'It was like Silence of the Lambs': Father's battle to rescue daughter fed through hatch

For more than two years autistic teenager Bethany was kept in seclusion, locked up in a mental health hospital miles from home through no fault of her own.

Bethany and Jeremy
Bethany and Jeremy

She was alone, and so was her desperate father. One man against the might of the NHS and local government machine and all the legal power at its disposal.

But he would not be beaten. As he watched his daughter "fall apart" in unedifying conditions and witnessed her being fed through a metal hatch, the same hatch he was forced to kneel at in order to speak to her, he decided he could take no more.

Bethany, now 18 and from Walsall, has PDA (pathological demand avoidance).

She was placed at St Andrew's Hospital in Northampton in December 2016, a mental health unit, even though she does not suffer with a mental illness.

Bethany was held at St Andrew's Hospital in Northampton

Walsall Council, Walsall Clinical Commissioning Group (CCG), NHS England and St Andrew's all admitted this week they had failed Bethany and apologised following her father Jeremy's lonely battle for justice.

NHS England and St Andrew's have made changes around seclusion of patients, while Bethany has been paid damages believed to be substantial.

Jeremy says 95 per cent of the time his daughter is a teenage girl like any other but that her condition means, at times, she poses a risk to those around her.

When he went to visit her at St Andrew's for the first time the 51-year-old was distressed by what he saw, and was sure Bethany was becoming distressed, as well as scared and anxious.

He knew the conditions Bethany was being kept in were counter-productive for someone like her, where anxiety and a need to be in control of her surroundings is a key feature.

For large periods she was locked away in seclusion in a 12ft 'cell', apparently without any real strategy for managing her. Access to the outdoors, where Bethany feels much calmer, was restricted. She was effectively a prisoner.

Bethany aged 12

"We walked down a series of long corridors. It was a scene reminiscent of Silence of the Lambs when Clarice Starling visits Hannibal Lecter behind the glass door," Jeremy said of his first visit.

"It was horrific, the worst experience of my life and I was not prepared for it. It is the worst thing as a parent I have ever had to go through.

"I had to kneel down at the hatch to talk to her. It was utterly soul-destroying. When all we both wanted was the door open and to hug all we could do was hold hands."

Jeremy, who has asked only to be identified by his first name, was determined to raise his daughter's plight, which he insisted was doing her more harm than good, and ensure she was moved to a setting suitable for her needs and one which would eventually help her to come home.

But he was met with resistance all the way. When he blew the whistle on the conditions Bethany was being kept in Walsall Council got wind of it and tried to slap a gagging order on him to prevent him from speaking out.

Some might have stopped there and decided there was no way one man could defeat the 'system' but the father went to the High Court to challenge the order. It was withdrawn when the judge made it clear he would not support it, allowing him to speak out and attract the attention of the media.

Walsall Council has apologised for not moving Bethany sooner

He then went further and launched legal proceedings against Walsall Council, the CCG, NHS England and St Andrew's Healthcare with the crucial backing of the Equality and Human Rights Commission, who met the lorry driver's legal costs.

The tipping point, when Jeremy knew he needed to do something, came when he discovered Bethany had got access to a pen and pushed it into her arm. It remained there for eight weeks.

"If this was a dog in a cage with a biro stuck in it there would be a national outrage," the exasperated father said.

Jeremy says he is proud of what he has achieved following the recognition he had been longing for, that the hospital, and her seclusion, was not appropriate for her needs.

Walsall Council and the CCG had not done enough to ensure she was moved sooner. All apologised and damages, believed to be substantial, were paid to Bethany as the case was settled.

Even now the teenager is not in an appropriate setting. She has left St Andrew's in February but is in another unit in Wales, which Jeremy says is even worse. A more suitable location has been found but it could be nine agonising months before she is moved there.

The inspirational father says the system is broken and that medical bosses have no answers for the best way to care for children and young adults like Bethany.

Jeremy at the High Court

He said: "It was all about risk. It is because they don't have a strategy to do it differently.

"On her 18th birthday I took her for a meal, she went in a limo. That's not what you would do with a dangerous child. She had the right people around her.

"She went for months at a time being secluded. The Mental Health Act itself states an inpatient hospital setting is unlikely to help with autism.

"The system needs to change, there needs to be an overhaul of the mental health system. The CQC (Care Quality Commission) said this week it's not fit for purpose and the Government needs to step in and make changes."

Bethany had autism from an early age and was diagnosed with PDA at around 10 years old. She has been in permanent care settings since she was 11 but Jeremy hopes a time will come soon where she is living independently.

Jeremy said: "Bethany is the funniest person, she is like any other 18-year-old. Bethany knows what is happening to her and doesn't understand why it is happening."

Asked if there was ever a point where he felt his battle with the NHS and Walsall Council was an impossible mountain to climb, he answered: "Never. Bethany puts up with unbelievable treatment every day of her life. If she can cope with that I can cope with a bit of stress and hard work."

Top Stories

More from the Express & Star

UK & International News