I’m writing this in the context of last week’s #7daysofaction, just the latest stage in the campaign by families of people who have been detained in Assessment and Treatment Units. It follows the Panorma Programme about criminal abuse by staff at a private hospital, Winterbourne View; the #justiceforlb campaign after the death of Connor Sparrowhawk as a result of negligence by an NHS Trust; the revelation of appallingly low level of investigations of unexpected deaths amongst people with mental health difficulties and people with learning disabilities at the same NHS Trust; the continuing failure to provide enough community and family support to enable people with learning disabilities and/or autism to live at home - and so on, and so on.
This blogpost is my attempt, amongst that of many other people, to understand - and draw attention to - how we have got to a situation where people can be treated so appallingly, can lose their lives, and yet very rarely is anyone held accountable….and the same things keep happening.
Twenty five years ago, a small book was published called ‘A Fit Person to Be Removed: Personal Accounts of Life in a Mental Deficiency Institution’. Maggie Potts and Rebecca Fido interviewed 17 people, who had been ‘certified’ under the 1913 Mental Deficiency Act as ‘feeble minded’, ‘idiots’, ‘imbeciles’ or ‘morally defective’. They had spent most of their lives in an institution the authors called ‘The Park’ until leaving as a result of changes in policy during the 1970s and 1980s. A foreword to the book expressed the hope that enabling these experiences to be told “may prevent society from repeating the mistakes of previous care systems”.
Institutions like ‘The Park’ had steadily increased in number from about 400 in the mid-nineteenth century to almost 2000 by 1914. Their growth was fuelled by a set of values associated with the increase in industrialisation - values which arose from worries about people who were “unproductive” and concerns that society “should be protected from the evils of mental deficiency”. Those who took a more benevolent approach justified the deprivation of liberty by stressing that “such people” required “care and protection” (these quotes are all from ‘A fit person to be removed’).
However, from the Second World War onwards there were increasing challenges to this kind of value system. Awareness of what a denial of common humanity had led to in Nazi Germany created the climate for the UN Convention on Human Rights. Gradually, this recognition of fundamental rights which should be accorded to all human beings helped to influence the way disabled people, including people with learning disabilities/difficulties were responded to. Gradually, the right to life, to freedom of expression, to make choices, to receive education, the right to a family life were recognised for people who were previously considered as having no place in, and being of no value to, our society.
By the early years of this century, we had government policies which - on paper at least - promised to provide “new opportunities for children and adults with learning disabilities and their families to live full and independent lives as part of their local communities”. Most importantly we had some organisations, often started by families, which pioneered ways of enabling people with learning disabilities to live ‘ordinary lives’.
And finally, 10 years ago, we had the UN Convention on the Rights of People with Disabilities which not only upholds disabled people's basic human rights but also includes Article 19, Living Independently and Being Included in the Community:
States Parties to the present Convention recognise the equal right of all persons with disabilities to live in the community, with choices equal to others, and shall take effective and appropriate measures to facilitate full enjoyment by persons with disabilities of this right and their full inclusion and participation in the community, including by ensuring that:
a) Persons with disabilities have the opportunity to choose their place of residence and where and with whom they live on an equal basis with others and are not obliged to live in a particular living arrangement;
b) Persons with disabilities have access to a range of in-home, residential and other community support services, including personal assistance necessary to support living and inclusion in the community, and to prevent isolation or segregation from the community;
c) Community services and facilities for the general population are available on an equal basis to persons with disabilities and are responsive to their needs.
Over the last 20 or 30 years, therefore, we have made some progress in recognising the human rights of people with learning difficulties/disabilities - not enough progress but some people certainly have had access to an ‘ordinary life’. So why does it feel as if we’re going backwards?
One factor, amongst others, is undoubtedly what has happened to public services in the era of what philosopher Michael Sandel has described as “the age of market triumphalism”.
Whereas after the second World War there was increasing understanding of the moral meaning of certain public goods, in the last few decades this has been more and more curtailed by attempts to use ‘market forces’ to deliver the things that previously had been recognised as being of value not only to individuals but also to the wider community. Now, it is contended, good choices are made and good services delivered through self-interest and financial incentives; and there is little or no moral meaning - for either the individual or the community - placed on what is being delivered.
In the case of social care, the 1990 NHS and Community Care Act ushered in the ‘purchaser/provider split’ and outsourcing of social care services. Now after more than 20 years of privatisation, it is the investment and management decisions of profit-making organisations which predominantly determine the nature and the quality of many care services, rather than moral or political decisions about what kind of lives we want for ourselves and our communities. Care has become commodified and, if a profit cannot be made, organisations cease to trade in it. This has led to the current crisis in the provision of domiciliary and residential care because of the significant reductions in local authority social care budgets - our collective failure to value social care enough to provide sufficient resources.
In the case of healthcare, the Health and Social Care Act of 2012 replaced the NHS ‘internal market’ established by previous Labour and Conservative governments with a new level of marketisation via the role of Clinical Commissioning Groups. So far this was failed to yield the same outsourcing opportunities of the social care reforms of the 1990s - as was vividly illustrated by a Radio 4 ‘File on 4’ programme recently. Neither not-for-profit or for-profit organisations have found it easy to deliver the required outcomes within the restricted budgets made available and the ‘marketisation’ of NHS services is increasingly being questioned. As Chris Ham, from the King’s Fund, told Radio 4:
There’s no good empirical evidence that having competition within the NHS drives down costs. In fact, there’s some pretty good evidence it can increase costs, all the transaction costs associated with tendering, writing contracts, monitoring contracts.
However, there is one area of NHS funded services which seems to be providing lucrative, and growing, opportunities for the private sector: in-patient mental health and specialist learning disability services.
As Chris Hatton points out, there has been a shift in the last 10 years of NHS inpatient provision for people with learning disabilities to what is euphemistically called the ‘independent sector’:
….the number of people with learning disabilities in NHS inpatient services dropped, from 3,669 people in 2006 to 1,650 people in 2015. In contrast, the number of people with learning disabilities in independent sector NHS services increased, from 940 people in 2006 to 1,350 people in 2015. In 2006, 20% of people were in independent sector services; in 2015 this had increased to 45%.
Companies running mental health and learning disability in-patient provision have benefited from both the 2012 health reforms and also reductions in NHS services. As the Financial Times reported on 7th February this year “The UK [private mental health] industry is expected to benefit from cuts in state-funded services”. They went on to say:
Mental healthcare has been one of the biggest casualties of the government’s cost-cutting programme — but this has in turn has benefited the private sector. Since 2010, the number of in-house beds provided by the NHS for people with mental health issues or learning disabilities has fallen by 23 per cent. But the number of beds provided by the private sector has grown by 8 per cent, according to LaingBuisson, the healthcare consultancy. The sector remains dependent on NHS fees, which account for 87 per cent of revenues, with the rest paid for by patients or private medical insurance.
However, the ‘marketisation’ of healthcare has not just created investment opportunities for private companies, it has also had an impact on services which remain in the public sector. The weakening of accountability which is associated with the increased role of private organisations in in-patient provision for people with learning disabilities and mental health needs is mirrored by a lessening of accountability within NHS provision. Many people warned that the structural changes ushered in by the Health and Social Care Act 2012 would lead to a loss of accountability. Private sector organisations may be driven by the need to make profit and to be accountable to shareholders rather than to the public or to those they serve but, at the same time, there is no democratic accountability of Clinical Commissioning Groups and, as the Kings Fund warned, the accountability of NHS trusts depends on (what has turned out to be inadequate) regulation and ‘internal governance’ (which has blatantly failed in the case of organisations such as Southern Health).
Moreover, the context in which CCGs are operating means that, instead of long-term planning for and investing in services to meet local and national needs, resources are allocated on the basis of trying to match expressed need with what is available in the ‘marketplace’ of NHS and private providers. This means that commissioners are more and more restricted to responding to immediate demand with inadequate resources and a restricted choice of suppliers, rather than planning for and investing in services so that when the need arises there are good quality, sufficient and appropriate services to meet it. It is this which accounts for people being placed many miles away from their home and/or often in a service which is not suited to their needs.
Marketisation of public services results in individuals and their needs being commodified - a source of income to public and private sector organisations alike. The moral values which attach to what makes life good for individuals, their families and the wider community are of little or no relevance in a market system.
This moral vacuum is a fertile breeding ground for some very worrying attitudes. According to some, disabled and older people are burdens being shouldered by an increasingly reluctant society. In an echo of times gone by, our social worth is determined by whether we are ‘productive’, by which is meant whether we can engage in waged labour. Government policy and rhetoric positively encourages the idea that waged labour is the only way to achieve a good quality of life. Self-determination, control over our lives, is only to be gained if we do not need any support - because to need support to go about our daily lives is to be ‘dependent’, ‘vulnerable’, in other words lacking agency.
At the same time, if our need for support is recognised we are sources of revenue not only for private companies but also for public and ‘third sector’ organisations whose funding is now determined by the ‘marketisation’ of resource allocation.
This inevitably leads to dehumanisation in the way services are delivered. Procedures are developed which are more about the needs of the organisation than the person they serve. As Mariana Fotaki wrote:
We see the effects of these changes in the NHS: imposing a market ethos on health care staff, and a focus on indicators and targets, has led to the distortion of care. Studies have shown the long term reality of the suffering, dependence and vulnerability of mentally ill patients is disavowed, and the complexities of managing those in psychological distress are systematically evaded. It is replaced by work intensification and demands on the overworked front line staff to show more compassion.
Attitudes are nurtured which lead to someone in desperate need of support being described as ‘toxic to the system’. That word ‘toxic’ was used by the same organisation - Southern Health NHS Foundation Trust - to describe Sara Ryan, the bereaved mother of Connor Sparrowhawk, who an inquest found had died a preventable death due to their negligence. It’s a revealing use of language in both these situations. Toxic means poisonous, deadly, harmful: a young man in extreme need of support, whose life is in danger, and a mother whose advocacy is fuelled by love for her son, are considered to be harmful to an organisation who has commodified those who they are paid to support.
A market ethos has pervaded health and social care services, reflected in the way that a concern for ‘efficiency’ and ‘value for money’ (reducing costs) has crowded out the importance of personal interactions and relationships between service provider and service user. One result, in the context of people with learning disabilities in ATUs, is a failure to pay attention to how people communicate (including a failure to listen to family members and friends) and a labelling of distress as ‘challenging’ and ‘difficult’ behaviour which needs to be ‘modified’.
When overworked, under-qualified, and under-supported front-line staff predictably make mistakes, they are exhorted to show more compassion by government while the organisations concerned promise, yet again, to ‘learn the lessons’.
Is it any wonder that some people are worried that we may be moving back to where we started in terms of people who are not ‘productive’ being ‘warehoused’ in institutions? This time, however, such institutionalisation is identified as a profit-making activity for private companies while investment in community support and relationships - which would prevent such incarceration - fails to materialise, and the accountability of the public sector to those they serve is undermined.
But, there are lights shining in this darkness. Out of the #justiceforlb campaign has come a focus on what we should all feel ashamed of: the continued incarceration of people in at best inappropriate, at worst, cruel and inhumane, conditions often many miles away from their family and friends. #7daysofaction told seven stories of people who have been failed not only by particular professionals and services, but also by us collectively.
We have to decide, as a society, whether we want to go back to a version of the early 1900s, “repeating the mistakes of previous care systems” (as the authors of ‘A Fit Person to be Removed’ put it) or whether we want to design, resource and deliver support which fulfils the vision encapsulated in Article 19 of the Convention on the Rights of Persons with Disabilities, recognising the equal right of all disabled people “to live in the community, with choices equal to others” and facilitating “full enjoyment…of this right and their full inclusion and participation in the community”.