Overhaul needed to end ‘inhumane’ hospital care of people with learning disabilities or autism, says CQC

The Care Quality Commission (CQC) has demanded a fundamental overhaul of services for people with autism, learning disabilities and/or mental health conditions after finding “undignified, inhumane” hospital care in which many people are subjected to prolonged seclusion and unnecessary restraint.

The damning verdict came in a government-commissioned review into restraint, seclusion and segregation published today, the latest in a long line of reports to urge systemic change in services for people with autism and learning disabilities, through investment in community care to prevent admissions and ensure hospital stays are a last resort, of short duration and therapeutic.

The report depicted a system in which a failure to provide adequate community-based support and crisis response – particularly for autistic people and those with experience of childhood trauma – led to people being admitted to untherapeutic hospital environments, triggering behaviour perceived as challenging that was met with restraint, seclusion or longer-term segregation.

The regulator made 17 recommendations – which the government is considering – including for a minister to take responsibility for delivering on its proposed changes and a named national commissioner to be appointed for complex care to hold local commissioners to account for reshaping services.

Poor environments, culture and training

Of the 66 people whose care the regulator reviewed in detail, inspectors found evidence of consistently good-quality care for three. It found 71% had been segregated or secluded for three months or longer, while 81% of 313 wards it reviewed had used physical restraint in the month preceding CQC’s information request.

In 56 of the wards, staff had used prone restraint – where a person is held face down – at least once in the previous month, despite the Mental Health Act code of practice making a presumption that this should not be used.

The CQC found evidence of people being re-traumatised by the use of restraint on them; on one ward, there was no specific guidance on restraining women who had experienced trauma, such as sexual abuse.

The use of restrictive interventions were driven by poor environments, culture and training, the CQC found.

The regulator said ward environments were often not suitable for autistic people and those with learning disabilities with the impact of noise, heating and light not considered, triggering cycles of distress, restraint and seclusion.

This was exacerbated by blanket rules that robbed service users of control over their lives, and high staff turnover and vacancies, leading to high pressure and a reliance on agency staff. As they did not understand people’s needs, they could not work proactively with them, leading to an increased focus on managing risk and crises.

Staff were also inadequately trained, particularly in human rights or value-based care, with inspectors finding the skills and knowledge of staff to be poor, very poor or below standard for 61% of the people they reviewed on learning disability wards.

Care and treatment was often generic, rather than needs-based, with positive behaviour support or rehabilitation plans often poor.

A better culture in social care

The regulator found that adult social care services were generally more personalised than hospital provision, with more activities tailored to people’s needs and interests, often delivered by well-trained staff, with more suitable physical environments that caused less distress to service users than hospital equivalents.

It also found, in many services, a culture that focused on the de-escalation and prevention of distressed behaviours, including through the use of positive behaviour support. In most services, when restraint was used, the methods used were the least restrictive and least likely to cause harm.

However, it found a lack of oversight of the use of restrictive practices, with no duty on providers to report incidents to commissioners or the CQC, something the regulator said needed to change.

“Frustratingly ubiquitous” themes in multiple reports

CQC’s deputy chief inspector for hospitals and mental health lead, Dr Kevin Cleary, said it was clear fundamental change was needed: “Increased oversight and accountability are key to ensuring people are properly safeguarded. 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.”

The report is the latest in a string of studies to demand action on this issue. For the CQC review, a group of experts of experience studied 30 such reports published since 2007, which they said had identified “frustratingly…ubiquitous” themes, but whose implementation had been hampered by lack of “fit-for-purpose administration, funding, accountability and inspection regimen”.

The expert advisory group (EAG) added: “Almost every report identified the frustrating lack of accountability within the system. The EAG firmly believes that the current approach to accountability is insufficient. People with a learning disability and autistic people need CQC to implement an inspection framework that is fit for purpose, one that is focused on upholding people’s rights. Without this, human rights abuses of our most vulnerable will not only continue, but also be inevitable.”

National Autistic Society director of external affairs Jane Harris described the report as “disturbing”. She added: “If each area puts in place the right social care and housing services, hundreds of autistic people won’t need to go into hospital in the first place. We fully support the CQC’s call for a single national commissioner and minister to make sure this happens.”

Slow fall in hospital numbers

The government and NHS leaders have long sought to reduce the numbers of people with learning disabilities and autism in hospital and switch investment into community support; however, the number of inpatients has remained stubbornly high.

As of the end of September 2020, 2,060 people with learning disabilities and/or autism were in hospital, down from 2,315 two years previously and 2,595 in 2015. NHS England has a target to reduce inpatient provision by at least a half of 2015 levels – adjusting for population growth – by 2023-24.

Last November, following an interim report from the CQC’s review, focusing on seclusion and segregation, health and social care secretary Matt Hancock ordered that all inpatients receive a care review within the subsequent 12 months and either a discharge date or a plan to move them closer to the community. He also appointed an independent panel, led by crossbench peer and learning disability expert Baroness Hollins, to examine the cases of those in long-term segregation.

Responding to the CQC’s report today, care minister Helen Whateley said: “The quality of care uncovered in the report is deeply concerning. Nobody should be receiving such poor care and we are already taking action, including investment in community services, independent case reviews of people in long term segregation, and the ongoing work overseen by Baroness Hollins. 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.”

How CQC carried out its review

The review, from November 2018 to November 2019, was based on visits to 43 hospital wards for people with learning disabilities or autism, and children and young people with mental health needs, 13 mental health rehabilitation and low-secure wards, 27 care homes for people with a learning disability or autism, 11 children’s services and five secure children’s homes.

It also gathered information from 452 questionnaires completed by registered adult care providers, assessing care plans, reviewing prescriptions and other medicine reports and writing to commissioners about the cost of placements.

It conducted in-depth reviews of 66 people’s care, 42 of whom had an autism diagnosis and 21 having been looked-after children.