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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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