Thursday, 18 May 2017

The new restraint: old chains in new guises

In my last blogpost I talked about what the research evidence does and doesn’t say about the lives of people with learning disabilities living in different kinds of places. I also talked about how the research evidence hasn’t kept pace with the corporatized world of speculative 48-bed ‘supported living’ establishments and other such ‘developments’.

[Odilon Redon, 1916, White vase with flowers]

I’ve been hearing quite a lot about these sorts of ‘supported living’ arrangements, what people’s lives are like within them, and what is being done to people to cut costs in the disingenuous names of ‘improving people’s quality of life’ and ‘reducing their dependence’. I’ve also been thinking about how Hillingdon Council have assessed Steven Neary as being subject to a ‘deprivation of liberty’ because he is consistently supported to go about his daily life.

Historically, one very powerful prism that has been used to understand what services are doing to people is institutionalisation. This is derived from the work of sociologist Erving Goffman in the USA, who 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.

In the UK in the 1980s and the 1990s quite a lot of research begun by Norma Raynes and colleagues investigated the extent to which people in long-stay institutions, and various community-based types of housing for people with learning disabilities, were subject to these institutional routines. Although long-stay institutions were always (unsurprisingly) institutional, and smaller, community-based housing services were on average less institutional, being in a small supported living service did not guarantee that your life wouldn’t be constrained by the kind of institutional routines listed above.

Looking at the circumstances people are in now, I think there’s a lot to still be taken from the institutionalisation way of thinking about things, but that applying it wholesale allows service providers and commissioners to wheedle their way out of the consequences of what they’re doing to people (‘Of course we don’t make everyone have a bath at the same time – people have choice about that’ etc etc).

Instead I’d like to propose that what we’re talking about here are forms of restraint. We know people with learning disabilities (both inside and outside inpatient units) can be subject to mechanical restraint (being placed in clothing, chairs etc that restrict people’s movement), physical restraint (being restrained by other people), seclusion (being locked in a room on your own), and chemical restraint (being prescribed unnecessary antipsychotics as a method of sedation). I think we can also talk about restraints on freedom. These might not be acknowledged as such, but these restraints can be seen in their impact on people’s lives. These restraints on freedom took certain forms in big institutional services, but very similar restraints on freedom are cropping up in new guises for people with learning disabilities today.

For example, Goffman talked about people in institutions living their lives under one authority. If a person with learning disabilities is in a ‘supported living’ service where the housing and support provider organisations happen to be the same or are closely linked, in practice this person is living their life under one authority. How easy would it be for this person to move house, or sack the organisation supporting them to find someone better? And if this person doesn’t have a job (highly likely), has very little money to spend, and gets very little support to do anything during the day that they want to do, these restraints add up to something possibly worse in some ways than an institution – from work, play and sleep under one authority to no work and precious little play, leaving a person effectively trapped in their home with nothing to do. A restraint on freedom.

Goffman also talked about institutions involving large numbers of like-situated individuals under one roof. These aren’t people choosing to live together under one roof because of shared liking, interests or ideals. They are people made to live under one roof due to decisions made by an external authority, on the basis of a bureaucratically defined ‘need’. Again, a 48-bedded ‘supported living’ complex, no matter how bijou, is doing exactly this, imposing severe restraints on people’s freedom to determine where they live and who they live with in living spaces that are private. However, these restraints can also apply in much smaller places too, if people have no say in which neighbourhood, village, town or city they live in, the style of their home, and whether they want to share with anyone, on what terms, and who the anyone is.

In terms of restraints on freedom described as institutional routines when people lived in big institutions, no doubt there would be strenuous objections from service providers and commissioners if I were to suggest that people with learning disabilities are subject to block treatment and rigid routines, although initiatives like the excellent Big Bed Time Audit done in Hertfordshire and Calderdale show that block treatment is alive and kicking in services for people with learning disabilities (soon to be published, but some tweets on it can be found here).

But what if people with learning disabilities in a supported living complex all have to be in their flatlets/rooms at a particular time at night? What if everyone supported by a particular service provider, across many different houses, all have to do the same 'work experience'? What if everyone with learning disabilities has to use their 'personal budget' in the form of a pre-payment card, only usable with a restricted set of 'approved' services? These are restraints on freedom in the form of block treatment, even if they are distributed across all the services provided by a particular organisation or across everyone living in a particular local authority.

The same is the case with rigidity of routines. What if people only get any support to go out and do stuff at fixed hours and days of the week, meaning that people have to leave a gig at 9pm (see Stay Up Late’s recent survey on this), or they don’t get to see a film at the cinema they want to because a support worker isn’t available when the film’s on? What if people get a home visit involving personal care, at a particular time, that isn’t long enough to get people feeling like they’re ready for action? For me, these are restraints on freedom in the form of being subject to rigid routines imposed by others for bureaucratic convenience, in new forms that are cloaked and officially deniable.

Perhaps most frightening to me is the way that services are increasingly being set up in ways that depersonalise people with learning disabilities and set up an ever increasing social distance between people with learning disabilities and others supposed to be there to support them. The role of people as supporters is being systematically eroded and being replaced by various forms of remote surveillance in the names of assistive technology or telecare.

Look at the ‘Just Checking’ website for one example of such technology being used in an increasing number of ‘supported housing’ services across England – there are many others too. Sleep-in staff are being replaced by ‘Just Checking’ technology, which as far as I can tell records whether people are opening or closing doors at night or are getting out of bed, with one Just Checking member of staff remotely keeping an eye on all this information from multiple houses. Quite what pattern of door opening and closing would merit an intervention, what this intervention would be, and what would happen if two people in different houses opened their doors inappropriately simultaneously, is unclear. As far as I can tell, I can’t see any evidence presented in the case studies on the website that people with learning disabilities prefer Just Checking to being able to talk to someone, or that it improves the lives of people with learning disabilities in any tangible way. There is lots of detailed evidence on cost savings, however. The front page of the site sets up the extreme depersonalisation and social distance involved – your options are ‘For A Loved One’ or ‘For Care Professionals’ – a ‘For You’ option doesn’t exist.

And how does a person with learning disabilities ask for help, or have someone to chat to if they’re worried about something? How do people have secure, ongoing relationships with people supporting them, to find out shared interests, do things together, grow and develop as people? To me this increasing social distance and depersonalisation are severe restraints on people’s lives, by not providing the human contact and respect that everyone needs to make the most of their lives.

Taking these together, I was thinking about Mark and Steven Neary, and how Hillingdon has decided that Steven’s excellent support to live the life he wants and to support him in growing and developing as a person constitutes a deprivation of liberty. Like Mark, I think it’s the exact opposite. Taking away Steven’s home, forcing him into some ‘supported living’ service with people he doesn’t know, taking away the people who know and care about him, would be subjecting him to severe restraints on his freedom.

Wherever people are living, I think a crucial test for any organisation commissioning or providing support is the extent to which their practices are acting as restraints on people’s freedom, in the ways I've tried to describe above and in other ways too. These restraints need to be broken just as much as other forms of restraint. If people were not being subject to such restraints, you would expect to see variation and diversity in how a population of people with learning disabilities are living their lives, as they become the authors of their lives rather than having the book of their lives written by someone else. Sounds good to me.

Sunday, 14 May 2017

The ghost of evidence past, present and future - Stinky Pete speaks

I’m worrying about the increasing rate at which people contact me to ask if there is any evidence that small, community-based housing is associated with better lives for people with learning disabilities compared to care homes and institutions. My first realisation is that I’m now into the ranks of the academic Stinky Pete old-timers, whose fading memories are dredged for ancient scrolls beyond the reach of a SIRI request (“I did research on this 20 years ago, young grasshopper…”).

My bigger worry, however, is that this generational forgetting leaves organisations who should really know this stuff defenceless against waves of attacks on the very idea of independent living (in a disability rights sense) coming from some ‘service providers’ building 48-person ‘supported living units’ (see Mark Neary’s recent blogpost about this ) and local authorities looking for reasons to warehouse people on ground of economies of scale (see this NDTi blog from Rob Greig ).
So, a quick recap on what the evidence says. There has been loads of research about this across the UK and other countries, most of it linked to the closure of the big long-stay hospitals but some of it looking at different ways of supporting people with learning disabilities beyond long-stay hospitals. Most of this research, in the UK at least, is at least 10 years old.

The table below (from a systematic review by Walsh and colleagues, published in 2010) summarises what the research evidence from 67 research studies said at the time (I don’t think it would be much different now), either from studies that had followed people out of long-stay institutions (the ‘deinstitutionalization studies’) or from studies that had compared people living in different types of community-based housing (the ‘postdeinstitutionalization’ studies – never use one word when one REALLY LONG word will do instead).

There were/are a lot of gaps in the research evidence, but what is obvious from this table is that institutions are never, ever better in any aspect of people’s lives than community-based alternatives (the mortality evidence comes from one set of Californian studies where the methods used to derive the conclusions have been hotly contested). In a few areas of people’s lives (‘challenging behaviours’, for example), community-based housing support services are no better than long-stay institutions. But in most areas of people’s lives (like people using the skills they have, more choice over aspects of their own lives, doing more stuff inside and outside the person’s home, and people being more socially connected), life outside long-stay institutions is better.

Also, for many (but not all) aspects of people’s lives (like exercising more choice, more social connections, doing more outside the home, possibly more physical exercise), smaller supported living houses are better than larger residential care homes or group homes.

So far, so straightforward. But there a few things to remember. In the research evidence reviewed here, lots of important stuff (like people’s disposable income, or what people think of their neighbourhoods) was hardly measured. Using long-stay institutions as a basis for comparison also sets the bar very low – it doesn’t take much to show someone’s life is better than in an institution, although that person’s life may be way short of what they, you or I would consider to be a decent quality of life. 

A third thing is variation. There was very little variation across different long-stay institutions – people’s lives on the measures used in these studies were consistently not good (I’m trying to be measured here). In residential care homes and supported living services, however, there was a lot of variation in people’s lives across different homes supposed to be of a similar ‘type’, such that for some people life in a care home or supported living would be indistinguishable from life in a long-stay institution. Why do some people in similar-looking places have better lives than others? 
Unsurprisingly the biggest factor is how well people are supported to get involved, active, and do the things they want to do. It also seems that people who need more support to do stuff or people with ‘challenging behaviour’ are less likely to get support that enables them to have a really good life.

Is any of this relevant to where we’re at now? Well, yes and no. Although I can’t believe this needs to be restated, long-stay institutions are really bad places for people to be. Overall, it’s also the case that smaller is better. But living in an ordinary house is not enough – people need others to support them in ways that people actually find useful, rather than obstructive. To me, ‘specialist housing’, with rounded edges or whatever wannabe service providers are claiming is necessary for people with learning disabilities, really seem to be expensive and unnecessary – more decent accessible housing open to anyone where people with learning disabilities have legal rights as tenants or owners is much more efficient in all sorts of ways.

There are also an awful lot of gaps. When this research was done, the very idea of a 48-bed ‘supported living’ unit would have been seen as an oxymoron. As an excellent series of recent NDTi reports has shown (see for the first one), old ways of classifying ‘service types’ are becoming in some senses meaningless, certainly to the people living in them. Is a 48-bed supported living unit an institution, an ensuite residential care home, supported living, an intentional community, or what? The only way to find this out is to find out what people’s lives are like, and how people are being supported to live their lives vs what barriers/restraints are being imposed on people that get in the way.

Research in the UK about this, with a couple of honourable exceptions, has severely dwindled and not kept pace with how services are changing. Perhaps even worse, why aren’t local authority commissioners collecting or demanding this kind of information before they start making disingenuous cases for warehousing people? Why aren’t more big service providers collecting proper information about the impact of their own services on people’s lives and how to improve what they do? These people claim to be specialists – well, show your evidence or shut up with your disingenuous quality of life talk as a cloak for disinvesting from people’s futures.


Walsh PN, Emerson E, Lobb C, Hatton C, Bradley V, Schalock RL, Moseley C (2010). Supported accommodation for people with intellectual disabilities and quality of life: an overview. Journal of Policy & Practice in Intellectual Disabilities, 7(2), 137-142.

Friday, 14 April 2017

It takes a nation of millions...

A long time ago, after yet another gloomy parade of statistics, someone (I think it was Martin Coyle? Apologies if it wasn’t you Martin, or even if it was, for dragging you into this) asked me if I was in any hopeful about the future, and to write a blog about it. Well, after a long time and a lot of gloom in the middle, here it is. My grounds for hope are quite straightforward. It’s seeing and working with people with learning disabilities who are, in all sorts of different ways, working for freedom, for themselves, for other people with learning disabilities, and in common cause with others.

People campaigning and people going down the insider route. People who challenge oppression wherever they see it, persuasively and without bitterness. People with energy and resilience to keep going in hard times. People doing the media thing with force, clarity and charm. People who come up with creative solutions when sclerotic bureaucracies are stuck. People with persistence and impressive patience in the face of organisations that repeat the same offensive crap over and over again. People who can transform a conversation in a room without saying a word. People who are honest, trustworthy and reliable. Incredibly persuasive people who bring all lots of reluctant organisations with them. People who give a huge amount of time, commitment and emotional energy while being poorly paid or not paid at all. And people who have a good time while they’re doing it. 

If you want to find effective organisations working to achieve social change in the face of sometimes extreme pressure, organisations of people with learning disabilities are an excellent place to look.

For us professional fellow travellers, and for me personally, I’ve been very slow to realise what my job should really be – to support this remarkable coalition of people in ways and on terms not determined by me, which includes the possibility of being binned if I’m getting in the way.

In the words of Public Enemy, it’s taking a nation of millions to hold people with learning disabilities back, and you know what? In the end, it won’t work. People with learning disabilities will move beyond co-production to controlling the means of production. There’s my hope (believe the hype).

Friday, 31 March 2017

Mission Invisible

I watched the Public Accounts Committee session about ‘Care for people with learning disabilities’ earlier this week, which asked questions both about the progress of Transforming Care but also more widely about support for people with learning disabilities. Transcripts of the oral evidence session can be found here and you can watch the session here.  The National Audit Office report upon which much of the questioning was based is here

It put me in a very bad mood, and it took me a while to articulate what this was about. I think what got to me was my impression of the complete absence of people with learning disabilities, or it being in anyone’s mind at any point that people with learning disabilities could/should be agents of their own destinies and have power over anything. But my impressions, anyway, can be quite wrong, so I thought, in true nerd fashion, I would test out this impression with a bit of quantitative analysis of the transcript of the session. Here goes…

Public Accounts Committee
Oral evidence: Care for people with learning disabilities, HC 1038
Wednesday 29 March 2017
The session started at 10.09am and finished at 12.11pm (just over 2 hours)

Number of people involved in the oral evidence session:
  • 7 MPs asking the questions

  • 1 parent of a person with learning disabilities
  • 6 professionals (2 from large service providers, 2 from NHS England, 1 Department of Health civil servant, 1 from the Association of Directors of Social Services)
  • 0 people with learning disabilities

Number of mentions of advocate(s), advocacy or related terms in the session

  • 12 mentions of professional advocacy
  • 9 mentions of family advocacy
  • 3 mentions of advocacy from senior professionals/civil servants
  • 0 mentions of people with learning disabilities being advocates
  • 0 mentions of self-advocacy or peer advocacy

Number of mentions of complex, complexity or related terms

  • 10 mentions of complex needs or similar located within people with learning disabilities
  • 5 mentions of complex systems surrounding people
  • 2 mentions of complexity of getting information

Number of mentions of forum (as in National Forum) or related terms

  • 0

Number of mentions of discrimination or related terms

  • 0

Number of mentions of co-production or related terms

  • 0

Number of mentions of right, rights or related terms

  • 38 mentions of right (versus wrong) – e.g. right direction
  • 6 mentions of right (in terms of time or direction) – e.g. right now, on the right
  • 1 mention of right (as in human or legal rights) – in a question from the Chair of the Public Accounts Committee

Overall, I think this confirms my impression of the session that people with learning disabilities as authors of their lives with human rights were completely absent (physically and in the thinking of people present). Bad, bad mood.

Thursday, 2 March 2017

Chuck it in the bin(ary)

As a public service, please find my all-purpose table of binaries below. You're welcome!

Wednesday, 8 February 2017

It's institutional disablism - deal with it

Today saw the publication of a landmark study by Australian academics Julian Trollor, Preeyaporn Srasuebkul, Han Xu and Sophie Howlett on deaths amongst a cohort of 19,362 people with learning (intellectual) disabilities in New South Wales, Australia. Their findings are in BMJ Open here, and are free to download and read. This article in the Sydney Morning Herald is also a really good summary, and there is an easy read summary here.

Their findings are depressingly familiar. The median age of death (the age at which half of all deaths had occurred) for people with learning disabilities was 54 years (55 years for boys/men; 52 years for girls/women). This was 27 years younger than the median age of death of 81 years reported for the rest of the population. Over three-quarters of the deaths of people with learning disabilities (76%) occurred before the age of 65, compared to just 18% of the deaths of other people. Adults with learning disabilities aged 20-44 were four times more likely to die than the rest of the population of the same age.

The researchers also used death certificates to investigate what had been recorded as the causes of death for people with and without learning disabilities. The most common underlying causes of death for people with learning disabilities were respiratory system illnesses (often infections; 20% of people), problems with the circulatory disease (such as strokes, 18% of people), cancers (18% of people), nervous system problems (such as epilepsy, 13% of people), and injury/poisoning (6% of people).

The researchers concluded that over a third of deaths of people with learning disabilities (38%) were potentially avoidable, meaning that health services could have done something to prevent the health problem developing and/or stop the death from happening. This compares to 17% of the deaths of the rest of the population being classed as avoidable. One shocking detail in the paper is that when they first looked at the death certificates of the people with learning disabilities, the main cause of death on the certificate had been recorded as the person’s learning disability itself on 16% of the certificates (102 out of 637 where certificates were available) – so for 49 people their main cause of death was recorded as ‘Down syndrome’. This isn’t even taking into account the 13% of people (95 people) with learning disabilities where the researchers couldn’t find any record of cause of death at all.

Why did I write that these findings are depressingly familiar? Because similar findings have been found in other countries, wherever people have looked. In England (see Chapter 3 here for a free recent summary), the median age of death for people with learning disabilities is 13-20 years younger for men and 20-26 years younger for women compared to the general population, with the gap in life expectancy not closing over time. There are consistent gaps in age of death for people with learning disabilities compared to the general population reported in the USA, Canada, Ireland and Germany, with some variation in just how yawning the gaps are.

The most common causes of death of people with learning disabilities are also similar across countries, and people with learning disabilities are more likely to die potentially avoidable deaths. For example, in England nearly half of the deaths of people with learning disabilities (49%) were avoidable, compared to just under a quarter (24%) of the deaths of the general population. The recording of a person’s learning disability as a cause of death on death certificates has also been reported in the USA and the UK.

In England, in large part due to the #JusticeforLB campaign and other campaigners, health service ‘regulators’ have begun to pay reluctant attention to the deaths of people with learning disabilities within health services, and how health services do or don’t investigate people’s deaths. The shocking report by Mazars into how Southern Health NHS Foundation Trust (the health service where LB died) determinedly and repeatedly didn’t investigate the deaths of people with learning disabilities who died in their ‘care’ laid out just how a health organisation can operate in ways to deny reality and systematically denigrate anyone who tries to bring a dose of reality to their proceedings.

One of the broader health service institutional ‘responses’ to this report was a piece of work by one of England’s health service regulators, the Care Quality Commission, looking at how health services investigated the deaths of people with learning disabilities and/or mental health issues. This resulted in the report Learning, Candour and Accountability published in December 2016. Over time I more and more have the sensation of being shocked but not surprised at these kinds of reports. The CQC summarised the main findings like this: “We weren’t able to identify any trust that demonstrated good practice across all aspects of identifying, reviewing and investigating deaths, and ensuring that learning is implemented”. More specifically:
  • “We found that families and carers often have a poor experience of reviews and investigations, and are not always treated with kindness, respect and sensitivity.”
  •  “We found inconsistency in the way organisations become aware of the deaths of people in their care, with no clear systems for a provider that identifies a death to tell commissioners or other providers involved in the person's care.”
  •  “Healthcare staff use the Serious Incident Framework to help them decide whether a review or investigation is needed. But this can mean investigations only happen if a serious incident has been reported, and the criteria for deciding to report an incident and the application of the framework both vary.”
  •  “The quality of investigations is often poor and methods set out in the Serious Incident Framework aren't applied consistently. Specialised training and support aren't given to all staff carrying out investigations. There are problems with the timeliness of investigations and confusion about standards and timelines set out in the guidance.”
  •  “There are no consistent frameworks or guidance requiring boards to keep all deaths under review, and boards only receive limited information about the deaths of people using their services. When they do receive information, they often don't challenge the data effectively. Where investigations take place, there are no consistent systems to make sure recommendations are acted on or learning is shared.”

So, despite national frameworks and guidance on investigating and reporting deaths, and a generally high national profile on candour and accountability since the Francis report into mid-Staffs, the entire health service and regulatory system operates in a way that makes the deaths of people with learning disabilities invisible and unaccountable. And these aren’t random variations in practices where there is uncertainty about what to do; they are practices heavily weighted towards the extremely shoddy end when it comes to the deaths of people with learning disabilities.

Isn’t this surely a basic, convincingly evidenced indicator of systemic institutional disablism? I’m using this phrase as analogous to the phrase ‘institutional racism’ used by Sir William McPherson in his judicial inquiry into the death of Stephen Lawrence. Institutional racism was defined in the inquiry as:

“The collective failure of an organisation to provide an appropriate and professional service to people because of their colour, culture, or ethnic origin. It can be seen or detected in processes, attitudes and behaviour which amount to discrimination through unwitting prejudice, ignorance, thoughtlessness and racist stereotyping which disadvantage minority ethnic people”.

Within the wide array of health services in England (and likely in other places too, given the international similarities in evidence concerning the health inequities experienced by people with learning disabilities), isn’t this what we’re seeing when it comes to people with learning disabilities? (I’m fairly certain similar arguments could and probably have been made with respect to other groups of people, such as people with mental health issues, other groups of disabled people, or older people with dementia). I’ve added ‘systemic’ because it’s not a single organisation, and I'm aware there are issues around the use of 'disabilities' rather than 'impairments' that need more careful thinking through:

Systemic institutional disablism is the collective failure of organisations to provide an appropriate and professional service to people because of their learning disability. It can be seen or detected in processes, attitudes and behaviour which amount to discrimination through unwitting prejudice, ignorance, thoughtlessness and stereotyping which disadvantage people with learning disabilities.

So, systemic institutional disablism isn’t only actions and behaviours that are overtly discriminatory , although as the news report of the Australian study, the Confidential Inquiry in England, and any number of the experiences of people with learning disabilities and their families show, some health professionals seemingly don’t have a problem expressing overt discrimination. Institutional discrimination can be unconscious, and can be tracked through its systematic effects on the treatment (or otherwise) of people with learning disabilities. A quick random list of evidence for systemic institutional discrimination of the health system concerning people with learning disabilities (these are for England, but there is evidence for some of these in other countries too):
  • People with learning disabilities often aren’t identified as such within mainstream hospital services, making it difficult to monitor the presence or absence of discrimination in how people are treated.
  • Although primary care general practitioners in England have been financially incentivised for some years to provide annual health checks for people with learning disabilities, only about half of people with learning disabilities actually get a health check.
  • People with learning disabilities experience lower rates of screening for all cancers compared to people without learning disabilities.
  • People with learning disabilities experience delays in the identification and treatment of health problems.
  • People with learning disabilities living in community settings are far, far more likely to be prescribed antipsychotic medication in the absence of a relevant diagnosis than people without learning disabilities.
  • People with learning disabilities are more likely than other people to experience emergency admissions to hospital for health problems such as constipation that, if well-managed, shouldn’t result in the person needing to go to hospital at all.
  • Reasonable adjustments to hospital services for people with learning disabilities are not consistently or reliably provided.
  • Despite five years of government policy, the number of people with learning disabilities in inpatient services is not reducing, and whilst in inpatient services people with learning disabilities are highly likely to be prescribed antipsychotic and tranquilising medication, and experience physical restraint, seclusion, and physical assault.
  • People with learning disabilities die much younger than other people, where a much higher proportion of their deaths are potentially avoidable.
  • Deaths of people with learning disabilities in health settings are extremely unlikely to be properly investigated.
  • People with learning disabilities are much less likely to be involved in research about effective health interventions.

Does it matter if we call this out as systemic institutional disablism? I think it does. One of the things that disappointed me about the CQC Learning, Candour and Accountability report is that it identified the issues very clearly, but couched its recommendations in terms of technical changes to systems, on the assumption that systemic poor practice is a function of professional lack of knowledge, inattention and honest confusion. In England there have also been multiple initiatives to improve various aspects of healthcare for people with learning disabilities, all operating on similar assumptions.

But I think there is something crucial missing. Professionals within health systems have had sufficient evidence for some now – ignorance and inattention can no longer be used as reasons/excuses – indeed they can be seen as further signs of institutional disablism. As can be seen from the Home Affairs Committee report into McPherson – 10 years on, the term institutional racism was resisted by many in the police and has been the cause of deep discomfort. Progress in response to the McPherson inquiry has also been patchy and uneven. But this discomfort, self-questioning, and willingness to see the systemic whole in terms of institutional disablism is urgently needed if health services are to achieve any much-vaunted step changes in how people with learning disabilities and their families are treated. Isn’t seeing the problem the first step?

Wednesday, 1 February 2017

Security blanket

In the ongoing debate about the Transforming Care programme in England, a distinction is often made between inpatient services described as Assessment and Treatment Units (ATUs) and inpatient services variously described as secure and/or forensic. The argument sometimes follows from this that Transforming Care should be focused on reducing/closing the number of ATU places (largely commissioned by CCGs), because secure/forensic inpatient services (largely commissioned by NHS England specialist commissioning teams) are always going to be needed for some people with learning disabilities and/or autism. Personally, I’m not sure such a sharp distinction is possible, desirable, represents reality, or necessarily means that we need the amount of secure/forensic inpatient services that exists today.

In this blogpost I want to describe the range of inpatient services that exist, using Assuring Transformation data collated and analysed by NHS Digital. The Assuring Transformation dataset presents ongoing monthly information about inpatient services for people with learning disabilities and/or autism, collected from health service commissioners. While I think it under-represents the total number of people with learning disabilities and/or autism using inpatient services (see here for why), it does contain a lot of valuable detail about inpatient services and the people within them. As well as describing these services, I’m also interested in any clues we can find to support the distinction between ATUs and secure/forensic services.

The first graph below shows the number of people with learning disabilities and/or autism in different types of inpatient service (as labelled in the Assuring Transformation dataset), for March 2015, December 2015, May 2016 and November 2016. In November 2016, the most common type of inpatient service was ‘secure forensic’, containing (a word I use advisedly) around half of all people within the Assuring Transformation dataset (1,725 people, 50.6%). ‘Acute learning disability’ services (in effect ATUs) contained 460 people (18.3%), followed by complex care/rehabilitation services (330 people; 13.1%). ‘Forensic rehabilitation’ services weighed in with 120 people (4.8%), 155 people (6.2%) were in ‘acute generic mental illness’ inpatient services, and a further 180 people (7.1%) were in inpatient services described as ‘other specialist’ or ‘other’. The extent to which some of these esoteric distinctions between service types is meaningful, particularly to the people placed within them, is a question there to be asked, I think.

While the overall trend is pretty flat, from March 2015 to November 2016 it looks like there are some trends over time for some specific types of inpatient service. The use of acute generic mental illness, complex care/rehabilitation, and other inpatient services seems to be increasing, while the use of forensic rehabilitation and other specialist inpatient services seems to be decreasing. Trends for the most common types of inpatient service over time, secure forensic and acute learning disability, are unclear. 

Another way of looking at the nature of inpatient services is to look at the security level of the places where people with learning disabilities and/or autism are put, as in the graph below. In November 2016, nearly half of people (1,195 people; 47.3%) in inpatient services were in ‘general’ (i.e. not secure) inpatient services, and a small number of people (50 people; 2.0%) were in PICUs (Psychiatric Intensive Care Units, which are secure). Well over another quarter of people (740 people; 29.3%) were in low secure services, 475 people (18.8%) were in medium secure units, and another relatively small number of people (65 people; 2.6%) were in high secure services.
Over the relatively short period of time reported in these statistics, the number of people in low secure services seemed to be decreasing, while the number of people in general (not secure) and medium secure services seemed to be increasing.

The next graph below shows the legal status of people with learning disabilities and/or autism in inpatient services. In November 2016, 250 people (9.9%) were in inpatient services ‘informally’, i.e. not legally detained under Section according to the Mental Health Act (MHA). Around half of people (1,720 people; 50.4%) were detained under Part II of the Mental Health Act (compulsory admission to hospital, usually for assessment and/or treatment). A further 355 people (14.1%) were detained under the more serious Part III of the Mental Health Act (but without restrictions imposed by the Ministry of Justice), and almost a quarter of people (595 people; 23.6%) were detained under Part III of the Mental Health Act with restrictions imposed by the Ministry of Justice. Part III of the Mental Health Act involves ‘patients concerned in criminal proceedings or under sentence’. Finally, a small number of people (50 people; 2.0%) were detained using other parts of the Mental Health Act.
Over time, the number of people ‘informally’ in inpatient services has decreased, while patterns for people legally detained under various sections of the Mental Health Act over time are unclear.

 So far this post has shown the types of inpatient service that people are in, their levels of security, and the legal status of people within them. All of these show a very diverse picture. Are there any clues about whether services that are more secure/forensic are clearly different from services that are less secure?

The Assuring Transformation data analysis offers a couple of hints. The first is in the graph below, which shows for November 2016 the legal status of people within inpatient services at different levels of security. If more secure/forensic services are doing the job claimed for them, we would expect most people within them to be under Part III sections. We would also expect general/low secure inpatient services not to have people under Part III sections (particularly those with Ministry of Justice restrictions), as services at this level of security shouldn’t be able to manage people with these apparent levels of ‘risk’.

The graph below does show that medium and high secure services do largely contain people sectioned under Part II and Part III of the Mental Health Act. Low secure units have a similar profile to more secure units, although the numbers of people in low secure units are greater overall (there are as many people in low secure units under Part III sections with restrictions as there are in medium and high secure units combined). Even general inpatient units, while weighted more towards people there ‘informally’ or with Part II sections, still contain substantial numbers of people with Part III sections, both without restrictions (80 people) and with restrictions (120 people).
This information certainly shows that most people under Part III sections are in general/low secure services (600 people) rather than medium/high secure services (350 people). Is this because there aren’t enough medium/high secure inpatient services and they are desperately needed, or is it because less restrictive options are possible (most importantly, outside inpatient services altogether)?

One final graph below in this graphtastic post – the security level of inpatient services by the total continuous length of time people have spent in inpatient services (including being transferred between them). While this post so far has been about the claims to specialism of secure inpatient services, this final graph speaks to the ‘assessment and treatment’ claims of non-secure ‘acute’ learning disability inpatient services. If that is what these services do, why on earth are there 350 people in general (non-)secure units (29.3% of people in general non-secure units) who have been in inpatient services for 5 or more years? Why are there a further 405 people (33.9% of people) who have been in general non-secure inpatient services for a year or more? Or, to put it another way, why are nearly half of all people who have been in inpatient services for 10 years or more (175 out of 370 people; 47.3%) in general (non-)secure inpatient services, if they represent such a terrible risk?

Overall, it really doesn’t look like the different parts of the learning disability inpatient service complex are highly specialist and set up to deal effectively with different groups of people with different problems. Looks like we need assessment and treatment of the complex inpatient service system itself – why is the challenging behaviour of this system so persistent? A first start would be to ask what functions does this system serve, and for whom? Cui bono?

Wednesday, 18 January 2017

The riddle of the model 2: Unnatural variation

This is just a quick follow-up to yesterday's post about trends in residential and nursing care for adults with learning disabilities, prompted by Steve Broach's typically perspicacious question about variations in residential and nursing care across different local authorities in England. So, here are a few bits and pieces from another look at the NHS Digital data.

First, the two big graphs below (they wouldn't fit into one, I discovered) are simply the numbers of adults with learning disabilities aged 18-64 and 65+ in residential and nursing care homes during 2015/16, by individual local authority. It's important to realise that these are numbers of people (rounded to the nearest 5), not rates of people in residential or nursing care per 100,000 population. Obviously, local authorities with bigger populations might be expected to report larger numbers of people in all types of service. [I've tried making the graphs extra large in Blogger in the home that people can expand them on their devices - if not, do shout, as they're pretty weeny].

Second, the next graph shows the same information (so on numbers of people rather than rates) broken down by region rather than local authority.

Last, the two snippets below come from the @ihal_talk publication People with Learning Disabilities in England 2015, and relates to 2013/14 information rather than 2015/16 information [conflict of interest note - I was responsible for putting this report together], although the variation would be very similar for 2015/16. This analysis of variation in usage of residential care is based on rates of placement of people in residential care homes rather than raw numbers, and shows quite extreme variation across local authorities in how much they use residential care.

Be careful what you wish for Steve!

Tuesday, 17 January 2017

The riddle of the model

The riddle of the model*

There have been a number of straws in the wind (and sometimes more than just straws) that commissioners of health and social care, aided and abetted by ‘care’ service providers, are looking for ways to move more people with learning disabilities (and disabled people generally) into residential and nursing care. This blogpost simply aims to provide some statistics on the number of adults with learning disabilities in England in residential and nursing care, and how much local authorities are spending on these types of service. I think my main conclusion is that, although residential and nursing care may be coming back, they’ve never really gone away.

In 2015/16, local authorities were funding 30,240 adults with learning disabilities in residential care services, and a further 1,815 adults with learning disabilities in nursing homes (all data in this blogpost are from NHS Digital). The graph below shows that the overall trend over time is broadly downwards (this graph includes 1,870 adults with learning disabilities in residential or nursing care transferred from NHS to local authority funding in 2011/12).

The second graph below shows the same information for adults with learning disabilities aged 18-64 years old (this doesn’t include the NHS-LA transfers, as we don’t have this information broken down into age bands). Again, there’s a downward trend over time, but in 2015/16 there were still 24,775 working age adults with learning disabilities in residential care and 1,075 people in nursing care.

The third graph below shows the same information for older adults with learning disabilities, aged 65 years or more. The picture here is different, at best flat over time (assuming the hike in 2011/12 is due to the NHS-LA transfer) and possibly increasing. The increase from 2013/14 to 2015/16 is particularly difficult to explain; the way the information was collected changed at that time point but this led to a big overall reduction in the number of adults with learning disabilities getting social care support reported in the statistics. Why this would result in an increase in the number of older people recorded as using residential or nursing care is puzzling, unless local authorities starting recording for the first time older people with learning disabilities placed in generic older people’s care homes? Overall, in 2015/16 there were 5,465 older adults with learning disabilities in residential care, and a further 740 people in nursing care.

 The fourth and final graph below shows how much localauthorities were spending on residential and nursing care for adults with learning disabilities in 2014/15 and 2015/16 (these are the first years for which spending information on older people with learning disabilities is available). In 2015/16, local authorities were spending £1.7 billion on residential care and £60 million on nursing care for adults with learning disabilities aged 18-64 years. They were also spending £246 million on residential care and £25 million on nursing care for adults with learning disabilities aged 65 years or over – a grand total of just over £2 billion per year.

From the figures above, we can work out rough unit costs for each type of care. Per person with learning disabilities per year, local authorities are paying…
·        £68,525 for residential care for adults aged 18-64 (£1,318 per week)
·        £56,093 for nursing care for adults aged 18-64 (£1,079 per week)
·        £44,922 for residential care for adults aged 65+ (£864 per week)
·        £33,243 for nursing care for adults aged 65+ (£639 per week)

Quite why older people have cheaper support needs than younger people, and specialist nursing care is apparently cheaper than residential care, is beyond me, but the reasons for a push by commissioners towards models of care for adults with learning disabilities that look like nursing care homes for older people is becoming clearer.

So, residential and nursing care has never gone away. Rates of placement in residential and nursing care are already much higher for adults with learning disabilities in England (at 67.5 adults per 100,000 adult population) than in Scotland (42.0 adults per 100,000 population) or Wales (51.2 adults per 100,000 population) (Hatton, 2017). The scale of local authorities’ continuing reliance on residential and nursing care can be summarised in these final few facts (from 2015/16 figures):

·        21.5% of all adults with learning disabilities aged 18-64 getting long-term support from their council are in residential or nursing care
·        42.1% of all adults with learning disabilities aged 65+ getting long-term support from their council are in residential or nursing care
·        19.4% of all adults with learning disabilities in residential or nursing care are aged 65+
·        39.7% of all long-term social care support expenditure on adults with learning disabilities aged 18-64 is on residential or nursing care
·        50.0% of all long-term social care support expenditure on adults with learning disabilities aged 65+ is on residential or nursing care

In the words of Sing Street (almost), I will never unravel, the riddle of the (residential and nursing care) model.

[Updated to include the sources of the data and specific links to where to find them. Many apologies to NHS Digital for not mentioning this in the first place]

* I’ve only just caught up with the excellent Irish film Sing Street, in which our not-quite-inept-enough 1980s teenage hero forms a band so that a girl he fancies will appear in the video of their first song, The Riddle Of The Model. If you haven’t seen I’d highly recommend it (a taster is here ).

Friday, 13 January 2017

How many people with learning disabilities are really in inpatient services?

I’ve wittered on in too many previous blogposts about what the statistics are telling us about the number of people with learning disabilities and/or autism in inpatient services in England, and how NHS England claims of reductions look to me somewhat premature. So, with Transforming Care Plans springing into action, is the picture finally looking brighter? (as opposed to the future being orange, which as we now know does not mean brighter except in a malfunctioning TV kind of way)

Well, in this blogpost I’m going to share statistics that lead me to think the picture is much worse than I thought. New analyses from the good people at NHS Digital (together with some old analyses from them that I shamefully missed, thank you to Tim Williams at Reading University for drawing my attention to the relevant table) strongly indicate that there are many more people with learning disabilities and/or autism using inpatient services than NHS England typically mention in their reports of progress.

Compared to five years ago, we generally now have much better information about people with learning disabilities and/or autism in inpatient services, and there are now multiple sources of relevant information. The one that NHS England regularly cites is the Assuring Transformation dataset, updated monthly by NHS Digital. This reports information provided by commissioners (CCGs and NHS England specialist commissioners) about how many people with learning disabilities and/or autism they’re paying for in inpatient services (along with lots of other information about them and the service people are getting). The Assuring Transformation dataset (with some wrinkles due to retrospective reporting) generally reports 2,600-2,800 people in inpatient services.

From 2013 to 2015, there was also the Learning Disability Census, which collected detailed information annually from inpatient service providers on how many people with learning disabilities and/or autism were in inpatient services on a particular census date.

More recently, there is the Mental Health Services Dataset (MHSDS), replacing and adding to the previous Mental Health and Learning Disabilities Dataset (MHLDDS), which provides detailed monthly information from a wide range of providers of mental health and community services.
Just before Christmas (are they not allowed holidays?), along with other analyses of the MHSDS, NHS Digital produced a report comparing data from the Assuring Transformation dataset and the MHSDS, based on figures for September 2016. 

At the end of September 2016, Assuring Transformation reported 2,600 people with learning disabilities and/or autism in inpatient services. At the same time, the MHSDS reporting 3,590 ward stays of people with learning disabilities and/or autism in mental health/learning disability inpatient services.

Why the difference? Much of it may be that many people with learning disabilities and/or autism are spending relatively short amounts of time in general mental health inpatient services, which would be picked up by mental health service providers in the MHSDS but is not picked up by commissioners in Assuring Transformation. Consistent with this, for some NHS Trusts, many more people with learning disabilities and/or autism are reported in the MHSDS dataset than the Assuring Transformation dataset (e.g. Nottinghamshire Healthcare 90 people in AT vs 315 people in MHSDS; West London Mental Health Trust 15 vs 140 people; Oxleas 25 vs 120 people; Mersey Care 155 vs 235 people; Rotherham, Doncaster & South Humber 35 vs 185 people; Kent & Medway Partnership Trust 30 vs 265 people). 

I’m more puzzled by a small number of NHS Trusts where more people with learning disabilities and/or autism are reported in the Assuring Transformation dataset that the MHSDS, for example Hertfordshire Partnership Trust (110 people in AT vs 80 people in MHSDS) and Coventry & Warwick Partnership Trust (75 people in AT vs 5 people in MHSDS).

There are similar differences in independent sector inpatient provider organisations. Some of the biggest organisations report much larger numbers of people with learning disabilities and/or autism as inpatients in the MHSDS compared to Assuring Transformation, such as Partnerships in Care (275 people in AT vs 390 people in MHSDS) and St Andrews (205 people in AT vs 305 people in MHSDS). Is this because these organisations have people with learning disabilities and/or autism in branches of their inpatient services not identified by commissioners as learning disability/autism inpatient services? 

Again, there are some organisations reporting higher numbers of people with learning disabilities and/or autism in Assuring Transformation than in MHSDS, such as the Priory Group (50 people in AT vs less than 5 people in MHSDS) and Cambian Healthcare (135 people in AT vs 30 people in MHSDS). Why are these inpatient services not counted as mental health services by these organisations (which return information for the MHSDS)?

This is just information from a single point in time, September 2016. I shamefully missed, until Tim Williams drew it to my attention, that NHS Digital did a similar analysis of Assuring Transformation data against data from the Learning Disability Census, for September 2015. In September 2015 there were 2,625 people in inpatient services according to Assuring Transformation vs 3,000 people in inpatient services according to the Census. Only 2,140 people were in both datasets, which by my calculations (excluding places commissioned by organisations outside England) means that in total there were around 3,400 people with learning disabilities in inpatient services in September 2015.

What conclusions do I draw from this?
  1. Most obviously, there are likely to be many more people with learning disabilities and/or autism using ‘specialist’/mental health inpatient services than Assuring Transformation makes visible – something like 3,500 people in inpatient services at any one time rather than the 2,600 people reported by commissioners in Assuring Transformation.
  2. Equally obviously, commissioners’ (and possibly providers’) reporting is all over the place, as evidenced by the struggles of Jenny Morris andJane Basham to get any sensible information about inpatient services from theirlocal commissioners or service providers (Norfolk & Suffolk NHS Foundation Trust report 10 people with learning disabilities and/or autism as inpatients in Assuring Transformation, but 50 in the MHSDS dataset, for example). Are these discrepancies pure cock-up or partly some form of gaming relating to meeting Transforming Care targets objectives?
  3. Some of this information suggests that many people with learning disabilities and/or autism may be using generic mental health inpatient services rather than ‘specialist’ learning disability inpatient services. This group of people seems relatively invisible to commissioners and to the NHS England Transforming Care programme, and what’s happening to them needs to be much better understood.