If it looks like a duck... Winterbourne View and institutions redux

If it looks like a duck… Winterbourne View and institutions redux

“If it looks like a duck, and quacks like a duck, we have at least to consider the possibility that we have a small aquatic bird of the family anatidae on our hands.” (Douglas Adams; Dirk Gently’s Holistic Detective Agency).

When you think of an institution, whether for people with learning disabilities or any other group of people, what image comes into your mind? For me, it’s the prototype of a spooky, Victorian set of large barracks-like buildings (with a chapel, of course) in sweeping, unkempt grounds. And it’s empty of course, in the slightly Marie Celeste way captured so well in @AbandonedPics.

Institutions have been on my mind a lot this year.

It’s 20 years since my first substantial research job, conducting a sort of systematic review (before we knew what systematic reviews were) of the evidence around the impact of deinstitutionalisation on the lives of people with learning disabilities. The evidence can be simply summed up – in almost every way, any other type of residential setting was better for people with learning disabilities than an institution. In fact, our argument then, as now, is institutions were so bad that comparing people’s experiences in other places to them was not the comparison to make, and that instead we should be judging people’s living arrangements against commonly held standards of decency, human rights and citizenship. Eric Emerson and I called the book ‘Moving Out’.

I was at a conference in Istanbul in May, where the Turkish government are pouring political will, energy (and money) into an institutional closure programme, with support from the Mental Health Foundation, Foundation for People with Learning Disabilities and the National Development Team for Inclusion, amongst others. As I was watching the presentations, I was firstly struck by the fact that Turkey didn’t seem to have that many institutions to close (and also in some areas had in effect a functioning direct payment process for families living with an adult with learning disabilities), and secondly that the institutional closure programme seemed to be going through similar stages to other countries (for example building specialist residential care facilities rather than going straight to supported living and beyond). I thought about these stages in progressive terms – apart from the prophets and seers who see the desired end-point clearly (and therefore get frustrated with everyone else), perhaps the rest of society has to go through a series of stages (almost in a Vygotskian ‘zone of proximal development’ way) of essentially broadening/deepening imagination about the rights and capacities of people with learning disabilities.

I was at another conference in Nijmegen in September, ostensibly about reducing the health inequalities experienced by people with learning disabilities, where there were a lot of trainee intellectual disability physicians (there is such a profession in the Netherlands) working in institutions. Even if they didn’t approve of institutions and had ambitions for an ‘ordinary life’ for the people with learning disabilities currently living within them, they described them as nice places for people with learning disabilities to live – physically pleasant settings, safe, with a sense of belonging for people and with activities for people to do. People with learning disabilities have serious problems to contend with in the UK, I thought, but at least we’ve moved beyond that.

Looking at this written down, three words come to mind; smug, complacent and wrong.

Wrong because in England, today, the institutions are not empty. They might not be big Victorian semi-rural piles any more (these seem to have become Trust headquarters, executive flats or housing estates). Instead they are usually smaller - either bland, newish-build complexes hidden away near to ring roads or in industrial estates, or converted houses found along little-used country lanes. They don’t call themselves institutions, they call themselves specialist residential services of various types (Assessment and Treatment Units, for example), and they can be provided by the NHS or the private sector. The latest census of people with learning disabilities, published by the Health and Social Care Information Centre http://www.hscic.gov.uk/pubs/ldcensusrep1213, reported that 3,250 adults with learning disabilities in England were inpatients in such services, virtually no change from the 3,376 adults in similar services in 2010.

Can we really call these places institutions? Erving Goffman, the sociologist nonpareil of institutions, in his 1961 book Asylums defined a total institution as “A place of residence and work where a large number of like-situated individuals, cut off from wider society for an appreciable period of time, together lead an enclosed, formally administered round of life.” Features of institutional routines include a complete breakdown of usual distinctions between work, play and sleep, so that all these things happen under one roof under a single authority; block treatment of residents; routines which act to depersonalise residents; rigid institutional routines; and maintaining a social distance between residents and staff. Even where restrictions on a person’s liberty may be necessary (e.g. in high secure services) this does not mean that the person has to live in a total institution.

For many of the inpatient units covered by the census, there are clues that many people with learning disabilities are likely to be living in what by Goffman’s definition are total institutions. According to the learning disability census, 60% of people with learning disabilities had been an inpatient in their current residence for a year or more, with 17.6% of people being resident for 5 years or more. For comparison, the average length of stay for people with mental health problems in NHS-funded (including independent sector) specialist adult mental health inpatient services was 64 days (2011/12) https://catalogue.ic.nhs.uk/publications/mental-health/services/men-hth-bul-1213/mhb-1213-ann-rep.pdf.

The census also reports that 18.2% of people with learning disabilities lived more than 100km from their notional residential postcode, and that for over a quarter of residents (28.0%) the provider organisation couldn’t even tell the census what the notional residential postcode was.

And these census figures don’t even include children (in 2011, 792 children with learning disabilities aged 4-15 were recorded as boarders at some form of residential special school http://www.improvinghealthandlives.org.uk/gsf.php5?f=17280&fv=18581) or adults in other forms of nursing care (2,035 adults with learning disabilities in 2012 http://www.improvinghealthandlives.org.uk/gsf.php5?f=17280&fv=18581) or residential care (34,275 adults with learning disabilities in 2012 http://www.improvinghealthandlives.org.uk/gsf.php5?f=17280&fv=18581). An unknown proportion of these people are also likely to be living in places that feel like total institutions to the people living in them.

My progressive view of hospital closure as a series of stages is/was also deeply complacent. Away from the statistics, it’s important to remember that the horrors of Winterbourne View were only one example that happened to come to light in a way that (fleetingly) caught the public attention. The behaviour of staff in Winterbourne View was strikingly similar to behaviours reported in the inquiries into Normansfield and Ely hospitals in the 1960s and 1970s, and since Winterbourne View other places have come to light where people continue to be abused and people die. We cannot claim to be post-Winterbourne View or post-institution. And it isn’t as if we can claim to have left behind ways of thinking about people with learning disabilities used to justify institutional practices. Alongside discourses on human rights and self-determination for/by people with learning disabilities, there are still powerful, parallel discourses on segregated services that are similar to those voiced by the Dutch intellectual disability physicians I mentioned earlier (which is where the smug comes in – who are we to tell anyone how it’s done, whatever the ‘it’ is…).

So why do these institutions by any other name continue to exist, and indeed in some respects thrive, as new units are being planned and built as I write? And why do staff behave as they do where abuse and neglect occur? It’s not as if we don’t know any better. Jim Mansell and a very talented team in Kent demonstrated in the 1980s that it was possible for people with learning disabilities and the types of challenges often used by specialist residential services to justify their existence to live fulfilling lives in the community, with the right, individualised support (see the revised Mansell report; 2007) http://webarchive.nationalarchives.gov.uk/20130107105354/http://www.dh.gov.uk/prod_consum_dh/groups/dh_digitalassets/@dh/@en/documents/digitalasset/dh_080128.pdf And a SCIE knowledge review, published in 2008, set out very clearly the evidence on the consequences of out-of-area placements and what can be done to provide better, local support to people with learning disabilities   http://www.scie.org.uk/publications/knowledgereviews/kr20.asp

It’s not even that these specialist residential services are cheaper - they are often more expensive than the cost of designing local, individualised supports.

In the reaction to the learning disability census figures and the one-year on Winterbourne View report, along with the anger, are attempts to understand why we are in this position. Trying to understand feels to me like peeling away the layers of an onion; there are different levels of explanation with no one core, ‘real’ explanation to be revealed – they are all important. With no claims to be comprehensive, some of these levels of explanation include:

Understanding the behaviour of staff. In these highly staffed settings, abuse and neglect cannot be put down to staff shortages. A long tradition of applied behavioural psychology has attempted to understand and shape staff behaviour in terms of contingencies (what is reinforcing and what is aversive for staff), but as Richard Hastings explains in his excellent blog it is also important to understand and work with the emotions and attitudes of staff engaged in working with people with learning disabilities http://profhastings.blogspot.co.uk/2013/05/winterbourne-view-will-happen-again-and.html

Understanding the organisational context. Staff behaviour doesn’t happen in isolation, and the organisational contexts staff are working in obviously have a major impact on how staff behave. There is substantial evidence about the organisational factors that are associated with staff burnout, such as working long hours in a job perceived to be low status, feeling trapped in the job, not being sure what the job is supposed to be and not getting support from other people. Organisational culture and leadership are obviously also crucial here, particularly in terms of openness to the outside world.

The physical environment of services. Although service providers often put a lot of emphasis on the purpose-built nature of their residential services, the effective ‘technologies’ for helping people with learning disabilities with various challenges to lead fulfilling lives are all about people, relationships and practices, not about buildings. If anything, the evidence suggests that the more a person with learning disabilities lives in a real home (small, living in neighbourhoods where other people live, with people they choose to live with, homely) the more likely it is that that person will live a fulfilled life.

The behaviour of service providers. It is clear that some providers of these services (whether independent sector or NHS) see themselves as responding to demand, are expansionist in their ambitions, and are certainly not in the business of putting themselves out of business. It is also clear that some providers do not have the leadership, skills, values and openness to the outside world required.

The behaviour of commissioners. Time after time, commissioners have been identified as a major reason for people with learning disabilities being placed in these services, for interlocking reasons. First, there is often a failure of commissioners to develop and commission the local, individualised, community-based services recognised as being most cost-effective. Second, commissioners often don’t have good information about the local population of people with learning disabilities they are serving, meaning that the needs of people with learning disabilities and their families often have to reach crisis point before commissioners take notice. Third, commissioners then commission reactively in response to individual crises, often on the basis of which specialist service has a place available at short notice. Fourth, commissioners fail to effectively monitor people who end up in these specialist services (either as individuals or collectively to help strategic thinking), resulting in a failure to develop effective local services for people to return to. At a time when commissioning is in upheaval, commissioning expertise concerning people with learning disabilities is in short supply, and services are facing severe resource constraints, this seems likely to get worse before it gets better.

Policy. The long hospital closure process in the UK had a number of policy aspects that are worth thinking about in the current context. First, the location of the hospitals in the NHS meant that there was a clear command-and-control structure, with politicians nominally at the top which, for all its faults, resulted in clear policy levers to be used. Second, there was money attached to make the local acceptance of people moving out of institutions financially attractive to local authorities and NHS services. Third, there was a reasonably clear sequential focus: stopping admissions, getting children out, then getting adults out. Fourth, there was a clear focus on institutional closure as the policy aim (with the result that community services needed to be developed for the people moving out), rather than starting from the point of view of developing community services first for people in hospitals to move into later. Finally, there was a recognition that it would take time. In all these terms, the environment for policy-makers in 2013 is far more difficult.

Beyond these layers of the onion, which are presumably all amenable to change, there are two further layers that I’ve been brooding on. These are about the broader position of people with learning disabilities within our society which make institutions possible, and I don’t really know what I think about them and how pessimistic I should be on the basis of them.

The first of these layers is the argument put forward by the historian Andrew Scull and others that the rise in institutions for people with learning disabilities (among other groups) in Victorian England was the result of rapid industrialisation and urbanisation. These changes resulted in people with learning disabilities becoming more ‘obtrusive’ (another Goffman term), being less likely to be economically productive in industrial waged economies relying on particular skills (e.g. reading, writing, numeracy), and in being more noticeable as a ‘problem’ in densely populated urban environments. In our society, it doesn’t take much to be obtrusive – just try walking down a city street continuously smiling at people and you’ll see what I mean. If the remaining institutions are a solution to this obtrusiveness, in terms of removing people from sight, then without changing the way that societies relate to people with learning disabilities the ecological niche currently occupied by institutions are likely to be filled by something similar.

The final layer relates to the work of Wolf Wolfensberger, who at times seemed close to a view that there is an almost collective unconscious view of societies that people with learning disabilities are, in @sarasiobhan’s words, ‘not fully human’. Is this true? If it’s true, can we change it?

A common reaction to the one-year on Winterbourne View report seems to be disappointment and anger, but also a lack of surprise. I wonder if any other people feel like I do, a sense of complicity. There was a remarkable generation of people who felt it their mission to close institutions for people with learning disabilities, who are nearing retirement age now. Perhaps my generation wanted to feel that this mission was complete, and we looked the other way while going on to other missions and other issues. Yet this mission is far from complete. Maybe the ultimate measure of its success is what happens to these 3,250 people, yes, but also what happens to all the young people with learning disabilities coming through, so that no-one would think institutions (whatever their new labels) are ever the solution. Can we get there? I genuinely don’t know.

Dancing cheek to cheek: Public health and personalisation

Dancing cheek to cheek: A public health perspective on personalisation

I don’t know if this is a common experience, but I’ve got involved in most of the best things in my life without really understanding what I was getting myself into. You’ll be pleased to know that I won’t be writing about most of them here, but to my surprise one of them has been getting involved in public health. I’ve been a researcher for many years working mainly with people with learning disabilities, which got me into working with In Control and many others on trying to track people’s experiences of personalisation in England. But the work on personalisation isn’t my day job, so to speak. Most of my working life is now spent working in a public health observatory concerned with people with learning disabilities (this is where I shamelessly plug Improving Health and Lives http://www.improvinghealthandlives.org.uk/).

Recently, it seems to me that personalisation and public health have been like two teenagers at a school disco – they’ve noticed each other, they like what they see, but they don’t really know each other and it’s hard to know what they’re going to say to each other, let alone how they’re going to get to the point of dancing together. There is an increasing recognition that personalisation has to be a community enterprise if it is to become embedded and affordable at scale, and also that personalisation contains useful components way beyond the population of people currently eligible for personal budgets (whether education, social care, health, or any combination of the three). Alex Fox’s blog on local area co-ordination (http://alexfoxblog.wordpress.com/2013/11/15/local-area-coordination-a-different-starting-point/) is a particularly good recent example of broadening thinking in this respect. On the public health side, as much of the public health capacity in England moves to local authorities in the shape of Health and Wellbeing Boards, there seems to be a renewed appetite for moving public health into new and more collaborative terrain.

Although my dubious metaphor casts me in the role of the go-between between the two parties at the school disco (“No, no, they really do like you, just go over there and talk to them”), this blog outlines some of the things I’ve been learning about a public health perspective, and what utility this perspective might have for the personalisation project.

What is health?

Although this is probably obvious to everyone else, it took me a while to appreciate just how expansively health is defined in the public health world. The original World Health Organization statement ‘Health is a state of complete physical, mental, and social well-being and not merely the absence of disease or infirmity’ (From the Preamble to the Constitution of the World Health Organization which entered into force on 7 April 1948) is both radical and, it has to be said, problematic in a whole host of ways (not least that dangling word infirmity at the end there). What it does do, though, is put into play the idea that public health should be concerned about (and responsible for?) issues such as self-determination as an important aspect of complete physical, mental, and social well-being. It also sets ambitious goals about what states of health we should be aspiring to. Taken together, this way of thinking about health should have great resonance for an ambitious personalisation agenda.

What are health inequalities?

It also took me a while to understand how major strands of public health are focused on health inequalities, and what the word ‘inequalities’ means in a public health context. A widely used definition of health inequalities has been provided by Margaret Whitehead, in referring to differences in health status between social groups ‘which are unnecessary and avoidable but, in addition, are also considered unfair and unjust’ (Whitehead, 1992). Allied to the expansive view of health, my guess is that many people involved in personalisation could sign up to the view that most people using social care (and eligible for personal health budgets too) are experiencing states some way short of complete physical, mental, and social well-being compared to much of the rest of the population, that these differences in health states are mostly or entirely unnecessary and avoidable, unfair and unjust, and that personalisation could be a vehicle to help these groups reduce (or eliminate?) these inequalities.

For me, this definition of health inequalities poses some challenges to the personalisation world, which in its operational details has often not been clear about its view on inequalities (how would you know if equality had been achieved, on what dimensions, between which groups, for example?). I think it also helps to clarify some of the terrain on which debate about personalisation occurs, for example: What states of health are legitimate areas of intervention (in the broadest sense) by public services? Where there are differences in health status (particularly when broadly defined) between groups, to what extent are these differences seen as unnecessary and avoidable or not? Also, are these differences seen as unfair and unjust or not? And finally, is reducing inequality a legitimate function of public services anyway?

However, personalisation also poses a challenge to mainstream public health. Given that I work with people with learning disabilities, I have been continually struck by how little attention mainstream public health pays to disability. Inequalities are often framed in terms of socio-economic position, gender and/or ethnicity, for example, but the health inequalities experienced by disabled people are typically absent from public health discourse. Evaluations of public health interventions (from smoking bans through Sure Start through place-based programmes such as the New Deal for Communities) rarely consider their success or otherwise in including disabled people and in ensuring that they reduce inequalities between disabled people and other groups. Working with Health and Wellbeing Boards through local authorities, personalisation can bring these issues front and centre to public health thinking and action.

What are the causes of health inequalities?

If we accept that health inequalities are unnecessary and avoidable, unfair and unjust, then it is our responsibility to understand how these inequalities happen and to do something about them. A major strand of public health work has been involved in trying to understand what Sir Michael Marmot calls ‘The causes of the causes’. We know that smoking causes lung cancer, but what causes people in some groups to be more likely to take up smoking and less likely to stop? Here we’re in the realm of the social determinants of health and health inequalities, which are neatly summarised in the rainbow of health inequalities (Dahgren and Whitehead, 1991, see below). The rainbow has been developed as a very general representation of the social determinants of health inequalities both within societies and across societies on a global scale.

In my view there is much in this representation of health inequalities for those working in the personalisation world to chew on, particularly those engaging with community and place-based approaches. Most obviously from a UK perspective, social care is not represented in this diagram, presumably because it is not a global phenomenon and the functions taken up by social care in the UK are either carried out by other elements of societies in other places or are maybe not carried out at all. Although this can seem like a threatening absence, the relatively minor place also allocated to health services carries the broader message that achieving health equity goes far beyond fixing service systems.

The rainbow of social determinants of health inequalities (Dahlgren & Whitehead, 1991)

Allied to this, the individual factors that people bring with them are at the centre of the rainbow, but the impact of these factors on people’s health is mediated through a whole host of nested social factors, all of which we can do something about. For example, what do personalised support plans say about promoting healthy lifestyles? Are factors such as nutrition, physical activity, smoking, alcohol and drug intake, healthy sleeping patterns and so on an integral part of the discussion when it comes to support planning? And if they are, how can they be supported by the social and community networks that surround people – are people’s PAs smokers, for example, and do they smoke when they’re out with a person; do people have friends and family who want to join in with physical activities? And then moving outwards through the rainbow to people’s living and working conditions, do people’s environments support good health? People may have the motivation and the networks encouraging them to eat a healthy diet, but if healthy, fresh food is not available at the local shop and fresh food is only obtainable by a car trip or internet shopping, or if cooking facilities in the person’s home are not accessible, a healthy diet as part of a healthy life is going to be difficult to achieve. Poor housing, unemployment and insecure and meaningless work environments are all likely to contribute to poor health. And finally, at the outer layer of the rainbow, are broader social and economic conditions. Poverty determines so much about a person’s life (where people live, what they eat, what they are able to do with their time, social relationships), and hostile cultural conditions (for example the harassment and crime that many disabled people experience) are also powerful forces determining and reinforcing health inequalities.

My thinking is that something like the rainbow of health inequalities could be very useful in thinking through what a personalisation agenda means both in broad policy terms and potentially for individuals or communities. This could bring some real clarity for the personalisation project in identifying what the priorities are for dealing with health inequalities, and also what the levers are for addressing these priorities. Much of the exciting work around community building and local area co-ordination could easily form part of such a project, and potentially provide an ambitious yet boundaried set of priorities that Health and Wellbeing Boards would recognise as priorities for them too.

 What can we do about health inequalities?

Understanding the causes of health inequalities is one thing, but doing something about them is quite another. When thinking about where to put our energies in this respect, one seemingly simple diagram has really helped me. This is the Health Impact Pyramid (Frieden, 2010). This proposes that there are five levels of intervention designed to improve people’s health; 1) Counselling and education; 2) Clinical interventions; 3) Long-lasting protective interventions; 4) Changing the context to make individuals’ default decisions healthy; 5) Socio-economic factors.

The health impact pyramid (Frieden, 2010)

According to Frieden, there are two reasons why this is a pyramid. First, as you go further up the pyramid, the intervention requires more active participation, additional effort and informed consent from the person on the receiving end. Second, as you go further up the pyramid the interventions become more expensive, intensive and focused on fewer and fewer people.

So in public health terms, there are questions about the extent to which counselling and education interventions (such as intensive diet, exercise and weight loss programmes) are effective in improving population health, as only a relatively small proportion of people take them up and the additional effort involved makes them not sustainable for most people. Similarly, relatively expensive clinical interventions typically only occur once people already have health problems. Long-lasting protective interventions (such as vaccination and screening programmes) are lower cost, require less effort from people on the receiving end, and may be relatively effective at preventing the onset of some health problems for almost entire populations.

The bottom two levels to me are the most interesting, as they move beyond any sort of health service to thinking about how communities, environments and societies can be arranged to promote the health of populations, without people having to actively sign up to them. Some of the biggest advances in public health (for example, clean water, or toilets, as I was reminded by Toilet Day recently) have been at this level, where the default position in the UK (having clean water through the tap) is the healthy one and the unhealthy option (getting your water from a polluted river) would require a lot more effort. There is considerable work in public health around trying to arrange environments to make people’s default decisions healthier (by, for example, discouraging car use, encouraging physical activity, making street environments safer at night etc), although the evidence base for their effectiveness is small and there has been little effort to consider disabled people in the design and evaluation of these environments. The final, socio-economic level, has great potential but as Frieden acknowledges can be the most controversial as interventions at this level are highly politicised, often with little consensus, and can be open to charges that they are not within the legitimate realm of public health activity.

Can the personalisation project learn anything from the health impact pyramid? I think it can, and recent directions in moving towards community approaches suggest that the lessons are already being learned. For example, the full-on personalisation approach, confined to people already eligible for social care (and for personal health budgets?), might be seen as analogous to a public health intervention somewhere near the top of the pyramid – it’s intensive, applied to a relatively small proportion of people in population terms, and requires active additional engagement and effort from the people involved.

Are there problems if this becomes the exclusive focus of the personalisation project? Well, there are some that spring to mind. First, it results in a focus on ‘downstream’ rather than ‘upstream’ interventions (in other words, it concentrates on trying to fish people out of the river rather than trying to stop people falling in the river in the first place). Second, it’s operating on a terrain (who is ‘eligible’ for services) set by others and that sets up divisions between people (it’s not fair that they get that personalisation thing when I have to pay for support myself without any help in planning what I want). Third, it can start with a focus on services and tries to encourage people to think beyond services, rather than starting from the viewpoint of what people want from their lives and then thinking if and how services are part of the answer. Fourth, the additional effort required from people and their circles of support is felt by some people to be burdensome, which may reduce its sustainability for some people. Finally, in this full-on form it’s never going to be scalable to entire populations and communities.

For me, this is where the community focus of the personalisation project becomes really exciting. The ‘full-on’ version is absolutely necessary for many people, but are there aspects of a personalisation approach that are the equivalent of a population vaccination or screening programme, or that work to help communities become more inclusive and mutually supportive such that people don’t end up so isolated and in environments that are more likely to result in crises for them. And, can personalisation speak to socioeconomic factors – most obviously in terms of housing, neighbourhood quality and employment, for example?

All of the above community-based initiatives are exactly what Health and Wellbeing Boards should be interested in, particularly with the potential within local authority settings to knit together communities in ways far beyond ‘services’. 

I hope this blog has shown some of the ways in which personalisation and public health can both challenge each other and help each other, to the potential benefit of whole communities. These two diagrams might be useful tools for the personalisation project to think through what it wants to do and how it wants to do it, while explicitly acknowledging a social justice agenda and making its activity intelligible to public health. Just dance together, you know you want to…

References

Dahlgren, G., & Whitehead, M. (1991/2007). Policies and strategies to promote social equity in health. Background document to WHO - Strategy paper for Europe (http://www.framtidsstudier.se/wp-content/uploads/2011/01/20080109110739filmZ8UVQv2wQFShMRF6cuT.pdf). Stockhome: Institutet för Framtidsstudier

Frieden, T. R. (2010). A framework for public health action: The health impact pyramid. American Journal of Public Health, 100(4), 6.

Whitehead, M. (1992). The concepts and principles of equity and health. International Journal of Health Services, 22, 429–445.

Fight The Power? Personalisation and power in England

Fight The Power? Personalisation and power in England

Chris Hatton

This is my first tentative foray into blogging, and as an academic who generally likes to talk about data and is wary of too much theoretical abstraction this is a weird first blog for me to write. It has been prompted by a question posed by Martin Routledge (currently Head of Operations for In Control) on Twitter, which went as follows (I’ve added some vowels…):

“Reflecting that we are good about talking about personalisation, less willing to accept ways of actually transferring power to people – why? Institutional history of services? Risk averse organisations? Interests of commissioners, providers, staff not same as people using?”

I’ve worked with In Control for over a decade on a series of tools to evaluate the impact of personalisation on people using self-directed support and family members, and variants of this question (“Why do powerful people find it so hard to give power away?”) have never been far from my mind. However, I’ve recently been wondering if this is the right question, and if the very fact of asking the question in this way sets up as adversaries people who might otherwise be allies.

As a minor detour, for the past couple of years I’ve been a PhD supervisor for Dennis Johnson, a retired paediatric neurosurgeon and creator of a paediatric palliative care service in the hospital near where he lives in the USA. For his PhD, Dennis spent some months in Romania, closely investigating a paediatric palliative care service identified as a ‘beacon’ of good care in a country that was, to put it mildly, not conducive to the provision of good palliative care support. Dennis’s thesis (which passed last week – many congratulations, Dennis!) contained an eloquent description of the features that made the service a beacon in difficult circumstances, but it also contained an analysis of how the service had managed to negotiate its way round the hostile power structures that existed in Romania for this type of service.

Rather than seeing power as a property of certain individuals or institutions, Dennis introduced me to a set of dictums formulated by Michel Foucault, the French philosopher with an abiding interest in the exercise and effects of power throughout societies. One interest of Foucault’s was in how challenges to patterns of established power or authority have historically been successful, and he came up with 6 common features of such successful challenges. Given the formulation of the personalisation project in England as a challenge to established structures of power and authority in social policy and service provision, I thought it might be useful to see to what extent these 6 dictums apply to the development of personalisation in England, and whether there are useful lessons to be learned for how (or if?) personalisation can develop into a meaningful reality for everyone.

So, here goes…

1)     Avow ‘transversality' or transnational citizenship.

Foucault’s first dictum suggests that ideas that change the world do exactly that (at least partially) – they are thought of as international and beyond a certain point inevitable and part of the common sense architecture of how we think. As Sir Charles Geoffrey Vickers in 1958 wrote (in relation to public health) “The landmarks of political, economic and social history are the moment when some condition passed from the category of the given into the category of the intolerable”.

In terms of what Foucault’s first dictum might mean for personalisation in the UK, my question would be to what extent personalisation embodies broader changes in international expectations about what is acceptable and unacceptable in the way societies support all their citizens. For good reasons (see below), the personalisation project in the UK has largely focused on the mechanics of implementing personalisation within existing legal, policy and service frameworks. However, there are at least three risks entailed in such a focus, and there may be advantages in placing more public emphasis on the alignment of personalisation within broader movements of ideas.

The first risk is that the focus on the mechanics of personalisation leads to the perception that personalisation is an end in itself, rather than a range of vehicles for helping people achieve self-determination. The second risk is that the focus on service systems leads to a UK-centric view of personalisation, which risks losing the connections to broader international movements towards self-determination. The third risk is the perception that personalisation in the UK has over-stated its originality and not paid due regard to the national and international currents of thought and practice that fed it.

In my view personalisation gains strength from taking its place as one part of a broader international movement focusing on the rights of all citizens to self-determination. These broader international movements can shape how societies think about what is ‘given’ and what is ‘intolerable’, in ways that any national programme cannot.

2)     Target the effects of power rather than confront the sources of power and authority.

On my very cursory reading of Foucault, one of the few things that stuck was his notion about power being networked, without an obvious ‘centre’, such that everyone in the network feels (in different ways) constrained and relatively powerless. While it is tempting to imagine a cackling megalomaniac pulling the strings of power (or sitting on a huge sack labelled ‘Power’ and refusing to give any of it away), perhaps the reality is more like the Wizard of Oz – a sad little man sitting behind a curtain frantically trying to convince us of his omnipotence.

This isn’t to say that differentials in power are not stark and are not real – clearly a person trying to negotiate the social care labyrinth is all too often forced into a place of screaming frustration. But it is to say that if we go searching for the person with the sack labelled ‘power’, with the aim of persuading them to give it up or taking it from them, we’re going to be searching for a long time. When I listen to and read the accounts of a lot of people involved in social care, including people using it, people denied it, families and friends, social workers, managers, proponents and opponents of personalisation, and even politicians (‘Why won’t the world just do what I tell it?’), I don’t hear anyone (well, hardly anyone…) rubbing their hands with glee at the power they are managing to retain and the joy with which they wield it. 

To use a wildly inappropriate metaphor, my sense is that many proponents of personalisation see themselves as an insurgent force (think the rebels in Star Wars), but instead of blowing up the Death Star they are seeking to persuade the Stormtroopers to dismantle it themselves and give the parts to people to build their own (non-lethal) homes. There is a question about whether this is possible without trying to kill Darth Vader first (I suspect every reader will have their own candidate in mind for the Darth Vader role), but Foucault’s second dictum does suggest that working systematically through the policy and practical barriers and their consequences for people is likely to be more effective than all-out confrontation.

Of course, the rapid adoption of personalisation as government policy in England has greatly complicated how the personalisation project can be viewed in terms of power – if personalisation is an instrument of government policy can it stay true to its radical principles – have the Jedi been turned to the Dark Side of the Force? Again, Foucault’s second dictum would suggest that such accommodations are necessary as long as the personalisation project stays focused on understanding the effects of systems on people and how personalisation can make a meaningful difference. Attempting to directly confront political issues such as the distribution of resources is unlikely to be as effective as tracking the impact of these political decisions on the lives of people using (and not using) social care and/or personalisation and trying to persuade people to do something about it.

3)     Contest the privileges of knowledge (and contest what is privileged knowledge).

Much of the debate around personalisation rests on a sometimes acrimonious contestation of what counts as evidence for what is ‘really’ happening with personalisation. Academic research, individual and family accounts of their experiences, case studies of organisational change, surveys, and statistics are all being generated in increasing quantity and variety around whether, how, why, and for whom personalisation is working (or not). As someone who has helped with the generation of some of this evidence, I find the diversity of types and sources of knowledge a real asset (in fact, absolutely necessary) in trying to understand the complexity of personalisation and its effects.

However, I feel the debates about personalisation are all too often bogged down in attempts to privilege one type of knowledge over another. For example, academic researchers can appeal to methodological rigour to claim that only knowledge produced in this way can be relied on and everything else is anecdote, and individuals producing detailed accounts of their own experience can claim that only lived experience counts and academic research is too remote from what’s really happening on the ground. And these disputes about what counts as ‘knowledge’ often have power, or perhaps more aptly a sense of powerlessness, underlying them. People may feel that their lived experience is unheard and ignored, amplifying a general sense of powerlessness in relation to service systems. It may be a surprise to know that academics feel about their research in a remarkably similar way!

For me, Foucault’s third dictum suggests that we need to contest the idea that any particular type of knowledge is in a uniquely privileged position, and learn what we can from all the sources of knowledge at our disposal by putting them alongside each other and trying to synthesise what we can learn from them rather than seeing them in oppositional terms.

4)     Engage the immediate problem rather than the “chief enemy”.

For me, this is closely related to Foucault’s second dictum, and has helped me to think about the frequently acrimonious debates around personalisation. Partly because pretty much everyone feels (in their different ways) powerless and frustrated with how things are, there is a temptation to identify someone else as the ‘enemy’ who is the barrier to a goal that seems to be generally agreed, that of meaningful self-determination for everyone (see Foucault’s sixth dictum below).

The first problem with this is that people are often identified as enemies who could be allies and actually have a shared goal – do debates about how this shared goal can best be achieved need to become adversarial shouting matches about who is to blame or whose motives are the most noble?

The second problem with this is that it might make us feel better (although at the expense of making someone else feel worse), but where does it get us in terms of the goals we want to reach? If we make social workers feel that they’re oppressive stuck-in-the-muds who are stopping people get what they want out of life, does this help us understand why things are the way they are and what social workers feel about their role? If we make proponents of personalisation feel like they’re wilful Pollyannas who are pushing an agenda with no actual regard for the realities of people’s lives, where does that get us?

Foucault’s fourth dictum is a real challenge, as it suggests that campaigning against the iniquities of power is not enough on its own, and also that grand theories providing overarching solutions to problems of power are unlikely to be found (and are even more unlikely to be useful). Foucault suggests that there needs to be ongoing, practical engagement with existing power structures focused on solving ‘real’ and immediate problems for people, person by person, area by area, service by service. Identifying an enemy is not enough.

5)     Oppose efforts to separate individuals from the society that nurtures them.

As with much else, opinion is polarised about the intended and unintended consequences of personalisation on relationships between individuals using self-directed support, other people close to them, and the communities and societies in which they live. The benign view is that personalisation can liberate people from constraining systems of support that are far from nurturing, with people then able to use their resources to develop nurturing and supportive social networks stretching beyond the reach of services and to reconnect more meaningfully with their family, friends and local communities. The malign view is that personalisation atomises the person’s social world, separating them from much-needed support, pitting individuals against their families and leaving them isolated and alone within communities that are at best indifferent.

In terms of personalisation, Foucault’s fifth dictum strongly emphasises the importance of connectedness and ensuring that people’s social networks, lives and communities are genuinely nurturing. For the personalisation project, it is vital to work on these broader aspects of social connectedness and communities which stretch far beyond mechanisms of funding and service provision for individuals and embrace the importance of the collective and belonging in people’s lives.

6)     Preserve the right of self-determination and resist efforts to control “who we are”.

Self-determination is clearly at the centre of the personalisation project, but the terms self-determination, choice and control are often used interchangeably, and there are heated debates about how much choice and control is possible and/or desirable for various groups of people potentially making use of personalised support. Without getting into a long definitional discussion, for me self-determination is the fundamental idea, with the simple principle that people should be the active agents in determining the course of their own lives.

Being self-determined does not necessarily mean having to make choices over every aspect of your life – you may decide to cede control over certain areas of life, for example, with the proviso that you can set the limits of this and take back control when you wish. It also does not mean living a life without being cared for – at various times in our lives we all need to be cared for, but there are other times when we want support or liberation rather than care.

With its conflation of choice and control (and less mention of self-determination), there is a widespread perception that ‘real’ personalisation means in essence supported direct payments, with the person having to act as employer and co-ordinator of their support. A truly personalised approach would have no such assumptions, with people being able to determine at what level they want to have control, the terms under which control is being ceded to others, and when they can take control back – all of which may change at different times in the person’s life.

Foucault’s sixth dictum suggests that it is vital that the personalisation project keeps its eyes firmly on the ultimate prize of self-determination, and that personalisation mechanisms are designed and evaluated with this ultimate aim in mind.

A (non) answer to the question?

Taken together, Foucault’s six dictums suggest a set of strategies needed for personalisation to negotiate its way through existing power structures to become a meaningful reality:

1)  Embed personalisation as part of broader international movements towards self-determination for all citizens.

2) Stay close to the lives of people involved in the personalisation endeavour, documenting and understanding how personalisation works (and doesn’t work), and using this understanding to improve how personalisation works.

3)  Use all forms of knowledge to improve our collective understanding of what is happening, rather than privileging any form of knowledge or engaging in needlessly adversarial debate about what counts as ‘evidence’.

4)  Rather than trying to identify ‘enemies’ to the achievement of self-determination for all citizens, work together to understand the systemic constraints and facilitators to achieving self-determination in specific circumstances  and use these to build better ways of achieving self-determination from the ground up.

5) Ensure that the maintenance and development of people’s social networks and the promotion of nurturing communities is seen as just as essential as paying attention to funding and service support mechanisms.

6) Keep the aim of self-determination (not necessarily choice) in mind at all times, and design and evaluate personalisation projects against this standard.

So, what is the answer to Martin’s question? I’m not sure that there is a satisfactory answer, and even if there is, I’m not sure how far it would take us in making personalisation a meaningful reality for people. Despite the attraction of the grand theory and the big answer for academics like me, Foucault’s analysis of power suggests that there is no substitute for the hard grind of working through the issues person by person and service by service, and working through them together.

Reference

Foucault, M. (1994). The subject and power. In J.Faubion (ed.), Michel Foucault: Power, The Essential Works of Michel Foucault 1954-1984 (pp. 328-348). New York: The New York Press.