Learning disabilities: “I was hospitalized for 50 years, but I wasn’t sick”

Charles Esler spent more than 50 years living behind the closed doors of a hospital despite not suffering from any serious illness.

Charles, who suffers from a mild learning disability and epilepsy, was first admitted to hospital when he was 10 years old.

He told the BBC he had spent “too many birthdays” in hospital and didn’t like being locked up with no freedom.

His sister Margo says she fought for Charles to be moved to a place where he could be independent and last year, at the age of 62, he was finally given the keys to his own apartment for first time.

“His family struggled for years to find him a suitable place,” says David Fleming, of the charity Richmond Fellowship Scotland.

“Unfortunately, some people get caught in the system.”

A BBC Scotland investigation has found that hundreds of people with learning disabilities are still stuck in hospitals or living hundreds of miles from their families.

This is despite decades of government policy which has clearly established that they must all leave long-term care institutions to return to their own homes.

Two and a half years ago, the Scottish Government promised that “most” people would be moved into their own homes by March 2024.

However, new figures obtained by the BBC show the number of people in hospital has increased.

A request for information from authorities under the Freedom of Information Act revealed that the number of people with learning disabilities in hospital has increased from 173 to 191 since last year.

The overall figures in the new national register, which includes people away from home, increased by 12%, from 1,243 to 1,398.

Charles’ carers say his case shows that everyone can be helped to live in the community.

Ms Fleming said: “He was great during his transition and is now thriving and very independent.

Charles, who grew up in Glasgow, said: “Now I can go out and go places, go to the little pub down the road and have lunch there.”

“I like fish and chips. I feel really good. I’ve never known freedom before.”

He says he likes to sit in his own living room and watch James Bond films. He learned to cook, garden and do his own housework.

His sister Margo McKeever says she fought for years for her brother to have his own place.

“You shouldn’t think it’s a fairy tale,” she says.

“It didn’t happen overnight. Many people were involved and it took almost 14 years to find the right location.

“Everyone should have someone who can make sure you’re not treated like just a number.”

Fraser Malcolm has lived at the hospital for more than three years, although it was agreed he was ready to leave.

The 20-year-old, from North Ayrshire, Scotland, has speech problems and complex needs, but before being hospitalized his parents say he led a full life.

He attended a specialist school, went sailing regularly, went on vacation with his family and helped his father renovate a sailboat.

His parents said his biggest mistake was “asking for help.”

Fraser’s mother, Karen, says her son has taken a turn for the worse since he was hospitalized and the fear of being tied up in hospital “is eroding the person he used to be.”

She adds that she is “totally outraged” that the number of people with learning disabilities has increased since ministers promised to get people home.

“This has been a big blow to our family and to many other families that I am now in contact with,” she said. “We feel undermined.”

Fraser’s family have prepared a room specially designed for him and want him to return home, but they say his condition has deteriorated so much in hospital that he is afraid to leave his room.

Like many families, they had difficulty finding a suitable care package and accepting the transition from hospital.

A spokesperson for North Ayrshire Health and Social Care Authority said it would continue to work with Fraser and his family to secure his release from hospital.

“There are ongoing challenges locally and across Scotland in terms of capacity, availability and range of community care options for people with complex support needs,” he said.

Separate freedom of information requests by BBC Scotland to all health boards across the country revealed more than 120 people with learning difficulties had been in hospital for more than a year.

Among them, 28 have been hospitalized for more than 10 years and four for more than 20 years.

Two years ago, the BBC discovered that people with learning disabilities were being trapped in hospital.

Of the young people who were found, including Fraser Malcolm, all are still trapped, living behind closed hospital doors.

Kyle Gibbon is now 37 and has lived at Carstairs, the public hospital, for 15 years.

Jamie is 26 and still lives at Woodlands View Hospital in Ayrshire and Arran. He has been there since he was 19 and is registered as a delayed release.

Louis Sainsbury is thriving at home in Perthshire after years of hospitalization.

Thousands of people with intellectual disabilities lived in long-term care hospitals before the 1990s, when it was recognized that this was inhumane.

In 2000, the Scottish Government published a report establishing the right of all people with learning disabilities to live in their own homes and communities.

Experts say it is entirely possible for everyone to live in their own home with proper support.

Dr Sam Smith, director of C-Change Scotland, an organization which helps disabled people live at home, said: “We ended long stays in hospitals over 20 years ago because we knew that people could live within the community.

The Scottish government says it has worked with local authorities to create a national register of people with learning disabilities who are in hospitals or hundreds of miles from home, and has provided £20 million (US$25 million) to help these people return home.

Social Affairs Minister Maree Todd told BBC Scotland: “We are absolutely committed to moving this issue forward. But as these reports show, it is difficult to resolve.

“The legal responsibility lies with the local authorities and I am working closely with them to try to improve the situation.