A review has been launched into the care of a man with a learning disability who spent most of his adult life “incarcerated” in hospitals.
Clive Treacey died in 2017 following years of institutional care that his family described as “cruel and inhumane”.
The review, commissioned by NHS England, will look at the circumstances leading up to Clive’s death as well as the care he received from various organisations throughout his life.
Clive’s sister Elaine Clarke told Sky News the family were pleased his case was finally being looked at.
“There is an immense sense of relief that his existence is recognised,” she said.
“Clive’s life mattered.”
Clive was 47 when he died following an epileptic seizure at a privately-run unit in Nottingham, which was funded by the NHS.
Clive had a learning disability, epilepsy and complex mental health needs.
His inquest heard that a machine used to help him breathe at night was not working at the time of his death, while the carers on duty the night he died had only basic first aid training.
Sky News first spoke to Clive’s family in the spring last year.
Since then, Clive’s family have continuously pushed for an investigation into why he spent most of his adult life detained in several NHS and independent mental health and learning disability units.
Elaine added: “We want everything from this review – justice, accountability and a legacy for Clive.
“We should never have had to fight to keep him alive.
“There are systematic failings in the care programme that we feel were designed to keep him there.
“Clive wanted to live his life and make his own choices but was incarcerated and kept from those choices.
“Nothing on this planet will justify that.”
The review is part of the Learning Disabilities Mortality Review Programme (LeDeR), which investigates premature deaths of people with a learning disability and is funded by NHS England.
It will assess whether Clive’s death was avoidable and identify ways of improving services to prevent other deaths.
The review could make recommendations nationally for the care of people with a learning disability, as well as advise for a further in-depth look at Clive’s case.
Clive is one of 50 people with a learning disability or autism who died while being held in secured units between 2015 to 2019, as revealed by Sky News.
All were under an NHS scheme called “The Transforming Care Programme”, which aims to move people out of these units and into the right support in the community.
The concerns raised by Clive’s family echo the case of 43-year-old Jason Thomson, who spent the last eight years of his life detained in a unit 150 miles away from his family.
He died in 2018.
Jason’s family told Sky News the number of deaths in these units is “appalling” and called on Health Secretary Matt Hancock to do more.
There are currently 2,085 people with a learning disability or autism in hospitals in England; 225 are under the age of 18 and 800 people have been in hospital for more than two years.
A recent parliamentary inquiry into the detainment of young people in these units found a breach of human rights and called for the right community support to be made available.
The government has promised to ensure every person detained in these units will have their care reviewed, including independent reviews for those in long-term segregation.
They’ve also pledged £62m to help support community care. But progress is slow.
In June, Sky News spoke to the mother of 31-year-old Ryan.
He has autism and has been detained in mental health wards for the last 14 years – the last three-and-a-half years of which he has spent segregated from other patients.
Ryan had an independent review of his care earlier this year, which flagged urgent concerns including whether his stay in hospital was appropriate.
Despite this, he still remains detained.
However, since Sky News highlighted Ryan’s story, the prospect of him moving out of hospital is now looking more likely.
Ryan’s mother, Sharon Clarke, said: “Ryan’s been assured of a community placement.
“A provider must be found who can manage Ryan’s autism and complex needs and we are still looking and hoping one will come forward.”
It understood that the review into Clive’s care will be completed within the next month.
NHS Midlands, who are handling the review, told Sky News: “A LeDeR review is underway into Clive’s death so that any lessons can be learned.”