Teenager’s death ‘was institutional disablism’

A disabled teenager who drowned in a bath while in the care of an NHS trust was a victim of “institutional disablism”, say campaigners.

Connor Sparrowhawk, who had probably had an epileptic seizure, was on a unit that had at least four members of staff on duty for just five patients.

But the trust had decided that staff should only check on him every 15 minutes every time he took a bath, even though he had epilepsy.

Connor, who also had learning difficulties and autism, was admitted to the £3,500-a-week NHS short-term assessment and treatment unit in March 2013, but died on 4 July after he was found unconscious in the bath.

His death came two years after undercover filming for the BBC’s Panorama revealed a regime of “appalling and systematically brutal” abuse at another – privately-run – assessment and treatment unit, Winterbourne View, near Bristol.

An independent report into Connor’s death – published this week – found significant failings in his care, and concluded that staff on the unit had failed to carry out a proper risk assessment of his epilepsy.

The report found that Connor would not have died if he had been appropriately supervised, and that there was no documentary evidence in the month before he died that checks had been carried out every 15 minutes while he was in the bath.

The report also says that the unit – run by Southern Health NHS Foundation Trust and located on the Slade House site in Headington, on the edge of Oxford – “lacked effective clinical leadership”.

Three months ago, a highly critical report by the Care Quality Commission failed the unit on all 10 essential standards of quality and safety, and described it as “an impoverished environment with little therapeutic intervention”, while it concluded that the building was “not suitably safe”. It was subsequently closed to new admissions.

The family have pushed for criminal charges of corporate manslaughter or neglect to be brought.

His mother, Dr Sara Ryan, told Disability News Service (DNS): “We strongly felt that there should be corporate manslaughter charges. There were systematic failures across the board, and he should never have died. It was obvious to us that it was preventable.”

She said Connor was subjected to “appalling” levels of restraint – the first time he had ever needed to be restrained was on his first night in the unit – while his family were sidelined from his care.

Ryan said: “It is an astonishing amount of money for there to be no care. How you could commission a service that poor at that cost and not investigate it is baffling.”

Jenny Morris, the disabled researcher who led the work on the last government’s Independent Living Strategy, who has followed the case closely, said Connor had been a victim of institutional disablism.

She said it was the latest example of the “systemic failure to really value the lives, views and experiences of people with learning difficulties” and of the tendency to “devalue the knowledge, experience and role of parents [and other] family members”.

Morris said Connor’s death was “extremely distressing” when there had been so many inquiries which had reached similar conclusions to the latest report, with identical responses from service-providers that they had learned from these scandals and had introduced new policies and procedures.

She said: “The most important thing to learn from looking at [the new report] and the many, many others is that whatever we’ve ‘learnt’ hasn’t been the right lesson.”

She said the real lesson to learn was that policies and services should be “generated” by people with learning difficulties and their relatives.

Morris added: “If we asked not only people with learning difficulties themselves but also those who love them how we as a society should be responding to their needs, maybe assessment and treatment centres wouldn’t even exist.”

Ryan, a sociologist whose work often focuses on disability and inclusion, said on her blog that the struggle for justice for her son had been a “distressing, relentless, time consuming” experience.

She said: “He was a remarkable young man who was failed by those who should have kept him safe.”

She told DNS that the treatment her son received in the unit was “barbaric”.

“For him to go from the heart of a big, happy, warm family with a lot of friends and other family members around into an isolated space in which nobody seemed to care for him was heart-breaking.”

But Ryan said that the huge response on social media to the report and the campaign for justice had been “really heartening” and had helped the family cope with their loss.

In a statement, Katrina Percy, chief executive of Southern Health NHS Foundation Trust, said: “I am deeply sorry that Connor died whilst in our care and that we failed to undertake the necessary actions required to keep him safe.

“We are wholly committed to learning from this tragedy in order to prevent it from happening again and I would like to apologise unreservedly to Connor’s family.”

Thames Valley police has so far been unable to comment on the case.

27 February 2014