Autistic teens face ‘barbaric’ treatment, parents tell MPs

Teenage girl lying on bed

image copyrightGetty Images

The mother of a teenager with autism has told MPs that her daughter’s treatment in the care of the NHS was “barbaric and inhumane”.

Benji O’Reilly, who herself works for the NHS, described a “prison-like environment” endured by her daughter.

MPs on the Health and Social Care Committee also heard from Dr Sarah Ryan whose son Connor Sparrowhawk died in a bath in a learning disability unit.

Care minister Helen Whately said she backed better support in the community.

Ms O’Reilly, a former nurse who now works in healthcare planning, wept as she told MPs how her daughter had waited three years for community support.

In her last admission, in October 2020, the girl was forced to wait 30 hours in an emergency department before being transferred to an infant ward.

“Unsurprisingly, she had a huge meltdown and started displaying some, what is seen as, challenging behaviour”.

The teenager has been an inpatient for the past seven months, in a hospital “miles away from home”, without access to her phone and cut off from friends, home, community, school and hobbies, Ms O’Reilly told MPs.

“She has been treated like a criminal at times. She has often asked why she’s being punished.”

Ms O’Reilly described how her daughter was “physically pulled away from me and restrained in front of my eyes”, having been left “screaming and crying for her mum” when the hospital cancelled a planned visit at the last minute.

The teenager is approaching her GCSE examinations, but her mum says that “education has gone out of the window”.

She said the family does not feel listened to and it “feels like our daughter has just been swallowed up by the system”.

Ms O’Reilly said restraint needed to be banned: “Our daughter’s been forcibly stripped and sedated via injection.”

Dr Ryan said the only treatment her 18-year-old son was offered during the 107 days he spent at the specialist unit where he died, was a change in medication which increased his seizures.

“We are generating traumatic experiences for people and then puzzling about why we cannot release people back into the community,” she said.

“There is absolutely no reason why anybody should be restrained or secluded in the 21st century for health-related reasons.”

Committee chairman Jeremy Hunt suggested the UK needed a “radical change” in its care of people with learning disabilities and autism.

Care Minister Helen Whately, who also appeared before the committee, said she shared the horror of the image of the teenager being held down and agreed the system should change.

She added: “Everyone is calling out, myself included, for there to be more effective support in the community.

“We need actually greater clarity on what does actually work in the community, what is the right model, so we can then say to every area across the country: ‘Make sure you have this in place.'”