Friday, 7 July 2017

Anarchy in the UK

It was the announcements of proposals for big new inpatient units in Wales, run by private companies, that got me thinking (thinking too late, as usual). While I usually parochially focus on Transforming Care in England, people and their families know to their cost that the ‘market’ in inpatient services is UK-wide, with boundaries between England, Wales, Scotland and Northern Ireland meaning very little to those deciding where people are to be ‘placed’ (I can only think that things like vases of flowers are ‘placed’, not people, things that cannot of course move of their own accord).

[from GIPHY]

Why am I belatedly thinking this is important? A number of things. Devolution has accelerated differences between the four parts of the UK, which presents opportunities for big private companies looking for the best options for the biggest profits. The CQC in England getting a bit tougher on registering (or re-registering) inpatient units? Locate your inpatient units somewhere beyond their reach – Wales, Scotland and Northern Ireland all have their own systems for regulation. Where are potential convertible properties at low prices, or places for new-build that will have the local council falling over themselves to give planning permission? In which part of the UK will ‘step down’ or ‘forensic rehab’ units, or hospitals reregistered as care homes, be just below the notice of pesky national policies to make them lucrative long-term business opportunities?

And for a nerd like myself, these differences make it easier to hide just where people are and where they have come from – again, fertile ground for organisations running inpatient services to operate within (although this is primarily about private sector companies running inpatient services, NHS or equivalent public sector organisations such as NHS Trusts can and do adopt some similar strategies to ‘fill their beds’).

All four parts of the UK have, in the recent past, conducted regular census surveys of people with learning disabilities (and sometimes and/or autism) in inpatient services, or of people in learning disability inpatient services (not quite the same thing). All four parts of the UK do this differently, and as far as I can tell this means that we cannot draw up definitive information about how many people with learning disabilities or autistic people are in ‘specialist’ units in the UK, and where they have come from in terms of their homes and families. I’ll go through each of them in turn.

In England, NHS Digital conducted a Learning Disability Inpatient Census on 30th September for three years: 2013, 2014 and 2015. It has not been continued. This reported on the number of people in learning disability/autism specialist inpatient services which were located in England. For 2015, this census reported that there were 3,000 people in these units, a rate of 5.5 people per 100,000 total population in England. Of these 3,000 people, 2,940 people were from ‘home’ districts in England and 60 people were in English units but their homes were in other parts of the UK. What this census cannot tell us is how many people with learning disabilities or autistic people have their homes in England but have been ‘placed’ in inpatient units outside England, such as Wales or Scotland. The NHS Digital dataset based on returns from English health service commissioners (Assuring Transformation) I think should have this information, but it is not currently publicly reported.
Wales conducts an annual census on 31st March on the number of people with learning disabilities in NHS mental health and learning disability inpatient services located in Wales. In 2016, there were 117 people with learning disabilities in NHS units in Wales, a rate of 3.8 people per 100,000 total population in Wales. This rate is much lower in England. I cannot work out if these numbers include people ‘placed’ in NHS inpatient services in Wales from outside of Wales. However, these statistics exclude Welsh people with learning disabilities who are either in private sector inpatient services (whether in Wales or elsewhere) or Welsh people who are in NHS inpatient services in England. A 2015 inspection report of services for people with learning disabilities in Wales reported that an additional 53 Welsh people with learning disabilities were in these categories. This would make the overall rate of Welsh people with learning disabilities in inpatient service 5.9 people per 100,000 total population in Wales.

Northern Ireland conducts an annual Mental Illness and Learning Disability census on 17th February, including people with learning disabilities in inpatient services run by Health and Social Care Boards (health and social are integrated in Northern Ireland). It also includes people normally resident in the inpatient unit but on home leave on the date of the census. In 2016, there were 125 people with learning disabilities in Health & Social Care inpatient services in Northern Ireland, a rate of 6.8 people per 100,000 total population in Northern Ireland. This is a higher rate than other parts of the UK, but unlike other parts of the UK the number of people in inpatient services in Northern Ireland has been dropping rapidly (it was 315 people in 2011), perhaps representing the tail-end of ‘regular’ institutional closure? However, the Northern Ireland figures do not include anyone with learning disabilities in independent sector inpatient services (either in Northern Ireland or elsewhere in the UK) or anyone from Northern Ireland in NHS inpatient services in England, Scotland or Wales.

Scotland has been conducting a Mental Health and Learning Disability Inpatient Bed Census every two years on 29th October, with the most recent one in 2016. This includes people with learning disabilities in NHS services in Scotland, and people in inpatient services outwith (love that word) Scottish NHS services, including people in independent sector inpatient services in and outside Scotland and people in NHS inpatient services outside Scotland. In 2016 there were 291 people with learning disabilities and/or autistic people in NHS Scotland inpatient services, plus another 33 people in inpatient services outwith NHS Scotland, a rate of 6.1 people per 100,000 total population. This rate looks higher than some other parts of the UK, but the statistics include people in a wider range of inpatient services than statistics for other parts of the UK.

The upshot off all this nerdery is that I don’t think we can work out how many people with learning disabilities or autistic people are in specialist and mental health inpatient services across the UK. The roughly 3,500 people mentioned in these inpatient censuses across the UK are likely to be a substantial underestimate, particularly as the statistics often miss out people sent to independent sector inpatient services in another part of the UK. The statistics may not include all autistic people in these types of units. They may not also include the plethora of ‘step down’, ‘forensic rehab’, reregistered from hospital to care home, types of places that again may be growing largely invisibly. They certainly don’t include people with learning disabilities and autistic people in general mental health inpatient services – English data from NHS Digital suggest that this involves at least an extra 1,000 people at any one time. The statistics also don’t include children and young people in varieties of residential special school/specialist residential colleges designed for the challenging of behaviour.

Across the UK, if we include all these types of places that people with learning disabilities and autistic people may be in, we’re talking maybe 6,000 people of all ages at any one time? And over the course of a calendar year, how many people will have been in one of these places for at least some time during the year? That’s a lot of market expansion opportunity. It may be relevant to note at this point that in England 95% of the 30,500 residential care places for adults with learning disabilities are run by the independent sector, a sector that has been in decline but possibly may not be any longer.

One last thought – as John Lish pointed out on twitter, all these expansions by private companies are based on the assumption that commissioners are going to continue to buy their services (this blogpost I wrote over three years ago depressingly shows how little my thinking has changed on the limitations of commissioners when it comes to inpatient services). In England, Transforming Care hasn’t affected this assumption in any way – if anything, it may have wittingly or unwittingly accelerated it. Looking at other parts of the UK, it looks like not having a commissioner/provider split, having more state-run service provision, or having integrated health and social care services, doesn’t necessarily make a decisive difference either.

Whether public money is tight or not, this is a shocking waste of public money resulting in a shocking waste of people’s lives. Take any local area in England. Put people and families in charge of how that public money is spent – really in charge. Watch the light being shone on these dodgy practices and watch them track down exactly how much money is being spent, where, on what. Watch people and families relentlessly root out waste and shoddy practice. Watch the encouragement of small, local committed groups who actively want to invest in the potential of people with learning disabilities or autistic people to live the fulfilling life they want to. Watch people blossom when they can begin to imagine a future for themselves, and have the means and support to enact that future. [note: good lawyers will be needed]. Do I want my tax payers’ money (the usual phrase here would be hard-earned, but that might be a bit of a stretch in my case) chucked down the throat of an offshore venture capital company to keep people in chains, or invested in people with love and commitment?

Ha – stacked the deck there! Have a good weekend.

Some of the data and analysis here is based on this paper written for the Tizard Learning Disability Review, but I’ve updated some data where possible and focused on some different issues than in the paper.

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?