Three young people let down by learning disability services are 'tip of very large iceberg'

The moving stories of how three young people and their families were let down by learning disability services, that should have been caring for them, are the ‘tip of a very large iceberg’, according to one of the parents.

The stories are part of a new report from the Care Quality Commission (CQC) and the Challenging Behaviour Foundation (CBF).

The ‘3 Lives’ report looks at the experiences of Connor, Kayleigh and Lisa in services for people with learning disabilities.

Eighteen-year-old Connor tragically died at an assessment and treatment centre after he was found unconscious after a seizure whilst unsupervised in a bath; Kayleigh spent 10 years in assessment and treatment centres, including Winterbourne View and Lisa was kept for the majority of the time in a locked area at an assessment and treatment centre with staff interacting with her through a small letterbox style hatch.

Professor Louis Appleby, CQC board member, who chaired an event, which heard stories from the parents of two of the individuals described in the report, said: “The care of people with learning disabilities should be a touchstone for the values of the NHS as a whole and how the care system responds to the stories in the Three Lives report should be seen as a key sign of its progress on safety.

“Everyone involved in services for people with learning disabilities – commissioners, providers and regulators – need to make sure that they put the needs of individuals first and wherever possible provide care close to home.”

The strong message from the stories is that the care for Connor, Kayleigh and Lisa was not based on their individual needs and did not put them and their families at the heart of their care.

Vivien Cooper, chief executive of Challenging Behaviour Foundation, believes “there is no excuse for getting it wrong” as “we know how to support people well and we know the importance of valuing families as key partners”.

Wendy Fiander, mum of Kayleigh, who spent 10 years in treatment and assessment centres after hitting a member of staff while in a residential placement, called the sad stories of these three young people “just the tip of a very large iceberg”.

She added: “We need to ensure that our most vulnerable and voiceless people are cared for as individuals with dignity and respect.”

“In order to achieve this we must make families integral to any plans for their future.

“It is abhorrent that such appalling situations continue to occur in the aftermath of Winterbourne View and together we must pledge to stop it.”

Sara Ryan, mum of Connor, who died after having an epileptic seizure and losing unconsciousness during an unsupervised bath at an assessment and treatment centre, said: “Three lives, and three stories that are beyond shameful. It’s time to stop talking and act to change the paucity of aspiration and provision for learning disabled people.”

The report concluded that the quality of provision of care for people with learning disabilities and their families is too variable across England.

Services should be community based and person centred, close to family and local contacts and families should not be excluded from decisions about care.

The report outlines actions that CQC and others have committed to take in order help people in the same situation. Progress against these actions will be reviewed in the Autumn.

CQC’s inspection programme of services for people with learning disabilities and their families will focus very much on how people are served.

This will include using experts by experience in the inspections. Inspections will place a much greater emphasis upon the lived experience of individuals and the actions/outcomes being achieved to support their discharge.

You can read the report at www.cqc.org.uk/sites/default/files/2014%2006%2017%20Three%20Lives%20report%20FINAL.pdf