Restraints used on people with learning disabilities and autistic people in inpatient units through the COVID-19 pandemic - what the statistics say

This blogpost will run through what the publicly available statistics say about what restraints (or 'restrictive interventions') autistic people and people with learning disabilities in mental health inpatient services in England have been subject to through the COVID-19 pandemic to date. My thanks to the Restraint Reduction Network for asking me to talk at their conference this year, prompting me to have a proper look at this information and marshal the many graphs into some sort of argument.

A recent blogpost gives some context on the number of people with learning disabilities and autistic people who have been in inpatient services in England through the COVID-19 pandemic, using the same dataset as the one I will be using in this blogpost. It might be worth you having a quick look at that first, but a couple of headlines from that is that it looks like there were substantial dips in the number of people in inpatient services at times when the COVID-19 pandemic was peaking, with high pressure on health services and nationwide lockdowns. There have been increases in the number of people in inpatient services after these periods, but not to the levels seen before the pandemic. These dips in numbers were proportionally higher for children and young people and people not on formal sections.

The dataset I used in that blogpost and in this one is the Mental Health Services Data Set (MHSDS) - this is a large dataset collected by all NHS-commissioned mental health services in England, and includes information on people flagged in these services as an autistic person or a person with learning disabilities. NHS Digital extracts the information specifically related to people with learning disabilities and autistic people in any mental health inpatient service every month, including both the 'specialist' inpatient services that have largely been the focus of Transforming Care/Building The Right Support, and general mental health inpatient services. Providing information for the MHSDS is mandatory for NHS funded service providers, including independent sector providers.

What does the MHSDS say about restrictive interventions?

The MHSDS includes information on both the number of people subject to any restrictive intervention in any single month, and the number of restrictive interventions people have been subject to in any single month. It also provides information on a range of specific types of physical restraint, and on mechanical restraint, chemical restraints, seclusion and segregation.

What do the MHSDS statistics say about restrictive interventions overall? The graph below shows the number of people with learning disabilities and autistic people in inpatient units who have been subject to at least one restrictive intervention in each month, from January 2020 through to August 2021. There are particular spikes in May and July 2020, which I'll come to later, but the overall picture is of fluctuating numbers of people subject to restraints over time.

Because the number of people in inpatient services also fluctuates over this time period, we can also look at what percentage of people in inpatient units in each month are subject to at least one restrictive intervention. This is what the graph below shows - again there are the spikes in May and July 2020, but overall the trend looks to be increasing over time. In January 2020, 7.5% of people were subject to at least one restrictive intervention. By August 2021 this was 9.1% of people.

As well as the number of people subject to restrictive interventions, we know that people can be subject to multiple restraints, so the graph below shows the total number of restrictive interventions that autistic people and people with learning disabilities in inpatient services were subject to each month. Again, we see substantial fluctuations month by month throughout the pandemic, with potential dips when there were fewer people in inpatient units.

To take this into account, the graph shows the average number of restrictive interventions for every person that was subject to at least one. This again shows fluctuations over time, with a potential increasing trend until the summer of 2021. On average, people were subject to around 10 restrictive interventions in every month - one every three days.

The publicly available information also allows us to look at restraints that people in different age groups have been subject to. To simplify things a bit I've looked at four age groups: children and young people aged under 18; adults aged 18-24; adults aged 25-35; and adults aged 35+. The graph below shows the percentage of people in inpatient units in each age group who have been subject to at least restrictive intervention in each month. As the graph shows, people aged 18-24 are consistently most likely to have been subject to restraint - even setting aside the May and June 2020 spikes, around 13-14% of people in this age group experience restraint in each month.

Following on from this, how many restrictive interventions are people in different age groups subject to? The graph below shows that children and young people aged less than 18 are consistently most likely to experience more restrictive interventions in each month - in some months more than 20 restrictive interventions per person subject to at least one.

What restrictive interventions are people subject to?

What do the statistic tell us about which types of restraint people with learning disabilities and autistic people in inpatient units have been subject to throughout the COVID-19 pandemic? The graph below shows the number of people who have been subject to different types of physical restraint throughout the time of the pandemic, according to the MHSDS.

The highest numbers of people are subject to four types of physical restraint (which may be increasing over the time of the pandemic): standing restraint, supine restraint, seated restraint and 'other' physical restraint. By August 2021, at least 150 people were subject to each of these types of physical restraint (and I don't understand why 'other' restraint should be increasing over time - what types of physical restraint are being put into that mysterious box?). It is also worth noting that prone restraint is still happening and being recorded - 100 people per month experience prone restraint.

How many times are people being subject to physical restraints? The graph below shows the total number of instances recorded of different types of physical restraint. The same four types of physical restraint discussed above are also the ones most commonly used: there are potential decreases over time in the number of times supine and standing restraint have been used, but a definite increase in the recording of 'other' restraint.

We can also look at the same type of information for other forms of restrictive intervention: chemical restraints, mechanical restraint, seclusion and segregation. The graph below shows the number of people subject to these forms of restrictive intervention. Seclusion is experienced by a large and increasing number of people across the pandemic period, up to over 160 people in the month of August 2021. Oral chemical restraint and rapid tranquilisers are each experienced by around 80 to 100 people every month, with the number of people subject to oral chemical restraint more than doubling from January 2020 to August 2021.

In terms of the number of times people have been subject to these forms of restrictive intervention, the graph below shows a similar picture, with high use of seclusion throughout and high and increasing use of oral and rapid tranquiliser chemical restraint over time.

NHS and independent sector inpatient services, and the case of the missing information

Information from the MHSDS about restraints used on people with learning disabilities and autistic people can be broken down by whether the inpatient service is an NHS or independent sector. The two graphs below show the number of people subject to at least one restrictive intervention and the total number of restrictive interventions people are subject to, broken down by NHS vs independent sector provider.

Both graphs seem to show a similar picture. For the number of people subject to at least one restrictive intervention, in NHS inpatient services there is a dip in the first peak of the COVID-19 pandemic then a steady increase ever since. In independent sector services there is the double spike in May and July 2020 I've mentioned already, interrupting a gradual decrease and flattening out over time of the number of people subject to restrictive interventions.

The picture in terms of the total number of restrictive interventions is similar - increasing over time in NHS inpatient services, and (except for the spikes) gradually decreasing over time in independent sector inpatient services.

Is this an accurate picture? The spikes in May and July 2020 (finally, he gets to the spikes!) give us a clue. In these two months, the Cygnet organisation (recorded in the MHSDS in May 2020 as having 360 autistic people and people with learning disabilities in inpatient units) recorded 830 and 775 restrictive interventions respectively. In June 2020, August 2020, and every month since, the number of restrictive interventions is recorded as an asterisk, meaning anything between 0 and 4 restrictive interventions in total for the month. These could mean a complete absence of reporting of restrictive interventions in inpatient services for the whole Cygnet organisation. Elysium (485 people in May 2020), Partnerships in Care (90 people) and Huntercombe (90 people) all report asterisk levels of restrictive interventions throughout the whole pandemic period - St Andrews is the only large (50+) independent sector organisation that reports data to the MHSDS every month on restrictive interventions in inpatient services.

So, the figures on restrictive interventions within independent sector inpatient services are likely to massively undercount the restraints that people are being subject to - even the two months of spikes will be undercounts as they are missing information from some big independent sector organisations.

Summary, and why data matters

So, what do I think the MHSDS information tells us about restraints in inpatient services throughout the COVID-19 pandemic (so far)? A few things:

• Overall, about 9% of people with learning disabilities and autistic people in inpatient services will be subject to an average of 10 restrictive interventions per person in any given month.
• Young adults aged 18-24 are most likely to be subject to restrictive interventions.
• Children and young adults up to 18 years old are moat likely to be subject to multiple restraints.
• Even taking the incompleteness of reporting into account, there is a possible trend towards the increasing use of restrictive interventions over the course of the pandemic.
• Standing, supine, seated and 'other' physical restraints are most commonly reported (at least 150 people are subject to each of these types of physical restraint every month).
• Around 100 people every month are subject to prone restraint.
• An increasing number of physical restraints are being recorded as 'other'.
• Seclusion, oral chemical restraint and rapid tranquilisers are most commonly reported, and possibly increasing over the time period of the pandemic.

Why does data matter?

Accountability - self-advocacy groups are getting together and wanting to use information like this to hold local inpatient services to account. Please take a look at this open letter from My Life My Choice, Sunderland People First, Speak Up, and Sheffield Voices - you can sign it electronically.

Visibility - although the MHSDS has been collecting restraints information for some time, it was only made routinely publicly available after a File on 4 programme reported on restraints information gained through a bitterly contested Freedom of Information process. Without this visibility, any form of scrutiny is much more difficult.

Proactive regulation - CQC inspections of inpatient services are more frequently rating services as Inadequate, only using information on restraints that do not seem to be reported to the MHSDS (see this recent CQC inspection report on Cygnet Views Matlock). If MHSDS data were complete and regularly reported, inspections could be more proactive rather than reactive.

The political uses of data. We need completeness of data collection for a level playing field between organisations that comprehensively report restrictive interventions vs those who don't. I really don't understand how major companies can just not report supposedly mandatory data for months and years on end, with seemingly no consequences.

Policy. It's an obvious point, but if there are national policy ambitions to reduce the use of restraints, you need to have a reasonably complete picture of what people are being subjected to.

That's more than enough - words, graphs, and utter grimness of people's lives in the abstracted form of numbers.

The number of people with learning disabilities and autistic people in inpatient services in England through the COVID-19 pandemic

In this blogpost, I'm going to summarise some of the information collected monthly by NHS Digital about the number of autistic people and people with learning disabilities in inpatient services in England throughout the COVID-19 pandemic (so far). There will be graphs.

I've gone on and on about this plenty of times before, so I'll try and be brief here (see this blogpost for a loooong description of the issues), but NHS Digital publish data from two sources about the number of people with learning disabilities and autistic people in inpatient services.

The first is Assuring Transformation (AT), which is the one the DHSC and NHS England/Improvement like to cite as evidence of the progress of Transforming Care/Building The Right Support. This is information provided retrospectively by NHS commissioners of these inpatient services, and largely (but not exclusively) concerns autistic people and people with learning disabilities in 'specialist' inpatient services assumed to be the preserve of national policy.

The graph below shows the world according to Assuring Transformation, for each month from January 2020 through to August 2021. Pandemic, what pandemic? Assuring Transformation shows the same glacial progress as usual, from 2,305 people in January 2020 through to 2,040 people in August 2021 (this figure will increase by at least 100 people as those reported retrospectively get added). You will notice in this graph there are supposed to be two lines, although in this graph they are so similar as to be merged. The first line records a snapshot of the number of people in inpatient services at the end of each month. The second line records the number of people who have been in an inpatient service at any point in the month, as people can be admitted or discharged within each month. As you can see, the picture provided by Assuring Transformation is of very little movement of people in or out of inpatient services throughout the pandemic. As the BBC and Sky News have recently reported, 100 autistic people and people with learning disabilities have been in inpatient units for 20 years or more.

The second data source reported on monthly by NHS Digital is the Mental Health Services Data Set (MHSDS to its friends). This is collected by all NHS-commissioned mental health services in England, and NHS Digital pull out figures for people in any mental health inpatient service who have been flagged as a person with learning disabilities or an autistic person. The graph below shows the MHSDS figures for the number of autistic people and people with learning disabilities in inpatient services from January 2020 to August 2021, with the Assuring Transformation figures kept in for comparison purposes.

As you can see the picture from the MHSDS is quite different to AT, in a number of ways.

First, the MHSDS records much higher numbers of people with learning disabilities and autistic people in inpatient services than AT: 3,515 people compared to 2,040 people at the end of August 2021, for example. Presumably this is because many people are flagged who are in a wide range of 'mainstream' mental health inpatient units not considered by NHS commissioners to be part of the Building The Right Support programme.

Second, the MHSDS records much higher numbers of people in inpatient units at some point in each month compared to the number of people in inpatient units at the end of each month. This is because according to the MHSDS many autistic people and people with learning disabilities are in inpatient units for very short periods of time (in addition to the people who are in units for years and years). For example, 185 people were admitted and discharged within the calendar month of August 2021 (155 of these people were apparently admitted for the purposes of 'respite').

Third, the MHSDS shows what looks like a big impact of the COVID-19 pandemic on the number of people with learning disabilities and autistic people in inpatient units. At the time of the first peak of the pandemic (with its associated lockdown) the number of people in inpatient units drops quite sharply (with fewer people being admitted into inpatient units for short periods of time). There is only a slight increase after the first lockdown through the rest of 2020, until another drop during the second/third peak of the pandemic in winter 2020. From the spring of 2021 when lockdowns were eased again, the number of people in inpatient units rises, although not to pre-pandemic levels.

Sticking with the MHSDS, did these changes during the pandemic affect some groups of people more than others? The graph below shows the number of people in inpatient services at the end of each month by four age bands (under 18, 18-24, 25-34, and 35+, as children and young people in inpatient services have been a particular concern).

We can see decreases for all age groups through the first two/three peaks of the pandemic, with sustained increases after the end of the winter/spring lockdown of 2021. Because the number of people in different age bands is so different, we can also look at percentage changes within each age band, using January 2020 as the baseline. As the graph below shows, there were proportionally much bigger reductions in the number of children and young people aged under 18 in inpatient services throughout the pandemic (so far), with a possible 'rebound' increase to at or above pre-pandemic numbers of people in the summer of 2021.

I've used a similar format to look at the impact of people by their legal status. Unsurprisingly, the two graphs below show less change in the number of people in inpatient services with Part III or other sections through the pandemic. The number of people under Part II sections reduced in the pandemic peaks/lockdown periods, but have returned to pre-pandemic numbers. The number of people in inpatient units not under section (recorded as 'informal' legal status in the MHSDS, but bearing in mind Lucy Series' point that this isn't an accurate term) dropped considerably in the first pandemic peak/lockdown, stayed at this level through to the spring of 2021, and has not returned to pre-pandemic levels.

One final graph. The graph below looks at the number of autistic people and people with learning disabilities in NHS and independent sector inpatient units (all funded with public money, of course). The number of people in NHS inpatient services dropped sharply during the first pandemic peak/lockdown, and increased to less than pre-pandemic levels soon afterwards. The number of people in independent sector inpatient services seems to decline consistently through to the end of the second/third pandemic peak/lockdown, but increases sharply in the spring of 2021.

It's hard to know what to make of this information, particularly as the COVID-19 pandemic continues and both NHS and social care services in many respects are still operating very differently to how they were before the pandemic. But it is clear that there have been substantial reductions in the number of people with learning disabilities and autistic people in inpatient services at peak pressure points in the COVID-19 pandemic, with a disproportionate impact on children and young people not on a formal section and likely to be in inpatient services for short periods of time (including for 'respite'). The number of people in inpatient services has been increasing again from spring 2021, although the extent of this and how long it will last is unclear. 

Most importantly, as far as I know there is virtually no public information on what it has been like for autistic people and people with learning disabilities in inpatient services through the COVID-19 pandemic, what has happened to people who would before have been admitted to inpatient services, what other forms of support people have had (or not had), and what all this means for people's lives now and in the future.

People with learning disabilities in paid employment in England 2020/21 - what do the social care statistics tell us?

This blogpost is the third in a set looking at various aspects of the social care statistics recently published by NHS Digital for 2020/21, focusing on adults with learning disabilities in England. The first two blogposts gave an overview of trends in social care support and expenditure for adults with learning disabilities, and a more focused look at what kinds of places those adults with learning disabilities getting social care are living in.

This blogpost updates previous posts on what the statistics say about the self/paid employment of working age (aged 18-64 years old) adults with learning disabilities in England. These figures are provided by local authorities every year, and since 2014/15 have only been provided for people getting long-term social care (before 2014/15 it was the larger group of people known to local authorities as a person with learning disabilities, even if they weren't getting long-term social care support). This means that these figures don't include the much, much larger group of adults with learning disabilities who aren't known to local authorities or GPs and who don't get any kind of support related to their learning disability.

It is important to note that these statistics are collected for financial years (April to March), so they will represent what was happening for adults with learning disabilities up to March 2021, through the first two/three peaks of the COVID-19 pandemic in England. It is also really important to say that the quality of this information has been questioned at the best of times – there are massive caveats about the extent to which local authorities would be able to collect this kind of information in the middle of the pandemic, particularly given the complexity of people’s working situations (for example, furlough) which these statistics were not designed to pick up.

Some of the numbers reported here are included in the NHS Digital Adult Social Care Outcomes Framework (indicator 1E, if you're interested), although some of the numbers are more buried in publicly available but less accessible CSV datafiles. 

What do the numbers tell us?

The first graph below shows the number of working age adults with learning disabilities that councils say are in any self/paid employment, broken down by whether people are in employment for 16+ hours per week or less than 16 hours per week (and 1 hour a week can count in these statistics). The gap between 2013/14 and 2014/15 is because of the change in data collection I mentioned earlier, so numbers before and after then can't be compared, and 2008/2009 was the first year that information was collected so it's rather dodgy for that year.

 

According to these figures, in 2020/21 there were 6,870 working age adults with learning disabilities getting long-term social care in any form of self/paid employment. After a couple of years of the number of people in paid/self employment edging towards 8,000, this is now the lowest number of people in paid employment since the first dodgy year of data collection in 2008/09. Consistent across the years is that most of the people in employment (65% of people in 2020/21) are working for less than 16 hours per week.

What do these numbers mean in terms of employment rates? The graph below shows the employment rates for working age adults with learning disabilities over the same time period. The columns show the overall employment rate - in 2020/21 this was 5.1%, compared to 75% for adults generally in March 2021. This is the lowest employment rate for adults with learning disabilities recorded since the statistics were changed in 2014/15.

The lines on the graph show employment rates for men and women with learning disabilities separately. Employment rates for men (the purple line) are consistently higher (5.7% in 2020/21) than employment rates for women (the blue line) (4.4% in 2020/21 with this gender employment gap staying fairly stable over time.

The last graph below sounds an appropriate note of caution about the reliability of information on self/paid employment provided by councils. This shows, for all working age adults with learning disabilities getting long-term social care, whether councils say they are: 1) in self-paid employment; 2) not in employment but actively seeking work (and presumably therefore liable to potential benefit sanctions); 3) not in employment but not actively seeking work. There is also a fourth category, where councils say they don't know the employment status of the person. 

 

Over time, the number of people whose employment status is unknown has decreased rapidly, from 44% of working age adults with learning disabilities in 2014/15 to 21% of people in 2020/21 (21% is still a big chunk, however). It is unclear how councils are making decisions about whether to record someone as actively seeking work or not.

Overall, this update shows, bearing in mind understandable caveats about the quality of the information that could be collected during the COVID-19 pandemic, further reductions in employment rates (from a ridiculously low base) for working age adults with learning disabilities getting long-term social care, with most work being extremely part-time, and a gender employment gap. 

As far as we know, many more than 5.1% of working age adults with learning disabilities want to work. We know that secure, stable paid employment for people with learning disabilities is associated with better physical and mental health, and we know that supported employment is highly cost-effective. Building sustainable, fulfilling paid employment for people with learning disabilities, in our current circumstances of wide-ranging labour shortages, surely has to be an urgent ‘building back better’ priority?

 

Where are people with learning disabilities living? Or (again...) why social care isn't all about older people in care homes

I recently wrote a blogpost trying to summarise trends over time in social care services for adults with learning disabilities in England, using the latest annual tranche of statistics concerning social care for adults in England produced by NHS Digital. This slightly less epic blogpost focuses on one issue in more depth than I could go into there – where are adults with learning disabilities who are getting long-term social care living? Part of the purpose of this blogpost is to provide yet more evidence to the chorus of people shouting pointlessly throughout the COVID-19 pandemic that social care involves a lot more than older people in care homes.

As I mentioned in the previous blogpost, the shadow of COVID-19 falls heavily on these statistics, with 1,500 fewer adults with learning disabilities getting long-term social care at the end of March 2021 compared to a year before, possibly due to the high number of people with learning disabilities in England who have died from COVID-19. It is also important to note that the social care statistics identify people by their ‘primary care need’, and it is possible that some people with learning disabilities (for example a person with learning disabilities and dementia) have been identified as having a different primary care need. 

What are the living situations of adults with learning disabilities who are getting long-term social care?

The headline social care statistics only report the living situations of people living in residential care and nursing homes (social care support for people in other living situations is characterised by whether they’re getting council-commissioned support or some form of personal budget). The number of adults with learning disabilities in residential and nursing care from 2014/15 to 2020/21 is in the graph below, broken down by whether people are aged 18-64 or 65+. For people aged 18-64, the trend is for a substantial decrease in the number of people living in residential care – a reduction of 16% in 6 years. The picture for the number of adults aged 18-64 in nursing care is more static over time. For adults with learning disabilities aged 65+, the number of people in residential care and nursing care has been gradually increasing up to 2019/20 (although there were ominous decreases in 2020/21). 

However, adults with learning disabilities in these living situations are a minority of adults with learning disabilities who are getting long-term social care. Only 18% of adults with learning disabilities aged 18-64 and 37% of adults with learning disabilities aged 65+ who are getting long-term social care are living in residential or nursing care.

More hidden in the social care statistics is more detailed information on where local authorities think that adults with learning disabilities aged 18-64 who are getting long-term social care are living (a holdover indicator introduced, along with employment, with Valuing People). The monster graph below stacks up all the different types of living situation, from 2014/15 to 2020/21 (again note the ominous decrease in 2020/21).

 

To hopefully make this a bit more digestible, I’ve picked out trends for the most common types of living situation in the graph below. As the graph shows, the most common (and increasing up to 2019/20) living situations for adults with learning disabilities aged 18-64 are not residential or nursing care. By far the most common living situation was people living with their families (48,015 people in 2020/21; 36% of people recorded in this database). Over 30,000 people were living in some form of supported accommodation in 2020/21 (31,070 people; 23%), over 20,000 people were tenants or owner-occupiers (20,145 people; 15%) and 3,450 people (3%) were living in a Shared Lives arrangement. Throughout the COVID-19 pandemic adults with learning disabilities in all these living situations (and that’s without thinking of the majority of adults with learning disabilities, who do not get any social care support) were not exactly at the front of the queue when it came to government guidance, support with PPE and the essentials of daily life, repurposing much-needed social care support, and support to ensure that support workers could minimise the COVID-19 risks to themselves and the people they were supporting.

 

 Where is the money going? 

As well as looking at how many people are living in different kinds of places, we can also look at expenditure on different kinds of social care services for adults with learning disabilities. The graph below summarises gross current expenditure on different types of social care services for adults with learning disabilities aged 18-64 and 65+ (for more details see the previous blogpost). These figures are not adjusted for inflation. 

Despite the number of adults with learning disabilities aged 18-64 in residential or nursing care steadily falling over time (and representing 18% of those with learning disabilities in this age group getting long-term social care), expenditure on residential and nursing care for this group has stayed fairly static over time, and stood at £1.8 billion in 2020/21, 32% of all social care expenditure on adults with learning disabilities aged 18-64. Expenditure on supported living continues to increase year-on-year (standing at £1.6 billion in 2020/21), even into 2020/21 when the number of people aged 18-64 living in supported accommodation did not increase. The huge impact of the COVID-19 pandemic must be borne in mind here, particularly in how local authorities may have been financially managing ‘voids’ where unoccupied places continue to be at least partially funded (e.g. https://www.glh.org.uk/wp-content/uploads/2013/02/Void_protocol_example.pdf ).

 

So, among those adults with learning disabilities getting long-term social care, people are most commonly living with their families. The vast majority of adults with learning disabilities getting long-term social care (95%) are not older people living in residential or nursing care, and the vast majority of social care expenditure for adults with learning disabilities (94%) is not spend on residential or nursing care for older people. How can public discussion and policy-making be so punishingly reductive?

Building Back Better or The New Normal? Social care statistics and adults with learning disabilities in England

NHS Digital have recently released their annual tranche of statistics concerning social care for adults in England (thanks to @GrahamTAtkins for alerting me to them). This blogpost is the latest in a series about social care statistics concerning adults with learning disabilities in England, updating the statistics to include the latest 2020/21 figures. Because the reporting year for these statistics runs from April to March, these are the first annual statistics that might tell us something about the impact of the COVID-19 pandemic on social care services for adults with learning disabilities. When looking through these statistics it is important to remember the pressures local authorities have been under, which might have affected the quality of the information collected for these statistics.

Councils with social services responsibilities return information to NHS Digital every year on how many adults are using various forms of social care, and how much councils spend on social care (this doesn’t include other types of state funding relevant to social care, such as housing benefit as part of supported living support). I've tried to use some of the statistics to answer three questions.

Question 1: How many adults with learning disabilities were getting access to social care in 2020/2021?

From 2014/15 the types of long-term social care support people get have been grouped into one of six mutually exclusive categories: residential care, nursing care, direct payment only, support via a personal budget partly including a direct payment, a council-managed personal budget, and council-commissioned community support only.

The first graph below shows the number of adults with learning disabilities aged 18-64 getting various types of personal budget or council-commissioned community support at some point during the year from 2014/15 to 2020/21), and also the number of adults aged 18-64 in residential or nursing care.

This graph suggests that trends evident from 2014/15 to 2018/19 (before the COVID-19 pandemic) have continued through to 2019/20 (the end of the financial year 2019/20 was when the first peak of COVID-19 was starting to hit) and 2020/21 (through the first and second/third peaks of the pandemic), although even within these relatively insensitive statistics there are signs of some differences in 2020/21. Adults with learning disabilities aged 18-64 were most commonly getting support in the form of council-managed personal budgets (the extent to which most of these feel any different to council-commissioned community services is debatable). The number of people getting support in the form of direct payment only or with part-direct payment is now the second most common vehicle for long-term social care support, although recent increases appear to have stalled in 2020/21. The number of people getting council-commissioned community support only continues to decrease.

In terms of residential and nursing care, the graph shows that although the number of adults aged 18-64 in residential care and nursing care continues to gradually decline over time, in 2020/21 they still represent 18% of all adults with learning disabilities aged 18-64 getting long-term social care.

In total 133,670 adults with learning disabilities aged 18-64 were getting long-term social care at some point in 2020/21. While there had been a steady trend of increasing numbers of adults with learning disabilities getting long-term social care year on year from 2014/15 to 2019/20, from 2019/20 to 2020/21 there was a decrease of 1,760 in the number of people getting long-term social care. Although the statistics cannot tell us the reasons for this, a big part of the reason is, bluntly, that so many people with learning disabilities have died during the COVID-19 pandemic, with the peak age of death for people with learning disabilities from COVID-19 being 55-64. Extrapolating from notifications of people’s deaths to the LeDeR programme (which is estimated to pick up 65% of the deaths of people with learning disabilities), over 2,500 people with learning disabilities to date in England are likely to have died from COVID-19.

The second graph below presents the same information for adults with learning disabilities aged 65+. Please note that, because the number of people with learning disabilities aged 65+ using social care is much smaller compared to people aged 18-64, I have used a different vertical scale.

Again, council-managed personal budgets are the most common form of community-based support for older adults. These, along with other forms of personal budget, are continuing to increase over time while the number of adults getting council-commissioned community services only continues to decrease. These trends have continued into 2020/21. The number of older adults with learning disabilities in both residential care and nursing care fluctuates over time, but a broad trend of increases over time from 2014/15 to 2019/20 was not continued into 2020/21, where there decreases in the number of people aged 65+ in both residential and nursing care.

In total 17,895 adults with learning disabilities aged 65 or over were getting long-term social care at some point in 2020/21, continuing a steady upwards trend from 2014/15.

 

However, the statistics I’ve presented so far are for people getting long-term social care at some point in each year. This may under-estimate the impact of COVID-19 on the number of people currently getting social care, particularly where people have died during the year. The NHS Digital statistics also have snapshot figures on the number of people with learning disabilities getting adult social care at the end of each financial year, which we can compare to the number of people getting social care at some point during the year. The graph below shows this information for adults with learning disabilities aged 18-64, from 2014/15 to 2020/21. In 2020/21, there is a clear reversal in the upward trend, with both people getting long-term social care at some point in the year (133,670 people) and people getting long-term social care support at the end of the financial year (125,480 people) falling from the year before.

 

The next graph below shows the same information for people aged 65+. While the number of people getting long-term social care support at some point in the year continues to increase into 2020/21, the number of people getting long-term care at the end of the 2020/21 financial year has dropped compared to 2019/20 (this also dropped from 2018/19 to 2019/20).

 

While these statistics are difficult to interpret, there were 1,500 fewer adults with learning disabilities of all ages getting long-term social care at the end of March 2021 compared to the same time the year before.

  

Question 2: What happened to people trying to get a social care service?

Although it is limited, adult social care statistics also include information on new people coming to the attention of social care services, and what happens to them after a ‘completed episode of short-term care to maximise independence’ (which to my untutored eye looks functionally equivalent to assessment). The graph below shows this information for all adults with learning disabilities aged 18+, from 2014/15 to 2020/21. Looking at the graph, 2018/19 looks like a bit of an anomaly, largely due to much higher numbers of people being signposted to universal services or other forms of non-social care support than in any other year. There seems to be an upward trend in the number of adults with learning disabilities coming to the attention of social services from 2014/15 to 2018/19, followed by a decrease from 2018/19 through to 2020/21.

In terms of what was happening in 2020/21, 820 adults with learning disabilities (almost all of whom were aged 18-64) came to social services as new clients. Of these, 37% (305 people) were identified as having no needs and therefore requiring no services. For 12% (100 people) the response from social services was to signpost people to universal services or other forms of non-social care support. Relatively few people (85 people; 10%) went on to get some form of low level or short-term support from social care, with slightly more people (165 people; 20%) going on to get some form of long-term social care support. Very few (25 people; 3%) declined a service that was offered. 

Throughout the pandemic, the number of adults with learning disabilities coming to the attention of social care declined, with a minority of this group getting any form of social care support during the COVID-19 pandemic beyond signposting elsewhere. 

 

Question 3: How much money were councils spending on social care services for adults with learning disabilities?

The graph below shows gross expenditure by local authorities on social care for adults with learning disabilities from 2014/15 to 2020/21, broken down by age band and categories of spending. It is important to remember that these figures do not include housing benefit (an essential component of supported living arrangements). These figures are also not adjusted for inflation.

 

A couple of observations. Overall, despite the number of adults getting social care decreasing during 2020/21, social services expenditure continued its steady upwards trajectory in absolute terms in 2020/21 at an annual growth rate of 4% from 2014/15. Local authority expenditure on social care for adults with learning disabilities totalled £6.3 billion in 2020/21, 39% of all local authority expenditure on adult social care. The two line graphs below show trends in expenditure on specific types of social care service for adults with learning disabilities aged 18-64 and 65+ (with different scales for the two age groups). Spending on residential care is still the biggest category of expenditure, although spending on supported living is rapidly catching up, and spending on home care continues to decline.

 

Unit costs for residential care and nursing care for adults with learning disabilities continued their upward trend in 2020/21. For adults aged 18-64, the average cost to local authorities of residential care was £1,687 per person per week and nursing care £1,446 per person per week. Unit costs were cheaper in 2020/21 for adults aged 65+ compared to adults aged 18-64 (£1,126 per person per week in residential care; £914 per person per week in nursing care), although unit costs are higher for these services for adults with learning disabilities than for any other group of people getting social care.

 

To sum up, it seems like the COVID-19 pandemic has largely magnified longer term trends in social care services and expenditure for adults with learning disabilities. The big, and grim, difference is that 1,500 fewer adults were getting long-term social care at the end of March 2021 compared to the end of March 2020. However, there is a question about how sensitive these statistics are to the seismic changes to people’s social care support that people with learning disabilities have been reporting throughout the COVID-19 pandemic. For example, in the Coronavirus and people with learning disabilities project many people reported paying for social care services they weren’t currently getting, getting less of a service than they used to, or some services which involved going out being replaced by online services, none of which would be picked up by these statistics. With local authority expenditure on social care services for adults with learning disabilities still increasing (and now representing 39% of all adult social care expenditure) even though fewer people are being supported (how much expenditure is on 'voids'?), are local authorities going to ‘build back better’, or is this now ‘the new normal’?

Challenging Obstruction - blog for Dying To Matter

This is a version of a piece for the Dying To Matter website. This one is a bit longer and contains a fuller set of references.

Please be warned that there is some grim information and opinions quoted in this blogpost, and some of the references contain what is now offensive language.

 

How and when people with learning disabilities die has for a long time been one of the great unmentionable issues. The role of policies and services in people’s deaths, both at a collective level and in terms of individual people’s deaths, has for the most part been rendered invisible.

In this iceberg of indifference, reluctantly battling loved ones or media scrutiny have, in the face of obstruction or worse, managed to occasionally push the deaths of people with learning disabilities to the surface. This piece will provide some context about efforts in England to expose the truth about the deaths of people with learning disabilities, and the responses to these efforts.

There is a long, grim, history of both high death rates among people with learning disabilities in institutions and these death rates being ignored. Among people in institutions run by the Metropolitan Asylums Board, in 2014 one in nine people (11.2%) in asylums died. In 1918 more than one in four people in asylums died (27.0%), partly because of a previous pandemic, the Spanish Flu[1]. Move forward 50 years, to the Inquiry into allegations of ill-treatment of people with learning disabilities at Ely Hospital in 1969, and little appears to have changed:

“The story of Emerson’s death betrays what seemed to us to be an unduly casual attitude towards death at Ely.” [2]

This and other inquiries did not result in major statements of government policy paying much attention to the deaths of people with learning disabilities[3] [4] until Valuing People Now in 2009[5] (there has not been a comprehensive strategy for people with learning disabilities in England since). Valuing People Now was the culmination of a government response to increased activity documenting both the health inequalities experienced by people with learning disabilities in life[6], and the consequences of health service discrimination on people’s deaths[7], followed by the government setting up an “independent inquiry into access to healthcare for people with learning disabilities”[8].

Since then, the language of health inequalities and premature deaths has become commonplace in repeated reviews[9] [10], inquiries[11] [12], policy statements and government responses[13] [14] [15] [16] [17]  to the stubborn grim realities that keep on surfacing. At this level, the talk is of deep concern, unwavering commitment, and continuous incremental progress. While there have been some positive changes in specific health programmes such as flu jabs and health checks over time[18], the evidence we have tells us that improvements in the life expectancy of people with learning disabilities have stalled in recent years[19], the 20-year gap in the age at which people with learning disabilities die compared to other people is not closing and may be starting to widen[20], and the institutional discrimination resulting in people’s deaths continues unabated[21] [22] [23] with people with learning disabilities three times more likely to die from an avoidable medical cause of death compared to other people[24].

Despite official narratives of ‘tackling the problem’, the experience of grieving family members and allies is of multiple systems that stack the deck against the truth-telling and fundamental change necessary to prevent people with learning disabilities dying before their time. The JusticeforLB campaign[25] following the death of Connor Sparrowhawk in a ‘specialist’ NHS inpatient unit, had to fight layer upon layer of health service suppression, deflection, sabotage, brutal attempts to discredit and mother-blame[26], which was replicated throughout Connor’s inquest[27] and in the subsequent fitness to practice tribunal of the lead psychiatrist on the unit[28].

Open Justice live tweeting of inquests of people with learning disabilities who have died[29] reveal the brutal reality of how inquests are conducted, with health and social care services stacking themselves with aggressive lawyers (paid for with public money) while families having for pay for their own legal representation are told that the process is not adversarial[30]. The live tweeting of inquests shows over and over again how the fundamental basics of care can be absent for people with learning disabilities: not getting food for weeks while in hospital; obvious and life threatening health issues not being noticed or considered worthy of addressing by support staff; professionals not taking responsibility and hiding behind mythical ‘complexities’ of the person.

The very processes that are supposed to uncover the truth about the deaths of people with learning disabilities are themselves subject to similar tactics of institutional suppression, delay and deflection. A report by Mazars into Southern Health Foundation NHS Trust, where Connor Sparrowhawk died, revealed that investigations into the deaths of people with learning disabilities were simply not conducted, making people’s deaths invisible to scrutiny (Southern Trust originally tried to brush Connor’s death under the carpet as due to ‘natural causes’, rather than the neglect found at the inquest)[31]. This report was itself subject to so much delay that it was eventually leaked to the press, after concerted attempts to water down and discredit its contents.

A review by England’s health and social care regulator, the Care Quality Commission, documented widespread poor practice across NHS Trusts in investigating people’s deaths[32], yet its final recommendations did not do justice to what families told the review[33] and has not resulted in fundamental improvements[34].

The Learning from Deaths Review Programme (LeDeR) was set up as a national programme across England to ensure that all deaths of people with learning were reviewed as part of a local and national service improvement programme[35]. However, the programme was under-resourced from the outset, with NHS Trusts expected to find their own (non-independent) reviewers and participation in the LeDeR programme voluntary rather than mandatory. Annual reports from the LeDeR programme were also subject to long delays, with the programme highly restricted by its commissioner (NHS England) in what it could say.

Where are we now? It is clear that the series of initiatives ostensibly designed to tackle the premature deaths of so many people with learning disabilities do not seem to be having a major impact on the health inequalities people experience, the basic standards of good healthcare that are less often applied to people with learning disabilities, or on the rigour and sensitivity of investigations and inquests when someone dies. Fundamentally, these piecemeal initiatives are not addressing the deep institutional discrimination against people with learning disabilities that seems to be so pervasive. Without a serious attempt to address this institutional discrimination, we remain stuck in a performative and pointless cycle of Committee, Inquiry, Report, Repeat[36].

I want to finish with an extended (horrible) quote: “The physical welfare of the [person with learning disabilities] of today 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 that 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 [people with learning disabilities] as a class is decidedly inferior to, and their expectation of life still remains appreciably less than, that of the ordinary population.” This was written in 1914 by the highly influential psychiatrist and eugenicist Alfred Tredgold, at a time when half of all the people in the institution he oversaw died between the ages of 15 and 19 years[37]. Can we really say the worldview expressed here is any different now?

 

 

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[1] Walmsley J, Todd S, Bernal J and O’Driscoll D (2021). When epidemics bring too many deaths. Community Living, 34.3, April9 2021. https://www.cl-initiatives.co.uk/when-epidemics-bring-too-many-deaths/

[2] Report of the Committee of Inquiry into Allegations of Ill-Treatment of Patients and other irregularities at the Ely Hospital, Cardiff (1969). Presented to Parliament by the Secretary of State of the Department of Health and Social Security. Cmnd 3975. London. https://www.sochealth.co.uk/national-health-service/democracy-involvement-and-accountability-in-health/complaints-regulation-and-enquries/report-of-the-committee-of-inquiry-into-allegations-of-ill-treatment-of-patients-and-other-irregularities-at-the-ely-hospital-cardiff-1969/

[3] Department of Health and Social Security (1971). Better services for the mentally handicapped. Cmnd 4683. London: HMSO.

[4] Department of Health (2001). Valuing People: A new strategy for learning disability for the 21^st century. Cm 5086. London: Department of Health. https://assets.publishing.service.gov.uk/government/uploads/system/uploads/attachment_data/file/250877/5086.pdf

[5] Department of Health (2009). Valuing People Now: a new three-year strategy for people with learning disabilities. London: Department of Health. https://webarchive.nationalarchives.gov.uk/ukgwa/20130107105354/http:/www.dh.gov.uk/prod_consum_dh/groups/dh_digitalassets/documents/digitalasset/dh_093375.pdf

[6] Disability Rights Commission (2006). Equal Treatment: Closing the Gap. A formal investigation into physical health inequalities experienced by people with learning disabilities and/or mental health problems. London: DRC. https://disability-studies.leeds.ac.uk/wp-content/uploads/sites/40/library/DRC-Health-FI-main.pdf

[7] Mencap (2007). Death by indifference. London: Mencap. https://www.mencap.org.uk/sites/default/files/2016-06/DBIreport.pdf

[8] Jonathan Michael and the Independent Inquiry into Access to Healthcare for People with Learning Disabilities (2008). Healthcare for all: report of the independent inquiry into access to healthcare for people with learning disabilities. London: Department of Health. https://webarchive.nationalarchives.gov.uk/ukgwa/20130105064250/http://www.dh.gov.uk/en/Publicationsandstatistics/Publications/PublicationsPolicyAndGuidance/DH_099255

[9] Care Quality Commission (2016). Learning, candour and accountability: A review of the way NHS trusts review and investigate the deaths of patients in England. London: CQC https://www.cqc.org.uk/sites/default/files/20161213-learning-candour-accountability-full-report.pdf

[10] Care Quality Commission (2019). Learning from deaths: A review of the first year of NHS trusts implementing the national guidance. London: CQC. https://www.cqc.org.uk/publications/themed-work/learning-deaths

[11] Joint Committee on Human Rights (2019). The detention of young people with learning disabilities and/or autism. HC 121. London: House of Commons and House of Lords. https://publications.parliament.uk/pa/jt201919/jtselect/jtrights/121/121.pdf

[12] Joint Committee on Human Rights (2020). Human Rights and the Government’s response to COVID-19: The detention of young people who are autistic and/or have learning disabilities. HC 395. London: House of Commons. https://publications.parliament.uk/pa/jt5801/jtselect/jtrights/395/395.pdf

[13] HM Government (2020). The Government Response to the Joint Committee on Human Rights reports on the Detention of Young People with Learning Disabilities and/or Autism and the implications of the Government’s COVID-19 response. London: HM Government https://www.gov.uk/government/publications/jchr-reports-on-the-detention-of-young-people-with-learning-disabilities-or-autism-government-response

[14] Department of Health and Social Care and NHS England (2018). Government response to the Learning Disabilities Mortality Review (LeDeR) Programme 2^nd annual report. London: DHSC and NHSE https://www.gov.uk/government/publications/government-response-to-the-learning-disabilities-mortality-review-leder-programme-2nd-annual-report  

[15] Department of Health and Social Care (2020). The Government response to the third annual Learning Disabilities Mortality Review (LeDeR) Programme report. London: DHSC https://assets.publishing.service.gov.uk/government/uploads/system/uploads/attachment_data/file/865288/government-response-to-leder-third-annual-report.pdf

[16] Helen Whateley (2020). The fourth annual report of the Learning Disabilities Mortality Review Programme: Statement made on 16 July 2020. https://questions-statements.parliament.uk/written-statements/detail/2020-07-16/hcws378

[17] NHS England (2020). LeDeR – Action from learning report. NHS England: 16 July 2020. https://www.england.nhs.uk/publication/leder-action-from-learning-report/

[18] NHS Digital (2021). Health and Care of People with Learning Disabilities Experimental Statistics 2019 to 2020. NHS Digital 28 Jan 2021. https://digital.nhs.uk/data-and-information/publications/statistical/health-and-care-of-people-with-learning-disabilities/experimental-statistics-2019-to-2020

[19] NHS Digital (2019). Health and Care of People with Learning Disabilities Standardised Mortality Ratio Indicator. NHS Digital: 26 Sep 2019. https://digital.nhs.uk/data-and-information/publications/statistical/health-and-care-of-people-with-learning-disabilities/standardised-mortality-ratio-indicator

[20] University of Bristol (2021). The Learning Disabilities Mortality Review (LeDeR) Programme Annual Report 2020. Bristol: Norah Fry Centre for Disability Studies. http://www.bristol.ac.uk/media-library/sites/sps/leder/LeDeR%20programme%20annual%20report%2013.05.2021%20FINAL.pdf

[21] Heslop P, Blair P, Fleming P, Hoghton M, Marriott A & Russ L (2013). Confidential Inquiry into premature deaths of people with learning disabilities (CIPOLD) final report. Bristol: University of Bristol. http://www.bristol.ac.uk/cipold/reports/  

[22] Mencap (2012). Death by indifference: 74 deaths and counting. A progress report 5 years on. London: Mencap. https://www.mencap.org.uk/sites/default/files/2016-08/Death%20by%20Indifference%20-%2074%20deaths%20and%20counting.pdf

[23] University of Bristol (2021). The Learning Disabilities Mortality Review (LeDeR) Programme Annual Report 2020. Bristol: Norah Fry Centre for Disability Studies. http://www.bristol.ac.uk/media-library/sites/sps/leder/LeDeR%20programme%20annual%20report%2013.05.2021%20FINAL.pdf

[24] University of Bristol (2021). The Learning Disabilities Mortality Review (LeDeR) Programme Annual Report 2020. Bristol: Norah Fry Centre for Disability Studies. http://www.bristol.ac.uk/media-library/sites/sps/leder/LeDeR%20programme%20annual%20report%2013.05.2021%20FINAL.pdf

[25] #107days of action to being about #JusticeforLB and all young dudes. https://107daysofaction.wordpress.com/

[26] Ryan S (2018). Justice for Laughing Boy. London: Jessica Kingsley.

[27] George Julian. Connor Sparrowhawk. https://www.georgejulian.co.uk/inquests/connor-sparrowhawk/ [A collection of blogposts, family statements, links and archive of live tweeting of Connor Sparrowhawk’s inquest]

[28] JusticeforLB. Conclusion of MTPS tribunal into Dr Valerie Murphy’s (un)fitness to practice. http://justiceforlb.org/conclusion-of-mpts-tribunal-into-dr-valerie-murphys-unfitness-to-practice/

[29] George Julian. Inquests. https://www.georgejulian.co.uk/inquests/

[30] Inquest. Now or never! Legal aid for inquests. https://www.inquest.org.uk/legal-aid-for-inquests

[31] Mazars (2015). Independent review of deaths of people with a learning disability or mental health problem in contact with Southern Health NHS Foundation Trust April 2011 to March 2015. London: Mazars. https://www.england.nhs.uk/south/wp-content/uploads/sites/6/2015/12/mazars-rep.pdf

[32] Care Quality Commission (2016). Learning, candour and accountability: A review of the way NHS trusts review and investigate the deaths of patients in England. London: CQC https://www.cqc.org.uk/sites/default/files/20161213-learning-candour-accountability-full-report.pdf

[33] George Julian. CQC Deaths Review. https://www.georgejulian.co.uk/other-work/cqc-deaths-review/

[34] Care Quality Commission (2019). Learning from deaths: A review of the first year of NHS trusts implementing the national guidance. London: CQC. https://www.cqc.org.uk/publications/themed-work/learning-deaths

[35] University of Bristol. The Learning Disabilities Mortality Review (LeDeR) programme at the University of Bristol 2015-2021. http://www.bristol.ac.uk/sps/leder/uob-2015-21/ 

[36] Runswick-Cole K (2015). Week 6: Committee, Inquiry, Report, Repeat… #107days. https://107daysofaction.wordpress.com/2015/04/30/week-6-committee-inquiry-report-repeat-107days/

[37] Tredgold AF (1914). Mental Deficiency (Amentia) (2^nd edn). London: Bailliere, Tindall and Cox