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