One out, one in

To accompany #7daysofaction (see here for more details and stories of people’s horrendous experiences at the hands of inpatient services https://theatuscandal.wordpress.com/ ), this week I’m writing a series of short blogposts looking at the statistics we have about inpatient services for people with learning disabilities in England.

This post looks at who is being ‘admitted’ to inpatient services for people with learning disabilities in England, and who is either being discharged (lovely word, not) or ‘transferred’ to another hospital of some kind. This information has only started to be collected in the Assuring Transformation dataset (see here for the latest informationhttp://www.hscic.gov.uk/catalogue/PUB20499 ). This is collected and collated monthly by the Health and Social Care Information Centre from reports by health service commissioners of inpatient services in England (Clinical Commissioning Groups and NHS England specialist commissioners), and has now been collected consistently for just over a year.

Every month commissioners report who has gone into (or moved between) inpatient services, and who has moved out of (or been moved to other) inpatient services. I’ve simply added up the monthly figures for the 13 months we have the information, from March 2015 to March 2016. Some of the numbers won’t quite add up, as the numbers are rounded up or down to the nearest 5 people, and numbers in any months less than 5 people are not reported.

First up, how many people moved into or between inpatient services from March 2015 to March 2016?

Taking people transferring across from one inpatient service to another, in total 415 people were transferred into an inpatient service from another inpatient service over these 13 months (around 32 people per month, and almost a quarter (22%) of all ‘admissions’). At least 45 people were moving to somewhere with an increased security level, at least 170 people were moving to somewhere with a decreased security level, and at least 165 people were moving to somewhere at the same level of security.

In total, 1,450 people were admitted into inpatient services from March 2015 to March 2016 (over three-quarters, 78%, of all ‘admissions’). For 1,200 people, this was their first admission to inpatient services for at least a year (and maybe their first admission to an inpatient service ever). 250 people were coming into an inpatient unit within a year of their last time in an inpatient unit.

Where are people living at the time they are admitted (or transferred) into an inpatient service? The Assuring Transformation dataset keeps a record of where people had moved from into their current inpatient service. So, of everyone living in an inpatient service in March 2016, almost a quarter (22%) of people had come from their ‘usual place of residence, just 1% of people from a ‘temporary place of residence’, and 7% of people from residential care. 14% of people had come from a ‘penal establishment’ and 2% from an ‘other hospital’ (such as a general acute hospital). Over half of people, however, had moved from another learning disability inpatient service, mostly commonly an Assessment and Treatment Unit (48%) and less commonly from a secure forensic inpatient service (5%).

Three things occur to me from this information. First, there is a lot of ‘churn’ within the inpatient service system, with people moved around between inpatient services for reasons that are not immediately obvious. Second, although up to 3,000 people with learning disabilities are in inpatient services at any one time, over the course of a year many more people with learning disabilities (around 4,000 people?) are spending some time in an inpatient unit. Third, much, much more needs to be done to support people so they don’t need to go into inpatient services in the first place. For example, is the 14% of people coming into inpatient services from penal establishments a function of tightening eligibility criteria for social care services and reduced support for people and families, and are these people likely to be coming out of inpatient services any time soon?

As well as looking at who is coming into inpatient services, we can also look at how many people have left inpatient services over the same time period (although the numbers don’t exactly match).

Over the 13 months from March 2015 to March 2016, 455 people were reported to have transferred from an inpatient setting to another hospital, principally low secure services (at least 125 people), various forms of ‘rehab’ inpatient service (at least 105 people), ‘classic’ Assessment and Treatment Units (at least 50 people), and medium secure services (at least 45 people).

Over the same time period, 1,405 people were discharged from inpatient services into ‘community settings’ (on average, 108 people every month). People were commonly moving into residential care (at least 455 people), supported housing (445 people), their family home (with support, 345 people), and independent living (130 people).

Overall, this reinforces how many people are churned around the inpatient service system. It also explains why the length of stay for people in their current community inpatient unit is much shorter than people’s total length of continuous stay in inpatient services.

So, according to the 2015 Learning Disability Census, the median length of stay for people in their current inpatient unit was 554 days (or around a year and a half) – their average length of stay (due to that pesky ‘negative skew’ of some people living inpatient units for years and years) was 1,203 days (or well over 3 years). 

People’s total length of continuous stay in inpatient services was much longer, with a median of 861 days (well over 2 years) and an average of 1,794 days (almost 5 years). At the end of September 2015, 400 people (13% of all people in inpatient units) had been continuously in inpatient units for more than 10 years – to be fair, this is a reduction from the 540 people in this position in September 2014. The graphs below (come on, I can’t do a blogpost without any graphs) show this information in more detail.

Finally, the information on discharges from inpatient services shows that people can be and are moving out from inpatient services into a range of community-based alternatives (although we must always be mindful of the Daisy Unit scenario – I am unclear whether people moving into the Daisy Unit would count as moving into community-based residential care using these categories). A wide range of individualised, community-based support options can be done for people moving out of inpatient services. Wouldn't it be great if these options were there for people earlier, so they wouldn't ever be anywhere near an inpatient unit?

Never let me go

To accompany #7daysofaction (see here for more details and heartbreaking stories https://theatuscandal.wordpress.com/ ), this week I’m writing a series of short blogposts looking at the statistics we have about inpatient services for people with learning disabilities in England.

This post looks at what is included in both the annual Learning Disability Census and the monthly Assuring Transformation dataset about ‘care plans’. For me, this information is really about the assumptions that inpatient services are making about why people are there and what their prospects are for leaving again.

So, both datasets record ‘care plans’ under the following categories and sub-categories. First, there are people who ‘Need inpatient care according to the care plan’, including:

• People who are not dischargeable at the time of the care plan
• People who need indefinite inpatient care for behavioural needs
• People who need indefinite inpatient care for physical needs
• People who have an active treatment plan, but for whom a discharge plan is not in place

Second, there are people who ‘Do not need inpatient care according to care plan’, including:

• People with a delayed transfer of care
• People who are working towards discharge or have a discharge plan in place

First up is information from the Learning Disability Census from 2013 to 2015 (see here http://www.hscic.gov.uk/searchcatalogue?productid=19718&q=learning+disability+census+2013&sort=Most+recent&size=100&page=1#top and here http://www.hscic.gov.uk/searchcatalogue?productid=20487&q=learning+disability+census+2013&sort=Most+recent&size=100&page=1#top )

The graph below shows the number of people at the end of September 2013, 2014 and 2015 who had care plans falling into these categories. What can we tell from this? Well, in 2015 over two thirds of people (68%) had inpatient service care plans indicating that they needed inpatient care, a proportion staying fairly steady from 2013 to 2015.

Within this group, however, there was a big change in 2014. In 2013, nearly half of all people in inpatient units (46%) had an ‘active treatment plan, but for whom a discharge plan was not in place’, but in 2014 this had dropped to just over a third of people (37%) and it stayed at this level in 2015. At the same time, the proportion of people deemed ‘not dischargeable’ rose from 15% of people in 2013 to 28% of people in 2014 and 2015.

Was this just an byproduct of slight changes to the definitions used for these categories in 2014, or does it reflect a general trend for more people in inpatient units to be counted as ‘undischargeable’ over time? More recent, monthly information from the Assuring Transformation dataset might give us some clues. The second graph below shows the ‘care plans’ of people in inpatient units month by month, from March 2015 to March 2016, using percentages rather than raw numbers.

Even over more recent times (so well after any one-off definitional change) the drift towards a greater proportion of people in inpatient units becoming ‘undischargeable’ over time is there, month by month. In March 2015, 21% of people in inpatient units according to this dataset were ‘undischargeable’; in March 2016 this was 26% of people (don’t ask me why this isn’t the same proportion as recorded in the 2105 Learning Disability Census – read this if you want to fall down that particular nerd rabbit hole http://chrishatton.blogspot.co.uk/2016/01/out-for-count.html ). This is an increase from 510 people in March 2015 to 675 people in March 2016.

In March 2015, 39% of people in inpatient services had an ‘active treatment plan, discharge plan not in place’. By March 2016 this had also increased, to 43% of people. This is an increase from 945 people in March 2015 to 1,135 people in March 2016.

Overall, the proportion of people ‘needing inpatient care’ increased from 61% of people in March 2015 to 71% of people in March 2016. What has happened in the course of a single year to lead to such an increase?

The flip side of this is the number of people who, according to their inpatient service care plans, don’t actually need to be in inpatient services at all. Overall, from the census data, this was just over a third of people in inpatient units in September 2013 (34%; 1,105 people) and just under a third of people in September 2015 (32%; 950 people). From the Assuring Transformation data, the trend is more pronounced, from 39% of people (915 people) in March 2015 to 29% of people (785 people) in March 2016.

A reduction in the number of people in inpatient services who don’t need to be there according to their (inpatient service written) care plans is to be welcomed. But when this happens at the same time as an increase in the number of people who do need to be there according to their inpatient care plans, it begins to look like a defensive reshuffling of the pack for inpatient services to justify their continued existence.

The final graph for this post shows the consequences of this for getting people out of inpatient services. It shows the percentage of people in inpatient services with a planned date for transfer (note that this doesn’t necessarily mean leaving inpatient services altogether, as this could include people being moved to a different inpatient service), from March 2015 to March 2016. The proportion of people in inpatient services with a planned date for transfer has dropped drastically in just a year, and is heading in the opposite direction to Transforming Care policy. In March 2015, half of people in inpatient services (50%; 1,200 people) had a planned date for transfer. By March 2016, this had reduced to less than a third of people (30%; 775 people).

Much has been made by inpatient service providers of people not having anywhere to move to as a reason why some people are kept in inpatient services so long. According to these statistics, they’re being a little disingenuous. At the end of March 2016, apparently only 65 people (a reduction from 85 people in March 2015) were in inpatient services because of a delayed transfer in care, with a wide range of reasons for these delays. If inpatient services were fearlessly preparing people for life outside the inpatient service, only to be blocked by nefarious local authorities, then these numbers would be much, much bigger. I’m not saying that some local authorities and others aren’t evading their responsibilities too.  I’m saying that perhaps some inpatient services aren’t trying quite as hard as they claim to get people out?

Far from home

To accompany #7daysofaction (see here for more details and heartbreaking stories https://theatuscandal.wordpress.com/ ), this week I’m writing a series of short blogposts looking at the statistics we have about inpatient services for people with learning disabilities in England. One thing that people and families talk about is how hard it is if someone is moved to an inpatient service a long way from home and family.

This post takes a look at information from the Learning Disability Census from 2013 to 2015 (in earlier Count Me In censuses postcodes weren’t stored in a way that allowed this analysis to be done) (see here http://www.hscic.gov.uk/searchcatalogue?productid=19718&q=learning+disability+census+2013&sort=Most+recent&size=100&page=1#top and here http://www.hscic.gov.uk/searchcatalogue?productid=20487&q=learning+disability+census+2013&sort=Most+recent&size=100&page=1#top ) about how far the inpatient units that people were living in were from their home. These analyses use postcode information and are distances as the crow flies, so these distances will underestimate the actual distances people and families have to travel (and the associated time, cost and stress).

The graph below shows the number of people in inpatient units at various distances from their home postcode in September 2013, 2014 and 2015. From 2013 to 2015, the average distance from home has increased (60.5km in 2013; 66.2km in 2015) as has the median (where half of the people in inpatient units are more than this distance from home) (34.5km in 2013; 38.6km in 2015). The reason the average is so much higher than the median is in the appropriately named mathematical term ‘negative skew’ – some people are living so far away from home (more than 100km can be a lot more than 100km) that it bumps up the average distance for everyone.

Some of the changes from 2013 to 2015 might be because the number of people where the distance was ‘unknown’ (unknown by the people providing the service??? but anyway...) has dropped over time, so it might be that these newly known distances are for people living in inpatient services further away from home.

Even so, it can hardly be a good sign that the number of people in inpatient services more than 100km from home increased, from 570 people in 2013 to 670 people in 2015 – that’s almost a quarter (22%) of all people in inpatient services. This is almost as many people as the 715 people (24%) who live within 10km of their home postcode. It’s also, I would think, a very bad sign that more than two-fifths (42%) of under-18s in inpatient services were more than 100km from home.

I’m running out of things to say at the end of these posts. The Health and Social Information Centre collect all these statistics, presumably NHS England and others pore over them on a regular basis, and yet…

A price worth paying?

To accompany #7daysofaction, this week I’m writing a series of short blogposts looking at the statistics we have about inpatient services for people with learning disabilities in England. The stories in #7daysofaction (see here https://theatuscandal.wordpress.com/ ) show us the real cost in the blighted lives (and sometimes deaths) of people with learning disabilities and the impact on their families.

There is also a financial cost (or more strictly speaking a financial charge, for these two things are not the same) for these inpatient services, paid for by the state. This blogpost looks at the charges made for these inpatient services, as collected by the Health and Social Care Information Centre in the Learning Disability Census from 2013 to 2015 (see http://www.hscic.gov.uk/catalogue/PUB19428 ).

The graph below shows the amount charged, per week, for a place in an inpatient service in England.

First, there is a huge range of charges per week – the extent to which this range maps on to ‘need’ (whatever that might mean) is unclear. So in 2015, 115 people were in inpatient units charging less than £1,500 per week (or £78,000 per year), while 130 people were in inpatient units charging more than £6,500 per week (or somewhere north of £338,000 per year).

In 2015, the average charge for an inpatient unit was £3,563 per week (up slightly from an average £3,426 per person per week in 2014, a 4% increase). This equates to £185,276 per person per year. Across 3,000 people, that’s £556 million per year paid by the state to keep people in inpatient units.

While the number of people in inpatient units dropped slightly from 2013 (3,250 people) to 2015 (3,000 people), the number of people in the most expensive units, charging £4,500 or more per week, has actually increased from 2013 (369 people) to 2015 (440 people).

It also turns out that independent sector services tend to charge higher prices than NHS services. On average, independent sector units charged £3,700 per person per week in 2015, compared to £3,449 per person per week in NHS units. While independent sector services accounted for 44% of all places charging less than £4,500 per person per week, they accounted for 52% of all places charging more than £4,500 per person per week.

Who is paying these charges for inpatient services? Well, apart from the obvious answer of “We are” (think of how over  half a billion pounds a year could be used to support people with learning disabilities in England), the Learning Disability Census does contain a breakdown of who is paying for what. My eyebrows (which I thought couldn’t go any higher) were raised further at various points. So, in no particular order…

• NHS Clinical Commissioning Groups. In September 2015 they were paying for 1,335 people in inpatient services (down from 1,575 people in 2014), at an average charge of £3,424 per person per week.
• NHS England specialist commissioners (who are more likely to be paying for people in secure inpatient services than CCGs). In September 2015 they were paying for 1,470 people in inpatient services, up from 1,395 people in 2014. These are the commissioners under the direct control of NHS England, with the stated policy aim of drastically reducing the number of people in inpatient units. They paid an average £3,645 per person per week.
• Other NHS commissioners outside England. In September 2015 they were paying for 75 people in inpatient services in England, up from 55 people in 2014. Although small in number, these places are particularly lucrative – the average charge for these commissioners was a whopping £4,419 per person per week.
• Other NHS providers. I’m struggling to understand how this would work, but it’s presumably NHS Trusts sub-contracting to other organisations when they can’t provide an inpatient place they've promised. In September 2015 the number of people was small (25 people, compared to 35 people in 2014) – they paid £3,354 per person per week.
• Commissioners using pooled health and social care budgets were paying for 10 people in inpatient services in September 2015, down from 20 people in September 2014, at a bargain basement price of £2,926 per person per week.
• The final group of commissioners where my eyebrows almost met my receding hairline were local authorities. In September 2015, local authorities were paying for inpatient places for 80 people – admittedly a sharp reduction from the 150 people they were paying for in 2014. They paid an average £3,738 per person per week, including places for 10 people charged at more than £6,500 per week each.

What does this tell us? Well, for one thing there’s a shed-load of cash tied up in inpatient services, and £556 million is a more than tidy sum for reinvestment into something better. For another thing, commissioners of all sorts are prepared to pay through the nose for these places, sometimes in defiance of their own organisation’s national priorities. Finally, in a time of alleged austerity, the cost of these places is going up, and the expansion is in the really, really, really expensive ones. Are commissioners going by the principle of “Reassuringly Expensive”?

Adverse experiences

To accompany #7daysofaction (see this superb post from @KaraChrome that pulls together the strands of the 7 stories shared during the week https://theatuscandal.wordpress.com/2016/04/25/just-want-to-go-home/ ), this week I’ve been writing a series of short blogposts looking at some of the statistics we have about inpatient services for people with learning disabilities in England. This is the last post in this series. It has a few more graphs than usual, to try and build a picture from national statistics of a few aspects of what happens to people once they are in an inpatient service. National statistics are the last place to really understand what people experience (the stories in #7daysofaction do that), but there are a few indicators of ‘adverse experiences’ and more recently medication prescription in the Learning Disability Census and, before that, the Count Me In Census (see here http://www.hscic.gov.uk/searchcatalogue?productid=19718&q=learning+disability+census+2013&sort=Most+recent&size=100&page=1#top , here http://www.hscic.gov.uk/searchcatalogue?productid=20487&q=learning+disability+census+2013&sort=Most+recent&size=100&page=1#top and here https://www.improvinghealthandlives.org.uk/publications/1161/A&T_and_other_specialist_inpatient_care_for_people_with_LD_in_the_Count-Me-In_census ).

What can we learn from these indicators about what happens to people in learning disability inpatient services? The first graph below shows what percentage of people in inpatient services experienced at least one instance of an accident, a physical assault, or self-harm, in the three months leading up to the census date. There is information for 2013, 2014 and 2015 in the Learning Disability Census. There is also combined information from the 2007, 2009 and 2010 Count Me In Censuses, just for those learning disability inpatient units that called themselves Assessment and Treatment Units (so not including people in general long-stay hospitals).

In the 2007/08/09 Censuses, over a fifth (22%) of people had experienced an accident in the previous three months – by 2015 this had slowly reduced to 18% of people. That’s 530 people in 2015 who had experienced an accident in the three months before the census – and there were 10 people who had experienced more than 10 accidents in this period.

Over a third of people (35%) in 2007/08/09 had been on the receiving end of at least one physical assault in the last three months. From 2013 to 2015, this was hovering at a consistent 22%/23% of people. That’s 665 people in 2015 who had been physically assaulted in the three months before the census. 45 people had been assaulted more than 10 times in this period and within these 45 people, 20 people had been physically assaulted more than 20 times in the last three months.

Finally, over a quarter of people (27%) in 2007/08/09 experienced at least one episode of self-harm. This gradually dropped to 24% of people in 2015. That’s 735 people who had experienced self-harm in the three months before the census. 110 people had experienced self-harm on more than 10 occasions in the last three months and within these 110 people, 45 people had experienced self-harm on more than 20 occasions in the last three months.

Overall, getting on for half of all people in inpatient units in September 2015 (1,375 people, 46%) had experienced at least one these ‘adverse experiences’ in the three months leading up to the census.

The second graph below shows how many people experienced the ‘restrictive practices’ of seclusion and restraint in the three months leading up to the census.

In the 2007/08/09 censuses, 7% of people in Assessment and Treatment Units had experienced seclusion in the last three months – this has been steadily rising since, up to 13% of people in 2015. That’s 380 people experiencing being put in seclusion at least once in the last three months, with 40 people being subject to this more than 10 times and, within these 40 people, 15 people being subject to seclusion more than 20 times in three months.

In the 2007/08/09 censuses, restraint was very common (41% of people had been subject to hands-on restraint in the last three months). While it has reduced, over a third of people in inpatient units in 2015 (34%) still experienced at least one episode of hands-on restraint in the last three months. That’s 1,030 people being subject to hands-on restraint at least once in three months. 220 people had been subject to restraint more than 10 times in the last three months, and within these 220 people 115 people had been subject to hands-on restraint more than 20 times in three months.

Overall, 1,070 people (36%) in inpatient units in 2015 had experienced seclusion or restraint (or both) in the last three months.

The final graph I want to share today is about another form of service ‘response’, medication. From 2013, the Learning Disability Census has been collecting information on how many people got antipsychotic medication in the 28 days leading up to the census. And from 2014, the Census has been collecting information on people getting rapid tranquilisation over the same time period.

Over all three years of the census, consistently, almost three-quarters of people in inpatient units had been ‘given’ (I’m struggling to find the right words here) antipsychotic medication in the last 28 days. In 2015, that was 2,155 people (72%), with almost all of them (2,025 people) getting antipsychotics on a regular basis.

The Learning Disability Census also records service providers’ reasons for administering antipsychotics to people. In 2015, apparently 1,420 people were being prescribed antipsychotics ‘for the treatment of a formally diagnosed mental illness’. Odd, because elsewhere in the census they report that just 440 people have at least one mental health diagnosis ‘severe enough to require treatment’ (and within this 400 people, 195 people have a diagnosis of psychosis ‘severe enough to require treatment’).

A further 645 people were being prescribed antipsychotics ‘for the management of challenging behaviour’. In 2015, 805 people were reported to have at least one ‘behavioural risk severe enough to require treatment’, but as these risks span violence, sexual risk, sexual risk to self, fire risk, self-injury risk, and property risk, it’s unclear to me why antipsychotic medication is such a widespread ‘treatment’ response within highly expert services.

Finally, from 2014 the Learning Disability Census has reported how many people have been subject to rapid tranquilisation medication in the last 28 days. In 2015, 11% of people in inpatient units (320 people) had been subject to this at least once.

By virtue of the method used, these indicators can’t tell us about the experiences of people with learning disabilities within inpatient services. But even from these sparse figures, what must these places be like to live in? (even if people are in a unit for months rather than years, they are still living there) You’re more likely than not to be on antipsychotic medication, and if you’re lucky enough to avoid seclusion or hands-on restraint, physical assault, self-harm or accidents, you’re still seeing this happening to the people around you on a presumably very regular basis. How therapeutic can such places be?

A quick final thought on the series of blogposts I've done this week for #7daysofaction. They have focused on trying to understand some of trends happening in inpatient services for people with learning disabilities, and (to the very limited extent possible) documenting the consequences of these services for people with learning disabilities and their families. 

As shown on the cover of the Mansell report (almost ten years ago now, and an official Department of Health document) inpatient services for people with learning disabilities are themselves a symptom, a symptom of a failure to develop local services that really support people and families to live fulfilling lives where they want, and with whom they want. While tackling the symptom, let's also address the cause.

The doctor won't see you now

This third statistical blogpost to accompany #7daysofaction is a bit different to the first two – rather than using inpatient census information to look at trends over time from 2006 to 2015, this post uses Assuring Transformation information (see here for the latest information http://www.hscic.gov.uk/catalogue/PUB20499 ). This is collected and collated monthly by the Health and Social Care Information Centre from reports by health service commissioners of inpatient services in England (Clinical Commissioning Groups and NHS England specialist commissioners), and has now been collected consistently for just over a year.

To justify their existence, much is made of the highly ‘specialist’ nature of inpatient services, where multiple professionals come together to understand and work with ‘complex’ individuals. In this post I want to look at a really straightforward indicator of professional practice within inpatient services, reviews. Every month, the Assuring Transformation dataset reports the length of time since everyone in inpatient services last had a review done by their service. Whatever type of inpatient service someone is in, for whatever reason, a highly specialist service should be reviewing pretty regularly what’s happening for the person, what impact their ‘treatment’ is having, and whether/what anything needs to change to help people.

The graph below shows the length of time since people in learning disability specialist inpatient services last had a review. Because of complications about how the overall number of people in these places is collected in the Assuring Transformation dataset which I won’t bore you with (read this http://chrishatton.blogspot.co.uk/2015/11/impatient-inpatient.html if you really want to know more), I’ve done these as percentages of people in inpatient services rather than the raw numbers. [Overall, the number of people in inpatient services over the year is likely to have stayed pretty static].

What does the graph show us? Well, just over a year ago, in March 2015, most people in inpatient services had been reviewed pretty recently (probably due to pressure from NHS England). Nearly a third of people (31%) had had a review less than 12 weeks before, nearly half of people (46%) had had a review between 12 weeks and 6 months before, and around a fifth of people (21%) had had a review between 6 months and a year before. Only 1% of people at this time had not had a review for over a year.

Fast forward to March 2016. Now, only a fifth of people (21%) had had a review less than 12 weeks before, less than a third of people (29%) had had a review between 12 weeks and 6 months before, and a fifth of people (21%) had had a review between 6 months and a year before. Now, over a quarter of people in inpatient services (28%) had not had a review for over a year, and for 1% of people there is no review date recorded.

Surely reviewing how people are doing, on a fairly regular basis, is fundamental to any claims these services are making about their specialist nature?

Secure attachment

This is the second short blogpost looking at recent trends in what’s happening with learning disability inpatient services in England to accompany the #7daysofaction campaign. This one looks at levels of ward security for people with learning disabilities in inpatient services in England from 2007 to 2015, using inpatient census information (see here http://www.hscic.gov.uk/searchcatalogue?productid=19718&q=learning+disability+census+2013&sort=Most+recent&size=100&page=1#top , here http://www.hscic.gov.uk/searchcatalogue?productid=20487&q=learning+disability+census+2013&sort=Most+recent&size=100&page=1#top and here https://www.improvinghealthandlives.org.uk/publications/1161/A&T_and_other_specialist_inpatient_care_for_people_with_LD_in_the_Count-Me-In_census ).

There is currently a lot of debate about different types of specialist inpatient service (particularly attempts to define Assessment and Treatment Units as fundamentally different to secure, forensic inpatient services), so I thought it would be useful to get an idea of trends in the number of people in these types of service over time. However, from 2007 to 2015 the categories of some types of inpatient service reported in censuses have changed substantially, and certainly from 2007 to 2010 underwent a time of definitional instability (with the number of people in services defined as ATUs going up and down so rapidly that this had to be a feature of how the same service defined itself over time rather than anything else - revealing in itself). So, as a relatively consistent measure of how services define themselves in terms of the ‘risk’ of the people they house, level of security (general, low, medium, high) seemed to be a better bet.

The graph below shows the number of people in learning disability inpatient services at general, low, medium and high levels of security, according to censuses conducted (with some gaps) from 2007 to 2015. As the previous blogpost reported (see http://chrishatton.blogspot.co.uk/2016/04/state-of-independents.html ), the overall number of people in learning disability inpatient services dropped substantially from 2006 to 2010, reflecting the tail end of ‘regular’ deinstitutionalisation, with slower change from 2013 to 2015.

If history is any guide, in a general process of institutional closure you would expect to see the biggest reductions in units at lower levels of security, and from 2007 to 2010 this is the pattern. The number of people in units at ‘general’ security levels dropped by 20%, with a further big drop in numbers to the 2013 census (although little change from 2013 to 2015). Amongst the specialist inpatient services that are left in England (where there are not supposed to be any generic long-stay hospital units any more) these presumably more or less map on to Assessment and Treatment Units.

The patterns are different at increasing levels of ward security, where you might expect general institutional closure programmes, in the absence of a specific focus on these types of unit, to have less of an impact. And from 2007 to 2010, this is again what we see; the numbers of people with learning disabilities in low secure, medium secure, and high secure inpatient services all stayed pretty static. Of course, in 2011 along came the Panorama programme on Winterbourne View, and the government and policy response specifically aiming to reduce the number of people in these types of inpatient settings. What happened next?

For people in low secure inpatient services, the number of people in low secure services in 2013 was roughly similar to the number of people in these services in 2010, with big reductions (a drop of 32% in 2 years) in the number of people in low secure services from 2013 to 2015.

However, the (smaller) number of people in medium secure services increased from 2010 to 2013, by 28%, and has stayed broadly consistent from 2013 to 2015. On a smaller scale yet, the pattern is the same for people in high secure services; an increase from 47 people in 2010 to 73 people in 2013, staying at a consistent level to 2015.

The increase in the number of people with learning disabilities in medium secure and high secure inpatient services between 2010 and 2013 is hard to understand, especially at a time when national policy was pushing in the opposite direction (and overall numbers of people in inpatient services were dropping). Did more people with learning disabilities really become highly dangerous between 2010 and 2013? Did something change in the criminal justice system, so that more people who would have ended up in prison before were diverted into medium and high secure inpatient services instead?Or are inpatient services adapting to new market conditions and creating more ‘specialist’ service niches that are more resistant to closure?

State of independents?

To accompany the #7daysofaction campaign, I’m going to try and write some very short blogposts looking at recent trends in what’s happening with learning disability inpatient services in England. This one looks at trends over a 10-year time period in the overall number of people in learning disability inpatient services, and the balance of NHS vs independent sector services over this time.

To do this, I’m using information from the Health and Social Care Information Centre Learning Disability Census, which ran annually from 2013 to 2015 and asked providers of specialist learning disability inpatient services in England lots of questions about their services and who was in them on the Census date (30^th September). The latest reports for the 2015 Census have lots of useful information on trends from 2013 to 2015 (see here http://www.hscic.gov.uk/searchcatalogue?productid=19718&q=learning+disability+census+2013&sort=Most+recent&size=100&page=1#top and http://www.hscic.gov.uk/searchcatalogue?

productid=20487&q=learning+disability+census+2013&sort=Most+recent&size=100&page=1#top ).

The method for the Learning Disability Census was based on an earlier census of inpatient mental health services in England, called Count Me In, which from 2006 to 2010 also included inpatient services for people with learning disabilities. Very little information on people with learning disabilities was published in the Count Me In reports, but an IHaL report by Gyles Glover and Valerie Olson in 2012 provided a more comprehensive analysis of this information (see https://www.improvinghealthandlives.org.uk/publications/1161/A&T_and_other_specialist_inpatient_care_for_people_with_LD_in_the_Count-Me-In_census ).

With some gaps, this gives us some information on specialist learning disability inpatient services in England, and the people with learning disabilities in them, at regular snapshots from 2006 to 2015.

The graph below shows the number of people in learning disability inpatient services in England from 2006 to 2015, according to whether they were in an NHS unit or an independent sector unit. Overall, the number of people with learning disabilities in inpatient units in England has dropped from 4,609 people in 2006 to 3,000 people in 2015, with earlier (and bigger) reductions reflecting the tail-end of ‘regular’ deinstitutionalisation – the eventual closure of the last ‘long-stay’ hospital campuses. [As an aside, it’s worth remembering that these campuses also required a real concerted push to get them closed, against considerable institutional inertia].

Reflecting this, the number of people with learning disabilities in NHS inpatient services dropped, from 3,669 people in 2006 to 1,650 people in 2015. In contrast, the number of people with learning disabilities in independent sector NHS services increased, from 940 people in 2006 to 1,350 people in 2015. In 2006, 20% of people were in independent sector services; in 2015 this had increased to 45%.

This blogpost isn’t going to be a paean to the virtues of the NHS – with #JusticeforLB how could it be? – and good or shockingly bad services are not the exclusive property of any organisational arrangement. #JusticeforLB is exposing how NHS services can be as rapacious and resistant to accountability as any imagined cigar-chomping venture care capitalist (an outdated stereotype now – maybe a desiccated smooth-suited coconut water drinking capitalist?).

But independent sector services operate to different (relaxed or absent) rules compared to the public sector – not least in terms of freedom of information legislation. In theory, the independent sector is also even less bound to general policy priorities than NHS services, and as profitable businesses are not in the business of closing themselves down – although if it no longer turns a profit, they can close themselves down at the flip of a coin without any thought to the people within those services.

As the ‘structure’ of health care in England becomes more and more like a Jackson Pollock painting, this drift towards the independent sector is likely to be the result of hundreds of local (possibly panicked) decisions being made all around the country by commissioners, NHS services and NHS England, rather than the desired outcome of a national plan. But is this drift going to be (yet another) obstacle in the path to closing these services?

The complexity complex

To accompany the #7daysofaction campaign to help spring people with learning disabilities from specialist inpatient services, I was thinking of doing some short blogposts looking at some of the official statistics around inpatient services for people with learning disabilities.

[image from omgif]

However, I ended up writing this instead - prompted by Eden’s story (see here https://theatuscandal.wordpress.com/2016/04/18/mum-i-cant-get-the-words-out/ ) and some of the media coverage around #7daysofaction. This is the narrative coming from a range of professional groups that: 1) People with learning disabilities are in inpatient services because they are ‘complex’ (often a code word for ‘dangerous’); 2) For many/most people with learning disabilities in inpatient services, an inpatient service is the only rational response (even if people end up in them for too long); 3) Only professionals (principally psychiatry but also clinical psychology and others) have the ‘scientific’ expertise required, and other forms of knowledge and understanding (for example, those brought by the person with learning disabilities and family members) are at best irrelevant and at worst actively unhelpful. I want to take these points in turn.

Complex?

A frequent justification for putting people into inpatient units is their ‘complexity’. What does ‘complexity’ mean in this context, and why is it a justification for putting people in inpatient units? Even in terms of the official information provided by the Health and Social Information Centre, these claims to complexity are somewhat wobbly. For example, the Learning Disability Census 2015 (see http://www.hscic.gov.uk/searchcatalogue?productid=19718&q=learning+disability+census+2013&sort=Most+recent&size=100&page=1#top and http://www.hscic.gov.uk/searchcatalogue?productid=20487&q=learning+disability+census+2013&sort=Most+recent&size=100&page=1#top ) reports that, of the 3,000 people with learning disabilities in inpatient services on 30 September 2015, 85% of people did not have a mental health diagnosis ‘severe enough to require treatment’, and 73% of people did not have a behavioural risk ‘severe enough to require treatment’.

While ‘complexity’ seems to be a term to ward off questioning (it’s too complicated for the likes of you to understand), it seems to me more like an admission from professionals that they don’t really understand what’s happening in terms of professionally-derived frameworks for understanding ‘behaviour’ – these frameworks alone are clearly inadequate for helping people. And for all the complexities that may be on show (I think it’s a fair bet that putting anyone, me included, into an inpatient unit would result in some complexity of behaviour), people in inpatient units and families seem to talk about what people want out of life in ways that don’t seem terribly complicated to me - a nice place to live, being with people you love and who love you, having a meaning to your life, and so on.

What is undoubtedly complex, and a serious obstacle to people not ending up in inpatient services, is the financial and service ‘systems’ (a loose term which seriously underestimates the shambles we have now) both constraining and ignoring people with learning disabilities (see here https://lastquangoinhalifax.wordpress.com/2016/04/16/its-more-complicated-than-that/ ). If a service system results in inpatient services being ‘necessary’, then we need a different system.

The only way is locked?

While people with learning disabilities (as with anyone) may need a place of refuge at points of crisis in their lives, does this need to be a specialist inpatient unit? The number of people in different ‘tiers’ of inpatient service is itself used as a rationale for these services existing, particularly when splitting ‘ATU’ places (‘maybe we can reduce these numbers’) from places with varying levels of forensicness (‘these people are dangerous and need to stay banged up’). Yet from Eden’s story and those of others, we know that people can end up in forensic or secure services for little apparent reason except there was a space available at the time. There is also huge variation around the country in how many people with learning disabilities end up in units with different levels of security, in ways that do not seem to make any sense in terms of local needs.

Eden’s story and those of many others also show in horrendous detail that what inpatient services do to people is not rigorously evidence-based ‘treatment’ or ‘therapy’, and can be actively harmful (to understate the case wildly). Where is the randomised controlled trial demonstrating that feeding a person through a hatch is clinically effective? What kind of health service think it’s OK that someone in an environment completely controlled by the service gains 16 stone in weight? What kind of therapeutic environments prescribe antipsychotics to 72% of people in them, when 6% of people have a psychotic disorder severe enough to require treatment? Or have administered rapid tranquilising medication to 11% of people in the last 28 days, used seclusion on 13% of people in the last 3 months, or used hands-on restraint with 34% of people in the last 3 months?

For all the apparent scientific expertise of professional groups, the professional logic for inpatient services is sealed and impervious to argument (or falsification, if you want to get all Karl Popper about it). People in inpatient services are complex and dangerous, therefore antipsychotics, seclusion and restraint are required. If people show signs of being intensely distressed in the unit, this isn’t a sign that the unit is failing or actively making things worse, but a sign that they need to stay in the unit and get more antipsychotics, seclusion and restraint, or to be transferred somewhere further up the ‘security’ hierarchy. The notion that an inpatient service is making people distressed, and the alternative is freedom rather than more restraint, doesn’t seem to occur.

Experts by…?

Various professional groups lay claim to arenas of exclusive expertise concerning how to ‘understand’ people with learning disabilities going through a rough time. For learning disability inpatient services, psychiatry (and to a lesser extent clinical psychology) loom large, partly for historical reasons (the psychiatric colonisation of institutional leadership throughout the 19^th and 20^th centuries) and partly to fill a vacuum left by the disdain of general medicine/education etc for people with learning disabilities.

What is the nature of these claims to exclusive expertise, and what consequences do they have? For me, while these claims are about having access to medical ‘knowledge’ and the approach of a ‘scientist’, when it comes to professionals justifying inpatient settings both these claims are on shaky ground. First, it is unclear how much the issues that get people with learning disabilities into inpatient units are medical or even psychiatric, and the general medical/health care that people experience in these units is less than ideal (as you can see, I’m working on understatement today).

Second, there are several problems with (and consequences of) professional claims to be taking a ‘scientific’ approach. The most obvious is that scientific research evidence demonstrating the superiority of inpatient units over alternatives (and demonstrating the effectiveness of what inpatient units do) is pretty much absent. Another obvious point is that, at the same time as appealing to being scientists, professionals also make a claim to their expertise being a craft built up through years of training and experience – which makes that expertise not transparent to anyone else and is passed on with little critical examination.

For me, a big consequence of this is that professionals take an approach with some of the cultural traces of experimental science. The person’s behaviour is a ‘problem’ to be studied, which involves removing the person to an inpatient unit where extraneous ‘variables’ (like home, family, identity) can be eliminated and they can be observed in a controlled environment (this is a persistent theme identified in Neurotribes by Steve Silberman, along with the less than subtle parent/mother blaming that is also likely to be relevant here). I can’t remember where I first heard/read it, but it reminds me of the tale of aliens coming to Earth to understand human behaviour. Aliens could observe at a safe distance what people were doing outside, but they really wanted to understand what people did within their homes. So they hovered over a house in their flying saucer, disintegrated the roof by alien ray, and observed…people running around screaming.

The final consequence I want to talk about is that these professional claims to expertise (perhaps partly because they are on such shaky ground) view non-professional expertise as at best irrelevant and at worst a threat to be crushed. When Steven Neary started every morning in the inpatient unit singing ‘I Want To Break Free’ (see this instalment of the weekly wonder that is Steven Neary’s Good Massive Songs Radio Station https://stevennearysgoodmusicstation.wordpress.com/ ), why was this not treated as admissible expertise? When Mark Neary and other families talk about their children possibly going through some sort of existential crisis in their late teenage years, why isn’t this seen as something seriously worth investigating? Why are parents seen as ‘toxic’ when they are bringing a lifetime of knowledge and love to the table?

I want to finish with a quote from ‘Against Method’ by Paul Feyerabend (1993, 3^rd edition, London: Verso), which is a sort of anarchist examination of the whole culture and philosophy of science:

“The way in which social problems, problems of energy distribution, ecology, education, care for the old and so on are ‘solved’ in First World societies can be roughly described in the following way. A problem arises. Nothing is done about it. People get concerned. Politicians broadcast this concern. Experts are called in. They develop theories and plan based on them. Power-groups with experts of their own effect various modifications until a watered down version is accepted and realized. The role of experts in this process has gradually increased. We now have a situation where social and psychological theories of human thought and action have taken the place of this thought and action itself. Instead of asking the people involved in a problematic situation, developers, educators, technologists and sociologists get their information about ‘what these people really want and need’ from theoretical studies carried out by their esteemed colleagues in what they think are the relevant field. Not live human beings, but abstract models are consulted; not the target population decides, but the producers of the models. Intellectuals all over the world take it for granted that their models will be more intelligent, make better suggestions, have a better grasp of the reality of humans than these humans themselves.” (page 263).

Professional knowledge alone will not do the business. The expertise of people with learning disabilities and families, leavened with personal experience and love, needs to take centre stage (and not in an expert by experience way, but in a seriously in charge way), if we’re serious about replacing inpatient services with meaningfully better alternatives. And professionals (of which I am one) need to be appropriately humble about what we bring to the table (if we’re invited to the table, of course, which wouldn’t be our decision) and what our professional knowledges have done to, as well as for, people. An appropriate note for me to stop writing!

Expectancy of life?

[Warning: this post contains quotes from a 1914 textbook using terms which are today highly offensive]

Earlier this week, I took a rare trip to our university library (a sad indictment of current academic life in itself), and found there a copy of “Mental Deficiency (Amentia)”, the 1914 second edition of a clinical textbook by Alfred Tredgold, one of the principal architects of eugenics for people with learning disabilities in the UK. This textbook was immensely influential, and ran through several editions over a number of years.

In this post I don’t want to offer any general observations on this book, as historians and social theorists have done a much better job of this than I could. As I was going through some of it (I couldn’t face reading it cover to cover as I was feeling distinctly nauseous), I noticed a relatively short section on mortality, including some data. Although the information is limited, it gives a point of comparison between then (around 1910) and recent information from the Confidential Inquiry (https://www.google.co.uk/webhp?sourceid=chrome-instant&ion=1&espv=2&ie=UTF-8#q=life%20expectancy ) roughly a century later.

In the table below is information for the median age of death (the age at which half of a group of people will have died) for people with learning disabilities (from Tredgold for 1910 and the Confidential Inquiry for 2010), compared to the general population (the source for this is the quite brilliant Office for National Statistics website http://www.ons.gov.uk/peoplepopulationandcommunity/birthsdeathsandmarriages/deaths/articles/mortalityinenglandandwales/2012-12-17#trends-in-average-life-span ).

	1910 (ish)	2010(ish)
Median age of death
People with learning disabilities	15-19 years	64 years
General population	61 years	82 years

What can we learn from this?

• First, the median age of death for people with learning disabilities a century ago was 15-19 years – 15-19 years – a full 44 years younger than the general population.
• Second, over a century the median age of death for people with learning disabilities has increased hugely, by roughly 47 years, to 64 years.
• Third, although the gap in median age of death has reduced over the past century, the median age of death of people with learning disabilities is still a full 18 years younger than the general population. If these trends were to continue (and this is wildly simplistic for all sorts of reasons), equality in age of death between people with learning disabilities and the general population would be achieved by 2080 (when the median age of death would be, erm, 96 years…).

Why do I think it’s worth writing a post about this? Well, here’s what Alfred Tredgold had to say about mortality in his 1914 textbook (page 149):

“The physical welfare of the ament of to-day is the subject of far more care and attention than was the case a few generations back. Then many perished who, under present conditions, would have survived; and there can be no doubt than modern medical and surgical practice, together with advances in preventive medicine, have diminished the mortality rate, not only of the fit, but of the unfit also. Nevertheless, the vitality of aments as a class is decidedly inferior to, and their expectation of life still remains appreciably less than, that of the ordinary population.”

Remember, he was writing this at a time when half of people with learning disabilities were dying before reaching the age of 20. From a medical professional, this is a self-fulfilling expectancy of a shortened life - would he have expected, demanded, worked strenuously to find out why people were dying (in his book he reports data showing that the most common cause of death for people with learning disabilities was tuberculosis at an astonishing 40%, but focuses his attention on the ‘nervous system’ as the most important factor implicated in people’s deaths)? 

Would he have thought all the resources of a health service should be put at the service of people with learning disabilities, as they should be for everyone else? Would he have predicted (or thought desirable) an increase of almost 50 years in the median age of death of people with learning disabilities over the next century?

My last thought for this blog is that, with some changes in terminology, that 1914 quote could just as easily be uttered by some medical practitioners today, and indeed can be seen in some of the NHS Board papers that @GeorgeJulian has been investigating. The circle of inaction is completely sealed – there’s no need to investigate why people with learning disabilities are dying younger, and do anything about it, because they die younger. Shorter life expectancy is just that – an expectancy that life will be short, by those who are in the best position to do something about it.