Children with learning disabilities in schools in England: trends over time

Summary

• ·        The number of children identified as having special educational needs associated with severe learning difficulties or profound and multiple learning difficulties and needing statements/EHC plans has been gradually increasing from 2010 to 2020.
• ·        The number of children identified as having a special educational need associated with moderate learning difficulties and needing statements/EHC plans has been plummeting but for the last couple of 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 in the last few years.
• ·        Children with learning disabilities are more likely to be eligible for free school meals than children generally.

  

This blogpost updates a blog I did a couple of years ago on Department for Education (DfE) 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. The annual census takes place in January each year (so 2020 figures are before the impact of COVID-19), with 2020 statistics recently published by DfE. 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 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.

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 2020 (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 2020, just over 70,000 children in England had a statement/EHC plan and were identified as children with learning disabilities. For children with MLD this was 29,592 children in 2020, with a large decrease of 31% from 2010 to 2018 but a small increase of 4% from 2018 to 2020.

In 2020, there were 30,593 children with a statement/EHC plan and identified with a primary need of SLD, an increase in numbers of 21% from 2010 to 2020, which from 2017 onwards outstrips the number of children with a statement/EHC plan and MLD. Finally, in 2020 there were 10,003 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 2020 (the reporting of statistics changed in 2015).

The graph shows that in 2020, over 215,000 children in England were identified as children with learning disabilities at the level of SEN Support. For children with MLD this was 211,563 children in 2020, with a large increase from 2015 to 2016 and a decrease from 2016 onwards.

In 2020, there were 3,001 children with a primary need of SLD at the level of SEN Support, with numbers fairly steady over time. Finally, in 2020 there were 916 children at the level of SEN Support with a primary need of PMLD, again with very little change over time.

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 2020. 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 slightly from 2018 to 2020. 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 2020; the number of children in mainstream schools declined rapidly from 2010 to 2017 but has started to increase again.

For children with statements/EHC plans associated with SLD (the blue lines), the number of children with SLD in mainstream schools slightly decreased from 2010 to 2020, 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 from 2010 to 2017.

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 2020 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 towards 50% in 2020. 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 2020. For children with a statement/EHC plan and a primary need of PMLD, the percentage of children in mainstream remained fairly consistent around 14%-15%.

For children identified at the level of SEN Support (I haven’t included a graph on this), in 2020 almost all the children with a primary need of MLD (99.7%) and the vast majority of children with a primary need of SLD (89.6%) or PMLD (80.5%) 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 and at the level of SEN Support 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, 17.7% of children in 2020 were eligible for free school meals. For children with a PMLD label the proportion of children eligible for free school meals is higher (29.9% for children with a statement/EHC plan; 22.2% for children at SEN Support), then higher again for children with an SLD label (37.8% for children with a statement/EHC plan; 33.8% for children at SEN Support), and highest for children with an MLD label (39.7% for children with a statement/EHC plan; 34.0% for children at SEN Support). 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 couple of 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 in the last few years.
• ·        Children with learning disabilities are more likely to be eligible for free school meals than children generally.

Blogpost – What do the statistics tell us about what’s happening to people with learning disabilities and autistic people in inpatient units during COVID-19? Part 3: Restrictive interventions

Summary

The statistics on ‘restrictive interventions’ (restraints) seriously underestimate the true picture, because many independent sector inpatient services do not report into the MHSDS dataset where restraints are recorded.

From January to March 2020, the percentage of people with learning disabilities and/or autistic people in inpatient units who were subject to restraint increased as the overall number of people in inpatient units decreased. In January 2020, 11.3% of people in inpatient units were subject to some form of restraint, rising to 13.5% of people in March 2020.

Those people who did experience some form of restraint experienced restraint on average 9.6 times in January 2020 (almost once every 3 days), reducing to 7.8 restraints per person in March 2020.

People in NHS units and younger people were more likely to experience restraint. 

Physical restraints, particularly supine restraint, standing restraint and seated restraint, were the most commonly used types of restraint, with seclusion and rapid tranquilising injections also common. Around 100 people each month were subject to prone restraint.

As COVID-19 really hit in April 2020, with all the extra restrictions placed on people in inpatient units and no visitors allowed, it will be important to track what happens to people in terms of being restrained – especially as the percentage of people in inpatient units being restrained seems to be increasing.

 

 

 

This blogpost updates and adds more detail to a previous blogpost asking whether regular statistics could tell us anything useful about what was happening to people with learning disabilities and/or autistic people as the first wave of COVID-19 hit from March 2020 onwards. This is the third of three linked blogposts. Part 1 focused on what the statistics show about the number of people in inpatient units as the first peak of the COVID-19 pandemic hit. Part 2 focused on how many people were admitted to these units, how many people left these units, and how many people in these units died. Part 3 (this post) focuses on what the statistics say about restrictive interventions used on people in inpatient units leading up to the start of the pandemic.

In this blogpost, we only have information from NHS Digital from one database, the Mental Health Services Dataset (MHSDS), which is reported monthly from mental health service providers – this records all people flagged across all mental health inpatient services as a person with learning disabilities or an autistic person. This database takes longer to analyse, so information using the MHSDS is only available up until the end of March 2020.

As we have seen from the other two blogposts, the number of people in inpatient units, particularly young people not sectioned under the Mental Health Act typically admitted for short periods of time, had substantially decreased from January to March 2020. This was mainly happening in the wider range of NHS inpatient units rather than in ‘specialist’ independent sector inpatient services, where numbers seemed to be more stable. This decrease in numbers, by the end of March 2020, happened because of fewer people being admitted to inpatient units and more people being discharged from inpatient units. By March, the number of people dying in inpatient units had not increased to the point where the published statistics recognised them.

The question I want to ask in this blogpost is as follows: As the first peak of the COVID-19 pandemic started to hit in March 2020, how often were various types of ‘restrictive intervention’ (restraint)  reported, how many autistic people and/or people with learning disabilities were subject to them, and did any of this change over time?

Before going through yet more graphs, I first want to say that all the numbers I go through will severely underestimate the number of people with learning disabilities and/or autistic people subject to these restraints, and the number of restraints that people are subjected to. As I discuss in the 1^st blogpost in this trio, the MHSDS reports vastly higher numbers of autistic people and/or people with learning disabilities in inpatient units than the Assuring Transformation data preferred by NHS England/Improvement. However, many independent sector organisations recorded by Assuring Transformation as having people in inpatient units do not appear in the MHSDS dataset at all. The table below firstly lists independent sector organisations which recorded a total of 345 people in inpatient units in the Assuring Transformation dataset but no-one in the MHSDS (remember, only the MHSDS records restraints) at the end of March 2020. This includes two organisations (Partnerships in Care and the Priory Group) which were recording people in the MHSDS up until the end of January 2020 but then mysteriously stopped.

[I’ve also included in this table three big organisations (Cygnet, Elysium and St Andrew’s) who recorded 450 people with learning disabilities and/or autistic people in inpatient units in Assuring Transformation at the end of March 2020, but recorded 1,115 people in inpatient units in the MHSDS, just to show how severely Assuring Transformation under-records the number of autistic people and people with learning disabilities in inpatient units].

Number of people recorded as being in inpatient units at the end of March 2020	Assuring Transformation	MHSDS
Independent sector providers recording people in Assuring Transformation but not in the MHSDS
Bramley Health	10
CAS Behavioural Health Ltd	35
Cheswold Park Hospital	5
Lighthouse Healthcare Ltd	15
MHC (Health) Ltd	5
Partnerships in Care Ltd	95	[until January 2020, MHSDS recorded 200 people in Partnerships in Care inpatient units]
Priory Group Ltd	155	[until January 2020, MHSDS recorded 15 people in Priory Group inpatient units]
Raphael Healthcare Ltd	5
St George Healthcare Group	15
The Breightmet Centre for Autism	5
Independent sector providers recoding much larger numbers of people in the MHSDS than in Assuring Transformation
Cygnet Health Care Ltd	175	300
Elysium Healthcare	135	470
St Andrew’s Healthcare	140	245

The MHSDS has been reporting information on people with learning disabilities and/or autistic people in inpatient units for two years now – this should have been more than enough time to enforce reporting into it by all inpatient services, including those in the independent sector (why is reporting into the MHSDS not a condition written into contracts or CQC registration?).

Bearing this large gap in mind, what do the MHSDS statistics tell us about restrictive interventions in inpatient services from January to March 2020? The first graph shows the total number of restrictive interventions recorded in each month and the number of people in inpatient services subjected to these restrictive interventions, broken down by type of service.

The light red line shows that NHS inpatient services used restrictive interventions with autistic people and/or people with learning disabilities 2,935 times in January 2020, decreasing to 2,415 times in March 2020. In January 2020 (the dark red line), 260 people in NHS inpatient services experienced a restrictive intervention at least once, compared to 280 people in March 2020. Independent sector inpatient services (the purple lines) used restrictive interventions 945 times on 145 people in January 2020, compared to using them 840 times on 140 people in March 2020.

 

 

To find out a bit more what these numbers mean, we need to take into account that the number of people in inpatient units from January to March 2020 dropped quite a lot. The graph below shows two things. First, the solid lines show what percentage of autistic people and/or people with learning disabilities were subject to at least one restrictive intervention in each month (the solid light red line is for people in NHS inpatient units; the solid light purple line is for people in independent sector inpatient units). In January 2020, 11.7% of people in NHS inpatient units and 10.5% of people in independent sector inpatient units were subject to at least one restrictive intervention. By March 2020 this had increased to 14.4% of people in NHS units and 12% of people in independent sector units. There could be several reasons for this, including more restraints being used as lockdown restrictions began to tighten, or fewer people coming into inpatient units who wouldn’t typically be subject to restrictive interventions.

In the same graph, the broken lines show, for those subject to restrictive interventions, the average number of restrictive interventions that people were subject to. In NHS inpatient services (the dark red line), people were subject to an average 11.3 restrictive interventions per person in the month of January 2020 (just over 1 every 3 days), which reduced to 8.3 per person in March 2020. In independent sector inpatient units (the dark purple line), people were subject to an average 6.5 restrictive interventions per person in January (just over 1 every 5 days), which reduced to 6.0 per person in March.

 

  

Because young people in inpatient units have been more likely to be subject to more restrictive interventions in previous statistics, I also looked at restrictive interventions for the age bands under 18, 18-24, 25-34 and 35+ for January to March 2020. The first graph below shows the percentage of people in inpatient units subject to at least one restrictive intervention in each month January to March 2020. [The light orange line for people aged under 18 is invisible because it is almost identical to the line for people aged 25-34 years]. This shows that people aged 18-24 years were most likely to experience at least one restrictive intervention in each month, and that for all younger age groups (except people aged 35+) the percentage of people experiencing restrictive interventions increased from February to March 2020.

 

 

The next graph shows the average number of restrictive interventions that people were subject to, by age band. Overall, people aged under 18 and 18-24 were subject to more restrictive interventions than older age groups, with a general trend towards people experiencing fewer restrictive interventions from January to March 2020.

 

Finally, I looked at the specific types of restrictive intervention that people with learning disabilities and/or autistic people in inpatient units are subject to (or more correctly, are recorded by inpatient services as being subject to). The graph below shows the number of episodes of different types of physical restraint that people were subject to each month. The MHSDS reports a proliferating range of different types of physical restraint, which I find very depressing. The most commonly used form of physical restraint was ‘supine’ restraint (being restrained lying down but face up rather than face down as in prone restraint), which was used 1,110 times in January 2020, dropping to 850 times in March 2020. Prone restraint, which has been acknowledged to be particularly dangerous, was used 275 times in January, increasing to 290 times in March. Standing and seated restraint were also common. Restrictive escort was less common (but still used around 170 times per month), and side and kneeling restraint were relatively rare. Large numbers of physical restraints (525 in January through to 365 in March) were classified by services as ‘other’, which is a place my imagination does not want to go to.

 

 

The next graph below shows the number of autistic people and/or people with learning disabilities who were subject to these types of physical restraint in each month. Large numbers of people were subject to supine (165 people in January, 150 people in March), standing (160 people in January, 155 people in March), and ‘other’ physical restraint (150 people in January, 125 people in March). Substantial numbers of people were subject to seated (105 people in January, 95 people in March), prone (100 people in January, 90 people in March), and restricted escort (70 people in January and March) physical restraint.

 

 

In the MHSDS, inpatient services also record various types of chemical restraint, mechanical restraint, seclusion and segregation. As the graph below shows, these were generally used less frequently than physical restraint. The most common of these forms of restraint was seclusion (time-limited solitary confinement), which was used 290 times in January and 260 times in March. Injection with a rapid tranquiliser was recorded as being used 180 times in January and 130 times in March. Oral medication as a form of chemical restraint was used 100 times in January and 80 times in March, and mechanical restraint was used 70 times in January and 85 times in March. Seclusion (longer-term solitary confinement) was recorded as being used 20 times in January and 10 times in March.

 

The final graph below shows the number of people subject to these types of restrictive intervention. In January 2020, 135 people were subject to seclusion, compared to 130 people in March 2020; 75 people were subject to rapid tranquilising injection in January (70 people in March), 45 people subject to oral medication as a form of chemical restraint in January (50 people in March), and 35 people were subject to mechanical restraint in January (25 people in March).

 

 

Overall, because many independent sector independent sector services inexplicably don’t report to the MHSDS, these statistics seriously under-estimate the number of restrictive interventions that people with learning disabilities and/or autistic people in inpatient units experience. Published figures also do not report physical assaults and self-harm experienced by people in inpatient units. As inpatient units started to prepare for/adjust to COVID-19, the percentage of people in inpatient units subject to restraint increased as the overall number of people in inpatient units decreased. In January 2020, 11.3% of people in inpatient units were subject to some form of restraint, rising to 13.5% of people in March 2020. People in NHS units and younger people were more likely to experience restraint. However, those people experiencing restraints experienced a decreasing number of restraints from January to March 2020.

Physical restraints, particularly supine restraint, standing restraint and seated restraint, were the most commonly used types of restraint, with seclusion and rapid tranquilising injections also common. Around 100 people each month were subject to prone restraint.

As COVID-19 really hit in April 2020, with all the extra restrictions placed on people in inpatient units and no visitors allowed, it will be important to track what happens to people in terms of being restrained – especially as the percentage of people in inpatient units being restrained seems to be increasing.

 

 

Blogpost – What do the statistics tell us about what’s happening to people with learning disabilities and autistic people in inpatient units during COVID-19? Part 2: How many people were admitted to these units, how many people left these units, and how many people in these units died?

Summary

This blogpost is about how many autistic people and/or people with learning disabilities went into inpatient units (including ATUs), came out of inpatient units, or died during the COVID-19 pandemic.

The number of people going into inpatient units dropped every month, roughly halving  from January to May 2020.

According to the Assuring Transformation dataset, the number of people leaving inpatient units increased from January to March 2020, but then dropped sharply to May 2020.

This pattern of a rise and fall in the number of people leaving inpatient services was true for people leaving for independent living, supported housing and residential care. A gradual drop over time was seen for people leaving inpatient units for the family home with support, and for transfers to other inpatient units.

According to the MHSDS, the number of people going in and out of an inpatient service in the same calendar month dropped from January to March 2020, and the number of people leaving inpatient units who may have been there for longer increased from January to March 2020.

For the first time ever in a single month, the Assuring Transformation dataset reported that 5-7 people had died in inpatient units in April 2020 (the first peak of the pandemic). It is not clear if any of the people discharged to an ‘other discharge destination’ included anyone with COVID-19 symptoms moving to critical care.

 

 

This blogpost updates and adds more detail to a previous blogpost asking whether regular statistics could tell us anything useful about what was happening to people with learning disabilities and autistic people as the first wave of COVID-19 hit from March 2020 onwards. This is the second of three linked blogposts. Part 1 focused on what the statistics show about the number of people in inpatient units as the first peak of the COVID-19 pandemic hit. Part 2 (this post) will focus on how many people were admitted to these units, how many people left these units, and how many people in these units died. Part 3 will focus on what the statistics say about restrictive interventions used on people in inpatient units leading up to the start of the pandemic.

In this blogpost, we have information from NHS Digital from two databases. One of them is Assuring Transformation (AT), which is reported monthly from health service commissioners and concerns what NHS England/Improvement (I will use NHSEI from now on) consider to be the ‘core business’ of Transforming Care. At the time of writing, information is available up to the end of May 2020.

The second database is the Mental Health Services Dataset (MHSDS), which is reported monthly from mental health service providers – this records all people flagged across all mental health inpatient services as a person with learning disabilities or an autistic person. This database takes longer to analyse, so information using the MHSDS is only available up until the end of March 2020.

Information on admissions, ‘discharges’ and deaths of autistic people and/or people with learning disabilities is recorded and published slightly differently across the two datasets, so direct comparisons of the two (as I did in Part 1) are not possible.

The question I want to ask in this blogpost is as follows: As the first peak of the COVID-19 pandemic started to hit in March 2020, were there any changes to how many people with learning disabilities and/or autistic people were admitted to inpatient units, how many people left (were ‘discharged’ from) inpatient units, and how many people died in inpatient units? Part 1 of this blogpost trio showed that the number of people in inpatient units, particularly young people with no section under the Mental Health Act, dropped substantially as COVID-19 began to hit, particularly in the types of NHS inpatient services where people may be staying for short periods of time. How did this happen?

People going into inpatient units

Let’s start by looking at the number of people with learning disabilities and/or autistic people admitted to inpatient units.

The first graph below shows the number of admissions to inpatient units each month from January to May 2020, according to the Assuring Transformation dataset. Overall, this shows a steady and substantial decrease in the number of people being admitted to inpatient units, from 155 people in January to 80 people in May (a decrease of 48%). There were big drops in the numbers of people being admitted to an inpatient unit for the first time in at least a year (from 95 to 50 people), in people who were being re-admitted to an inpatient unit within a year of their last stay (from 25 to 15 people), and in people being transferred from one inpatient unit to another (from 40 to 15 people).

 

Information on admissions can also be broken down by where people were admitted from – this is in the graph below. This graph shows that there were big decreases across the board in terms of where people were being admitted from – from people’s usual place of residence (from 60 to 35 people), from ‘acute beds’ (from 45 to 20 people), and from ‘other hospital’ services (typically other inpatient units; from 25 to 10 people).

 

As outlined in Part 1 of this blogpost trio, the MHSDS records much larger numbers of autistic people and/or people with learning disabilities in inpatient units, partly because the MHSDS includes people in a wider range of NHS general mental health as well as ‘specialist’ mental health inpatient services who are often in these services for very short periods of time (including for the purposes of ‘respite’). 

The graph below shows the number of people admitted to inpatient units from January to March 2020 according to the MHSDS. The first thing to notice is that the number of admissions is huge (1,580 admissions in January 2020) compared to the Assuring Transformation dataset. The second thing is that, as in the Assuring Transformation dataset, the number of admissions drops substantially, from 1,580 at the end of January to 1,165 at the end of March (a drop of 26%). The third thing is that around two-thirds of admissions are for people who are in and out of an inpatient unit in the same calendar month, a very different picture to that given by Assuring Transformation. Finally, this drop is consistent across admissions where a person is in and out in the same calendar month (from 1,050 to 850 admissions), and admissions where a person is still in an inpatient unit at the end of a calendar month (from 530 to 315 admissions).

 

So far we have seen that the number of people with learning disabilities and/or autistic people being admitted to inpatient units dropped substantially as the COVID-19 pandemic began to hit, which might suggest inpatient units beginning to go into a form of lockdown and other parts of the NHS which normally refer people into inpatient units starting to become unavailable to people as the NHS COVID-19 response was prioritised at the expense of other NHS services.

People leaving inpatient units, and people dying

What do the statistics say about how many people have been ‘discharged’ from inpatient services in the first part of 2020? The graph below shows what Assuring Transformation records about the number of people ‘discharged’ from inpatient units from January to May 2020 and where people were ‘discharged’ to (‘discharge’ is in quotation marks because in this dataset it includes people transferred to another inpatient unit and, crassly, people who died in inpatient units).

Overall, the graph shows the number of people being ‘discharged’ rising to a peak in March 2020 (as the COVID-19 pandemic was really beginning to hit) but then decreasing sharply to May 2020, where the number of people being discharged was much lower than the number of people being discharged in January. In terms of the types of places where people were being ‘discharged’ to, the same pattern was seen for people being discharged to supported housing, independent living and residential care. The number of people being ‘discharged’ to other hospitals (typically other inpatient services) and people’s family homes with support stayed relatively stable and started to decrease by May 2020.

When considering how many people died in inpatient units during the COVID-19 pandemic, one thing to remember is how information is reported in these datasets. All numbers are rounded to the nearest five except when there are fewer than five people, in which case an asterisk is recorded. In every previous month that I have looked at the Assuring Transformation dataset, the number of people dying in an inpatient unit in any single month has been recorded as an asterisk (which means anything between 0 and 4 people). In April 2020 (the peak of the COVID-19 pandemic so far), for the first time this dataset recorded 5 people (so between 5 and 7 people due to the rounding) dying in inpatient units – this was not repeated in May 2020. Also worrying is the number of people ‘discharged’ to ‘another discharge destination’ – this went from 15 people in January 2020 up to 35 people in March 2020 and back down to 5 people in May 2020. It is not clear how many of these ‘discharges’ could be people with COVID-19 symptoms being moved to critical care hospital beds, where any deaths would not be recorded as people dying in the inpatient unit.

The final graph below is the ‘discharge’ information from the MHSDS. Information here is broken down into people ‘discharged’ in that month who were in an inpatient unit at the start of the month, and people ‘discharged’ within that  month who had been admitted after the start of the same calendar month. Again, the numbers here are much bigger than those reported in the Assuring Transformation dataset. Consistent with the picture on admissions, the number of people being admitted and ‘discharged’ in the same calendar month decreased from January to March 2020. Also consistent with the Assuring Transformation dataset, the number of people leaving inpatient units who may have been in inpatient units for slightly longer increased substantially from January to March 2020. According the MHSDS, the vast majority of people were ‘discharged to ‘the community’.

Despite the much higher numbers of ‘discharges’ recorded in the MHSDS, fewer than 5 people were recorded as having died in inpatient units in any single month from January to March 2020.

 

Conclusion

Overall, it looks like inpatient units (probably more focused on NHS inpatient units rather than the independent sector) were preparing to hunker down in the run-up to COVID-19 hitting in March 2020. The number of people being admitted to inpatient units dropped quite a lot (and continued to drop), and up to March 2020 more people were being discharged to ‘community’ settings (worryingly, including residential care homes). After March, though, the number of people being discharged from inpatient units has dropped to levels lower than in January 2020.

It is clear that more people were recorded as having died in inpatient units in April 2020 (the first peak of the pandemic) than at any time since this data started to be collected. What is not clear is how many people had COVID-19 and were moved to critical care units for the treatment of COVID-19, and would therefore not be counted in these statistics as a death. It also has to be remembered that, in their different ways, both datasets don’t count everyone with learning disabilities and/or autistic people in inpatient units; both these statistics are likely to underestimate the number of people who were in inpatient units when they contracted COVID-19 and died.

There was clearly some attempt amongst inpatient units to reduce the movement of people in and out, and to help some people move out before the first peak of the pandemic hit. Whether the much lower levels of people going into and out of inpatient units will continue, and whether we will ever know the true scale of how many people in inpatient units died COVID-19 related deaths during this period, is not clear.

What can the statistics tell us about people with learning disabilities and/or autistic people in inpatient units during COVID-19? Part 1 - number of people

Summary

This blogpost is about the number of autistic people and/or people with learning disabilities in inpatient units (including ATUs) during the COVID-19 pandemic.

The number of people in inpatient units run by private companies did not change much during the first wave of the COVID-19 pandemic.

The number of people in inpatient units run by the NHS dropped as the first wave of COVID-19 hit. These are likely to be people who were staying in general mental health inpatient units for a few days or weeks.

The biggest drops in the number of people in inpatient units were in young people (aged under 25 years) and people who had not been sectioned under the Mental Health Act.

 

This blogpost updates and adds more detail to a previous blogpost asking whether regular statistics could tell us anything useful about what was happening to people with learning disabilities and autistic people as the first wave of COVID-19 hit from March 2020 onwards. This is the first of three linked blogposts. Part 1 (this post) will focus on what the statistics show about the number of people in inpatient units as the first peak of the COVID-19 pandemic hit. Part 2 will focus on how many people were admitted to these units, how many people left these units, and how many people in these units died. Part 3 will focus on what the statistics say about restrictive interventions used on people in inpatient units leading up to the start of the pandemic.

In this blogpost, we have information from NHS Digital from two databases. One of them is Assuring Transformation (AT), which is reported monthly from health service commissioners and concerns what NHS England/Improvement (I will use NHSEI from now on) consider to be the ‘core business’ of Transforming Care – people in specialist inpatient services for people with learning disabilities and autistic people where the unachieved policy aim for at least 8 years has been to drastically reduce the number of people in these units. In this post I will report information from AT up to the end of May 2020, although as commissioners can report retrospectively very recent figures always underestimate the number of people in these units.

The second database is the Mental Health Services Dataset (MHSDS), which is reported monthly from mental health service providers – this records all people flagged across all mental health inpatient services as a person with learning disabilities or an autistic person. This database takes longer to analyse, so information using the MHSDS is only available up until the end of March 2020.

The question I want to ask in this blogpost is as follows: As the first peak of the COVID-19 pandemic hit in March 2020, were there any changes to how many people with learning disabilities and/or autistic people were in inpatient units?

The first graph below shows the number of autistic people and/or people with learning disabilities (just switching things around so hopefully no-one feels like they’re always the and/or) in inpatient units.

The purple lines with triangles are the number of people recorded by the AT dataset in inpatient units, from January 2020 to May 2020. There are two purple lines here, although they are pretty close together. The light purple line is a snapshot of the number of people in inpatient units at the end of each month (these are the figures that NHSEI like to use). The darker purple line is the number of people who have been in inpatient units at any time during the month (so it could be people who left inpatient services at some point in the month, or people who were in and out of an inpatient unit in the same month).

Bearing in mind that in AT data recent months are always underestimates, overall there might be a slight downward trend in March and April (from 2,170 people at the end of February to 2,045 people at the end of April) but the number of people may be creeping back up in May (2,060 people at the end of May). Because the light and dark purple lines are pretty similar,  the AT data also suggest that the population of people in inpatient units is pretty stable, with relatively few people moving in and out of these units for very short periods of time.

In the same graph, the red lines with circles are from the MHSDS. They are only up to the end of March 2020, but they show a completely different picture to the AT dataset. The light red line is the snapshot of the number of people with learning disabilities and/or autistic people in inpatient units (including both ‘specialist’ and general mental health units) at the end of each month. The darker red line is the number of people spending some time in an inpatient unit at some point during each month.

A few things.

First, the number of autistic people and/or people with learning disabilities in inpatient units recorded in the MHSDS is much higher than the number of people recorded in AT. This is mainly because the MHSDS records people with learning disabilities and/or autistic people in a much wider range of mental health inpatient services such as adult and older people’s mental health inpatient units than the mainly ‘specialist’ learning disability inpatient services covered by AT. For example, at the end of January the MHSDS recorded 3,810 people in inpatient units at the end of the month compared to the 2,185 people recorded by AT.

Second, in the MHSDS dataset there is a big difference in the number of autistic people and/or people with learning disabilities in inpatient units at the end of each month versus the number of people spending some time in inpatient units during each month. This is mainly because the MHSDS records a lot of people spending very short periods of time in inpatient units. For example, during January 2020 the MHSDS recorded 1,050 episodes of people with learning disabilities and/or autistic people going in and out of inpatient units within the same calendar month, so they would not be picked up in any end of month ‘snapshot’ figures (the AT dataset records 10 people). The MHSDS also reports that there were 575 episodes of people spending some time in inpatient units in January 2020 for the purposes of ‘respite’ (the AT dataset records 45 episodes).

Third, the MHSDS dataset records big drops in the number of autistic people and/or people with learning disabilities in inpatient units from January to March 2020. Looking at numbers of people in inpatient units at the end of each month, this dropped from 3,810 people at the end of January to 3,260 people at the end of March. Looking at the number of people spending any time in an inpatient unit during each month, this dropped from 5,430 people during January to 4,845 people during March. The AT dataset records much smaller decreases in this time period.

So, there are signs from the AT dataset of a small decrease and signs from the MHSDS dataset of a much bigger decrease in the overall number of people with learning disabilities and/or autistic people in inpatient units as the first peak of COVID-19 started to hit.

The next thing I looked at was whether these decreases were consistent across NHS and independent sector inpatient units. In making this comparison, it is important to remember that, for autistic people and/or people with learning disabilities, the kinds of inpatient services they spend time in are much more diverse in NHS services than in independent sector services. The graph below is from the MHSDS and breaks down, for each month January – March 2020, how many people across NHS and independent sector services were in different types of inpatient service. In independent sector services, most people are in a learning disability ward (although many other people are in adult mental health wards and some are in child and adolescent mental health wards). In NHS services, a minority of people are in learning disability wards, with more people in adult mental health wards and many people in a range of other types of ward.

 

 

Bearing this in mind, the graph below shows the number of people in inpatient services at the end of each month broken down by NHS vs independent sector provider. The AT dataset (the light purple line is NHS, the dark purple line is independent sector) shows a decrease in the number of people in NHS inpatient services from the end of February to the end of March 2020, with smaller changes either side of this. The AT dataset also shows that there was little change in the number of people in independent sector inpatient services throughout. The MHSDS dataset shows a much more pronounced decrease in the number of people in NHS inpatient services (the light red line) during March 2020. As for the number of people in independent sector services recorded by the MHSDS (the dark red line), there appears to be a drop during February 2020 but not from February to March. However, looking at the data in more detail, this is because two independent sector providers (Partnerships in Care with 200 people, and the Priory Group with 15 people) are included in the MHSDS at the end of January but disappear from the MHSDS altogether after that. If you add in these 215 people to February and March 2020 figures (the dotted dark red line) the number of people in independent sector inpatient services does not change from January to March 2020.

 

 

The continuing work of the Joint Parliamentary Committee on Human Rights on the detention of children and young people with learning disabilities and/or autistic children and young people highlights the importance of understanding what is happening to young people in inpatient units during the COVID-19 pandemic. The graph below shows how many people were in inpatient units at the end of each month (AT data are the purple lines, MHSDS data are the red lines), broken down into four age band: under 18 years; 18-24 years; 25-34 years; 35+ years. I chose these four age bands firstly not to clog up the graph too much, and secondly because for people 35 years old and upwards the patterns are very similar. What does the graph show? For each age band, the AT dataset seems to show pretty small decreases in the number of people in inpatient units, whereas the MHSDS dataset shows bigger decreases.

 

Because the number of people in different age bands varies so much, another way to look at this is to look at percentage change over time. The graph below looks at percentage change in numbers for each age band over time, taking the end of January 2020 as a baseline. The AT dataset (the purple lines again) show that the number of young people aged under 18 years (the lightest purple line) reduced by 19.1% up to the end of April 2020, although numbers were creeping up again by the end of May 2020. The number of young people aged 18-24 years in inpatient units had also decreased by 8.1% to the end of May 2020, while decreases were smaller for older age groups. The MHSDS dataset (the red lines again) shows a similar pattern, but magnified. The number of young people aged under 18 years in inpatient units (the orange line) dropped by 35.6% from January to March 2020, with decreases of 17.2% for people aged 18-24 years, 14.9% for people aged 25-34 years, and 10.3% for people aged 35 years plus.

 

 

The last thing I looked at for this blogpost was the legal status of autistic people and/or people with learning disabilities in inpatient units. The graph below shows, at the end of each month, how many people were in inpatient units broken down by legal status (informal – ie no section; Part II section; Part III section; and other section). The AT dataset (purple lines) show that the most common legal status for people in inpatient units are Part II and Part III sections, which seem to show little change over time. Informal legal status is less common in the AT dataset, but it does seem to show some decrease over time, and people on other types of section are quite rare. In the MHSDS, the number of people in inpatient units on Part III sections and other sections seems very similar to the AT dataset. However, the number of people with informal legal status is much, much higher than the number recorded in the AT dataset, and shows a sharp decrease from January to March 2020. The number of people with a Part II section recorded by the MHSDS is also much higher than the number of people recorded in the AT dataset, and shows a less dramatic but appreciable decrease from January to March 2020.

 

As with the information on age bands, I also looked at legal status in terms of percentage change over time (see the graph below). Bear in mind that the number of people with ‘other’ sections is very low, so small differences in number can look like big percentage changes over time, so the big percentage increase in people with other sections needs to be viewed sceptically. Aside from this, both the AT and MHSDS datasets show a consistent drop in the number of people with informal legal status in inpatient units over time (around a 30% drop). The MHSDS (also less so for the AT dataset) also reports a drop of 10.3% in the number of people with Part II sections in inpatient units from the end of January to the end of March 2020. There is little change in the number of people with Part III sections.

 

 

What does all this add up to? I think these statistics tell us the following things:

1) The mainly ‘specialist’ inpatient services covered by Assuring Transformation, particularly those in the independent sector, have shown little change in the number of people with learning disabilities and/or autistic people throughout the first peak of COVID-19.

2) There are many more people in inpatient services, often for very short periods of time (including for ‘respite’ purposes), than are reported by Assuring Transformation. These are more likely to be NHS general adult mental health inpatient services than ‘specialist’ learning disability services. The number of autistic people and/or people with learning disabilities in NHS adult mental health and learning disability inpatient services dropped sharply as COVID-19 began to hit, whereas the number of people in independent sector inpatient services showed little change over time.

3) The biggest decreases in numbers of people in inpatient units were among young people (aged under 18 and 18-24 years) and people with informal legal status (and, to an extent, Part II sections).

Obviously these statistics can’t tell us what happened to the people who would have been using these inpatient services, or why the numbers have dropped. We will also have to wait to see if these reduced numbers become ‘the new normal’, or if things return to how they were before COVID-19. In Part 2 of this blogpost trio I will look at how many people were admitted to these units, how many people left these units, and how many people in these units died