Mother provides distressing evidence of how ‘barbaric and inhumane’ NHS treated autistic daughter

Meanwhile, the mother of Connor Sparrowhawk, who died in a bath in a specialist learning disability unit, said that there was “no reason” people should be restrained or secluded for health-related reasons.

Ms O’Reilly, a former nurse who now works in healthcare planning, said that restraint should be banned and would be seen as “criminal” in the outside world.

She said that the current system is “broken, barbaric and inhumane” as she gave evidence to the Health and Social Care Select Committee’s hearing into the treatment of autistic people and individuals with learning disabilities.

Ms O’Reilly’s daughter hit crisis point in 2018 after waiting for three years for community support.

In her daughter’s last admission, in October, she was forced to wait for 30 hours in an emergency department before being transferred to an infant ward where “she was kept in a tiny box-sized bland side room for four weeks with no fresh air, no exercise, no stimulation, no activities, not able to see friends, family, pets, and unsurprisingly, she had a huge meltdown and started displaying some, what is seen as challenging behaviour,” MPs heard.

From there she was transferred “miles away from home” and is now in a hospital in Wales without access to her phone, “cut off” from her friends, home, community, school, hobbies and pets.

He daughter has been an inpatient for seven months, with no current estimated date for discharge, she added.

Ms O’Reilly said: “She has been treated like a criminal at times, she has often asked why she’s being punished.”

MPs were told that some of the people caring for the teenager seemed to “totally lack compassion and care”.

She said: “There’s no real understanding of autism and how it manifests in the circumstances of somebody within the hospital, and then (they) are punished for displaying their distress in a way that’s seen as inappropriate.”

She described her experience as “horrendous”, adding: “Every day we live in fear and worry about what’s going to happen next and ‘will our daughter ever come home?’.”

Ms O’Reilly sobbed as she described one experience when she and her daughter were on either side of a locked door after their planned visit had been postponed.

“She was aged 14. And she was in an intensive care unit, desperately homesick, very distressed,” Ms O’Reilly said.

“And she’d been quite distressed that morning so the staff decided it wasn’t appropriate for me to visit – she couldn’t understand that was a change to plan – she was expecting to be able to see me, she was looking forward to it and she was deeply, deeply distressed (that she couldn’t).

“I will never forget (seeing her) on one side of the door, screaming and crying for her mum and me on the other crying, begging to be able to see my daughter and comfort her, and she was just physically pulled away and restrained in front of my eyes.”

She added: “It feels like our lives have been totally torn apart.

“Our family’s been destroyed, it feels like we will never get our beautiful daughter back.”

She said that the family doesn’t feel listened to and it “feels like our daughter has just been swallowed up by the system”.

Ms O’Reilly added: “She has a right to a quality life just like everybody else, but it doesn’t feel like she has any human rights, she’s not treated with any dignity or privacy, she’s in a prison-like environment.”

And even though the girl is approaching her GCSE examinations “education has gone out of the window”.

She added: “I feel so desperately let down by the NHS, because when we needed it it hasn’t been there for us.”

Ms O’Reilly added: “The current system is broken, it’s inadequate.

“And it’s barbaric and inhumane, it’s antiquated and we need a completely new model of care.

“And I think without appropriate changes being made, and appropriate resources within the community, things are only going to get worse.”

She added: “Restraint needs to be banned, it is absolutely brutal, and in the outside world, it would be seen as criminal.

“You know if five men pinned a scared 14-year-old child face first to the ground and injured them in the process, that would be seen as a criminal offence in the outside world, but that happens in an inpatient unit.

“Our daughter’s been forcibly stripped and sedated via injection, you know that is barbaric to do that to a child in distress.”

Dr Sara Ryan told the committee that her son Connor Sparrowhawk died in a bath in a specialist learning disability unit while two members of staff were in a nearby office ordering groceries.

She said the only treatment he received in 107 days at the unit was a change in medication, which increased his seizure activity.

Dr Ryan, a senior researcher on autism at the University of Oxford, said: “We are generating traumatic experiences for people and then puzzling about why we cannot release people back into the community.”

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

Asked about restraint, Care Minister Helen Whately told the committee she shares the “horror” of the image of a teenager being held down.

She said: “Absolutely steps (are) being taken and I think we should continue to reduce and stop the level of restraint and also seclusion that we hear about and know has been happening.

“This is a system that needs to change and there is a set of steps in progress… there is not one simple answer but there is a whole lot of work going on to make it happen.”

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

She added: “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’.”

Meanwhile Ms O’Reilly told the committee that she was “petrified” that her giving evidence would have a negative impact on her daughter.

But Claire Murdoch, national mental health director for the NHS in England, told MPs: “We know that our ability to improve services relies heavily on what service users themselves, and people who love them, say.

“And its absolute vital that not only the freedom to speak up in that way, but the encouragement to speak up in that way, sits there.

“So you have my personal reassurance that I will go back to the area and make that expectation clear – I’m sure it is already clear but I will reiterate it.

“It hurts the heart when you hear parents talking about parents being scared to speak out about those they love that should never be the case.”

She told the committee that millions of pounds were being ploughed into improving community mental health care including 24/7 crisis care alternatives, intensive community support as well as other schemes to help improve the service.

Ms Murdoch added: “We have made some good headway across the country in the alternatives to support young people with learning disabilities, but we have to double down on those with autism, we clearly haven’t got that model right.”

She said that this year £45 million would be invested in community alternatives and a “huge chunk” will be targeted towards 14 to 25-year-olds with autism and supporting them in the community.