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Nearly 15 years on from the Winterbourne View scandal, many people with autism and learning disabilities remain trapped in mental health hospitals. Here, Darren Devine explores long-standing concerns that private sector profits and low pay bedevil the care sector.
This article is from In Focus September: The Ageing Issue.
It has been almost 15 years since the abuse and human rights violations at Winterbourne View were exposed in a BBC Panorama documentary.
It led to calls for change, and because of the scandal, the government introduced the Transforming Care programme, which aimed to significantly reduce the number of people with a learning disability or autism admitted to hospitals and assessment and treatment units (ATUs).
NHS England entitled their initiative “Building the right support”, which aimed to halve the number in inpatient settings by 2019 and improve the health and care services in those which remained open.
However, this target was not even closely met. Many remain in hospitals, where overmedication and restraint can become a routine part of life. The latest NHS figures show there were 2,010 people with autism and a learning disability in mental health hospitals at the end of July. Up to 50% of these have been in hospital for over two years.
It could be closer to 4000 people stuck in hospital
Separate statistics collected as part of the mental health services dataset (MHSD) and classed as “experimental”, put the number of people with autism and learning disabilities in hospitals at 4,005 at the end of June.
When former Prime Minister Theresa May introduced her 10-year plan for the NHS, the target was to halve the number of people in hospitals at 2015 levels by 2023/24.
This meant reducing the number to around 1440. Measured against the Assuring Transformation figure of 2010, the government is almost 600 discharges off reaching this goal a year after the target date.
At the end of December 2015, there were 2,595 people in hospitals, indicating a drop of around five patients per month. So progress has been glacially slow.
A horrific Victorian care package
Jez Harris struggled for three years with seeing his autistic daughter Bethany’s life controlled by a “horrific Victorian care package”.
During her stay at Northampton Hospital, St Andrew’s Healthcare, Bethany, 25, endured long spells in segregation when she was kept in a “cell“ and fed through a hatch.
She described the experience as “hell” and told how her parents were forced to hold her hand through the hatch because they were not allowed into her room. Now, 10 years on, Bethany is thriving in her own home in Bromsgrove, Worcestershire, with the support of staff. Jez said his daughter is “living her absolute best life”.
He added, “She’s got her own house. She is seven minutes away from me. She’s out and about every day. She even does some little Comic Con events. She volunteers as like a semi-professional role player at those.”
Jez has previously admitted that before she was segregated at St Andrew’s, Bethany had lashed out and hurt staff. He has also said she had self-harmed and needed to be separated to keep herself and others safe. He added that she will always exhibit a “certain amount of behaviours”, but insists these are now properly supported.
After years fighting on his daughter’s behalf, he has switched careers from a role as a lorry driver and is now an expert by experience on the care system. As part of his work, he attends between 100 and 120 care and treatment reviews each year. These are independent meetings to ensure disabled adults are receiving the proper care.
Jez maintains that issues like low pay and the role of private sector mental health hospitals undermine progress in care.
“In any employment, low pay is linked to quality. If you don’t pay the money, you don’t get the quality,” he said.
A private sector set on making money
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A new analysis by the healthcare think tank The King’s Fund suggests that more than one in four NHS mental health beds are provided by the independent sector, which includes private companies, charities, and social enterprises.
The King’s Fund analysis suggested approximately 29% of all mental health beds in the NHS in England were provided by the independent sector last March.
Jez added, “Well, let’s face it, who are the private sector making the money for? Shareholders – so cost cutting in order to pay dividends. In the private sector I see a huge lack of key staff, so occupational therapists, speech and language, psychology, people who provide either animal, music, art, or drama therapy.”
But one mother whose son was forcibly injected, restrained and endured periods of segregation during his time in an independent mental health hospital, said the problems go beyond the private sector.
The mother, who did not want to be identified, wrote in a message that “private hedge fund owned care providers and mental health providers are raking in profits, but providing a skeleton ‘care’ staff”.
She added, “But it’s not just the private sector. There are NHS inpatient units that are woefully inadequate.”
The cost of locking people up
In March 2024, a joint investigation by Mencap and ITV News revealed that more than half a billion was being spent on locking people up in hospitals. The investigation found that around £534 million was spent providing beds for people with learning disabilities and autism.
Mencap has described the situation as a “gross misuse of public funds being wasted on the wrong kind of care“.
Director of policy at the King’s Fund, Siva Anandaciva, says the NHS “has become reliant on the independent sector for delivery of routine, mental health care”.
He said the transparency of data kept by the independent sector monitoring care quality is not up to scratch. Anandaciva added that dependence on the independent sector “exposes the health service to greater risk of higher costs” and “could leave patients facing longer stays in hospital”.
The National Autistic Society says the new Mental Health Bill, which is still going through Parliament, represents an opportunity to end the “human rights scandal” of people enduring lengthy stays in hospitals.
The charity maintains the Bill must enhance responsibilities to provide better community care, improve protections for autistic patients, ensure treatment is always therapeutic and close alternative routes to detention.
Charity boss Sir Stephen Bubb’s key 2014 report, Winterbourne View — Time for Change, urged an end to long-stay hospital care.
Now the executive director of the research group, the Gradel Institute of Charity, Bubb’s report recommended radical steps, such as giving people with learning disabilities and their families a charter of rights and the ability to challenge admissions.
He told us that “since Winterbourne View, there have been further scandals in these institutions. And such scandals will continue until they are closed.
“I’m looking to (Secretary of State for Health) Wes Streeting to take action, and finally put an end to this barbaric treatment of some of our country’s most vulnerable citizens.”
The Department of Health and Social Care were asked to comment, but has not yet responded.
Box one. Experiences of staying in a long stay hospital
Understanding the perspectives of people with learning disabilities and/or autistic people, family and staff when transforming care for people in ‘long-stay’ hospitals
The University of Birmingham and the rights-based organisation, Changing Our Lives, have conducted a joint project to better understand the experiences of people with learning disabilities and/or autistic people in ‘long-stay’ hospital settings.
Using this knowledge, they have created the below practice guides and training materials to support new understandings and new ways of working. Social Care for Excellence have supported the project by creating training videos to disseminate the outcomes from the project to the health and social care sector.
In recent years, there has been growing concern about the number of people with learning disabilities and/or autistic people being admitted to hospital for extended periods of time, in some cases, many years, with no planned date for them to leave.
There has been surprisingly little research on why people are delayed in such settings. In particular, previous research has often failed to talk directly to people with learning disabilities/autistic people, their families and front-line staff about their experiences of living or working in such settings, what they see as the main barriers and what would help more people to leave hospital.
Resources
- Why are we stuck in hospital project?
- NIHR peer report: ‘Why are we stuck in hospital?’ Barriers to people with learning disabilities/autistic people leaving ‘long-stay’ hospital: a mixed methods study
- Policy guide with ‘ten top tips’ to help more people leave hospital
- Easy-read version of the policy guide designed for people with learning disabilities
- Background review of the literature, which looks at previous research on this topic and highlights the failure to draw on lived experience/practice knowledge.
