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.