(This post is based on our report A Trade in People)
Almost a year ago I remember having a social media conversation with a mum about the struggle she was having (and continues to have) getting her son home. For her and for many of the families involved with 7daysofaction, the justification for their loved one’s detention was no longer about them and their needs, it was about a system that had its own agenda. So over the last year we have been working to develop an understanding of the inpatient system and why the government and others, have struggled to reduce the numbers of people in inpatient hospital provision. Whilst the government’s strategies have focused on implementing Building the Right Support and rolling out Care and Treatment Reviews - which we support - we have been looking at how money and the growing influence of the independent sector is effectively creating a trade in people with learning disabilities and/or ASD.
Working with Chris Hatton and Elaine James we have produced a report entitled: A Trade in People: the inpatient healthcare economy for people with learning disabilities and/or ASD. which is published by the Centre for Disability Research at Lancaster University.
We began the work by putting in a Freedom of Information request to NHS England for the financial appendices to the Transforming Care Plans that each Transforming Care Partnership had been required to put in place in order to implement the government’s strategy for people with learning disabilities and/or ASD. We got that information and added data from a range of other sources, including:
Then we started looking at what it was telling us.
The first thing we noticed was the amounts of money that were being spent. In total in 2015/16 it was estimated that £ 477.4 million was spent on keeping approximately 2500 people with learning disabilities in hospital. Of those beds 1,170 of those places were provided by the NHS and 1290 or 52% of those places were provided by the independent sector. In 2010 the percentage of beds in the independent sector was 33% having risen from 20% in 2006. We estimate that in 2015/16 the value of the Inpatient Healthcare Market to the independent sector to be in the region of £ 284 million. Most of that provision operates on a for profit basis and our sons and daughters are its currency. On average a person who has been in hospital for 5 years will generate £950,000 in income for an independent sector organisation, although significantly higher levels of income are possible
We then went on to analyse the data in more detail and found that the proportion of people being kept in hospitals for areas was influenced by a number of factors, including Length of Stay and House Price Index. The influence of House Price Index in particular supported a theme that we had identified in a number of the Transforming Care Plans. These spoke of areas being “importers” or “exporters” of people with learning disabilities and/or ASD and our data indicates that inpatient rates are being influenced by the decisions of healthcare entrepreneurs to locate in areas where house prices are lower and that once there, the length of their stay in hospital will be influenced by the care infrastructure that is in place. In particular the numbers of people who are inpatients, the number of CQC registered settings and the number of Section 117/CHC packages of care. For those of you who don’t know, a Section 117 package of care is the support that has to put in place for somebody who has been detained under the Mental Health Act once they leave hospital, and Continuing Healthcare funding is provided to support people with ongoing health needs in their community.
The statistical relationship that we identified between packages of care and the length of time that people are kept in hospital pointed us toward something that families are repeatedly telling us, namely: the difficulties that they have in getting people to agree about who funds packages of support once their family member has been released from hospital. It has always been problematic but in 2013 the government changed the Responsible Commissioner Guidance on who is required to pay for Section 117 aftercare. This meant that the authority that was responsible for paying for aftercare would be the one in which they are registered with a GP. Whilst the government has since made changes to the Responsible Commissioner guidance, those changes are not retrospective and the experiences of our families indicate that putting together aftercare and getting people back remains an enormous problem.
We believe that the interplay between the public and private sectors has had an enormous impact on people’s ability to get home and has played an important role in the emerging development of what is effectively a trade in people.
These are the factors that we believe are contributing to this “trade”.
Lack of local infrastructure
The first is that a number of Local Authorities have failed to establish sufficient local infrastructure for people with learning disabilities and behaviour that challenges. This means that when a crisis happens, there is no local support available to keep them in their community.
The Decisions of Healthcare Entrepreneurs
When business people make decisions they make those decisions according to the needs of their business. So the existing independent sector provision and infrastructure is based on economic factors rather than clinical need or human rights.
An exportable liability
People with learning disabilities and/or ASD with behaviour that challenges become an “exportable liability” to the local authority in which they live. People are “exported” out of area because of a crisis and lack of local available care and because it saves them money.
Responsible Commissioner Guidance
The effect of the 2013-2016 Responsible Commissioner Guidance means that once registered with a GP in a remote authority people then become the remote authority’s liability, the home authority has therefore successfully “exported” their “liability”.
Once a person has moved into the independent sector they then become a source of income for the provider that has set up provision in the remote area. It is in the originating authority’s and the provider’s financial interests to sustain the individual in the remote authority far away from their families.
Behind all of the concerns about funding and the 7 day NHS, parts of the NHS have been undergoing significant change and transformation as private sector organisations come to play an increasingly important role in the delivery of services. It is clear to us that the full consequences of these changes have not been sufficiently thought through. And when combined with a failure on the part of Local Transforming Care Partnerships to have sufficient local infrastructure in place; a reluctance on the part of some “exporting” authorities to fund people’s return home; then the impact of this failure is having an enormous effect on people with learning disabilities and/or ASD across the country as well as their families. In fact:
"We think that the European Convention on Human Rights is not being followed. Mainly Article 5, the right to liberty and Article 8, the right to a private and family life. The right to a private and family life has been torn from many families in the fight for their loved one’s freedom."
A Trade in Care 2017 Easy Read Version.
This has to stop.
You can download the report here
 Throughout this article we use terms like “liability” and “commodity” when referring to people with learning disabilities and/or ASD, we apologise for any offence this will cause. We have done this because we feel it is the only way of making the argument and to illustrate what happens when people stop being seen as people.
Last year we started looking at how money and business was stopping people getting out of inpatient hospitals.
Working with Elaine James and Chris Hatton from Lancaster University, we wrote a report called a Trade in People.
We found that some areas did not have enough support in their area so they sometimes paid independent hospitals to look after people.
Often these hospitals are a long way away.
These hospitals can make a lot of money from treating somebody.
Some times it is hard for people to come home because of arguments about who should pay for their support at home.
People with learning disabilities and autism are being treated like things that can be exchanged for profit.
People have human rights. We think they are being ignored.
This has to stop.