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Too many people with learning disabilities or autism are still being “institutionalised” in hospital when the support they need should be delivered in the community, the Care Quality Commission has warned.
The regulator found the ward environment, combined with a lack of appropriately trained staff, was leading to a situation where patients became distressed and subsequently subjected to restraint or being segregated on their own.
“Increased oversight and accountability are key to ensuring people are properly safeguarded”
In October 2018, the government commissioned the CQC to carry out a review of the care people with complex needs were receiving in England, in response to rising concerns about the use of restrictive practices.
In a report published today, titled Out of Sight – who cares?, the CQC said it found that “time again people were not getting the care they need, when they need it”.
Despite national guidance stating that hospital stays for those with a learning disability or autism should only happen as a short-term, last-resort option, inspectors saw people who were admitted for “months or years at a time”.
In addition, it was found that the ward environments were often not appropriate for people with complex needs and that this created a “pattern of distress, restraint and seclusion, which often cannot be broken”.
Workforce was also an issue on the wards, with staff found to be “under pressure because of a high staff turnover, lack of appropriate training and high use of agency staff”.
The length of time that patients spent in long-term segregation ranged from three days to 13 years, with a lack of suitable care in the community preventing discharge for 60% of people the CQC saw during its review.
In some cases, CQC inspectors saw examples of people’s human rights being at risk, requiring them to take regulatory action.
Examples listed in the report included people being secluded without access to fresh air or toilet facilities, and being denied contact with friends or family due to shortages of staff.
Others were confined to dirty rooms that were “completely devoid of anything but a bed or mattress on the floor”, while in one instance a patient was left sitting naked “with no attempts to support them to overcome sensory issues”.
Conversely, they found restraint was used less often overall in the community, with most services “promoting personalisation and a positive quality of life”, although the quality of care depended on staff numbers and skills.
The need for care for people with learning disabilities, autism and mental health conditions to be moved closer to their own homes and communities has been stressed for years by campaigners and highlighted in various reports.
Commitments have previously been made to closing hospital beds and building more capacity in the community and the CQC recognised that progress had been made, naming specifically the Transforming Care programme.
However, the regulator said improvements were not happening fast enough and is now calling for a “fundamental change in the way care is planned, funded, delivered and monitored” for these groups of people.
The regulator concluded that having in place community care packages that were designed around the individual would “prevent admission to hospital and end the cycle of institutionalisation”.
In its recommendations, it said all community teams needed expertise in caring for people with learning disabilities, autism and mental health conditions with the aim of delivering “trauma-informed care” and preventing crises.
Where people did experience a crisis, appropriate support should be available close to home to prevent admission to hospital, it added.
The regulator also recommended action to improve transparency and accountability around the use of restrictive practices, and for Care Education and Treatment Reviews to be made statutory.
To help oversee the changes required, the CQC called for a named national specialist commissioner for complex care.
It also wanted a minister to be selected to take responsibility for delivering the recommendations in the report, working across health, education, social care, justice and local government to “pool budgets locally”.
“I am determined that this level of care should no longer have any place in our health system”
Dr Kevin Cleary, CQC deputy chief inspector of hospitals and lead for mental health, said: “It is clear there needs to be fundamental change in the way care is planned, funded, delivered and monitored for people with a learning disability, autistic people and people with mental health conditions.
“Increased oversight and accountability are key to ensuring people are properly safeguarded,” said Dr Cleary.
“This must be underpinned by a firm foundation of human rights, to deliver a culture where restraint, seclusion and segregation are no longer accepted and are only used in extreme cases.”
Richard Kramer, chief executive of national disability charity, Sense, said it had been pointed out “time and time again” that hospitals were not the right place for people with learning disabilities and these settings needed to close.
“Plans to do this have been too slow with many people with learning disabilities or autism continuing to suffer from being provided with inhumane care,” he said.
He added: “We now need to see action and investment into community services, which are vital in supporting people with complex disabilities and preventing them from reaching crisis point in the first place.”
Care minister Helen Whately described the quality of care uncovered by the report as “deeply concerning”.
She said the government was already taking action, including through investment in community services and implementing independent case reviews of people in long-term segregation.
“I am determined that this level of care should no longer have any place in our health system, and will carefully consider the recommendations in this report,” added Ms Whately.
Nursing Times has also contacted NHS England for a response.