There are well over a million people with learning disabilities in England. Like anyone, people with learning disabilities or autistic people can experience times of crisis and heightened distress, particularly when they and their families have not had the support they need.
These people, their families, the government and health services agree what the best help is at times of crisis. It is help that is at home or close to home, keeps people connected to who and what they know, and that is respectful and geared towards helping the person pursue a fulfilling life. The kind of help that anyone would want for themselves or a loved one.
But this is not what they are getting. Our new report from the 7 Days of Action campaign group and Lancaster University reveals that private companies are being paid over a quarter of a billion pounds a year by the NHS to run “specialist inpatient units” or mini-hospitals for autistic people or people with learning disabilities in crisis. These companies are building new inpatient units when government policy for the last five years has been to reduce them, as they are not the best way to support people in crisis. Private companies now run half of all these services in England.
Six years ago, a BBC Panorama undercover documentary exposed horrendous abuse of autistic people or those with learning disabilities in Winterbourne View, run by a private company, Castlebeck. Winterbourne View was one of this network of inpatient units supposed to provide highly expert support to people in crisis, with the aim of helping them get back to living their lives as quickly as possible. These units are paid for with NHS money, but can be run by the NHS or by private companies. Six care staff at Winterbourne View were jailed and five further staff were given suspended sentences for their part in the abuse, and the unit was closed.
In reality, many of these inpatient units don’t do what they are supposed to. According to people’s care plans written by health service professionals, almost a third of people in these units don’t need to be there. And over a third have been in them for five years or longer. A 2015 census of those in these units found that, in the three months before the census, almost a quarter had been a victim of physical assault in the unit.
Appalling episodes of abuse in these units continue to be exposed, including basic failures of care resulting in people dying a preventable death. People with learning disabilities repeatedly talk about how inpatient units are not the best place for them and how, once admitted to a unit, they find it very hard to get out.
The government agrees. Ever since the BBC Panorama programme, government policy in England has been to drastically reduce the number of these inpatient units, including plans to improve how people and families are supported in their own homes so that people are less likely to experience a crisis and are more likely to get support at home if they do.
But not nearly enough has been done. There are arguments about whether the number of autistic people or people with learning disabilities in these inpatient units has gone down and by how much. But on any given day, there are between 2,500 and 3,000 people in these “specialist” units. At least another 1,000 are likely to be in general mental health inpatient units.
This isn’t the scale of change set by the government in successive targets, or that demanded by patients and families. Funding these units is also approaching half a billion pounds per year of public money that could be invested in much better ways to support people.
A trade in people
Given that this has been the clear direction of government policy for at least five years, why haven’t services to support autistic people or people with learning disabilities transformed accordingly?
There are many potential reasons, but one important one is the growth of mostly for-profit private sector inpatient units. This is highlighted in our new report. While the number of inpatient units run by the NHS is falling in line with government policy, the number of inpatient units run by the private sector is increasing. In 2006, a fifth of units were run by the private sector, now it is up to around a half. More than £250 million of public money per year is now spent on these private sector units.
This is a problem because when direct comparisons between NHS and private sector units have been made, private sector units were revealed to be worse. They were less likely to comply with standards set by the health service regulator, people stayed in them longer, and people in them were more likely to experience episodes of assault, self-harm, physical restraint from staff, and seclusion (being placed in solitary confinement for a period of time)
Private sector units also charge the public purse more. New units are not being built to be close to those people using them, with decisions about them likely to be based on financial considerations for the company. A quarter of people in these units are over 100 kilometres from home, wrenching people away from family and friends and making it very difficult and expensive for families to visit regularly.
Under financial pressure, the temptation is for councils (who pay for social care) and health service commissioners to try and shunt people (and therefore costs) between them rather than work together to develop decent support for people and families.
The result is people in crisis being sent to any inpatient unit with an available place, at short notice. Private companies operate on the Kevin Costner Field of Dreams principle – if you build it, they will come. Without action explicitly designed to stop this happening, this trend will only continue, with more and more people turned into commodities.
Chris Hatton receives funding from the National Institute for Health Research and Public Health England, although the views expressed in this article are personal. He is affiliated with the 7 Days Of Action campaign group.