The families of two people who died while waiting for appropriate treatment for a learning disability or autism say failings in the care system contributed to their deaths.
Amanda Briley and Clive Treacey were among 40 people who died between 2015 and 2018 while admitted to hospital under the Transforming Care programme, an NHS initiative for people with a learning disability or autism.
Sky News revealed the number of fatalities in October last year, prompting the government to promise to investigate the circumstances of every death.
NHS England says the review is still ongoing, but Labour’s shadow care minister Barbara Keeley described the current system as “a national scandal”.
Under Transforming Care people are supposed to be moved out of institutions into long-term community care after no more than 18 months.
More than 2,300 people with a learning disability or autism are currently in mental health wards or in-patient units, with the average stay more than five years.
The government has missed its own target to move half of them into community care by the end of this year, and the target has now been pushed back to 2024.
Amanda Briley, who had autism, was just 20 when she took her own life on the Bradgate Mental Health Unit in Leicestershire in the early hours of Boxing Day 2016.
Her parents Michael and Jackie described her as an “amazing” girl and an “unforgettable character” who was vulnerable because of Asperger’s Syndrome, diagnosed when she was 15.
She had just returned from a home visit to her parents on Christmas Day, and should have been under one-to-one observation.
Appropriate observation was not in place however and while she was unsupervised she was able to make an attempt on her own life. She died two days later.
Amanda had been waiting for a transfer to a specialist autism unit for seven months, and her family had been told a place would be available in January 2017.
At her inquest, which recorded a narrative verdict, the jury identified multiple failings in her care and was highly critical of delays in transferring Amanda to the Transforming Care programme.
The coroner found there were no in-patient places for those with autism anywhere in Leicestershire.
“I think we all knew it was never the right place for her to go but there was nowhere else, she was in crisis and she needed somewhere to keep her safe,” said Jackie.
“We were being told there were places being looked at. It was about finding the right place and getting the funding and it was a waiting game.”
Michael said they were speaking now because they do not want other families to suffer in the same way.
“We need people to be aware of autism. In a medical environment understanding how to care for people is vitally important otherwise you are just going to make them even more stressed.
“And we need to get resources together so that if someone has a need and needs to go to a specialist place it is available on a central register because time is of the essence.”
Clive Treacey was 47 when he died following an epileptic seizure at a privately-run autism unit, Cedar Vale in Nottingham.
He had a learning disability and severe epilepsy but was not autistic, and had spent much of his life in hospitals or care homes.
His inquest heard that a machine used to help him breathe at night was not working at the time of his death and the carers on duty the night he died had only basic first aid training.
His family believe there were significant failures in his long-term care, including concerns over whether he received the correct medication.
“Our primary concern was their blase attitude around his medication, their lack of knowledge around his epilepsy. They couldn’t offer me any reassurances on any direct questions I offered in relation to any topics relating to Clive’s care plan or epilepsy,” his sister Elaine Clarke said.
His brother Phillip Treacey said: “I would like the system to change so other families don’t go through what we went through.
“What I would like to see is justice is given for Clive and that we find the truth so that we can conclude. That people say ‘we made errors but we’ve learnt from it, and it won’t happen again and there won’t be another Clive Treacey case’.”
Mrs Keeley, who raised an urgent question in the House of Commons following Sky News’ initial report last October, said families deserved answers.
“The situation with Assessment and Treatment Units you highlighted is a national scandal, and when I raised this issue in parliament we were told there was nothing untoward about the deaths. I think your research and continued reporting in this area shows that there is.”
In a statement, Danshell, owner of Cedar Vale, said: “Everyone at Cedar Vale was deeply saddened by Clive’s death in January 2017 and we continue to extend our sincere sympathies to his family. As part of our duty of care and commitment to always protecting the confidentiality of the people we support, we are not able to comment specifically on any individual person. The well-being of the people we support is always our absolute priority.”
Leicestershire Partnerships NHS Trust, which managed Amanda Briley’s care, said: “Everyone involved in Amanda’s care was deeply affected by her death and we are sorry that the care we gave her fell short both of the family’s expectations and of our own. We remain determined to make continued improvements in practice to ensure this does not happen again.
“In addition to making a number of changes as a result of our own internal investigation into the circumstances of Amanda’s tragic death, we took the coroner’s concerns very seriously and have made further improvements.”
NHS England said its review of the 40 deaths was ongoing, and it is understood seven cases remain to be fully examined.
A spokesperson said: “NHS England is currently reviewing a number of cases, and where concerns are raised will support local areas to investigate these further, as is standard procedure.
“And over the next few months we will be taking further steps to make sure every local area reviews all deaths of people with a learning disability, autism or both that occur in specialist inpatient settings in a timely way, so that families can be assured and staff can use any learnings to continue to improve care.”