Invisible Cities: The city of children

There are invisible cities in England. You can’t see them very easily, but thousands (some say millions) of people live in them, not usually by choice (they don’t tend to be holiday destinations). Here I want to give you a quick tour of the Invisible City of Children.

How many children live in the invisible city?

No-one knows quite how many children live in the city, but until recently it was probably not far off a quarter of a million children. In recent times children in the city have been vanishing, with the number of children in the biggest suburb of the city, the Emeldee district, dropping by about a quarter over the last 4 years (to around 130,000 in 2014). No-one is quite sure what’s happened to them. Although the suburbs are much smaller, the number of children in the Eseldee and Piemeldee districts is continuing to slowly increase (around 31,000 and 10,600 children respectively).

Most children in the city are boys (63%), and although some children are earmarked for life in the city from before birth, children can arrive in the city at any age; children in the Eseldee and Piemeldee districts tend to arrive at a younger age than children in the Emeldee district.

Most children bring their families to live with them in the invisible city, although in 2013 almost 4,500 children in the city were being ‘looked after’ away from their families – children in the invisible city are 3-6 times more likely to be ‘looked after’ than children living elsewhere.

Education

Most children in the Emeldee district (88%) go to school outside the city, with just 12% of these children in the city’s ‘special’ schools. Most children in the Eseldee (78%) and Piemeldee (83%) districts stay in the city’s ‘special’ schools for their education. Over the last few years, more children in all districts are staying in the city’s schools rather than going elsewhere for their education. There is also a shadowy network of ‘special’ boarding schools, often on the outskirts of the invisible city – no-one knows how many children are in these boarding schools, but in 2011 the estimate was around 800 children (most of whom are weekly boarders, coming home to their families at weekends).

Children in the invisible city are more likely to be absent from school than children elsewhere, particularly children in the Piemeldee district who miss on average 1 out of every 8 half-day school sessions (children outside the invisible city miss on average 1 out of every 22 half-day school sessions). For children from the Piemeldee district, most of these absences (80%) are due to child illness or to attend medical appointments; this is similar for children from the Eseldee district (73%). Children from the Emeldee district are less likely to be absent from school for these reasons (57%), but are more likely to be absent from school without permission (21%).

Children in the Emeldee district are also much more likely to be temporarily excluded from school (6.3% vs 1.8% of children) or permanently excluded from school (0.2% vs 0.0% of children, that’s over 250 children in the Emeldee district permanently excluded from school every year) than children living outside the city.

Children in the invisible city are less likely than other children to say that they like school, find school interesting, or say that they are happy at school.

Only about 10% of children in the Emeldee district stay on at school after the age of 16; many more children in the Eseldee districts (62% of children) and Piemeldee districts (49% of children) stay on after the age of 16.

There is virtually no higher education in the invisible city.

Poverty

The invisible city on the whole is less wealthy than the rest of England. Over 35% of families in the Emeldee and Eseldee districts are eligible for free school meals, as are over 25% of families with a child in the Piemeldee district. In the rest of the country, between 15% and 20% of families with a child are eligible for free school meals. Families in the invisible city are also more likely to stay in poverty for longer than families outside the city.

Parents of children in the invisible city (particularly as more families in the invisible city are headed by single parents) find that the family is less likely to get the support needed for parents to work, especially full-time.

Housing

Compared to houses in other parts of England, more houses in the invisible city are rented, overcrowded, in a poor state of repair, and too cold in winter. Children in the invisible city are also more likely than children in other parts of England to have been homeless at some point in their childhood.

Social life

Children in the invisible city are less likely to say they have at least one good friend than children outside the city, and are less likely to spend time with friends outside school.

Bullying and violence

Children and adolescents in the invisible city are more likely to be bullied (often by children outside the invisible city), and are more likely to experience violence from other people, compared to children and adolescents living elsewhere in England.

Children’s health

Children in the invisible city are much more likely than other children outside the city to die in infancy – 12% of people living in this or similar invisible cities as adults die before the age of 4 years, compared to less than 1% of people living outside these invisible cities.

A minority of children in the invisible city are reported by their parents to be in fair-poor health (10%), although this is still a higher level than reported by parents for children elsewhere (2%). Children in the invisible city are more likely to have eyesight problems, hearing problems or epilepsy than other children.

Children in the invisible city are less likely than other children to have breakfast or fruit every day, and at least one parent is more likely to be a smoker. Over half of children in the invisible city (56%) never do sports or exercise, compared to a quarter (25%) of children outside the city.  Children in the invisible city are more likely to be obese than other children.

A minority of children in the invisible city show signs of being distressed – again this is more likely to happen in the city than elsewhere in England. This is also the case for their parents.

The future

Unlike children in other parts of England, who typically start carving out an imagined future for themselves during their teenage years, children and families in the invisible city are discouraged from imagining their future lives as adults outside the invisible city, in terms of a job, a home of their own, travel, friendships, someone to love and be loved by, and maybe a family of their own some day. Instead, a ‘transition process’ exists to prepare teenagers and their families for a life as adults in another invisible city.

Invisible? Yes. Inevitable? No.

There is no reason why this Invisible City of Children has to be like this – none of this is inevitable for children with learning disabilities and their families. With political and social will, this invisible city could be a place where all children are well educated, families live in good housing and have enough money to live good lives, and children have great social lives and are not subject to bullying and violence. In this city, children and families would be healthier and happier, and could imagine fulfilling futures for everyone. And, perhaps, the invisible barriers that act to create this invisible city would dissolve, so children with learning disabilities and their families can fully inhabit, alongside everyone else, the real cities, towns and villages where they live.

Update: Glossary
In response to an excellent suggestion from @thekathmoss here's a brief glossary of the districts for non-city dwellers, based on the categories used in Department for Education statistics (see www.gov.uk/government/collections/statistics-special-educational-needs-sen )
Emeldee: MLD, or children with Moderate Learning Difficulty
Eseldee: SLD, or children with Severe Learning Difficulty
Piemeldee: PMLD, or children with Profound & Multiple Learning DIfficulty

Gazetteers

Emerson, E. (2015). The determinants of health inequities experienced by children with learning disabilities. Public Health England: London. www.improvinghealthandlives.org.uk/publications/313899/The_determinants_of_health_inequities_experienced_by_children_with_learning_disabilities

Emerson, E. & Hatton, C. (2014). Health Inequalities and People with Intellectual Disabilities. Cambridge: Cambridge University Press.

Hatton, C., Emerson, E., Glover, G., Robertson, J., Baines, S. & Christie, A. (2014). People with learning disabilities in England 2013. Public Health England: London. www.improvinghealthandlives.org.uk/publications/1241/People_with_Learning_Disabilities_in_England_2013

Hatton, C. & Glover, G. (2015). Young people with learning disabilities or autistic spectrum disorder in post-compulsory state supported schools in England. Tizard Learning Disability Review, 20, 170-174.

Client contribution? that'll do nicely

This is just a quick blog containing some data I came across today while rummaging amongst the information stored by the Health and Social Information Centre's excellent NASCIS system (http://www.hscic.gov.uk/nascis ).

I hadn't noticed before that the information relating to expenditure by social services (PSS-EX1 - notice the strategic use of the hyphen to avoid embarrassment when searching for it on Google) also includes information on income from 'client contributions' (see here for more guidance on what this means http://www.hscic.gov.uk/media/13520/PSS-EX1-Guidance-2013-14/pdf/PSS-EX1_Guidance_2013-14_v1.0.pdf ).

The graph and table below summarise the information on client contributions concerning social services for adults with learning disabilities aged 18-64 years, in England, from 2005/06 to 2013/14.

Overall, in 2013/14, client contributions for social services for working age adults with learning disabilities totalled £262.8 million. Most of this came in contributions for residential care placements (£141.4 million in 2013/14), followed by 'fairly charged' community services such as day services and home care (£62.7 million), supported/other accommodation (£31.3 million), direct payments (£13.2 million) and nursing care (£8.7 million).

Overall, the black line on the graph takes the total amount of client contributions in 2005/06 and shows what this total would be over time taking into account inflation in the costs of social services (thanks again to the Personal Social Services Research Unit and Lesley Curtis in particular for their invaluable work compiling these sorts of statistics http://www.pssru.ac.uk/project-pages/unit-costs/2014/ ). As you will see, client contributions have broadly increased in line with inflation, although the 2013/14 figures might suggest client contributions beginning to rise faster than inflation.

I don't know enough about what this information means to want to make any strong comments about it at this point and I'd like to hear people's thoughts on it. £262.8 million is certainly a big chunk of money - what do people make of this amount, what client contributions are being spent on, and how this is changing over time?

Update: I've just been looking through some provisional results from the Adult Social Care Survey for 2013/14 (see here http://www.hscic.gov.uk/catalogue/PUB14386 ), which included responses 'from' 13,360 adults with learning disabilities (many people are 'helped' by support workers to complete the survey, so the results have to be taken with a Lot's wife of salt). According to this survey, 22% of adults with learning disabilities said that they buy some more care and support with their own money, and 10% of people said that their family pays for some more care and support for them.

One Step Beyond: What do the latest statistics tell us about inpatient services and people with learning disabilities?

The Health and Social Care Information Centre (HSCIC) have today (22^nd May) published two updates of statistics about people with learning disabilities in inpatient services in England. Both of these updates are based on information from English NHS commissioners, and are re-booted updates in a series previously published by NHS England.

The first update contains a range of information on the number of people in learning disability inpatient services from February to March 2015 (it’s not information for a full three months because the responsibility for collecting the information moved from NHS England to HSCIC in January). It’s available here http://www.hscic.gov.uk/catalogue/PUB17638/lds-1415q4-rep.pdf

The second update contains similar information (in less detail) on a month-by-month basis, reporting on the month of April 2015. This is available here http://www.hscic.gov.uk/catalogue/PUB17634/ldsm-apr-15-exec.pdf

There is more detail in both of them than I’m going to mention here, and I would recommend spending a bit of time looking at both updates if this is important to you. There are a few things that jumped out at me, mainly because they suggest that, as yet, large-scale reductions in the use of inpatient services are just not happening.

First, the headline figures: the number of people in learning disability inpatient services. I found this graph from the monthly update the most helpful: ignoring the blip in January 2015 (probably due to the transfer of data-gathering responsibilities) the picture is of a consistent number of people in these services from March 2014 to April 2015 (in fact the number of people went up slightly from March to April).

Second, the population of people in these inpatient services is pretty static. During February and March 2015, only 25 people had gone into and come out of a specialist service in that time, a further 105 people had been admitted and 180 people had been discharged. When admissions and discharges can be include transfers between different inpatient services, a lot of the admissions and discharges are likely to be people being churned around the inpatient system. Even when just looking at how long people had been in their current inpatient service, nearly half (47%) of people had been in their current inpatient service for more than 2 years.

Third, there seems to be little evidence that inpatient services are sharpening up their act in terms of what might be obvious priorities. So at the end of March 2015:

·        there were still 110 people aged under 18 in inpatient services,

·        there were 90 people in learning disability inpatient services recorded as having neither a learning disability nor autism,

·        there were 285 people in inpatient services not under the Mental Health Act,

·        almost a quarter of people (22%) had not been reviewed in the last six months,

·        half of people (50%) still had no planned transfer date,

·        for almost half of people (48%), their planned transfer date was more than a year away,

·        the above statistic might partly explain why local authorities were apparently not aware of the transfer of 755 people (32%).

Given that a large majority (79%) of people are in general or low secure inpatient services, what are the apparent blockages to moving people out of inpatient services? According to people’s “care plans”, of the 1,480 people “needing inpatient care”: 510 people (21%) are “not dischargeable”, 945 people (39%) have an “active treatment plan”, and only 25 people (1%) require “indefinite inpatient care”.

This leaves 915 people (over a third of people in inpatient units, 38%) currently in inpatient services who “do not need inpatient care” according to their care plans, with 830 people “working towards discharge” and 85 having a “delayed transfer of care”. This number of people roughly corresponds to the 37% of people with a planned discharge date in the next 6 months, so if this cohort moves out of inpatient services (and is not replaced by new people) it should become visible in these statistics in the next 6 months.

Overall, while there improvements in what commissioners say they and providers are doing (for example in the number of people with plans to move out of inpatient units), as yet there is very little evidence that this is resulting in more people moving out of inpatient services, of fewer people moving in, and of inpatient services really changing what they’re doing. I also worry whether a cohort of 'easier' people are preparing to move out, with everyone else being prepared to be left where they are as 'undischargeable'. Let’s hope they are collectively feeling the heat from NHS England, to take One Step Beyond (see, I got there in the end – enjoy this https://www.youtube.com/watch?v=N-uyWAe0NhQ ).

The four staplers of the apocalypse: Bureaucracy and people with learning disabilities

[Warning: this is one of those over-enthusiastic “I’ve just read this totes amazeballs book” essay-length posts, so if you don’t want to read credulous speculation look away now]

Long-suffering Regular readers of this blog will know there are a number of things I worry away at, without getting anywhere near the heart of the matter, such as: how and why agencies supposedly there to support people with learning disabilities and their families do the opposite of this in ways that are so malign; why there are such inequities in access to decent services and support; how and why bureaucratic processes are so regularly ‘weaponised’ against people with learning disabilities and their families with apparent impunity when breaking any regulation or law you care to name.

Sometimes you read something at the right time that helps you see things from a different perspective. I’ve just finished reading “The Utopia of Rules” by David Graeber (an anarchist anthropologist, or is it an anthropologist anarchist?), a set of essays that together offers a way of thinking about bureaucracy that made a lot of ‘care’ services’ behaviour make sense to me. In my usual fashion, I’ll quote/paraphrase extensively, then try to say why I think it’s relevant to the ways people with learning disabilities and their families are so often (mis)treated. This post is organised according to three of the maxims set out in the book.

Maxim 1: “The Iron Law of Liberalism states that any market reform, any government initiative intended to reduce red tape and promote market forces will have the ultimate effect of increasing the total number of regulations, the total amount of paperwork, and the total number of bureaucrats the government employs.”

David Graeber adopts a very broad historical context, but from this come a few starting points that help to describe some of the growth in (and characteristics of) modern bureaucracies. Bureaucratic corporate culture, applied in the name of ‘efficiency’, has been designed to extract more wealth in the form of short-term profit, with the following consequences:

1)      The executive class within public and private sectors (now indistinguishable in terms of corporate culture), previously aligned with the workers who actually made things or did things, have now become realigned ‘upwards’ to the interests of ‘owners’/financiers.

2)      ‘Shiny’ language: “It was a cultural transformation. And it set the stage for the process whereby the bureaucratic techniques (performance reviews, focus groups, time allocation surveys…) developed in financial and corporate circles came to invade the rest of society – education, science, government – and eventually, to pervade almost every aspect of everyday life. One can best trace this process, perhaps, by following its language. There is a peculiar idiom that first emerged in such circles, full of bright, empty terms like vision, quality, stakeholder, leadership, excellence, innovation, strategic goals or best practice.”

3)      Bullshit jobs: “This helps a phenomenon I have written about elsewhere: the continual growth, in recent decades, of apparently meaningless, make-work, ‘bullshit jobs’ – strategic vision coordinators, human resources consultants, legal analysts, and the like  - despite the fact that even those who hold positions are half the time secretly convinced they contribute nothing to the enterprise.”

4)      The increasingly bureaucratic ‘credentialisation’ of jobs in society: “One could repeat the story in field after field, from nurses to art teachers, physical therapists to foreign policy consultants . Almost every endeavour that used to be considered an art (best learned through doing) now requires formal professional training and a certificate of completion, and this seems to be happening, equally, in both the private and public sectors...In theory they are meritocracies. In fact everyone knows the system is compromised in a thousand different ways”.

5)      Audit culture: “The basic idea behind audit culture is that in the absence of clear, ‘transparent’ criteria to understand how people are going about their jobs, academia simply becomes a feudal system based on arbitrary authority” [this is a discussion of Marilyn Strathern’s analysis of audit culture in an academic department] “…Such reforms may aim to eliminate arbitrary personal authority, but of course they never actually do. Personal authority just jumps up a level, and becomes the ability to set the rules aside in specific cases.”

Any of this sound familiar in health, social care, education? Including:

·        The shiny, corporatized language (gotta get a website, a logo, a hashtag: the NHS Improving Quality (NHS IQ, geddit?) funded School for Health and Social Care Radicals, hashtag #TheEdge, motto “Rock the boat and stay in it”, springs to mind) that bears no relation to the realities of people using these services.

·        The transmutation of useful jobs (social worker, nurse) into accretions of ever longer and more meaningless bullshit job titles (fancy being a Senior Business Devlopment [sic] Consultant/Manager – Social Care anyone? It‘s a current vacancy in Community Care).

·        Audits designed to show the organisation to best advantage rather than gain honest ideas for how the organisation can do things better (sorry, #innovate and #exnovate) – the NHS Friends and Family Test, for example, compared to the honest feedback collected via Patient Opinion designed to start a conversation.

·        The increased ‘outsourcing’ of bureaucracy to people getting support, which at the same time requires ever more intrusive bureaucratic structures of surveillance (the way that many organisations ‘do personalisation’ is a prime example, with more and more bureaucratic responsibility placed on people and families, yet accompanied by a heftier apparatus of ‘monitoring’ and ‘audit’).

·        Within such ‘totalizing’ or ‘predatory’ bureaucracies (David Graeber’s terms), the increasing difficulty that care and support workers, social workers and nurses have in doing their jobs ‘on the side of’ people and families wanting support, rather than feeding the bureaucracy (and colleagues further up the organisational hierarchy).

Maxim 2: “Always remember it’s all ultimately about value (or: whenever you hear someone say that their greatest value is rationality, they are just saying that because they don’t want to admit to what their greatest value actually is)”

“We are speaking of a certain abstract ideal of how bureaucratic systems should work, not the way they actually do. In reality, bureaucracies are rarely neutral; they are almost always dominated by or favour certain privileged groups…over others; and they invariably end up giving administrators enormous individual personal power by producing rules so complex and contradictory that they cannot possibly be followed as they stand.”

“Such institutions always create a culture of complicity. It’s not just that some people get to break the rules – it’s that loyalty to the organization is to some degree measured by one’s willingness to pretend that this isn’t happening…What I am saying is that we are not just looking at a double standard, but a particular kind of double standard typical of bureaucratic systems everywhere. All bureaucracies are to a certain degree utopian, in the sense that they propose an abstract ideal that real human beings can never live up to.”

The human in ‘human services’ has been systematically exiled in the name of avowedly impersonal bureaucracies. This is because impersonal rules are fair, right, ensuring that inequalities wrought by all the ‘biases’ of human beings engaging with each other without these rules don’t happen? And workers are trained so such a high standard now that support for people is uniformly great? And all these professional standards and organisations sharing best practice means that bad stuff is extremely rare, spotted quickly and dealt with honestly with people with learning disabilities and families? Wrong, wrong and wrong. There are still shocking inequities in the access of people with learning disabilities and families to decent services and support. Highly trained staff who are there to ‘help’, can treat people appallingly, with the organisations they’re working in rarely held to any form of meaningful accountability (heads may rock a little, but they rarely roll out of the boat).

Bureaucracies perform an ongoing con trick on people who have to engage with them. They are explicitly designed to be inhuman, so that actual people engaging with these bureaucracies are set up to fail. And people administering bureaucracies still have as much arbitrary power as they ever did, except that it is now cloaked and not to be challenged (except within the nonsensical terms of the bureaucracy itself). And everyone knows this, including (especially) people administering these bureaucracies, but there is a collective complicity within bureaucracies that does not allow this fact to be spoken. This leads to the self-referential piles of mendacious bullshit that bureaucracies present to the world (and to each other) that bear no relation to reality. Surely it’s only in such totalizing inhuman systems that people have to be told to act with ‘candour’ or that we really need ‘empathy’ in the workforce – ironically the solutions to these ‘problems’ are themselves highly bureaucratic (more credentialized training, more leadership, more audits, more hashtags and award ceremonies), meaning that they are more than likely doomed to fail.

If you’re a person with learning disabilities or a family member, you’re presented with an invidious ‘choice’ – try to play the bureaucratic game which is stacked for you to fail (with any ‘win’ more or less temporary), or challenge the terms on which the game is played and face the consequences.

Maxim 3: “Do not underestimate the importance of sheer physical violence”

David Graeber makes what seems to me to be a fundamental point that, for them to ‘work’, bureaucracies need to be underpinned by the (threat of) physical violence towards those who try to operate outside the terms of the bureaucracy:

“Max Weber famously pointed out that a sovereign state’s institutional representatives maintain a monopoly on the right of violence within the state’s territory. Normally, this violence can only be exercised by certain duly authorized officials (soldiers, police, jailers), or those authorized by such officials (airport security, private guards…), and only in a manner explicitly designated by law. But ultimately, sovereign power really is, still, the right to brush such legalities aside, or to make them up as one goes along.”

“One of the central arguments of this essay so far is that structural violence creates lopsided structures of the imagination. Those on the bottom of the heap have to spend a great deal of imaginative energy trying to understand the social dynamics that surround them – including having to imagine the perspectives of those on top – while the latter can wander around largely oblivious to much of what is going on around them. That is, the powerless not only end up doing most of the actual, physical labor required to keep society running, they also do most of the interpretive labor as well.”

“Jim Cooper, a former LAPD officer turned sociologist, has observed that the overwhelming majority of those who end up getting beaten up or otherwise brutalized by police turn out to be innocent of any crime. ‘Cops don’t beat up burglars’, he writes. The reason, he explained, is simple: the one thing most guaranteed to provoke a violent reaction from police is a challenge to their right to, as he puts it, ‘define the situation’…It only makes sense then that bureaucratic violence should consist first and foremost of attacks on those who insist on alternative schemas or interpretations.”

For me, this might be getting close to the heart of how (why?) so many people with learning disabilities and their families (and other disabled people too) are treated so appallingly and with such violence by health and social care services supposedly there to help. This threat of violence isn’t symbolic, it’s real, and violence is exercised – forcibly removed from your home, killed by neglect, solitary confinement (sorry ‘seclusion’), physical violence (sorry ‘restraint’), forced administration of powerful tranquilising drugs, not to mention ways of keeping people in poverty and unemployed (sorry ‘benefit sanctions’). Again, within bureaucratic service systems this violence is never named for what it is, despite the obvious trauma experienced by people and families who have been subjected to it and the obvious fear of vengeance and reprisals at the hand of bureaucracies expressed by so many families thinking of questioning any aspect of their support.

And the interpretive labour that people with learning disabilities and families in particular have to engage in is prodigious and exhausting . One of my nieces is a teenager with learning disabilities with a line in quietly acerbic asides to accompany her general awesomeness. My sister spends an inordinate amount of time and intellectual/emotional energy engaged in exactly this interpretive labour with people in bureaucracies – how shall I present myself, my daughter and my family? Competent, with it, but not so much that people will say no support is needed? Wanting the best, but not pushy, demanding or unrealistic? Middle class enough to do business with, but not superior? Knowledgeable, but with due deference to professional expertise – and definitely not one of those internet mums? And of course, endlessly patient, as this interpretive labour only goes in one direction. Get to an appointment late as a parent and that can have serious repercussions; but if the bureaucracy forgets the appointment altogether you’ve got to suck it up, not complain, and try and reschedule.

And challenging the right of bureaucracies to define the situation, in any number of ways, can provoke the violence discussed earlier. Perhaps a person with learning disabilities does not show due deference (or simply doesn’t really care about) arbitrary and nonsensical rules and regulations? Perhaps a parent goes so far as to point out that somewhere in the bureaucratic machinery an error has been made and wants to complain or, even worse, wants it put right? These are the points at which bureaucratic vengeance or worse are likely to arise.

Can there be life outside bureaucracy?

As David Graeber points out, the increasing stranglehold of bureaucracy over all aspects of our lives has become almost total, such that any alternative to bureaucratic ways of organising society is literally impossible to imagine. Romantic appeals to a pre-bureaucratic era don’t cut much ice either, as this was hardly a golden age of equality for people with learning disabilities either. But I think there are a few grounds for hope.

The first is the JusticeforLB campaign, which among many other things is fiercely antibureaucratic and, in David Graeber’s words, has “the defiant insistence on acting as if one is already free”. The #JusticeforLB campaign is constantly exposing the shoddy, rigged, inhuman structures of structural violence that are bureaucracies, and insisting on the fundamental importance of a shared humanity rather than efficient rules as the foundation for the way we treat each other (I’m reminded of a couple of other dudes who were no respecters of bureaucracy, Bill & Ted, and their society-shaping maxim “Be excellent to each other”. Along with their other maxim, “And party on dudes!” that’s pretty much all you need, really).

The second might seem a bit weird, but it’s human rights, and the Human Rights Act in particular. The human rights contained within the Human Rights Act seem to me to come from a space outside bureaucracy, and are not themselves readily assimilable into bureaucratic algorithms for ‘correct’ behaviour. Most obviously, the structural violence of bureaucratic systems is off the agenda. It is also freely acknowledged that the basic principles of the human rights may, at times and for particular people, conflict with each other, acknowledging that lives are messy and not to be bound into any set of constraining rules. Sure, bureaucracies can and do grossly misdescribe what they’re doing in terms of adherence to human rights. However, perhaps it’s no accident that lawyers (no strangers to bureaucracy themselves, but trained in arguing from first principles and applying these basic principles to individual lives) have dealt some of the biggest blows to the violence enacted by bureaucracies towards people with learning disabilities and their families, using the principles in the Human Rights Act. The LBBill is coming from a similar place, compared to the much more limited ambitions of the “No voice unheard, no right ignored” consultation, which seems to me to be aiming to inject a little more rightsiness into existing bureaucratic structures rather than developing legal principles with which to challenge these structures.

Finally, I have hope in those professionals and organisations that are trying to reconnect to the human, based on human rights principles. Can organisations supporting people with learning disabilities and families operate by engaging people honestly, as human beings, without the threat of violence lurking behind inhuman rules that are impossible to fulfil? My hopeful answer is yes.

Reference

Graeber, D. (2015). The Utopia of Rules: On technology, stupidity, and the secret joys of bureaucracy. Brooklyn: Melville House.

Wordy Crappinghood

A weird thing happened to me yesterday (and yes, I’m blaming you #justiceforLB). Public health practitioners in North West England get together for an annual event, and to the organisers’ great credit they’d organised yesterday’s event in unconventional ways to get beyond the usual slow torture by powerpoint and do something different. Part of this was to have soapbox sessions, where you can sign up for 3-5 minutes of talking (no powerpoint!) about your ‘public health passion’ in a room full of people followed by 5-10 minutes of discussion.

So a month or two ago I signed up for a slot, and I’d put together my usual pitch of shocking/grim statistics and matchingly grim individual experiences about the health, living situations and health service treatment or otherwise of people with learning disabilities (gotta win that misery auction…). As I was last up, I was listening to persuasive, evidence-based and passionately expressed cases being made by public health practitioners about domestic violence, loneliness, plain English, high blood pressure and working with regulators, all based on the same premise – if you only knew more about Issue X, then of course you’d want to do something about it.

And I stood up to do my bit, and something went a bit wrong. Because when it comes to people with learning disabilities, I don’t think that professionals (including public health practitioners, but they’re by no means unusual) not knowing about the circumstances of people with learning disabilities is the main obstacle to them doing anything constructive to improve people’s lot. There are some brilliant public health people who use their unique professional position to see the whole picture and are trying to stitch together plans to really improve the lives of people with learning disabilities. But in many conversations I’ve had with public health practitioners ignorance of the evidence isn’t the issue – it’s (not to put too fine a point on it) discrimination. To caricature horribly, I hear things like:

·        People with learning disabilities aren’t really part of the ‘public’ in public health – they’re not part of communities and live in weird specialist services that we don’t have to think about.

·        The early death, poorer health and crap living situations of people with learning disabilities are kind of an inevitable function of their learning disability, so it’s not worth making too much of an effort to improve people’s health or people’s lives.

·        The proper function of public health when it comes to people with learning disabilities is to work to prevent such burdens on society existing in the first place.

And when I stood up, this is kind of what I said. Rude, certainly. Alienating, probably. Strategically, tactically wise? I don’t know what those words mean really. People listened politely and there was some good discussion and questions, but as a generally conflict avoidant person I felt a bit wobbly afterwards and had to go somewhere quiet. This seems to be happening to me more and more recently -  I’ve more and more had enough of spouting language that skirts or avoids the thing itself (this is something that I’m shamefully good at, by the way, and I’m sure if I looked I’d find it’s pervasive through what I write and what I say) and I find myself more and more wanting to talk about the thing itself.

Is this a good thing or a bad thing in trying to effect real change in the lives of people with learning disabilities? No idea. Why is my default position to talk and write in this euphemistic way, and why is just saying the thing itself so difficult for me? Well, for me a big part of the answer is habit, but the bigger part is fear (fear of losing my job, fear of alienating people, fear of looking unprofessional).

And of course, the statements above are what I hear/interpret from similarly euphemistic, ‘professional’ things that other people write and say. And this fog of ‘professional’ speak/write settles over everything, stifling any clarity, meaning or accountability. This is not just a question of jargon, but weaponised jargon, with hidden/unconscious purposes to deflect any challenge, retain power and avoid honest conversations.

George Orwell, in his essay ‘Politics and the English language’ (see here https://www.mtholyoke.edu/acad/intrel/orwell46.htm ) dissects these issues mercilessly, and rather than go on about it I’ll just pick out a few quotes:

“As soon as certain topics are raised, the concrete melts into the abstract and no one seems able to think of turns of speech that are not hackneyed: prose consists less and less of words chosen for the sake of their meaning, and more and more of phrases tacked together like the sections of a prefabricated henhouse.”

“Orthodoxy, of whatever color, seems to demand a lifeless, imitative style.”

“As I have tried to show, modern writing at its worst does not consist in picking out words for the sake of their meaning and inventing images in order to make the meaning clearer. It consists in gumming together long strips of words which have already been set in order by someone else, and making the results presentable by sheer humbug. The attraction of this way of writing is that it is easy. It is easier -- even quicker, once you have the habit -- to say In my opinion it is not an unjustifiable assumption that than to say I think.”

“The inflated style itself is a kind of euphemism… The great enemy of clear language is insincerity. When there is a gap between one's real and one's declared aims, one turns as it were instinctively to long words and exhausted idioms, like a cuttlefish spurting out ink.”

How much ‘official’ language within health, social care, education or any other system supposedly there to support people with learning disabilities and family members, is like this? Why? It’s time to talk about the thing itself.

I'll take the P please Bob

I don’t know if it’s still going or in what guise, but those of a certain age might remember the kids’ TV quiz show Blockbusters, hosted by Bob Holness. Contestants had to choose a letter to get across the board, with the height of hilarity being for a contestant to smirkily ask “Can I have a P please Bob?” So, on the back of three recent CQC inspections which included inpatient services for people with learning disabilities, here’s a multiple choice quiz to help you work out which of these three organisations are taking the P. One point per question if you identify all three organisations correctly.

CQC inspection reports:

1)      Which organisation’s inpatient services for people with learning disabilities were:

a.       Rated overall as ‘Requires Improvement’.

b.      Rated overall as ‘Requires Improvement’.

c.       Not rated overall as the organisation refused to allow the ratings to be made public

2)      Which organisation’s inspection report included the following:

a.       There were potential ligature points in rooms that people who use services have unsupervised access to.

b.       Care was not always being provided in safe physical environments. At the [unit] and [unit] work was needed to address ligature points… We noted that there was only one set of emergency resuscitation equipment across the two units which was stored on [unit 1]. This meant that if a person on [unit 2] needed this equipment staff would need to pass through three locked doors, posing a potential risk.

c.       Not all wards had resuscitation equipment. There were a number of locked doors, stairs and potentially an unpredictable patient group, which may impact how quickly the equipment arrived where it was needed.

3)      Which organisation’s inspection report included the following:

a.       We found that there were not always enough members of staff to care for people safely. Some staff and patients told us that they did not always feel safe on the wards.

b.      The [organisation] relied heavily on agency and bank nurses to staff the wards. On some shifts none of the nursing staff were permanent employees.

c.       All the services were facing challenges in filling all their staff vacancies, but regular agency staff were being used and safe staffing levels maintained. The [organisation] should consider whether it is safe for staff to start working at the [unit] prior to their disclosure and barring checks being in place.

4)      Which organisation’s inspection report included the following:

a.       Contrary to current Department of Health guidance, nurses sometimes restrain people in the prone (face-down) position as a planned intervention to manage disturbed behaviour.

b.      Seclusion facilities were being routinely used for deescalation and time out and not recorded as seclusion.

c.       The seclusion room on the [unit] did not support patient privacy and dignity as there was no separate area for the toilet which was in full view of a large window. There was poor recording of seclusion on [unit]. Seclusion records we reviewed covered a range of time periods from 15 minutes to nine hours which took place one year ago. The longest period of seclusion had no record of a medical review taking place throughout the whole period. There was no evidence the patient had been given the opportunity afterwards to record their views of their experience of seclusion.

5)      Which organisation’s inspection report included the following:

a.       We found that patients had detailed health action plans which had been informed by a number of assessments. However we found one person who had epilepsy did not have a care plan in relation to this despite having a seizure in 2014.

b.      External professionals (NHS England commissioners) told us they were satisfied with the quality of interventions provided by the staff at [unit].

c.       Just two of 33 records that we reviewed contained a health action plan.

6)      Which organisation’s inspection report included the following:

a.       Patient care and risk was not assessed, planned and managed based on individual needs. There was an emphasis on generic, restrictive risk management processes, including restricting visitors and leave, which are not in line with current Department of Health guidance, the principles of the Mental Capacity Act or the Mental Health Act code of practice.

b.      Concerns were raised about the use of the Mental Capacity Act and the exclusion of relatives from decision making.

c.       Ten of 20 care records that we reviewed showed that staff had not adhered to one or more of the requirements of the MHA.

7)      Which organisation’s inspection report included the following:

a.       We found two cases where the best interest decision had been made before the mental capacity assessment had been recorded.

b.      We checked the T2 (certificate of consent to treatment) and T3 (certificate of second opinion) forms. We found that these were not always accurate. Some specified medication the person was no longer taking, or did not always represent the dosage of medication the person was taking, which was over the British National Formulary (BNF) recommended limit.

c.       Whilst medicines were stored securely, the facilities for the storage of controlled drugs were not in accordance with [organisation] policies.

8)      Which organisation’s inspection report included the following:

a.       People using the services were cared for by staff who were very motivated and supported people with care, dignity and respect.

b.      The great majority of the people who use services that we talked to told us that they were treated kindly and respectfully by staff. The care interactions that we observed supported this.

c.       We observed little activity or interaction between staff and patients on the wards we visited. Some patients told us that they were well cared for and they had no concerns about the staff. Some patients felt angry and frustrated by how they are treated; stating that staff do not listen to them and did not always speak to them with respect.

9)      Which organisation’s inspection report included the following:

a.       The [organisation] must ensure it supports staff working in the [name of unit] so they have regular line management input, understand the changes that are taking place and receive support in an appropriate style to facilitate them to perform their roles.

b.      Some of the governance arrangement were not fully effective. This is demonstrated by: a failure to recognise and address unsafe night-time cover…; a lack of awareness of and failure to follow [organisation] policies relating to seclusion, segregation and restraint; a failure to provide adequate training for staff in the skills required…; poor adherence to the requirements of the Mental Health Act.

c.       Some staff told us that there was little engagement with senior managers or the organisation`s values. We were told that many of the governance, care and treatment processes were centrally administrated.

Organisations’ press releases:

10)   Which organisation’s press release:

a.       Welcomes the CQC report.

b.      Welcomes the CQC report.

c.       is ‘no longer available’ on the organisation’s website.

11)   Which organisation’s Chief Executive has stated that:

a.       The CQC highlighted positive examples.

b.      There are a number of areas of practice highlighted as good within the report.

c.       It has confirmed that we are right to have confidence that our services are effective, caring and responsive.

12)   Which organisation’s Chief Executive has stated that:

a.       The report also highlighted a number of areas for improvement, which we have already begun to address.

b.      A major programme of work began in the summer to address the negatives and learn from the positive and safe practice found by the CQC.

c.       The inspection has highlighted aspects which can be improved and this resonates with the things we have already identified for improvement in our immediate and future plans. 

You scored:

0-4:        What are you, some kind of person using the service or family member or something? You shouldn’t have been allowed anywhere near this quiz.

5-8:        You seem to be mistaken that inpatient services for people with learning disabilities all have similar fundamental problems.  

9-12:      An excellent score – you’re clearly been paying too much attention to be a commissioner.

13:          Congratulations, you are clearly a Chief Executive in the making!

Answers

1)      a or b: St Andrews and Southern Health                                c: Calderstones

2)      a: Calderstones                 b: Southern Health                        c: St Andrews

3)      a: St Andrews                    b: Calderstones                            c: Southern Health

4)      a: Calderstones                 b: St Andrews                    c: Southern Health

5)      a: St Andrews                    b: Southern Health          c: Calderstones

6)      a: St Andrews                    b: Southern Health          c: Calderstones

7)      a: Calderstones                 b: St Andrews                    c: Southern Health

8)      a: Southern Health          b: Calderstones                                c: St Andrews

9)      a: Southern Health          b: Calderstones                                c: St Andrews

10)   a or b: Southern Health and St Andrews                                c: Calderstones

11)   a: Calderstones                 b: Southern Health          c: St Andrews

12)   a: Southern Health          b: Calderstones                                c: St Andrews

Sources

The CQC inspection report of Calderstones Partnership NHS Foundation Trust available here http://www.cqc.org.uk/provider/RJX (quotes taken from inpatient services report).

The CQC inspection report of St Andrews Healthcare available here http://www.cqc.org.uk/provider/1-102643363 (quotes taken from services for people with learning disabilities or autism report).

The CQC inspection report of Southern Health NHS Foundation Trust available here http://www.cqc.org.uk/provider/RW1 (quotes taken from wards for people with learning disabilities or autism report).

The Calderstones full response to the CQC report is available here http://www.calderstones.nhs.uk/newsandevents/32/trust-responds-to-july-cqc-pilot.html The Chief Executive’s statement in response to the CQC inspection is on his blog here (17^th December entry) http://www.calderstones.nhs.uk/aboutus/chief-executives-statement.html

The St Andrews press release in response to their CQC inspection is available here http://www.standrewshealthcare.co.uk/news/st-andrew%E2%80%99s-welcomes-care-quality-commission-report

The Southern Health press release in response to their CQC inspection is available here http://www.southernhealth.nhs.uk/news/southern-health-cqc-report/

Flux = Rad

(from The Beano)

On Twitter this morning, Martin Routledge (@mroutled) posted the following in response to David Brindle’s story in The Guardian headlined ‘NHS to shut many residential hospitals for people with learning disabilities’ (http://www.theguardian.com/society/2015/feb/10/nhs-shut-residential-hospitals-learning-disabilities-winterbourne-view ):

“@GdnSocialCare interested to hear thoughts of @ndtirob @AliciaWood_HSA @GeorgeJulian @chrishattoncedr – beginning of end or…”

I’ve been out and about all day so have mulling on this without much clarity, but rather than clogging up people’s twitter feeds with 100s of ill-formed tweets I thought I’d just do a quick blogpost instead.

I watched the Public Accounts Committee session where Simons Stevens, Chief Executive of NHS England first mentioned the c (closure) word (the full transcript of the session is here http://data.parliament.uk/writtenevidence/committeeevidence.svc/evidencedocument/public-accounts-committee/care-for-people-with-learning-disabilities/oral/18031.pdf ). To be honest, at the time it didn’t strike me as that big a deal, largely because any plan that involved significant numbers of people not being in these services any more (like the, er, Winterbourne View objectives?) would have to mean some closures anyway. 

Just a few observations, issued from different parts of my brain:

[Policy wonk part of brain] 1) The responses to the Public Accounts Committee didn’t contain anything materially new from the NHS England Transforming Care document (which to be fair was only published the week before – see my take on this here http://chrishatton.blogspot.co.uk/2015/01/a-second-ferrero-rocher-sir.html but really read the #justiceforLB Herb Audit Office report here http://justiceforlb.org/wp-content/uploads/2015/02/JusticeforLBAudit.pdf ). However, public mention of closures from Simon Stevens (with his ‘NHS Change Day’ lightbulb commitment the following day to ‘help improve services for people with learning disabilities’) raises the public stakes in ways that must be helpful.

[Policy wonk part of brain] 2) The Public Accounts Committee seemed fairly aghast that some of the big failures of the original programme (which seem to me largely commissoners and providers of these places swaggering up to the DH in best Horrible Histories rap style and chanting “You gonna make me?”) basically have been left unaddressed, with NHS England taking the rap but at the same time tiptoeing round commissioners, service providers, social care generally (who they?) and the Ministry of Justice rather than tackling them head on. As John Lish noted in a superb analysis of the session (http://losttransport.blogspot.co.uk/2015/02/simon-stevens-failure-is-not-option.html ) the question of funding yielded no satisfactory answers, and without this being addressed what’s going to be different from first time round?

[Perhaps what I can call the #justiceforLB part of my brain] 3) A really striking thing for me from the session is the technocratic language world that senior people seem to live in (see Mark Neary’s blogpost for more on this and other issues https://markneary1dotcom1.wordpress.com/2015/02/11/worlds-apart/ ), and that more ‘cleverness’ may not be what’s essential here to drive through fundamental change – now is the time for people with learning disabilities and families to be really in charge, with access to undoubted necessary cleverness that will work under their direction.

[#justiceforLB brain] 4 and last) These services are not going to give up without an almighty fight, and NHS England had better be ready for the streetfighting required…

Exhibit A: Findings from the Learning Disability Census show that they’re already digging in to defensive positions to protect themselves (see http://chrishatton.blogspot.co.uk/2015/01/unwrapping-first-ferrero-rocher.html ), for example the number of people ‘not dischargeable’ due to behavioural risks to self or others or mental illness increasing by a whopping 80% from 496 people in 2013 to 895 people in 2014.

Exhibit B: Reacting to a news story about the closure of Calderstones NHS Trust (partly on the back of a fairly damning CQC inspection report https://www.cqc.org.uk/location/RJX04/inspection-report/INS1-940186387 ), a story in the Lancashire Telegraph showed the range and scale of opposition to any potential closure (http://www.lancashiretelegraph.co.uk/news/11756016.CLOSE_IT_DOWN__Expert_advises_national_NHS_chiefs_to_shut_down_Calderstones_Hospital/ ), including:

•            the local MP Nigel Evans (“There is always going to be a need for secure units, so I don’t see how every patient can be released into the community quite frankly. And I don’t really see the benefit of moving patients to smaller units around the country, as I’d still say there’s a need for big and more centralised institutions so that economies of scale kick in. My belief is that Calderstones is essential.”)
•           the local councillor Terry Hills (“There have been concerns historically about patients ‘getting out’ of the site, but I don’t think there have been any issues for a while. I wouldn’t say Calderstones is an asset to the village, it’s just been there for many many years. Undoubtedly it would have a big impact were it to close, as they employ a lot of people, but my main concern is where would the patients go?”)
•           and the local Clinical Commissioning Group (“We are not aware of any plans to close the trust at all, however we are monitoring the situation very closely, noting that the trust is nationally recognised as a specialist forensic learning disability service”.).

Exhibit C: This week, the CQC published another damning report of a ‘specialist service’, this one private, St Andrews. For their services for people with learning disabilities and/or autism, every single area was rated as requiring improvement (see http://www.cqc.org.uk/sites/default/files/1-102643363_coreservice_services_for_people_with_learning_disabilities_or_autism_st_andrews_healthcare_scheduled_20150107%20%281%29.pdf ). The overall summary is shocking in the range and fundamental nature of the failures in these services.

St Andrews have, of course, ‘welcomed’ the CQC reports (see http://www.standrewshealthcare.co.uk/news/st-andrew%E2%80%99s-welcomes-care-quality-commission-report ). And Manjit Darby, Director of Nursing and Quality for NHS England (Central Midlands), said: “We welcome the CQC’s report into St Andrew’s Healthcare. We have been working actively with St Andrew’s and its health partners to ensure improvements to services and are pleased to note the areas of good practice and progress made to date. As the CQC identifies, there are some areas still requiring improvement and we will continue to work with St Andrew’s to address these for the benefit of patients.”

Calderstones Hospital started as “accommodation for imbeciles and epileptics”, with building starting in1907 (http://www.bbc.co.uk/history/domesday/dblock/GB-372000-435000/page/15 ). St Andrews started life as the Northampton General Lunatic Asylum in 1838 (http://en.wikipedia.org/wiki/St_Andrew%27s_Healthcare ). They’ve survived two world wars, the creation of the NHS and deinstitutionalisation. Cleverness is important, but people up for the fight are essential. If these providers will be singing this (https://www.youtube.com/watch?v=4zQQp_Fvn0k ) we need people who will sing this (https://whobyf1re.wordpress.com/2015/02/10/anthem-for-atus/  ) – written and performed by @KatharineChrome.