The Care Quality Commission has called for action to fix the “broken system” that leads to people with a learning disability or autism being segregated in hospital.
It wants an independent review of every person who is being held in segregation in mental health wards for children and young people and wards for people with a learning disability or autism.
“The 39 people we have visited who are cared for in segregation are in a very vulnerable situation”
These reviews should examine the quality of care, the safeguards to protect the person and the plans for discharge, said the regulator.
In response, health and social care secretary Matt Hancock said he had ordered that the care of every patient in long term segregation or seclusion be reviewed by specialist independent advocates.
The CQC’s recommendation was made in an interim report today, setting out early findings from its review of restraint, prolonged seclusion and segregation for people with a mental health problem, learning disability or autism.
The review, commissioned by the government, also highlighted the need for a better system of care for people with a learning disability or autism who are, or are at risk of, being hospitalised and segregated.
Via an information request sent to providers, the CQC was told of 62 people who were in segregation, including 42 adults and 20 children and young people – some as young as 11 years old.
“In some hospitals, a high proportion of staff were unqualified, with little or no training”
Sixteen people had been in segregation for a year or more – one person had spent almost a decade in segregation. The longest period spent in segregation by a child or young person was 2.4 years.
The CQC said it had so far visited and assessed the care of 39 people in segregation, most of whom had an autism diagnosis.
Reasons for prolonged time in segregation included delayed discharge from hospital due to there being no suitable package of care available in a non-hospital setting. For some, the commissioners had found it difficult to find a suitable placement.
The safety of other patients or staff and inability to tolerate living alongside others were the most common reasons providers gave for why people were in segregation.
In some cases, staff believed that the person’s quality of life was better in segregation than in the less predictable environment of the open ward.
Some of the wards were not suitable environments for autism patients and many staff lacked the necessary training and skills to work with those with the condition who also have complex needs and challenging behaviour.
Around half of the people in segregation were in wards managed by the independent sector and half were in the NHS, the CQC found.
Twenty-four of the places were commissioned by a clinical commissioning group, 30 by NHS England specialised commissioning, three by local authority commissioning, two by Welsh commissioning and three did not specify the commissioning arrangements.
Dr Paul Lelliott
Dr Paul Lelliott, CQC deputy chief inspector of hospitals (lead for mental health), said: “The 39 people we have visited who are cared for in segregation are in a very vulnerable situation.
“Their world is narrowed to a highly restricted existence in a single room, or small suite of rooms,” he noted.
“For many, their interactions with other people are characterised by distress and sometimes by the use of force by staff who consider this necessary to protect the person or others from harm,” he said.
“They have little or no say over decisions about their lives or their future,” he said. “Many are also a long way from home – which can make it difficult for families to maintain contact.
“We are calling for urgent action to strengthen the safeguards that protect the safety, welfare and human rights of people held in segregation,” said Dr Lelliott.
He added: “We think that independent advocates have an important role to play in this – if they are trained and supported to recognise what is good care and what is not.
“Given the severity and complexity of their problems, people held in segregation should be receiving expert care in an environment that is adapted to their specific needs,” he said. “Although this was the case for some, for others the care was simply not of an acceptable standard.
“In some hospitals, a high proportion of staff were unqualified, with little or no training in the skills essential for working with people with a learning disability or autism and complex needs,” he noted.
“I have been deeply moved and appalled by the distressing stories”
Dr Lelliott said a “better system of care” would provide effective help early in life for people with complex problems and challenging behaviour, and to respond effectively when crises occur.
If a spell in hospital is right for the person, he called for this to be close to their home and not prolonged because of lack of an alternative place for them to go.
“In short, the system must put the person at the centre and be engineered around their needs,” he said. “This has implications for commissioning and for who controls the funding.
“We will also be reviewing and revising CQC’s approach to regulating and monitoring hospitals that use segregation to ensure we are gaining a true view of the quality of care for people subject to such restrictive practices,” he added.
The interim report focuses exclusively on the experience of those people cared for in segregation on a mental health ward for children and young people or on a ward for people with a learning disability or autism.
As well as exploring the use of restraint in these hospitals, the CQC will expand its review to a wider group of settings from June to December, including low secure and rehabilitation mental health wards and adult social care services.
It will also work with Ofsted to consider the use of restrictive intervention in children’s residential services and secure children’s homes.
The CQC is due to report its full findings and recommendations in a final report in the spring of 2020.
In response to the report, Mr Hancock said the care of every patient in segregation or long-term seclusion will be reviewed as part of plans to fix the current “broken” model of care.
The government will fund specialist, independent advocates to work with families, join up services and work to move people to the least restrictive care and then out into the community, he said.
Mr Hancock said: “I have been deeply moved and appalled by the distressing stories of some autistic people and people with learning disabilities spending years detained in mental health units.
“At its best, the health and care system provides excellent support to people, backed by a dedicated workforce,” he said. “But a small proportion of some of the most vulnerable in society are being failed by a broken system that doesn’t work for them.
“I commissioned the Care Quality Commission to review the use of segregation in health and care settings to tackle this issue head on,” said Mr Hancock.
“Today I have accepted their recommendations in full,” he said. “I hope this is a turning point so everyone receives the care they need.
In addition, he announced a wider package of measures designed to improve care for autistic people and those with learning disabilities.
This includes a new working group for learning disabilities and autism, bringing together experts, clinicians, parents and carers to develop a new model of care and a new awareness campaign, to encourage staff, families and friends to come forward if they have concerns about care.
Meanwhile, NHS England today announced that an additional £5m would fund reviews to improve care for people with a learning disability and committed to renewed national action to tackle serious conditions.
It said the the “world’s first” programme to review the deaths of everyone with a learning disability was being expanded to speed up the spread of best practice, and thousands more reviews would be carried out over the next 12 months, driving local improvements to help save and improve lives.
NHS England medical director Professor Stephen Powis has also “written to leading doctors and nurses across the NHS to ensure that a learning disability or down syndrome should never be a reason to issue a do not resuscitate order or cause of death certificate”, said the government arms’-length body.
Deputy chief executive of NHS Providers, Saffron Cordery, said: “This review of restrictive practices and segregation by CQC is timely and welcome, focusing on some of the most vulnerable in society.
“It is clear that across NHS services and the independent sector more work must be done to ensure the system is fit for purpose,” she said.
“We need urgent action now to put resources in place so that we can treat people speedily and appropriately,” noted Ms Cordery.
She added: “To do this will require investment; investment in our mental health workforce to overcome the severe shortage of specialist staff needed to deliver this level of care. We must also see investment in facilities.”