Many vulnerable children with learning disabilities are stuck in mental health hospitals for too long in poor conditions
Anne Longfield, the Children’s Commissioner for England, is today publishing a new report, ‘Far less than they deserve: Children with learning disabilities or autism living in mental health hospitals’. The report shows how too many children are being admitted to secure hospitals unnecessarily – in some cases are spending months and years of their childhood in institutions when they should be in their community. It warns that the current system of support for those with learning disabilities or autism is letting down some of the most vulnerable children in the country.
The report also finds shocking evidence of poor and restrictive practices and sedation, with some children telling the Children’s Commissioner of how their stay in mental health hospital has been traumatic, and parents too often left feeling powerless to do anything to intervene.
Some of the main findings in today’s report include:
- The numbers of these children identified in mental health hospitals is increasing – despite government targets to slash the numbers of people with a learning disability or autism in hospital. 250 children with a learning disability or autism were identified in a mental health hospital in England in February 2019, compared to 110 in March 2015. Nearly three quarters of these children have autism but not a learning disability. Around 1 in 7 have a learning disability only, and another 1 in 7 have both.
- Children are being detained in hospital for too long. Data provided to the Children’s Commissioner’s Office by NHS Digital shows that on average, children with autism and/or a learning disability had spent 6 months (184 days) living in their current hospital, and 8 months (240 days) in inpatient care in total. Around 1 in 7 children had spent at least a year in their current hospital spell with their current provider; any could have returned home if support was available.
- Children are being placed far from their family and home, making it very difficult for families to visit. Data provided to the Children’s Commissioner’s Office reveals that 95 children were staying in a ward known to be more than 50 km (31 miles) from home. This accounts for roughly half of the children for whom the distance from home was actually recorded. 55 children (nearly a third) were in a ward known to be more than 100km (62 miles) from home.
- Nearly 1 in 4 children (60 children) had a total length of stay of at least 6 months and were in a ward at least 50 km (31 miles) from home. Around 1 in 10 children (25 children) had a total length of stay of at least a year and were in a ward at least 100km (62 miles) from home.
- The quality of care in hospitals is highly variable. Some families told the Children’s Commissioner about the excellent support their children had received, but others had shocking stories to tell. Others said the physical care needs of their children had been neglected, with one family saying their son had not been washed for six months while in hospital.
- Children’s care is not being regularly reviewed, meaning they may not be getting appropriate care. Data shared with the Children’s Commissioner’s Office from NHS Digital shows around 1 in 4 children did not appear to have had a formal review of their care plan within the last 26 weeks, and roughly 1 in 7 (35 children) had not had a review recorded within the last year.
- Many parents feel they are being shut out of decisions about their children’s care and are not always informed about incidents involving their children. Others told how serious incidents had happened in hospital without families being told. Some families had even faced gagging orders where they had been prevented from speaking out about their children’s care.
Today’s report also shines a light on the use of restraint and seclusion. While data on restraint needs to be treated with caution because of issues with how restraints are recorded by hospitals, 75 children with a learning disability and/or autism in hospital were recorded as having been restrained in December 2018. This group received a reported total of 820 incidents of restraint in that month – nearly 11 incidents of restraint per restrained child, on average.
The most common type of restraint was “Physical restraint – Excluding prone (face down)” which accounted for 3 in 5 restrictive interventions in December 2018. One girl told the Children’s Commissioner’s Office: “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 … when there’s more than 2 people in my room … I got restrained with an arm round my back … it strained my wrist and it felt numb and had lumps”.
The report says there is some evidence from children of seclusion being used not as a last resort but as a threat.
The report also reveals:
- Concerns from parents about the limited accountability in the system where NHS commissioners spot purchase support, often from independent providers and a child lives far from home.
- Some children did not have bedding or sometimes even their own belongings in their rooms, at least during the day, in order to prevent the risk that they would try to self-harm.
- The perverse financial incentives which keep children in hospital.
- The community care system for children with a learning disability or autism is a postcode lottery. Thresholds for services can be too high for children to access or services may not be available at all. One expert described it as a “Cinderella service within children’s mental health, which is a Cinderella service within mental health, which is a Cinderella service in the NHS”.
The Children’s Commissioner’s Office made a series of visits to mental health care hospitals and spoke to children in these units as well as some families of children.
A mother of a teenage girl in hospital: “She’s been in for two years and she’s got to stay there until they find her a place. She doesn’t need to be in the hospital any more but she’s not allowed to come home. We would like her to be somewhere close to home that we can see her whenever we want and that she’ll be safe, where no one can take advantage of her. In crisis situations nobody should have to feel like nobody’s there for them. There’s no support in the community where people can go”.
One boy in a unit said: “Right now I’ve been here for 10 months or so and when I leave it’ll be more than a year. [When he first arrived they said he’d be there for 3 months.] That 3 months turned into six months and then 9 months. About 7 months ago I could have been out of here. It made me a lot worse having to wait for a school and every week they kept saying they’d find me a school and then it was wait another month”.
A hospital clinician told us that by the time a child is admitted to hospital: “A lot of them have had really abusive, failed histories. They’ve been bounced around the system. There have been multiple failures… they’ll have had 10 or more placements”. Another clinician told us he felt that “society turns a blind eye to these children”.
The Children’s Commissioner makes a number of conclusions including:
- Calling on Ministers to launch a cross-government national strategy with funding and clear targets to ensure there is the right support available in every area to stop these children going into hospital. This should address the values and culture of the wider system across the NHS and local government so admission to hospital or a residential special school is not seen as almost inevitable for some children.
- At a regional level, NHS England should actively monitor all children in inpatient settings and cases at risk of admission (for example those in residential special schools), then work with local commissioners to reduce length of stay and reduce the risk of admission.
- We need much better data collected on length of stay and delayed transfers of care in children’s mental health hospitals, in the same way that this information is closely scrutinised in physical health hospitals, and NHS England should use incentives to reduce them.
- Before children are admitted there should be proactive and face to face assessment of the child, in consultation with family and community services. There should be a clear plan as to why a hospital admission is necessary, what will be treated in hospital and what the child is being prepared for on return to the community.
- In order to protect children’s rights, appropriate monitoring needs to be in place of the quality of care while in hospital.
- Local authorities need to maintain and make proper use of risk registers to identify the children in their area with severe disability, communication needs, autism or other complex conditions where there is a risk that the child might need hospital admission due to challenging behaviour.
- Action also needs to be taken to improve the care within hospitals. Hospitals need to focus on recruitment of high quality staff.
- There is a need for culture change in the system with higher expectations and standards for units and staffing and tougher inspection by the Care Quality Commission. There should be clear requirements placed on those who commission care for children in hospital that they regularly visit to observe the quality of care, attend relevant meetings and interrogate data on incidents, rather than the child simply being placed and forgotten about.
- More transparency is needed over restraint approaches from providers.
Anne Longfield, the Children’s Commissioner for England, said:
“There around 250 children with a learning disability and/or autism in England living in children’s mental health wards. They are some of the most vulnerable children of all, with very complex needs, growing up in institutions often far away from their family home. For many of them this is a frightening and overwhelming experience. For many of their families it is a nightmare.
“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.
“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. 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.”