This blogpost is a copy of written evidence I was asked to provide for the Commons Health and Social Care Committee inquiry into the treatment of autistic people and people with learning disabilities. It goes through some of the statistics about people in inpatient units, in my best pompous data-nerd style.
People with learning disabilities and autistic
people in inpatient services in England
Written evidence to the Commons Health and Social Care Select Committee:
Inquiry into the treatment of autistic people and people with learning
disabilities
May 2021
Professor Chris Hatton, Manchester Metropolitan University
This written evidence provides a brief overview of
statistical information regarding autistic people and people with learning
disabilities in inpatient services, focusing on:
1) The
number of people in inpatient services
2) Admissions,
discharges and deaths
3) Transfer
planning
4) Restrictive
interventions
5) Length
of stay in inpatient services
6) Some
observations on data
The number of people in inpatient services
There are two sources of monthly information on the number
of people with learning disabilities and autistic people in inpatient services
published by NHS Digital[1].
The first is the Assuring Transformation (AT) dataset– this
information is collected retrospectively by health service commissioners in
England and has been collated and reported monthly by NHS Digital from February
2015. DHSC and NHS England/Improvement communications and written policy
concerning Transforming Care and Building The Right Support use statistics
drawn from this dataset.
The second uses information from an extension of the Mental
Health Services Data Set (the MHSDS) to include people with learning
disabilities and autistic people in mental health inpatient services. The MHSDS
records monthly data from service providers flagging people with learning
disabilities and autistic people in mental health inpatient services (including
both mainstream mental health and specialist inpatient services), reported from
February 2018 onwards by NHS Digital.
There are some major differences in scope between the AT and
MHSDS datasets, the most substantial being that the MHSDS reports autistic
people and people with learning disabilities in mainstream mental health
inpatient services, often for short durations, which the AT dataset tends to exclude
(possibly as a consequence of the MHSDS being reported by providers and AT
being reported by commissioners). The AT dataset also reports more detailed
information on aspects of service processes, while only the MHSDS currently
reports information on restrictive interventions (various types of physical,
mechanical and chemical restraint, seclusion and segregation).
Chart 1 below shows the number of people with learning
disabilities and autistic people in inpatient services over time, according to
the AT and MHSDS datasets. There are four issues to consider when looking at
this chart
1)
AT numbers are retrospectively reported by
commissioners, with the most recently reported numbers (2,035 people in March
2021) added to over time as commissioners update their returns. This typically
adds at least 100 people to the initially reported figures. Not taking this
into account will inflate the scale of any reduction in inpatient numbers.
2)
Figures for 2020 and 2021 must be considered in
the light of COVID-19, where admissions (particularly for children and young
people) sharply decreased during the first peak of COVID-19 in spring 2020, and
it is unclear what will happen once restrictions end. It is difficult to
interpret recent figures as representing long-term trends in Transforming Care/Building
The Right Support policy versus inpatient service responses to COVID-19.
3)
The MHSDS, which includes autistic people and
people with learning disabilities in generic mental health inpatient services, reports
much higher numbers of people (typically around 1,000 more people) at the end
of each month than the AT dataset. If ‘specialist’ inpatient units are reducing
their numbers, an important part of the Building The Right Support programme
should include what is happening to autistic people and people with learning
disabilities in generic mental health inpatient services.
4)
These are end of month figures, which
under-estimate the number of autistic people and people with learning
disabilities using typically generic mental health inpatient services for very
short periods of time. For example, MHSDS data for January 2021 report 3,205
people in inpatient services at the end of the month, but 4,215 people in
inpatient services at some point in the month. Again, the Building The Right
Support programme should be interested in people using generic mental health
inpatient services for very short periods of time, including for the purposes
of ‘respite’ (325 people in January 2021).
Chart 1: Number of people with learning disabilities and
autistic people in inpatient services at the end of the month (AT and MHSDS)
Admissions to inpatient services
Data on admissions to inpatient services are available for a
longer time period for the AT dataset than the MHSDS, so these are the data
reported on in this section.
Chart 2 below shows the number of people with learning
disabilities and autistic people admitted to inpatient services over five years,
aggregated from monthly data into annual blocks. This chart breaks down admissions
into people transferred from another hospital, people re-admitted to an
inpatient service within a year of leaving one, and people admitted to an
inpatient service for the first time (or at least more than a year since
leaving one).
From 2015-16 to 2018-19 the chart shows an increasing number
of admissions to inpatient services, with the decrease in 2019-20 likely to be
due to restrictions on admissions during COVID-19.
Across the five years of data, 25% of admissions have been
transfers from other hospitals, 16% have been re-admissions within a year (5%
of all admissions are re-admissions within 30 days of leaving an inpatient
service), and 60% have been first admissions.
Chart 2: Number of admissions of autistic people and people
with learning disabilities to inpatient services annually, from Oct 2015 to
Sept 2020 (AT dataset)
In terms of where people were being admitted to inpatient
units from, AT data available across four years (Oct 2016 – Sept 2020) shows
that almost half of admissions (46%) were from the person’s usual place of
residence, 29% of admissions were from acute beds in hospitals (typically acute
generic mental health beds), 2% were from secure forensic locations, 14% were
from other types of hospital location, 4% were from penal establishments, and
4% were from residential care.
This reinforces the importance of understanding what is
happening to people with learning disabilities and autistic people in generic
mental health inpatient services, particularly the possibility of people being
repeatedly in and out of ‘revolving door’ inpatient services in the absence of
proper support.
‘Discharges’ from inpatient services
Data on discharges from inpatient services are available for
a longer time period for the AT dataset than the MHSDS, so these are the data
reported on in this section.
Chart 3 below shows the number of discharges of people with
learning disabilities and autistic people from inpatient services over five
years, aggregated from monthly data into annual blocks. This chart breaks down discharges
into the destinations that people were immediately discharged to, including
transfers to other hospital locations, discharges to community locations, and
‘other’ discharges.
Deaths of autistic people and people with learning disabilities
are treated as a category of ‘other’ ‘discharge’, which I discuss in the next
section.
Chart 3 below shows that over the five years Oct 2015 – Sept
2020 there have been a total of 10,830 ‘discharges’. Of these discharges:
·
65% have been to various community locations,
including family homes with support (22% of all discharges), supported housing
(20%), residential care (17%) and independent living (4%);
·
21% have been transfers to other inpatient
hospital locations, most commonly low secure hospitals (6% of all ‘discharges’)
and ‘other’ types of hospital (5%), but also medium secure units, acute
transfer to a learning disability unit, acute transfer to a mental health unit,
forensic rehab, and complex/continuing care/rehab (each 2% of all discharges);
·
A further 14% of discharges were to ‘other’
unspecified locations, a substantial number of discharges which requires
further specification by NHS England/Improvement and NHS Digital.
In terms of trends over time, the number of discharges
increased from 2015-16 to 2017-18, but has decreased since.
Chart 3: Number of discharges of autistic people and people
with learning disabilities from inpatient services annually, from Oct 2015 to
Sept 2020 (AT dataset)
Deaths of autistic people and people with learning disabilities in
inpatient services
In publicly available monthly data in both the AT and MHSDS
datasets, deaths of people in inpatient services are recorded as a category of
‘other discharge’. Because of standard NHS Digital rounding rules, all the data
in the AT and MHSDS datasets are rounded to the nearest five, or suppressed if
the number is less than five. With the exception of April 2020 during the first
peak of the COVID-19 pandemic, where AT recorded 5 deaths and MHSDS recorded 10
deaths, no individual month in either dataset has recorded any figures on the
number of people who have died in inpatient units in each month. If any month
with suppressed data can represent 0-4 deaths, then over the course of a year
this could be anything from 0-48 people’s deaths not represented in the data.
It is vital for raw data to be aggregated by NHS Digital
over longer periods of time (6-monthly or annually) to enable better scrutiny
of the number of people dying in inpatient services, including during the
COVID-19 pandemic.
Plans for transferring people out of inpatient services
The AT dataset includes a number of indicators relating to
transferring people with learning disabilities and autistic people out of
inpatient services.
Chart 4 below shows the percentage of people currently
within inpatient units with various types of care plan. In Sept 2020 27% of
people in inpatient units did not need inpatient care according to their care
plan (down from 34% in Sept 2015), including 5% of all people in inpatient
units with a delayed transfer of care. 32% of people in Sept 2020 (up from 24%
in Sept 2015) were recorded in their care plan as not dischargeable, and a
further 42% were recorded in their care plan as needing inpatient care but with
an active treatment plan.
Chart 4: Percentage of people in inpatient units with
different types of care plan (AT dataset)
In Sept 2020 just under half (49%) of all people in
inpatient units had a transfer planned (up from 30% in Sept 2016), and for 9%
of all people in inpatient units their planned transfer was overdue (compared
to 8% in Sept 2016).
In Sept 2020, among those with a planned transfer date 56%
of councils were aware of this planned transfer date (down from 68% in Sept
2016).
There are also indications that fewer transfer plans are
being agreed with important others. Chart 5 below shows the percentage of
transfer plans that have been agreed with other people and agencies. Although
there has been an improvement from Sept 2019 to Sept 2020 this has not offset
sharp decreases in previous years. In Sept 2020:
·
41% of transfer plans (compared to 64% in Sept
2016) were agreed with the person
·
36% (vs 60% in Sept 2016) were agreed with the
person’s family/carer
·
40% (vs 65% in Sept 2016) were agreed with the
person’s advocate
·
48% (vs 82% in Sept 2016) were agreed with the
provider clinical team
·
44% (vs 67% in Sept 2016) were agreed with the
local community support team
·
47% (vs 80% in Sept 2016) were agreed with
commissioners
Chart 5: Percentage of transfer plans agreed with other
people and agencies (AT dataset)
Restrictive interventions
Statistics on restrictive interventions (including various
types of physical, chemical and mechanical restraint, as well as segregation
and seclusion) used on people with learning disabilities and autistic people in
inpatient units are provided monthly in the MHSDS dataset. How inpatient
services responded to COVID-19 during this time period is an important contextual
factor when interpreting these statistics.
Chart 6 below shows the total number of restrictive
interventions, and the total number of people subject to restrictive
interventions, reported in the MHSDS from January 2020 to January 2021.
Although there are apparent large fluctuations from month to month, the figures
from January 2021 are similar to those for January 2020, with 420 people during
the month of January 2021 subject to at least one restrictive intervention and
a total of 3,970 restrictive interventions reported.
Chart 6: Total number of restrictive interventions and number of people in inpatient units subject to restrictive interventions (Jan 2020 – Jan 2021): MHSDS
Chart 7 below takes into the account the number of people in
inpatient units at the end of each month, showing that in January 2021 13.1% of
all autistic people and people with learning disabilities in inpatient units
were subject to some form of restrictive intervention in the month (up from
11.5% in January 2020). This chart also shows that in January 2021 each person
experiencing restrictive interventions was being subjected to an average 9.5
restrictive interventions per person (up from 8.8 in January 2020), almost one
every three days. Again there are large fluctuations recorded from month to
month.
In terms of specific types of
restrictive intervention, in January 2021 a very wide range of restrictive
interventions were being reported in the MHSDS as being used in inpatient
units, including:
·
Chemical
restraints, most commonly oral medications (used 405 times on 80 people) and
rapid tranquilising injections (used 280 times on 65 people)
·
Mechanical
restraints (used 40 times on 20 people)
·
Seclusion (used
340 times on 165 people)
·
Segregation (used
15 times on 10 people)
·
Eight different
types of physical restraint, most commonly
o Supine restraint (used 620 times on 145 people)
o Seated restraint (used 540 times on 120 people)
o Standing restraint (used 480 times on 160 people)
o Restrictive escort (used 335 times on 85 people)
o Prone restraint (used 255 times on 85 people)
o ‘Other’ types of physical restraint (used 615 times on
120 people)
To understand the monthly
fluctuations in the figures for restrictive interventions a little better,
Chart 8 below shows the percentage of people in inpatient services subject to
restrictive interventions broken down by NHS vs independent sector inpatient
services. Chart 8 shows that figures for NHS inpatient services show some
fluctuations over time but a general increasing trend over time.
Figures for independent
sector services show extreme fluctuations up to August 2020, followed by
consistent low levels of restrictive interventions since. This can be accounted
for by variations in the completeness of reporting within the MHSDS of
restrictive intervention data from independent sector services. In January
2021, only one independent sector organisation out of 17 in the MHSDS (St
Andrews) recorded restrictive interventions at a level (5 or more restrictive
interventions due to the data rounding rules discussed earlier) recorded at all
in the MHSDS. For example Cygnet (365 people with learning disabilities and
autistic people in inpatient units according to the MHSDS) and Elysium (480
people) both effectively recorded no restrictive interventions in January 2021.
Chart 8: Percentage of people in inpatient units subject to
restrictive interventions by provider type (Jan 2020 – Jan 2021): MHSDS
Length of stay in inpatient services
The final chart below, Chart
9, shows AT data on the average length of stay of autistic people and people
with learning disabilities in inpatient services over time. Chart 9 shows that
the average length of stay for people in their current inpatient unit was 2.7
years in September 2020, barely changed from 2.9 years in September 2016. The
average continuous length of stay of people in inpatient units (including
transfers between inpatient units) was 5.7 years in September 2020, again
little changed from 5.4 years in September 2016.
Chart 9: Average length of
stay for people in inpatient units (AT dataset)
Some observations on data
This written evidence
presents an overview of selected statistical indicators concerning autistic
people and people with learning disabilities in inpatient services in England.
I hope this will be useful to the Committee in its Inquiry. As will be obvious
to the Committee, issues involved in the interpretation of the available data
can be complex. I would like to offer a small number of observations on these
data which are urgent if policies such as Transforming Care and Building The
Right Support are to be subject to robust evaluation and scrutiny.
1) The retrospective reporting of data for the AT
dataset, and how inpatient services have been operating throughout the COVID-19
pandemic, mean that assertions of continuing reductions in the number of people
in inpatient services may have been overstated.
2) The continuing lack of completeness in reporting to
the MHSDS, particularly by independent sector organisations recording
restrictive interventions, is an urgent concern as restrictive intervention
statistics will be under-estimates which make it almost impossible to evaluate
policy progress.
3) The MHSDS records much larger numbers of people in
inpatient services, across a much wider range of inpatient services, than the
AT dataset typically used by NHS England/Improvement in reporting progress. The
lack of reconciliation of these two datasets is a longstanding issue, as noted
by the National Audit Office in 2017[2]:
“NHS England does not
consider the current data it uses to monitor the programme [the
Assuring Transformation dataset] to be a
long-term solution and is planning for it to be incorporated into a newer, data
set which monitors people using mental health services. This newer data set
began reporting the number of people in mental health hospitals with a learning
disability in May 2016. It reports a much higher number of people compared
with the programme data set (3,805 people in November 2016 compared with 2,540
people in the programme data set at the same time). NHS England considers this
newer data set to be less robust, less mature and needing development and so
does not use it to monitor the programme. Our 2015 report highlighted the
unsatisfactory situation of having two different unreconciled data sets, where
one data set reported that there were 2,577 people in mental health
hospitals whereas another data set reported 3,250. We are disappointed to find
this problem again.”
4) For important data, particularly the deaths of
autistic people and people with learning disabilities in inpatient services,
raw data from the AT and MHSDS datasets should be aggregated over longer
periods of time to enable the number of people with learning disabilities who
have died to become visible.
5) The data provided publicly are a series of snapshots –
supplementing these with data that track people over time would be really
helpful in understanding issues such as the extent of ‘revolving door’ usage of
inpatient services.
6) The scale and detail of data on people in inpatient
services is not matched by data on the community support recommended in
Building The Right Support, such as the number and composition of community
teams and the number of people using them. These data are vital if the positive
ambitions of Building The Right Support are to be subject to evaluation and
scrutiny.
7) Routinely recorded statistics do not currently capture
anything about the experiences of people in inpatient services or of those
close to them. There are challenges in collecting this type of information
routinely and reliably and in sharing summary information publicly, but again
it is essential to understanding the progress of Transforming Care/Building The
Right Support.
[1] https://digital.nhs.uk/data-and-information/publications/statistical/learning-disability-services-statistics
[2]
National Audit Office. Local support for
people with a learning disability. London: National Audit Office. Published
3rd March 2017. Available online at https://www.nao.org.uk/wp-content/uploads/2017/03/Local-support-for-people-with-a-learning-disability.pdf
