“The care Stephen received was inhumane. It has to stop.”
Stephen Andrade-Martinez, who has learning disabilities and autism, is 23. He has already spent almost six years living in inpatient wards – a quarter of his life. One of the placements was 80 miles away from his family.
“Stephen finally came home in December, but the long-term impact of being kept in a hospital unnecessarily is apparent everyday,” his mum, Leo, said. “He is self-harming, hitting and biting himself.
“He says he wants to sleep on the floor as that is what he did in the assessment treatment unit,” she continued, adding that he is suffering from “huge panic attacks”.
Leo believes the sedation her son received as an inpatient has led to the loss of the limited speech he once had. “He is suffering from so much trauma – it’s just heartbreaking.”
Stephen’s story is not unique – and campaigners fear thousands more people could be forced to spend years of their life in hospital unnecessarily after the NHS shelved key targets to cut the number of people with learning disabilities in inpatient units.
In 2015, in the wake of the public reaction to the Winterbourne View scandal – which saw patients with learning disabilities subjected to physical and psychological abuse at a private hospital near Bristol – the NHS vowed to make improvements to community care, that would mean it would be able to cut between 35% and 50% of inpatient beds.
“In three years we would expect to need hospital care for only 1,300 – 1,700 people where we now cater for 2,600,” health service documents predicted.
Three years later, in November 2018, 2,325 people with learning difficulties and/or autism were still inpatients.
Last week, NHS England pushed back its own deadline by another five years, vowing to cut the number of people with learning disabilities and autism in hospital to less than half the levels seen in 2015 “on a like-for-like basis” by 2023/24.
For the families and charities who expected this goal to be achieved by March 2019, it’s too little, too late.
“It’s extraordinary they are taking another five years to deliver changes that were first talked about in 2011 following the Winterbourne View scandal,” says Dan Scorer, head of policy at learning disability charity Mencap.
“Here we go again with another target being missed and another deadline being set way into the future while more than 2,000 people are in these places at risk of restraint, overmedication and seclusion. It’s just not acceptable.”
It’s an opinion echoed by Jeremy, the father of 17-year-old Bethany. Suffering from autism and extreme anxiety, the teenager has been locked in a seclusion cell for two years. According to her family, she is only able to communicate with visitors through a hatch.
“I’m disappointed that the announcement will mean that children and adults with autism and learning difficulties will continue to be locked in these horrific places for the foreseeable future,” Jeremy said.
“My daughter will hopefully be out of the ATU [Assessment and Treatment Unit] this year, but I feel that the NHS plan lets down every person with a loved one in an inpatient setting.”
In November – after hearing about the cases of Bethany and others – health secretary Matt Hancock launched a review into the long-term treatment of people with learning disabilities and autism.
To shelve the learning disability inpatient target before hearing the outcome of the probe is “frankly disgusting,” Jeremy added.
“It’s a failure to ignore the fact that these places are unsuitable for those with autism and learning difficulties,” he said. “It’s a failure to spend more money keeping people in the settings that would be better spent providing cheaper and more suitable community placements.”
But for Vivien Cooper, founder of the Challenging Behaviour Foundation, it is not just the number of people in inpatient units which is the issue. The amount of time patients spend in hospital is another major concern.
Despite aims published by the health service to reduce hospital stays for those who require specialist in-patient support to an average of 85 days in some areas, data shows that at the end of November 2018, 58% of patients – 1,345 people – had been in hospital for more than two years.
These are places which are not designed for people to stay for a long time – they are not homesDan Scorer, Mencap
“It takes a long time to get people out,” Cooper said. “In that inpatient unit they are taken away from everything that is familiar to them – familiar routines and familiar people. They are therefore very distressed and their distress manifests itself in their behaviour.”
She continued: “The inpatient response to this behaviour is usually restrictive – it will be use of physical restraint, it will be the use of medication to subdue people or the use of restrictive practices like seclusion or segregation.”
Faced with this kind of treatment, many patients’ behaviour becomes even worse, Cooper added. It’s a cycle of escalation that can see patients trapped in hospital for years.
“These are places which are not designed for people to stay for a long time – they are not homes,” Scorer said. “People are supposed to be going there for short periods of assessment and treatment and coming back to the community within a matter of a few months.
“These environments can be very damaging and ultimately the reason people are going in is because the right support is not available for them in the community.”
But – according to the NHS long-term plan – the number of people with learning disabilities and autism in inpatient care has dropped by almost a fifth since 2015.*
A spokesperson for NHS England said the health service had “rightly backed the biggest single shift in care for people with a learning disability or autism in history”, supporting an extra 635 people who had been in hospital for more than five years to live in the community “as independently as possible”.
“The NHS long term plan continues to build on significant progress investing in earlier intervention and ramping up specialist community services, including seven day a week crisis care, all of which will reduce the need for inpatient care,” they added.
*NHS estimates based on data taken from March 2015 and November 2018.