The Health and Social Care Committee have published their long-awaited report which scrutinises the treatment of autistic people and people with learning disabilities in inpatient units.
The report is the latest of a long line dating back to the Winterbourne View scandal 10 years ago. Sadly, it reveals that little has changed in those 10 years, with more than 2,000 people with learning disabilities and/or autism still stuck in inpatient settings.
Shocking treatment of people with learning disabilities and autism in inpatient units
Over the course of three oral evidence sessions, the committee heard from those who had both direct and indirect experiences of inpatient care.
The panel heard of the shocking treatment of people with learning disabilities and autism in inpatient units, many of whom are now living with lasting physical and mental trauma caused by the frequent use of restrictive practices.
Alexis Quinn, (an autism activist, author and Restraint Reduction Network manager) powerfully described her own experiences in an inpatient hospital. She describes how she was regularly subject to restraint, seclusion and segregation, with “six to 10 men pinning me to the floor, pulling my pants down, injecting me with sedatives and then secluding me”.
Alexis explains that inpatient units are “the most inappropriate place” for autistic people, asserting that restraint should be used as a last resort and not to ensure compliance or for coercion, which sadly, are the primary reasons for its use.
In another evidence session, Bengi O’Reilly and Dr Sara Ryan both recounted the stories of their children who had been subject to mistreatment in inpatient settings.
Bengi explains how her autistic daughter received a complete lack of support when she hit crisis point in 2018. When she was finally admitted, she was moved to an assessment and treatment unit (ATU) hundreds of miles away. When Bengi went to visit her daughter, she was “torn away” from her and physically restrained in front of her very eyes.
Dr Sara Ryan recounts her son’s experience in an inpatient unit, in which he tragically died while under the hospital’s care. Connor was autistic and had epilepsy; he drowned after having a seizure in the bath while he was meant to be under the supervised watch of staff. Sara then had to fight ferociously to find out what happened to Connor, after his death certificate said he died of natural causes.
The stories described Alexis, Bengi and Sara are sadly only the tip of the iceberg and represent just a small number of the individuals and families who have been through similar experiences.
The report concludes that these experiences are entirely “unacceptable”, and states that: “autistic people and people with learning disabilities have the right to live independent, free and fulfilled lives in the community.”
Investment in community support is vital for the closure of beds
In order to close these beds permanently and prevent these incidences from reoccurring, further financial investment in community support is essential. The panel write that they are “deeply concerned” that community support is significantly below the level required to meet the needs of those people with autism and learning disabilities and say “fixing this must be a greater priority for both the Department of Health & Social Care and NHS England & Improvement.”
The committee ask the Department to provide a cost assessment for community support and then deliver the necessary funding for these services. In this way, there will be a “credible” alternative to inpatient units allowing autistic people and people with learning disabilities to live independent and fulfilled lives in the community.
The report acknowledges that currently, change is occurring far too slowly. Successive governments have tried and failed to significantly reduce the number of patients in ATUs and 10 years down the line, we’re still in the same position.
Targets have been delayed or missed time and time again and now, the committee is calling for “a more radical approach.” The Trieste model of care is frequently mentioned throughout the inquiry, and the report calls for a similar model to be implemented in England.
The approach favours an “easy in, easy out” approach, which allows for quicker admissions and discharges from inpatient facilities, limiting the number of people in such facilities for long periods of time and utilising community support as the primary method of care.
Currently, the average length of stay in ATUs is six years. To tackle this, the report calls for an immediate ban to all long-term admissions (except for forensic cases) and the introduction of weekly formal reviews of the suitability of admission for people who have been kept in inpatient facilities for three months or more. Additionally, the committee states that all ATUs should be closed within two years and replaced with settings which abide by the same principles as the Trieste model.
Finally, they suggest that people with learning disabilities should never be admitted to an inpatient facility that has received an “inadequate” rating from the Care Quality Commission (CQC).
Reducing the use of restrictive practices and preventing preventable deaths
From the stories told of those with direct and indirect experiences of inpatient settings, we know the use of restrictive practices is extremely damaging both mentally and physically.
In spite of this, restrictive practices happen far too frequently. Data from the most recent NHS digital figures shows that in March 2021, 4,355 restrictive interventions were reported; and 1,290 of these were against those under the age 18. These figures are particularly shocking considering around 40 providers do not report or publish these figures.
In order to significantly reduce the use of restrictive practices, the report suggests two reforms are introduced. Firstly, providers must publish the figures for the use of restraint on individuals in inpatient facilities twice a year; and secondly, providers must meet with families and commissioners within a month of each incidence of restraint and explain why it happened and what is being done to prevent reoccurrence.
The report also acknowledges that there have been far too many incidences of people with learning disabilities and or/autism dying preventable deaths in inpatient units. As the testimonies reveal, often when this happens family members have to go to great lengths to have independent reviews of these deaths.
The committee therefore recommends that the Government and NHS bring forward the necessary financial and workforce resources required to mandate the independent review of the deaths of all autistic people and people with learning disabilities in inpatient and community settings. In this way, the committee hope to reduce the number of unnecessary deaths in both settings and ensure justice and closure for families who have been through similar experiences.
Providing high quality training and support for staff
The committee say they have “significant concerns” about the quality of training and support provided to staff working in inpatient facilities and the negative consequences this can have on the treatment of autistic people and people with learning disabilities.
Poor training has led to a lack of understanding from many staff members working in inpatient units, fuelling misconceptions about how people with learning disabilities and/or autism should be treated. As the report states: “ultimately, a system based on incarceration, restraint and seclusion will create an environment which dehumanises both staff and inpatients.”
For this reason, while inpatient units remain open, staff working in such settings must receive better training. The committee states that staff must understand that people with learning disabilities and/or autism have non-treatable conditions, they should be put at the centre of their care plans, and that any form of restraint should be avoided when possible.
The committee also ask the Department and NHS England to fully explore the possibility of creating an Intellectual Disability Physician. Those who earn this title would ensure the physical health and wellbeing of autistic people and people with learning disabilities, with the aim of reducing admissions, the length of hospital stays and improving the quality of care they receive.
The committee expect a response from the Department regarding this matter by the end of 2021.
“A hospital is not a home”
Dan Scorer, head of policy at Mencap, described the inquiry as an “important report” that “provides yet further evidence that not enough has been done to stop this national scandal”.
Richard Kramer, Chief Executive of Sense, similarly hailed the report for highlighting the need for community provisions and closing beds. He said: “A hospital is not a home and it’s completely unacceptable that people with autism and learning disabilities are still living in inappropriate settings without the right care and support, causing great anxiety and distress. We’ve seen too many instances of abuse and safeguarding violations in these settings and this cannot be allowed to continue.
“With the right support, many people with autism and learning disabilities would not need to be admitted to these settings in the first place, which are often very far from their home and families. We need investment into community care services to ensure people with autism and learning disabilities receive the right care and support without reaching crisis point. This is needed more than ever with many services being disrupted by the pandemic and families managing without their usual support.”
From the response to the inquiry, it is clear that the community are frustrated with the lack of progress made by the government. However, there is hope that this time, the government will act upon the recommendations laid out by the committee and end the mistreatment of autistic people and people with learning disabilities in inpatient units once and for all.