay spoke out against people with learning disabilities languishing for years in hospitals and care homes.
Her son Keith, 30, died after living in a hospital room for 19 months because no care package could be found for him.
Keith had a progressive degenerative disease which meant it was a race against time to allow him the comfort of living and dying at home.
Emma, 62, from Cardonald, Glasgow, said: “All he wanted to do was come home. It was so hurtful to see him living alone in a hospital room. It wasn’t really living.
“He was claustrophobic, lonely and isolated. It was just awful. I have deserved the dignity of living the rest of his life at home with me.”
A shortage of person-centred care has resulted in 67 people with learning disabilities living in Scottish hospitals, seven for more than a decade.
Enable Scotland last month launched the #MyOwnFrontDoor campaign, demanding an end to hospital living for people with learning disabilities.
The charity insists adults with learning disabilities have a human right to be supported to live at home, in the area of their choosing.
More than 1000 adults with learning disabilities have been sent by local authorities to live “out of area”, sometimes to England, a long way from loved ones.
Keith had mitochondrial disease, a progressive genetic disorder which attacks the organs, the muscles and causes brain damage.
He tried to kill himself when he was 16 after being targeted by bullies because of his disabilities and was admitted to Leverndale psychiatric hospital in Glasgow.
At that point, Emma agreed to let South Lanarkshire Council social work department take on his guardianship but said she did not realize she was relinquishing control over her son.
She added: “If I could go back, I would never have agreed to that. I was utterly powerless from then on.”
Keith was kept in Leverndale for 10 months because there was no care package available, despite being deemed fit to go home after a month.
Emma was working full-time and could not cope with Keith on her own.
In the years that followed, he was placed in care homes, one as far as Falkirk.
On April 20, 2020, he was admitted to Forth Valley Royal Hospital in Larbert, Stirlingshire, after a major seizure.
Although doctors said his lifespan was limited, they declared him medically fit for release in June, but he remained in hospital until his death last November.
Emma said: “Every extra day my son spent in the hospital made him more depressed and upset.
“I felt powerless to do anything to get him out. With the right support, the right place for him was with me.”
Enable Scotland stepped in with help from Civil Rights First. Eventually the social work department agreed to consider the possibility of Keith returning home to live with Emma.
Tragically, he passed away days after the possibility had opened up.
Emma said: “My only son died in a room in a hospital when he could have been in his own bedroom surrounded by everything he loved.
“It was so cruel, so hurtful. I never want that to happen to another family. That’s why Enable Scotland’s campaign means so much to me.”
Jan Savage, director of Enable Scotland, said: “We need a plan in place now for every person in Scotland who is in this position to access their right to live in the home they choose, in the community they choose, close to the people. they love.
“Unforgivably, for Emma and her family, it is already too late.”
South Lanarkshire Council’s chief social work officer, Liam Purdie, said he could not discuss individual cases.
But he added: “In the face of well publicized and ongoing challenges, our community teams and hospital colleagues continue to work closely together.
“Our unremitting and unified priority is to provide safe patient and service user care.”
He said the council was using cash from a £20million Scottish Government Community Living Change Fund to develop services to reduce the need for out-of-area placements and delayed discharge for people with learning disabilities and complex needs.
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George Holan is chief editor at Plainsmen Post and has articles published in many notable publications in the last decade.