Friday, 29 July 2022

Statutory homelessness statistics and people with learning disabilities

This short, hasty and ill-informed blogpost briefly summarises the latest statistics on statutory homelessness in England, as they relate to households with a person with learning disabilities living within them. [Before you ask, yes, looking through statistical releases to see if they contain anything about people with learning disabilities is a hobby of mine].

To quote this typically lucid report from the House of Commons Library on statutory homelessness in England, "Local authorities have a statutory duty to secure accommodation for unintentionally homeless households who fall into a 'priority need' category. There is no duty to secure accommodation for all homeless people". 

There are a range of statistics presented in the live tables, one of which presents information on the number of households owed a homelessness duty broken down by whether anyone in the household has a list of particular support needs, which includes 'Learning disabilities'. Because of changes to the law in 2018, statistics are available for each quarter (three months) from April 2018 through to December 2021 (I haven't included more recent provisional information).

The graph below shows the number of households with a person with learning disabilities who were owed a homelessness duty in each quarter year. Apart from a dip in Quarter 2 in 2020 (when the government introduced temporary measures to alleviate homelessness in response to the COVID-19 pandemic), the number of households has rapidly increased. In Quarter 2 of 2018 (April-June) there were 2,670 households with a person with learning disabilities owed a homelessness duty - by the last quarter of 2021 (October-December) this had increased to 3,710 households, an increase of 39%.




How big a proportion of households owed a homelessness duty are households with a person with learning disabilities? The graph below shows trends in two percentages over time. 

The first (the blue line) is the percentage of all households owed a homelessness duty by a local authority that are households with a person with learning disabilities. This shows that households with a person with learning disabilities represented 4.3% of all households owed a homelessness duty in Quarter 2 of 2018, increasing to 5.6% of all households in Quarter 4 2021.

The second, orange, line is the percentage of households with an identified support need owed a homelessness duty that are households with a person with learning disabilities. [Not all households owed a homelessness duty officially have a support need]. This shows that households with a person with learning disabilities represented 9.3% of households with a person with support needs owed a homelessness duty in Quarter 2 2018, increasing to 10.5% of these households in December 2021.



This is not an area I know about at all well, so there may be horrible errors of interpretation here. And these statistics will clearly miss out a lot of people with learning disabilities who are homeless, for a variety of reasons. But to me these look like highly worrying statistics, for which there is absolutely no policy attention or action.


Thursday, 21 July 2022

The LeDeR report for 2021 - what does it tell us?

This blogpost picks out some findings from the latest LeDeR report, which reviews the deaths of people with learning disabilities in England notified to the LeDeR programme. There are multiple formats for this report, including easy read and infographics as well as the full report. Reporting deaths to the LeDeR programme is national in scope but voluntary, with local reviewers often conducting reviews as part of or in addition to their jobs. The organisations managing and reporting on this programme changed in the middle of 2021, and the programme has continued through the ongoing COVID-19 pandemic, with its operation disrupted by the ongoing pressure on health services through the ongoing COVID-19 pandemic.



(source: Wellcome Trust)

The latest LeDeR report, published in July 2022, focuses on the calendar year 2021, with comparisons where possible to 2018, 2019 and 2020, and some comparisons to equivalent information about the general population. When looking at all this information, it's vital to bear in mind the big peaks of COVID-19 (so far), largely before the widespread availability of the COVID-19 vaccination, which hit in the spring of 2020 and the end of 2020/beginning of 2021 and resulted in disproportionately high numbers of deaths among people with learning disabilities.

There are three levels of information collected by the LeDeR programme. First, there are web-based open systems for notifying deaths of people with learning disabilities to the LeDeR programme (the new organisations taking this on have started collecting information about the deaths of autistic people as well, although findings from this won't be reported in the next annual report), with some basic information collected as part of this notification process. In 2021, 3,304 deaths of people with learning disabilities were reported to the LeDeR programme, compared to 3,652 deaths in 2020, 2,825 deaths in 2019, and 2,613 deaths in 2018. There is a clear COVID-19 effect here, and the report shows that COVID-19 has caused the death of additional people on top of people dying from other causes.

The second level of information is collected from initial reviews, collected by local reviewers. There have been some changes to the information collected in this initial review from the old to the new LeDeR regime, so some information for 2021 is unavailable or cannot really be compared to 2020. These reviews are supposed to happen for every death, and in the past there have been serious backlogs in these reviews being done. For the 3,304 people whose deaths had been notified to the LeDeR programme in 2021, 2,662 initial reviews (80.6%) had been completed by the time of writing the report in 2022.

The third level of information is collected from additional focussed reviews where there are thought to be potential concerns based on the initial review. Again, there have been some changes to how these are conducted, and for 2021 in total 139 focused reviews had been completed (5.2% of those who whom an initial review had been completed). 

In addition, information collected for the LeDeR programme can be linked to information from death certificates on cause of death. Death certificates in themselves can be records of discriminatory health service practices (for example, the recording of 'learning disability' as a cause of death).

Taken together, this means that quite a lot of information can be missing for quite a lot of people, which is important to bear in mind when going through the report's findings.


Overall, in 2021, the median age of death (if you order people's deaths from youngest to oldest, the median is the age at which half of people have died) was 61 for boys/men and 60 for girls/women (the LeDeR programme covers people's deaths from the ages of 4 upwards). For comparison, immediately pre-COVID-19 LeDeR reported the median ages of death for people with learning disabilities as 60 for both boys/men and girls/women. These are similar ages of death for people with learning disabilities to those reported using a range of methods for a decade, showing no clear trend of absolute improvements in life expectancy for people with learning disabilities over this timescale. There is also no sign of the gap in life expectancy between people with learning disabilities and other people closing, even as life expectancy for the general population in England is stalling and if anything starting to decrease. According to the LeDeR programme, in 2019, 2020 and 2021 over 60% of people with learning disabilities in each year died before the age of 65. Comparative figures for the general population in 2020 (so including the COVID-19 pandemic) reported 15% of people died before the age of 65.


During the COVID-19 pandemic, there has been a lot of focus on health conditions that might be considered risk factors if a person is infected with COVID-19, with the creation of the 'Clinically Vulnerable' and 'Clinically Extremely Vulnerable' categories which are used to prioritise COVID-19 vaccinations but now confer no additional support or consideration from education, health or social care services. There were real struggles to prioritise all people with learning disabilities (or at least those registered as such with their GP) for the COVID-19 vaccination, as many people with learning disabilities had potentially risky health conditions not recognised in the list of conditions drawn up algorithmically for the general population. The lack of clarity of guidance for (fourth) booster COVID-19 vaccines continues this injustice. 

Findings from the LeDeR programme reinforce how risk algorithms drawn up on the general population miss out health conditions and issues that are common for people with learning disabilities. Amongst people with learning disabilities who had died from any cause, the most common long-term health conditions were: epilepsy (33% of people who had died); cardio-vascular (heart) diseases (32%); mental health problems (32%); sensory impairments (25%); and dysphagia (23%). Many of these health conditions (particularly issues like dysphagia) are unlikely to be on the radar of general health services, especially as they often go unrecognised even in people with learning disabilities. For example, GPs recorded dysphagia amongst 4.3% of people with learning disabilities in 2016/17, rising to 7.8% of people in 2020/21, reflecting (welcome) increasing recognition, but from a very low base.


The LeDeR report continues to report entrenched discrimination in the way that health services manage the deaths of people with learning disabilities. Some of these practices have got even worse during the COVID-19 pandemic, but they also pre-date the pandemic, so cannot be brushed aside as the product of a health service under intense pandemic pressure. In 2021, 64% of people with learning disabilities who died had a Do Not Attempt Resuscitation (DNAR) order (for a further 12% of people it was not recorded whether a person had a DNAR or not). This is very similar to percentages recorded in 2018 (63%), 2019 (63%) and 2020 (64%). A DNAR may be entirely appropriate for a person, depending on whether due legal process has been gone through. LeDeR reviewers in 2021 (who, as we shall see, are generally quite optimistic in their evaluation of the care people had experienced) reported that 40% of the DNAR documentation and processes they reviewed were not appropriate.

What has definitely got worse is the percentage of people's deaths that have been reported to a coroner. For children with learning disabilities aged 4-17, the LeDeR programme reports that the percentage of children's deaths reported to the coroner has plummeted over time, from 42.5% in 2018, through 50.9% in 2019 and 38.0% in 2020, to 14.7% in 2021. For adults with learning disabilities the percentage of people's deaths reported to the coroner started low and continues to fall: from 24.9% in 2018, through 18.6% in 2019 and 15.3% in 2020, to just 8.7% in 2021. For comparison, in 2020 34% of all registered deaths in the UK were reported to a coroner. Despite the severe limitations of inquests when trying to gain truth and accountability for people with learning disabilities who have died (see the excellent work of Inquest, George Julian, and the Stop People Dying Too Young group), not even getting as far a coroner is an obvious brick wall to accountability before the process even starts.


In 2021, what did people with learning disabilities die of, according to death certificates? The five most common causes of death (using quite broad standard categories, so apologies for some of the offensive jargon here) reported by the LeDeR programme were: 

1) COVID-19 (532 people were reported to have died of COVID-19, or 21.3% of all deaths in 2021)

2) Diseases of the circulatory system (356 people; 14.3%)

3) Diseases of the respiratory system (300 people; 12.0%)

4) Cancers (286 people; 11.4%)

5) Diseases of the nervous system (276 people; 11.0%)

With the exception of COVID-19 in 2020 and 2021, these are fairly similar to the causes of death reported in previous LeDeR reports for 2018, 2019 and 2020.

More detailed analyses of specific causes of death in the LeDeR report further show the ways in which standard health programmes stack the deck against people with learning disabilities. One example is bowel cancer, which from 2018 to 2021 represented between 10.9% and 14.7% of all cancer deaths of people with learning disabilities, with people with learning disabilities dying from bowel cancer at an average age of 61.7 years. Yet bowel cancer screening only starts at the age of 60 (up to 74), so it is guaranteed to not pick up early signs of bowel cancer amongst many people with learning disabilities. The promising news is that the bowel cancer screening programme over the next five years is dropping its minimum age to 50 from 60, which will include many more people with learning disabilities. The bad news is that other data from GPs shows that only 43.3% of people with learning disabilities eligible for a bowel cancer screening test actually had one in 2020/21, compared to 62.7% of people without learning disabilities, so extending theoretical eligibility will have limited impact in the absence of practical, proactive measures to increase screening coverage.

Overall, it's not surprising (although I hope it is still shocking) that LeDeR reports 49% of people with learning disabilities died an avoidable death (based on a standard list of causes of death that have been judged to be preventable and treatable) in 2021. This compares to 22% of the general population dying an avoidable death, using the same definition, in 2020. This yawning chasm has been apparent through all the LeDeR reports and in those preceding them. 


In this LeDeR report (as in previous ones) I've found it very hard to reconcile the scale of grimness in the findings I've reported above with the more rosy take of LeDeR reviewers, who are asked to rate various aspects of the person's healthcare and support. As mentioned there have been some changes in how this information is collected from reviewers, so it's hard to present a consistent picture over this transition year. The information is also only shown in the report as graphs, so any percentages reported are my guesses based on squinting at the columns.Only looking at reviewer ratings based on the initial Bristol method (these are collected in initial reviews, and have much higher numbers of reviews than those using the new method), in both 2020 and 2021, care falling short of expected good practice (ratings 1 to 3) was reported in less than 20% of reviews, 'satisfactory care' (rating 4) was reported in around 25% of reviews, and 'good' or 'excellent' care was reported in almost 60% of reviews. Even for people whose death was avoidable according to the definition above, for 47% of people reviewers rated their care as good or excellent. In both 2020 and 2021 reviewers rated over 90% of people's care packages as meeting the person's needs. Reviewers also expressed concerns about people's deaths relatively rarely; 9.9% of people's deaths in 2020 and 7.3% of people's deaths in 2021.

 

As in previous years, this LeDeR report makes for very grim reading. Discrimination in health service provision was patently obvious to those who cared to look even before the COVID-19 pandemic, and from this and other sources of information it's clear that the way that people with learning disabilities have been un/mis/treated through the pandemic has only exacerbated this discrimination. The multiple initiatives (including the LeDeR programme itself, which has a substantial local service improvement dimension) happening in various pockets of health services is clearly not moving the dial for the population of people with learning disabilities in a way that is noticeable at a national scale. 

But then through a lens of socio-economic inequality (with a side order of disablist discrimination) this is hardly surprising. The LeDeR report largely doesn't (and possibly can't) address this in any detail, although there are hints that people with learning disabilities from minoritised ethnic communities are more likely to die, and die younger, compared to other people with learning disabilities. People with learning disabilities who lived in more deprived areas are also much more likely to die than people with learning disabilities who lived in wealthier areas, although we don't know this information about where people with learning disabilities are generally living. Where are the concerted initiatives that, over time, would make a massive difference to the population health of people with learning disabilities, starting from birth - stopping poverty, better education, decent quality housing throughout people's lives (with or without support from staff), employment for those who want it, support for families so that everyone can live their best life, being able to go out without fear of abuse or crime, and things set up so that people can imagine their future and go and live it? In a total vacuum of national policy or attention across government, health services have tried to fill the void, but when you've only got a health service hammer everything looks like a nail (and don't give me the ICS spiel - everything I've heard looks like they're replicating the cultures and practices of any number of acronymic health planning quangoids that came before them).

Bleak times.


Thursday, 23 June 2022

Children with learning disabilities in schools in England: an update

 

Last week, the Department for Education released its latest annual statistics concerning children and young people identified within the English education system as children/young people with learning disabilities, recorded in an annual census of schools that takes place in January each year.


 

 In the Special Educational Needs (SEN) statistics there are a number of mutually exclusive categories of SEN, three of which concern children with learning disabilities – Moderate Learning Difficulties (MLD), Severe Learning Difficulties (SLD) and Profound & Multiple Learning Difficulties (PMLD). There are a number of other SEN categories recorded within these statistics (Specific Learning Difficulties; Speech, language and communication needs; Social, emotional and mental health; Autistic spectrum disorder; Visual impairment; Hearing impairment; Multisensory impairment; Physical disability).

Within the annual census, a child can be classified as having a ‘primary need’ in one of these categories, and optionally classified as having an additional, ‘secondary need’ in another category. Most importantly in terms of how children are supported, children may have a special educational need that has been judged to require specific support in the form of an SEN statement (historically) or now (magically) an Education, Health and Care (EHC) plan. Beyond that, DfE statistics now only report an additional much larger number of children at a level of ‘SEN support’, which has no requirements to specifically support a child.

This blogpost simply updates a blog I did a couple of years ago on Department for Education (DfE) statistics, and goes through what some of these statistics say about the education of children and young people with learning disabilities, as identified within the education system. For a brilliant analysis of what these statistics say and what they mean for children with SEND generally, I highly recommend Matt Keer's analysis for Special Needs Jungle, and I would urge you to read it.


The first question is simply – how many children and young people with learning disabilities are recorded in DfE statistics?

The first graph below shows the number of children with a statement/EHC plan with a ‘primary SEN need’ of MLD, SLD and PMLD, from 2010 to 2022 (apologies for the acronyms – if using these is a deal breaker in terms of offensiveness do tell me and I won’t use them in future blogposts).

The graph shows that in 2022, over 73,000 children in England had a statement/EHC plan and were identified as children with learning disabilities. For children with MLD this was 32,057 children in 2022, with a large decrease of 31% from 2010 to 2018 but an increase of 13% from 2018 to 2022.

In 2022, there were 31,504 children with a statement/EHC plan and identified with a primary need of SLD, an increase in numbers of 25% from 2010 to 2022. Finally, in 2022 there were 10,108 children with a statement/EHC plan and identified with a primary need of PMLD, an increase of 16% from 2010 to 2018 but with fluctuating numbers since.
 




The second graph below shows the number of children with a ‘primary SEN need’ of MLD, SLD and PMLD at the level of SEN Support, from 2015 to 2022 (the reporting of statistics changed in 2015).

The graph shows that in 2022, over 200,000 children in England were identified as children with learning disabilities at the level of SEN Support. For children with MLD this was 197,409 children in 2022, with a large increase from 2015 to 2016 and a decrease from 2016 onwards.

In 2022, there were 2,434 children with a primary need of SLD at the level of SEN Support, with numbers fairly steady until 2020 but decreasing after then. Finally, in 2022 there were 769 children at the level of SEN Support with a primary need of PMLD, again with a recent decrease.




How many children with learning disabilities are being educated in mainstream schools or special schools? The graph below shows the number of children with a statement/EHC plan and primary needs of MLD, SLD and PMLD being educated in mainstream schools and special schools in England, from 2010 through to 2022. These figures don’t include potentially substantial but often not really known numbers of children not in school at all (including those being educated at home), or in places like residential special schools or specialist inpatient units.

The graph has quite a lot of stuff in it, so let’s take it bit by bit. The lilac lines are for children with MLD in mainstream schools (diamonds) and special schools (circles). As we know from earlier on the number of children with statements/EHC plans associated with MLD decreased from 2010 to 2018 but increased from 2018 to 2022. This graph shows that the number of children with a statement/EHC plan and a primary of need of MLD in special schools declined gradually from 2010 to 2022; the number of children in mainstream schools declined rapidly from 2010 to 2017 but has been rapidly increasing after then.

For children with statements/EHC plans associated with SLD (the blue lines), the number of children with SLD in mainstream schools slightly decreased, with fluctuations, from 2010 to 2022, while the number of children with SLD in special schools has rapidly increased.

For children with a statement/EHC plan associated with PMLD (the purple lines), the numbers of children with PMLD in both mainstream and special schools has very gradually increased, with some fluctuations, from 2010 to 2022.




Another way of looking at this is to look at the percentage of children in mainstream vs special schools. The graph below shows this from 2010 to 2022 for children with a statement/EHC plan. As the graph shows, the percentage of children with a primary need of MLD and a statement/EHC plan in mainstream school dipped from just over 50% in 2010 to 43% in 2017, with the percentage returning to above 50% in 2022. For children with a statement/EHC plan and a primary need of SLD, the percentage of children in mainstream schools decreased from 17% in 2010 to 12% in 2022. For children with a statement/EHC plan and a primary need of PMLD, the percentage of children in mainstream school remained fairly consistent around 14%-16%.





For children identified at the level of SEN Support (I haven’t included a graph on this), in 2022 almost all the children with a primary need of MLD (99.96%) and the vast majority of children with a primary need of SLD (90.4%) or PMLD (80.3%) were in mainstream schools.


Although it’s not an ideal marker of the financial circumstances of families, eligibility for free school meals is collected within DfE statistics. The graph below shows the proportion of children with statements/EHCPs associated with MLD, SLD and PMLD eligible for free school meals compared to the proportion of all children eligible for free school meals. For all children on the school roll, 22.5% of children in 2022 were eligible for free school meals. For children with a PMLD label the proportion of children eligible for free school meals is higher (34.4% for children with a statement/EHC plan), then higher again for children with an SLD label (42.3% for children with a statement/EHC plan), and highest for children with an MLD label (44.8% for children with a statement/EHC plan). It is worth mentioning that the proportion of children in all groups eligible for free school meals has increased in recent years.




I don’t really want to put a heavily opinionated commentary on this blogpost, so here’s a summary instead.
  •  While the number of children identified as having special educational needs associated with severe learning difficulties or profound and multiple learning difficulties and needing statements or EHC plans are gradually increasing, the number of children identified as having a special educational need associated with moderate learning difficulties has been plummeting but for the last four years has started to increase again.
  • There are slightly different trends for different groups of children with learning disabilities in terms of the proportion of children in mainstream vs special schools, but some earlier trends towards special education seem to be starting to reverse for children with MLD in the last few years. Less than 20% of children with an EHCP/statement and a label of SLD or PMLD are being educated in mainstream schools.
  • Children with learning disabilities are much more likely to be eligible for free school meals than children generally.
  • It's unclear to trace much of an impact of the COVID-19 pandemic in these statistics, although other educational statistics are much more likely to pick these up.

Thursday, 2 June 2022

Winterbourne View 11 Years On. Report card 4: Leaving inpatient units

This blogpost is the final one of four looking at the Transforming Care programme through the prism of the national statistics regularly produced by NHS Digital, updating a series of blogposts I last updated in 2019..

The first blogpost looked at statistics on the number of people being admitted to inpatient services, and where they were being admitted from.

The second blogpost looked at how far people were from home and how long they were staying in inpatient services.

The third blogpost looked at planning and reviews for people within inpatient services.

This final blogpost will focus on the number of people leaving inpatient services (charmingly called ‘discharge’) and what is happening leading up to people leaving. Getting people out of inpatient units has arguably been the major focus of activities under the Transforming Care/Building The Right Support banner. Again, at this point the impact of these programmes should be visible in the number of people getting ready to leave, how well people’s plans to do so are developing, and how many people are actually leaving to places outside inpatient services.

The first and most obvious question is whether people in inpatient services have a planned date to leave (I will pick up on the complications of what ‘leaving’ actually means later in this post). The graph below shows the proportion of people in inpatient services with a planned date for transfer, from March 2015 to March 2022 (according to Assuring Transformation data). There have been some fluctuations over time but there is little sense of sustained improvement. In March 2022 there was no planned transfer date for 55% of people in inpatient units, compared to 50% of people in March 2015. In March 2022, 18% had a planned transfer date within 6 months, although for 9% of people their planned transfer was overdue.



In addition to planned transfer dates, do we know anything about the plans themselves?

Well, if people are leaving the inpatient unit to go home in some sense then my expectation would be that the person’s local council should be aware of the plan to leave. The graph below shows information from Assuring Transformation based just on those people with a plan to leave – for this group of people, are councils aware of the plan? Over time, the proportion of people with a plan that their council is aware of dropped substantially from 2015 to 2019, although this has improved again up to March 2022. Despite this recent improvement, by March 2022 the proportion of planned transfers where the council was aware (64%) was still lower than it was in March 2015 (69%). Of concern is that in March 2022 for 21% of people with a planned transfer it wasn’t known whether the council was aware of the plan or not, an improvement from 2019 but still worse than in March 2015 (7%). At the very least this suggests that the close working between health and social care envisaged as central to Transforming Care/Building The Right Support is less than universal.
  


There are other signs too of haste in planning for people to leave. The Assuring Transformation statistics report whether a range of people (the person themselves, a family member/carer, an advocate, the provider clinical team, the local community support team, and the commissioners) have agreed the plan to leave. For those people with a plan to leave, the graph below reports the proportion of their plans that have been agreed by different people, from March 2016 to March 2022. Over time, the proportion of plans agreed by anyone and everyone potentially involved has plummeted. Only 29% of plans had been agreed by the person themselves in March 2022, compared to over two thirds of people (69%) in March 2016. Similar drops are reported for the proportion of family/carers (from 60% to 25%) and advocates (from 64% to 28%) agreeing the plans.

By March 2022, transfer plans had been agreed by a minority of provider clinical teams where the person was supposed to be moving to (from 83% in March 2016 to 33% in March 2022), a minority of local community support teams in the area the person was supposed to be moving to (from 69% to 30%) and a minority of those commissioners who are reporting the information the graph is based on! (from 83% to 33%). To what extent are these actually feasible and sustainable plans that will result in a better life at home for people in inpatient services, and what are their chances of breaking down?




The final graph in this blogpost series is one of the most important – how many people have actually been transferred from inpatient services, and where have they gone? The graph below adds up monthly ‘discharges’ from inpatient services in the Assuring Transformation dataset in six yearly blocks, from October 2015 through to September 2021. It’s also one of the most complicated graphs in this series, so I’ll go through it in a bit of detail.

The first thing to say is that overall the number of people ‘discharged’ from inpatient services increased from 2015/16 (2045 people) to 2017/18 (2,265 people), but has since decreased to 1,930 people in 2020/21 (potentially partly due to the impact of the COVID-19 pandemic).

Of the people who have been ‘discharged’, in 2020/21 over a quarter of people (550 people; 28%) moved to independent living or supported housing. Another over a quarter of people (545 people; 28%) moved to their family home with support, making well over half of everyone ‘discharged’ from inpatient services (56%). This is a big increase from the 41% of people 'discharged' to these living circumstances in 2015/16.

Where did everyone else go? For almost two fifths of people in 2020/21 (360 people; 19%) their ‘discharge’ was actually a transfer to another inpatient unit, confirming the picture of ‘churn’ of people passed around inpatient services found elsewhere in this series. More than one in ten people (235 people; 12%) moved into residential care. Given that some inpatient services have re-registered themselves as residential care homes with the CQC and a panoply of 'step-down' and other services are registered as care homes, it is unclear to what extent people are leaving an inpatient service to move somewhere more local and homely, moving somewhere very similar to where they were, or not actually moving at all.

In 20/21, there were also another 220 people (11%) who moved to an ‘other’ location – again it is unclear what these ‘other’ places are, but are they wildly different from where people were moving from?.

There are also signs of some changes over time in where people are being ‘discharged’ to. Fewer 'discharges' are to other hospital inpatient units and residential care, and more 'discharges' are to people's families with support.





So in this final post in the series, there are definite signs that Transforming Care/Building The Right Support has not continued to support the 'discharge' of more people out of inpatient services, although over half of those people who are leaving are now moving to independent or supported living or back to the family home. There are real worries about the feasibility and sustainability of some of these plans, and the extent to which many people ‘leaving’ inpatient services are actually leaving for something radically different or being churned around a system that doesn’t call itself an inpatient service system but looks mighty similar to the people living within it. The fact that for almost two fifths of people being 'discharged', they are actually being moved to another inpatient unit, is to my mind something of an indictment of the inpatient service 'system' and Transforming Care's lack of fundamental impact upon it.





I started the first of the blogposts in this series with a tweet from Rightful Lives, and I want to close on one, which takes us back to what the government promised a decade ago in response to the BBC Winterbourne View programme. The kind of statistics I've gone through here are only a very small part of the picture, but they collectively show how far we are from the promises that were made. In its most recent State of Care report, the Care Quality Commission reported that over a quarter (28%) of inpatient services for people with learning disabilities or autistic people were rated inadequate or requires improvement, and as far as I can tell this percentage is increasing over time. And this at an average charge of £283,739 per place according to NHS Benchmarking this year - well over half a billion pounds a year of public money, presumably in excess of six billion pounds since the BBC Winterbourne View programme.

And none of these past four blogposts gets to the heart of what this failure has done to countless people and those close to them since the BBC Winterbourne View programme was aired (and in the years and decades before then). The continuing litany of neglect and abuse continues unabated - people like Saba Salman, Ian Birrell, Katharine QuarmbyJayne McCubbin and Ruth Clegg, Rachel Lucas, Lucy Adams and George Julian continue to bring the brutal reality to the attention of the public, to the general indifference of those in a position to do something about it.

For all the tinkering with the machinery that has happened in the last 11 years, it's campaigning organisations like Rightful Lives, the We Are Human Too campaign led by people with learning disabilities in North East England, and the self-advocacy organisation My Life My Choice who recently withdrew from conducting Care and Treatment Reviews, who are leading the way in moral clarity and integrity. 

Surely the government must see that, after 11 years, something radically different is required?





Winterbourne View 11 Years On. Report card 3: Planning within inpatient units

This blogpost is the third of four looking at the Transforming Care/Building The Right Support programme through the prism of the national statistics regularly produced by NHS Digital, and updating a series of blogposts I last updated in Spring 2019 on the same issues.

The first blogpost looked at statistics on the number of people being admitted to inpatient services,  where they were being admitted from, and the legal status and ward security of people in inpatient units.

The second blogpost looked at how far people were from home and how long they were staying in inpatient services.

This blogpost will focus on what the statistics are telling us about planning within inpatient services, using statistics from Assuring Transformation. If Transforming Care/Building The Right Support has made progress, its effects should be felt through the inpatient care plans people have, whether people’s needs are being regularly reviewed, and whether people are having regular, effective Care and Treatment Reviews (CTRs).

The first graph below shows the details of care plans for people according to inpatient services, from March 2015 through to September 2021. Information in this form is not now being published.

By September 2021, 15% of people were labelled ‘not dischargeable', down from 21% in March 2015. The proportion of people with an active treatment plan but no plan to leave has increased over time (from 39% of people in March 2015 to 45% of people in September 2021). The proportion of people actively working towards a plan to leave with a plan in place has dropped slightly over time, from over a third (35%) in March 2015 to 32% in September 2021. Delayed transfers of care have gradually crept up over time, and are now standing at 7% of people in September 2021. From these figures, it is impossible to tell whether these changes are due to changes in what inpatient services are doing, or changes in who is in inpatient services. For example, if Transforming Care is being effective in supporting ‘dischargeable’ people to leave inpatient services, then the proportion of ‘undischargeable’ people left in inpatient services will go up.

But it does mean that, after 10 years of concerted government policy, there are 560 people (almost 40% of people) in September 2021 in inpatient services when, according to their care plans, they don’t need to be there.




For everyone in inpatient services, reviews should happen regularly. The graph below shows how long ago people in inpatient services had had their last review, from March 2015 to March 2022. The graph generally shows that things seem to improve at times when there is more government/NHS England attention or pressure, but without that pressure reviews begin to drift again. By March 2022, a third of people (33%) had had a review in the past 12 weeks, and almost a quarter (23%) between 12 weeks and 6 months ago. However, a further quarter (25%) last had a review between 6 months and a year ago, and another 18% had last had a review over a year ago.



A particular form of review introduced by Transforming Care as a way to bring in independent voices to challenge inpatient services is the Care and Treatment Review (CTR). The graph below reports the last time people in inpatient services had had a CTR, from October 2016 to March 2022. The graph shows that the vast majority of people in inpatient services have had a CTR at some point (92% of people in March 2022), and that this coverage has increased from 70% of people in October 2016. Perhaps one concern is that 11% of people last had a CTR more than a year ago, a proportion that has stayed fairly consistent over the last three years.




The graph below shows when people are next scheduled to have a CTR. Again, there are improvements from October 2016 to March 2022, where the proportion of people with no scheduled future CTR dropped from over half (55%) to only 6% of people. For a further 9% of people in March 2022 the date for their scheduled CTR had passed without a CTR happening.



Overall there are signs that more people in inpatient services are having both regular reviews and Care and Treatment Reviews, although reviews often drift back to lower levels outside times of particular pressure being applied. There are still large numbers of people in inpatient services who have not had any sort of review for a long time, however, and there are still almost 40% of people in inpatient units whose care plan says they don’t need to be there. Care and Treatment Reviews are being done, but what difference are they making?

Winterbourne View 11 Years On. Report card 2: How far are people from home, for how long?

This blogpost is the second of four, updating a series of blogposts on various aspects of Transforming Care/Building The Right Support I last updated in 2019. The first blogpost in this updated series looked at who was being admitted to inpatient units, where they were being admitted from, and the legal status and ward security of people in inpatient services. This second blogpost will focus on two aspects of what happens to people in inpatient services, how far people are from home and how long they are in inpatient services. They use information from the Assuring Transformation dataset, provided by NHS Digital.

One of the main policies consistently trumpeted is having crisis and inpatient services close to home. The graph below reports information on the ‘distance from home’ of people in inpatient units, as reported in the Assuring Transformation dataset. The graph firstly shows that the biggest change in how far people are from home, from November 2016 to April 2022, is the huge increase in the proportion of people whose distance from home is recorded as 'unknown' (from 16% of people in Nov 2016 to 31% of people in Nov 2021). This makes interpreting other apparent changes over time difficult, as we don't know how far these extra 'unknown' people are from home (the gaps in the graph are because data on distance from home weren't always published every month). By April 2022, a quarter (26%) of people were reported to be in inpatient units more than 50km from their home. 

How, six years on from the introduction of this dataset, information is not provided for almost a third of people on a supposed 'flagship' indicator, is beyond me.




Another important policy aim of Transforming Care/Building The Right Support is to reduce the length of time that people spend in inpatient units. The graph below shows how long people have been in their current inpatient unit according to Assuring Transformation statistics, from March 2015 through to March 2022. There are very gradual and fluctuating trends over time towards a greater proportion of people being in their current inpatient unit for shorter lengths of time, although in March 2022 13% of people had been in their current inpatient unit for 5 years or longer.



As I mentioned in the previous post, these is a lot of evidence that substantial numbers of people are moved around different inpatient services without ever leaving the inpatient service system. Assuring Transformation also reports information on how long people have been continuously within inpatient services (not just how long they have been in their current unit). The graph below shows this information from March 2015 to March 2022. The extent of people being transferred around can be clearly seen; in March 2022 over a third of people (35%) had been continuously in inpatient services for 5 years or longer, a proportion that has hardly changed from March 2015.



Finally, Assuring Transformation also reports the average length of time that people have been in their current inpatient unit, and continuously in inpatient services. The graph below shows that people were on average in their current inpatient unit for just under 3 years, with this length of stay gradually falling from March 2015 to September 2019 but increasing from then onwards. The total length of time people have been continuously in inpatient services has increased slightly from 2015 and is now standing at an average of more than 5 years 6 months.



What does this mean? First, it’s obvious that inpatient services have not become radically more local as Transforming Care/Building The Right Support has ‘progressed’, with Assuring Transformation reporting that a quarter of people are more than 50km from home and this information simply not being reported for almost a third of people. The information on how long people are staying in inpatient units reflects the continuing ‘churn’ of people between inpatient units without seeing the outside world, with people still on average spending 5 and a half years continuously in some form of inpatient unit.

Reducing distance from home and length of stay were both supposed to be central to Transforming Care/Building The Right Support – as far as I can tell, these have not improved in the last six or seven years and in some respects may have got worse.

Winterbourne View 11 Years On. Report card 1: People being admitted to inpatient units, legal status and ward security

It was a little-heralded anniversary last week. Eleven years since the BBC aired its programme about the horrendous abuse meted out to people with learning disabilities and autistic people at Winterbourne View, a ‘specialist’ inpatient unit (NOT a residential care home – the persistent confusion about this in much of the media coverage speaks volumes). Rightful Lives marked the anniversary like this on twitter.

 



Has nothing really changed at all in the intervening 11 years, with the panoply of policies, progress reports, rebranded initiatives when previous ones have not met their targets, meetings, deep dives, reviews, flow charts, workshops, more reviews, and days, weeks and years of people’s lives living in spaces beyond human rights and dignity (not to mention the amount of public money that must have been spent on officials to get a ‘grip’)?

There are many ways to try and answer this question. One thing I’ve been doing sporadically is to look at the official monthly statistics published by NHS Digital about autistic people and people with learning disabilities in inpatient units, to see if they reveal any tangible evidence of change over time (or at least since 2015, when some of this information began to become available). The last time I went through a comprehensive ‘report card’ on inpatient units was in Spring 2019, in a series of four blogposts (the link to the first one of these is here). I’m going to update this information in a short series of blogposts this week

I will not cover in detail the issue of the overall number of people in these inpatient units (I went through this record of failure against the succession of targets the government set for itself here about a year ago, and little has changed since). I want to look again at some of the other statistics that give us some clues about what has been happening with Transforming Care and its successors eleven years on from Winterbourne View.  

These blogposts will focus on information produced publicly by NHS Digital from one of two datasets. It uses data from the Assuring Transformation dataset – for this dataset, health service commissioners provide information (sometimes retrospectively) on the number of people with learning disabilities and autistic people in specialist inpatient services and on various aspects of what is happening with or to people. I’ve collected some of the information into six-month or yearly blocks, and some of the information I report for every six months rather than every month (both you and I would not survive that amount of information…). This means that most of the information goes up to March 2022. In this post I have not used information from the Mental Health Services Dataset (MHSDS), which reports information collected by mental health service providers concerning people identified by them as a person with learning disabilities or an autistic person – this has been published monthly starting more recently than the Assuring Transformation dataset and is less detailed about processes. In different ways both datasets are partial – Assuring Transformation does not include a lot of people in mainstream mental health inpatient units, and some big independent sector inpatient service organisations are not yet reporting aspects of their activity to the MHSDS.

The differences between these datasets matter, and it is no surprise that government only reports data from Assuring Transformation (which reports 2,100 people in inpatient services at the end of February 2022) rather than the MHSDS (which reports 3,505 in inpatient services at the end of February 2022).

As with the previous series, these four blogposts will focus on:

  • Who is going into inpatient services?
  • How far are people from home, and how long are people spending in inpatient services?
  • What planning and review is happening in inpatient services?
  • What is happening about people leaving inpatient services, and where are they going?

So – much of the focus of the various iterations of the Transforming Care programme and its rebranded successors has been on getting people out of inpatient units, but the slower than planned reduction in the overall number of people in these units suggests that there are still substantial numbers of people coming into these units. What do the statistics tell us about this?

 Every month, the Assuring Transformation statistics report how many people have come into an inpatient unit (called ‘admissions’) according to commissioners. The graph below adds these together across six different years (each one October to September), so we can see the number of people coming into these units and whether they have changed over time.

 




The first thing the graph shows us is, pre-COVID, the overall number of admissions to inpatient services was increasing, from 1,810 admissions in 2015/16 to 2,250 admissions in 2018/19. The total number of admissions dropped to 1,745 admissions in Oct 2019 - Sept 2020, when COVID-19 hit, but even through 2020/21 increased again to 1,830 admissions. In total, there have been 11,570 admissions to these inpatient units in the last six years - we don't know how many of these are the same people being admitted more than once or different people being admitted.

The second thing to notice is that a large proportion of admissions (the red chunk) are actually transfers from other hospitals (mainly other inpatient services of various types), running consistently at well over 20% of all admissions. The third thing I want to mention is that more than one in six admissions (the lilac chunk) are re-admissions, where people had previously been in an inpatient service less than a year before. Finally, the purple chunk shows that just over half of admissions to inpatient services (60% in 2020/21) are people who have not been in an inpatient unit for at least a year (or maybe never).


What kinds of places are people being admitted to inpatient services coming from? The graph below shows this information from the Assuring Transformation statistics, for five one-year blocks (starting in October 2016, through to September 2021).

In 2020/21, almost half of people (860 people; 48%) were admitted from their ‘usual place of residence’ and 43% of people (760 people) were admitted from other inpatient and/or hospital services, particularly from ‘acute beds’ (which  includes people being transferred from mainstream mental health inpatient services). A further 95 people (5%) in 2020/21 were admitted from ‘penal establishments’ and 30 people (2%) were admitted from residential care services. Although there have been fluctuations over time, the picture in 2020/21 looks rather similar to the picture for 2016/17.

 



Overall, despite a temporary dip in admissions almost certainly related to the COVID-19 pandemic, it seems like the pressures are as bad in 2020/21 as they were in 2016/17 and continuing to build, for which inpatient services are being used as a response. Building The Right Support in 2015 promised effective community support for people - so why six years on are the number of people being admitted to inpatient units from their 'usual place of residence', or the number of people re-admitted within a year of leaving an inpatient unit, virtually unchanged? If inpatient units are supposed to be better-placed to meet the needs of the people being put in them, why are so many people still being passed around different inpatient units?

Have any changes in admissions resulted in changes to the legal status or the ward security of people with learning disabilities and autistic people in inpatient units? A persistent argument has been that people on MHA Part III sections (particularly those with legal restrictions) and people in higher security places are more likely to need to remain in inpatient services, so the number of people in these categories should not change even if the number of people in inpatient units reduces overall. 

The graph below shows the number of people in inpatient units at the end of March each year from 2016 to 2022, broken down by the legal status of people in inpatient units according to Assuring Transformation data.

The most common legal status for people in inpatient units is a Part II section, where the number of people has dropped by 20% from 2016 to 1,040 people in March 2022. The next most common legal status is a Part III section with restrictions, where the number of people has dropped by 14% from 2016 to 535 people in March 2022. Less common are people with Part III sections without restrictions (which dropped by 39% from 2016 to 235 people in March 2022), people not subject to the Mental Health Act (which dropped by 44% from 2016 to 155 people in March 2022), and people in other sections (35 people; unchanged from 2016 to 2022). It is clear that reductions in the number of people in inpatient units have reduced for people with almost all types of legal status from 2016 to 2022.


The picture is similar when looking at ward security, as the graph below shows. The most common level of ward security is 'general', where the number of people in 'general' ward security dropped by 22% from 2016 to 1,035 people in March 2022. The next most common level of ward security is 'low secure', where the number of people dropped by 34% from 2016 to 555 people in March 2022. Together, people in 'general' and 'low secure' places were 79% of all people with learning disabilities and autistic people in inpatient units in March 2022. 

The number of people in medium secure inpatient units also dropped by 41% from 2016 to 305 people in March 2022, with smaller numbers of people recorded in high secure units (60 people) and Psychiatric Intensive Care Units (50 people)


Clearly, reducing the number of people in inpatient units does not need to exclude people on Part III sections or people on low or medium secure wards.

Overall, is this a record of sustained progress?