Learning Disability Today
Supporting professionals working in learning disability and autism services

Inappropriate care settings: the true impact on a person

Autistic man Nicholas Thornton lost the ability to walk and speak after spending over a decade detained in unsuitable care settings. Here, Darren Devine hears from his mother Emma about the reforms needed for Thornton and the 2,000 other autistic and learning disabled people being held in hospitals.

When Nicholas Thornton first went into hospital he could walk and talk. But his mother Emma Thornton  says more than 10 years spent in inappropriate care settings have taken a damaging toll on her son’s life.

Far from providing therapy to 28-year-old Thornton, the multiple care placements that he has moved between have made his challenges with autism and learning difficulties much worse.

A decade of trauma means he types on a keyboard to communicate instead of speaking and years spent in bed have led to wasted muscles and he is now a wheelchair user.

Emma said: “He wants to live in the community, obviously with the support. And he wants a life. He wants to go to college, but for the last 10 years or so he’s not been able to because of where they’ve been placing him.”

Caption: Nicholas Thornton who has spent 10 years in unsuitable care settings and wants to live in the community.
Nicholas Thornton

Since he was first sectioned at the age of 16, Thornton has been moved from one care setting to another, often hundreds of miles from the family’s Essex home. He is now at Rochford Hospital, a mental health unit run by Essex Partnership University NHS Trust (EPUT). The unit was recently the subject of a Channel 4 Dispatches documentary that showed patients being restrained and mistreated. And a public inquiry is to probe the deaths of patients at the hospital.

Emma believes a greater level of understanding is needed among NHS staff that autism is a neurodevelopmental condition and not a mental illness. Only then will medics stop seeing psychiatric hospitals as an almost natural care setting for people on the spectrum.

She maintains too many NHS staff simply say, “We’ll just shove them in a hospital because it’s accommodation for them.”

Noisy and brightly care settings can trigger meltdowns

For autistic and learning disabled people with sensory issues, noisy and brightly lit hospitals can trigger meltdowns. These can spiral and lead to mental health problems that end up being used to justify hospital stays akin to lengthy prison sentences.

Emma, 54, added: “With Nicholas because he was having meltdowns in the hospital environment they were trying to say that he’d got a personality disorder and not autism. And once someone with autism is given an additional mental health diagnosis, medics are under no pressure to find community accommodation.”

Thornton’s life in care has seen him placed in a dementia home, accommodated in units for substance abusers and with prisoners on mental health wards.

An investigation by Channel 4 News and The Independent detailed how he has suffered physical and verbal abuse during his time in care.

The investigation revealed how a male nurse tried to suffocate him in one hospital unit. The police attempted to take the matter to court before the Crown Prosecution Service dropped it. In another unit he was said to have been stripped in front of a window that onlookers could peer through.

The most recent independent safeguarding report on Thornton reportedly raises concerns about how he has not been fed properly and is kept in a secluded and locked room with no windows.

Soiled linen was reportedly left in the corner of his bedroom with flies on the ceilings and walls and his mother said the stench from a dirty toilet in his bathroom was “unbearable”.

Support workers are also unable to see to Thornton’s personal care because he will not allow certain staff to help him as his relationship with them is said to have broken down.

The safeguarding report also details how Thornton fell from his bed because there were no railings and suggests he should be urgently moved to a care setting where staff are autism trained.

A care company has offered a community placement for Thornton costing up to £6,000 per week, but Essex County Council has not indicated whether it is considering this option.

Speaking on Channel 4 News in November Thornton, who wears headphones and glasses to avoid getting overstimulated, told how being in Rochford Hospital is “like torture”.

He said the hospital’s alarms, the number of people and the fluorescent lights all overstimulate him and he had endured ten years of it and mostly away from family and friends. “I’ve not seen a friend for seven years,” he added.

He said he could not understand “why this happens to so many autistic people” and “something needs to be done”.

Why has Transforming Care not worked?

Successive governments have prioritised shifting the focus of care for people with autism and learning disabilities from hospitals to their own communities. The first round of the policy, known as “transforming care”, envisaged moving everyone inappropriately placed in institutions into the community by June 2014.

When this failed the government gave itself another five years to hit the less ambitious target of closing 35% to 50% of beds. But this also fell short of its target and the then prime minister Theresa May unveiled the NHS 10-year plan with a new ambition of halving on 2015 levels the numbers in hospitals by 2023/24.

In practice, this will mean cutting numbers currently standing at 2,035 back to about 1,440. However, at the current rate of progress it will take around another six years for transforming care to reach this goal.

Last year a report by Baroness Sheila Hollins highlighted how around 115 people with autism and learning disabilities are being held in solitary confinement in hospitals. Some have reportedly been held for up to 20 years.

Hollins suggested there has been only limited progress on reducing the numbers as when one person leaves another replaces them in segregation.

A spokesperson for EPUT said they “ensure that all patients are treated with care and compassion”.

“Our staff treat many vulnerable people and their focus is on supporting them to recovery by delivering high standards of care in a therapeutic environment,” the spokesperson added.

A Department of Health and Social Care spokesperson said they have “made progress in reducing the number of people with a learning disability and autistic people” in hospitals. When parliamentary time allows, the government plans to introduce a mental health bill to reform legislation and an additional £2.3bn a year will go into services in England by March 2024.

A spokesperson for Essex County Council said they are “carefully considering” the concerns raised about Thornton’s care and will work with the NHS and the family “to take forward appropriate actions”.

“The wellbeing of every Essex resident remains our utmost priority and we are fully committed to safeguarding vulnerable adults across the county,” the spokesperson added.

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