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

Regulator's review of restraint, seclusion and segregation finds poor environments and untrained staff leading to unnecessary restrictions, and urges system change to make hospital stays a brief last resort

Photo by: nito

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.

Bethany’s story

Beth was sectioned as a result of her needs not being met in the community, triggering behaviour that challenges others. Within days she was secluded because her autism prevented her from coping with the noisy, bright ward environment.

Staff lacked any understanding of her sensory, communication and processing needs, and just sat outside her room like security guards. As a result she self-harmed significantly and headbutted the wall in anger, which was met by regular restraint, including by multiple staff holding her down for up to four hours.

Her clothing was removed, leaving her naked, occassionally, handcuffs, leg straps and spit hoods were used, and she was forcibly injected with unjustified medication. She was kept in a locked room for three years.

Following a media campaign, she was moved to a new setting, where she had input into the design and environment, which is low stimulus and of which she is the only occupant. Her comforts are allowed and she has a choice of activities. Her family helped train her staff in her presentation and past experiences. All staff are fully autism trained and dedicated to her alone.

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.

Key CQC recommendations

  1. A named national commissioner must be appointed for complex care, to hold local commissioners to account and develop new quality standards for commissioning specialist learning disability and autism care.
  2. Community teams must be skilled up to support people with autism, learning disabilities and/or a mental health condition in order to prevent crises and hospital admissions, including through having specialist autism expertise and the ability to provide trauma-informed care.
  3. Hospital care must be high-quality, specialist and for short periods and deliver trauma-informed care in therapeutic environment, with autistic people cared for in small person-centred units with the right sensory environment.
  4. The Care Quality Commission must review its regulatory approach to ensure providers who have people in prolonged seclusion or using unnecessary restraint cannot be rated good or outstanding, increase unannounced inspections and prevent providers reopening services forced to close in a different guise.
  5. The government and health and social care commissioners must ensure there is sufficient funding to train staff to provide high-quality care.
  6. Providers must be contractually required to inform commissioners and NHS England about use of restrictive practices and there must be enhanced monitoring by commissioners to ensure plans for ending restrictions are in place, with a named person at the provider responsible for reporting progress.
  7. Care education and treatment reviews of people in hospital or at risk of admission must be put on a statutory footing and should be overseen by people with relevant experience.
  8. A national reporting mechanism must be developed for the use of restrictive interventions in children’s and adults’ social care services, to mirror that in hospitals.

“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.

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

  1. Anita October 24, 2020 at 10:30 am #

    Is this the same CQC that failed to act when they were sent information about abuse at Whorlton Hall as early as 2015 then scrambled to pose as a competent inspection body after Panorama?

  2. Angie October 24, 2020 at 5:21 pm #

    As a Senior Social Worker reading this continues to anger me. The staff who work on wards always talk about the admission needing to be fast and they seem focused on discharge rather than the person centred care and treatment. Sadly as numerous community services lack resources, training and knowledge of how to help people in need, clients of varying needs get discharged with severe and enduring needs.
    This remains an ongoing conflict which as always is ensuring the tick box is completed on wards and the actual need of the person is missed.
    I do hope this report starts to get services and staff appropriately trained and to provide the services needed albeit short stays or long stays on a ward.

  3. Chris Sterry October 30, 2020 at 8:20 am #

    Much of hospital care follows the ‘medical’ model, which is generally not good for many patients and certainly not for patients with Learning Disabilities and Autism.

    All care should be modeled on a model based on ‘patient-centred’ care, rather than ‘institutional’ care, that is care based on the needs of each individual and not the system that is in force currently.

    Patients views and choices should be obtained as early as possible, at admission would be ideal.

    This could be more expensive, but it is what is needed.

    I realise the article is referring to private hospitals in the field of mental health, but this is also relevant to General Hospitals dealing with the variety of medical issues.