Every day, Sarah begs her father to take her away from the mental health ward where she has been locked away for two and a half years.
She has spent the entirety of her adult life in and out of hospitals that are ill-equipped to meet her needs, because of one reason – she cannot receive the support for her autism and learning disability in the community.
Her father, Adrian, told The Independent, “She is in despair constantly. She says it has taken her life away from her. She is unable to build and maintain friendships in her home town, she is unable to even begin to have a life that is coherent and has any sense of progress and independence. She is hopeless… It is devastating.”
Sarah, 29, whose name has been changed for legal reasons, is one of 2,025 people with learning disabilities and autism being cared for in mental health hospitals because successive governments, health and care services have failed to provide the care they need in more appropriate settings.
Since the scandal of Winterbourne View, more than a decade ago, which exposed the abuse of vulnerable people in hospitals, every national target to reduce the number of people inappropriately detained has been missed.
Last year, Nicholas Thornton, who had been locked away for 10 years since turning 18, revealed how his life had been transformed after reporting by The Independent and Channel 4 News led NHS and council commissioners to finally organise a care package in the community for him.
On Thursday, new data analysis by learning disability charity Mencap, shared with The Independent, reveals targets have been missed again this year and are unlikely to be met in the next five years.
Now, the Labour government has been accused of “taking its foot off the pedal” and warned its Mental Health Act reform, aimed at preventing people being detained in hospitals long-term, will not have an impact without adequate community care provision.
Leading charities, including Mencap and the National Autistic Society, have written a letter, seen by The Independent, to health minister Stephen Kinnock, warning that progress has “gone backwards”.
The latest figures, reveal that targets to reduce the number of people with learning disabilities and autism in hospitals by half will now not be hit until 2033 – over eight years too late, according to Mencap.
Crucially, figures show 43 per cent of NHS areas now have a higher rate of people being detained compared to the earliest available data – up from 31 per cent last year.
Since 2015, the number of people with autism without a learning disability locked up in units has increased by 136 per cent.
The charity also warned that other targets, such as one to reduce the number by 10 per cent in the year by 2025-26, are not strong enough.
Given up hope
To live independently, Sarah, from Cumbria – one of the worst areas for failing to meet the targets – would need daily carers in a shared supported living environment. But her local council has not provided funding in her case, so she has spent a decade in and out of hospitals instead.
This has “taken away any ability to function normally and be independent,” her father, Adrian, told The Independent.
On one occasion, she was locked in a windowless room on her own for five days without any human contact, he revealed.
Due to the distressing hospital environment, Sarah’s health has deteriorated.
“She has developed things like self-harm, so she has scars on her, her teeth are not great, she is not very well at all… She gives up hope, she is anxious.”
Graph Jackie O’Sullivan, Executive Director of Strategy of learning disability charity Mencap, said: “It’s of great concern that every national target to transform care for people with a learning disability and or autism to date, has been missed and the situation is now starting to go backwards in many areas. This new data shows there is an unacceptable postcode lottery for those trapped in mental health units and their families desperate for them to come out.”
“Thousands of people are still being locked away, often for years on end, many due to a lack of suitable community support, not because they need inpatient mental health treatment. In these settings, people can be subjected to physical restraint and kept in solitary confinement for months on end, leaving people with lasting trauma.”
She said the government, health bodies and local authorities “must acknowledge that progress is unravelling in many areas and take action to address this”.
Mencap warns that although the reform of the Mental Health Act aims to end the inappropriate detention of people with a learning disability and those with autism, the change in the law that will make a difference will only be activated when sufficient community support is in place. This, they say, is unlikely to be achieved when there is already a huge lack of community support and amid ongoing cuts to services.
Mel Merritt, Head of Policy and Campaigns at the National Autistic Society, said: “The only way to end the human rights scandal of autistic people and people with learning disabilities being locked up in mental health hospitals is to have a proper Government plan.”
“Changes in legislation, going through parliament now, are desperately needed. But without a plan and provisions in place, the Government is consigning people to unnecessary detentions, where the average stay is nearly five years.”
The Department for Health and Social Care was approached for comment.
This story was updated at 13:00 with the latest analysis of missed targets.
