Too many children with learning disabilities or autism are admitted to secure hospitals when they do not need to be there, a report by the Children's Commissioner for England said.
It found "shocking" evidence of restrictive practices, with some children spending months and years in institutions where they could endure distressing, disruptive, and traumatic conditions.
The report, Far Less then they Deserve , said the number of children with these conditions being held in secure wards was increasing, despite government pledges to reduce the numbers.
The current system of support for those with learning disabilities or autism was letting down some of the most vulnerable children in England, with parents often feeling powerless to intervene, it said.
Researchers made a series of visits to mental health care hospitals where they spoke to children and some of their family members.
Anne Longfield, the Children's Commissioner, said: "I will never forget the stories I heard, and the tears of frustration and anger, from mums and dads of these children at a meeting I arranged for them.
"Some of them have a child who has been locked away in a series of rooms for months. Others have to listen as they are told by institutions that their children have had to be restrained or forcibly injected with sedatives. They feel powerless and, frankly, at their wits end as to what to do."
Her assessment coincided with an interim report by the Care Quality Commission (CQC) which is reviewing the use of restraint, prolonged seclusion, and segregation for people with a mental health problem, a learning disability, or autism.
It called for 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.
Children's Commissioner Report
Among the main findings in the report by the Children's Commissioner:
There were 250 children with a learning disability or autism in a mental health hospital in England in February 2019, compared to 110 in March 2015
Nearly three quarters of children currently in mental health hospitals have autism but not a learning disability, while around 1 in 7 have a learning disability only, and another 1 in 7 have both
Figures from NHS Digital showed that on average, children with autism and/or a learning disability had spent 184 days living in their current hospital, and 240 days in inpatient care in total
95 children were staying in a ward more than 31 miles from home, making it harder for family members to visit
25 children had been in a secure hospital for at least a year and were in a ward at least 62 miles from home
Families described the negative impact of siblings having to travel long distances to visit their brother or sister and having to meet them in "unfamiliar and intimidating hospital environments".
The report also focused on the use of restraint and seclusion in secure hospitals. It said that despite some issues over how restraint practices were recorded, 75 children with a learning disability and/or autism in hospital were recorded as having been restrained in December 2018. Among those children, 820 incidents of restraint were reported in that month.
Overall, the most common form of restraint recorded was 'physical restraint – excluding prone', which accounted for 59% of all restrictive interventions in December 2018.
Some children spoke freely to the report's authors about their experiences. One girl commented: "I don't like being restrained…It's not very good. I don't like leg holds…When I said I don’t feel comfortable they let go. They didn't immediately, but they did when I persuaded them. I don’t like when they restrain me in my room."
The quality of care in hospitals was highly variable, the report found. Some families told the Children's Commissioner their children had received excellent care but others had "shocking" stories, including one family who said their son had not been washed for 6 months while in hospital.
Many parents reported feeling shut out of decisions about their children's care. Some families said they had even faced 'gagging orders' to prevent them from speaking out about problems.
The Children's Commissioner made a number of recommendations including a national strategy to lessen the chance of children needing to be admitted to secure hospitals, face-to-face assessments of children in consultation with their families and community services, before children are admitted, and improvements in care standards and staffing in hospitals.
"A national strategy is needed to address the values and culture of the wider system across the NHS, education and local government so that a failure to provide earlier help is unacceptable, and admission to hospital or a residential special school is no longer seen as almost inevitable for some children," Ms Longfield said. "There has been report after report and promise after promise to address this issue and yet the number of children in hospital remains stubbornly high.
"We know more about the lives of these children and the impact it is having on their families, than we did. The onus is now on Ministers, the NHS, the CQC, Ofsted, and local authorities to make sure that these most vulnerable of children are not locked out of sight for years on end simply because the system is not designed to meet their needs.
"Hospital admission must always be in a child’s best interests and as part of a managed process, with clear timescales and a focus on keeping the length of stay as short as possible. This is clearly not happening at the moment and instead we have a system which is letting these children down."
Report by the Care Quality Commission
In its interim report published today, the CQC called 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.
Responses to information requests sent by providers by the CQC identified 62 people who were in segregation. This included 42 adults and 20 children and young people, some as young as 11 years old.
Of these, 16 people had been in segregation for a year or more. The longest period spent in segregation by a child or young person was 2.4 years.
Preliminary results based on visits to 35 wards and an assessment of 39 people, showed that:
Many people had been communicating their distress and needs in a way that people may find challenging since childhood, and services were unable to meet their needs
A high proportion of people in segregation had autism
Some of the wards had unsuitable 'built environments' for people with autism
Many staff lacked the necessary training and skills
Several people visited were not receiving high quality care and treatment
The researchers also reported problems reintegrating those who were segregated back onto the main ward, and delays discharging some people from hospital.
Dr Paul Lelliott, deputy chief inspector of hospitals, who leads on mental health at the CQC, 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.
"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. They have little or no say over decisions about their lives or their future. Many are also a long way from home – which can make it difficult for families to maintain contact."
The CQC investigation followed a request from Matt Hancock, the Secretary of State for Health and Social Care, to look into the use of restrictive interventions.
Responding to the interim findings, Mr Hancock said that the care of every patient in segregation or long-term seclusion would be reviewed. Additionally, the Government would work to move people to the least restrictive care and then out into the community.
Learning disabilities and autism were one of the four clinical priorities in the NHS long-term plan, the Department of Health and Social Care said.
Dr Andrew Molodynski, consultants committee mental health lead at the British Medical Association (BMA), said: "We must do everything we can to protect the most vulnerable within our care, especially those children and young people suffering from serious conditions like autism.
"Any case where it is deemed necessary to segregate a patient must be rigorously and closely examined with the highest level of scrutiny."
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Cite this: Peter Russell. Reports Flag Failings in Mental Health Care System - Medscape - May 21, 2019.