Children and young people with learning disabilities and autistic children and young people in inpatient units - what do the statistics tell us?

This blogpost tries to summarise what information is available concerning children and young people with learning disabilities and autistic children and young people (in this blog, when I talk about ‘children and young people’, these are the groups of children and young people I’m referring to) in inpatient units in England, according to publicly available statistics from NHS Digital. By children and young people, I mean the age band of under 18 years old used in the datasets.

Most of the available information is from the Assuring Transformation dataset, which is recorded (sometimes retrospectively) by commissioners and reported monthly by NHS Digital. This dataset is the one that NHS England uses to assess how it is doing against the targets set in Transforming Care. Every month, the reference tables spreadsheet reports some information broken down by age band – although not everything is broken down by age band (it would take a quite monstrous excel file to do that) there are some things that have been reported consistently over time and some new information by age band that has been recently added.

The first question is how many children and young people are in inpatient units, according to the commissioners reporting to the Assuring Transformation dataset? The first graph below shows that, in absolute terms, the number of children and young people in inpatient units has increased from 170 children/young people in March 2016 (more reliably collected data than in March 2015) to 260 children/young people in December 2018, an increase of 53% over that time.

As the total number of people recorded by Assuring Transformation as being in inpatient units decreases, the percentage of the inpatient population who are children and young people is increasing rapidly. As of December 2018, 11% of all people with learning disabilities and autistic people in inpatient units are children and young people aged under 18, up from 7% in March 2016 (see the graph below).

Assuring Transformation records snapshots of the number of children/young people with learning disabilities and autistic children/young people at single points in time. For a number of reasons the issue is even bigger than the 260 children and young people recorded by Assuring Transformation. First, commissioners can report retrospectively to Assuring Transformation, so the number of children and young people recorded for December is likely to increase. Second, children and young people can go in and out of inpatient units, so the number of children and young people in an inpatient unit at some point over the course of a year will be bigger than a snapshot count of children at any one time (particularly as some young people reach the age of 18 and either remain in the inpatient unit or get transferred directly to a different inpatient unit). For example, the Mental Health Services Dataset (MHSDS), analysed monthly by NHS Digital from mental health service provider returns, reports that in the month of November 2018 alone 500 children and young people with learning disabilities and autistic children and young people spent some time (often a very short time) in some form of mental health inpatient unit. Third, children and young people can be in a range of residential services that feel and operate like inpatient units but are not registered or counted as such, such as certain types of residential special schools or ‘specialist’ residential homes.

The second question is what do we know about the children and young people in these inpatient units? Although information is limited, there is enough to show that they are quite different to people in other age bands, even 18-24 year olds. As the graphs below show, most children and young people in inpatient units are female (and increasingly so over time – 62% of children and young people in December 2018) whereas most 18-24 year olds (70%) are male. Most children and young people in inpatient units are labelled as ‘autism only’ (70% of children and young people in December 2018), whereas for 18-24 year olds the labels are more evenly distributed.

The legal status of children and young people is also different to people in other age bands, as the graph below shows. Over two fifths of children and young people have informal legal status (110 people; 42%) and almost everyone else (140 people; 54%) is on a Part II section. For 18-24 year olds, only 6% of people have informal legal status, with 68% on a Part II section and a further 24% on a Part III section.

There is a similar picture in terms of the level of security of the wards that children and young people are subject to, as the graph below shows. Most children and young people (175 people; 69%) are in wards with a general level of security, with most of the rest (50 people; 19%) in low secure wards. For 18-24 year olds, just over half of people are in wards with a general level of security (51%), with substantial numbers of people in low secure (24%) and medium secure (21%) wards.

What are the prospects for children and young people getting out of the inpatient unit they are in? Assuring Transformation records if a person has a planned transfer date of which the ‘home’ authority is aware – only 15% of children and young people (40 people) had such a planned transfer date, compared to 28% of 18-24 year olds and 30% of people of all ages in inpatient units. Similarly to people generally in inpatient units (61%), 63% of children and young people were reported to have their family involved in their care plan.

Finally, in a different dataset (the MHSDS) mental health service providers report the ‘restrictive interventions’ that people with learning disabilities and autistic people in inpatient units are subject to (a previous blogpost describes the dataset in more depth). The graph below shows the percentage of children/young people and the percentage of adults who experienced any restrictive intervention, and specific types of restrictive intervention, at some point in the month of November 2018.

As the graph shows, 12% of children and young people compared to 7% of adults experienced some form of restrictive intervention in November 2018. Children and young people were also more likely to experience almost every specific type of restrictive intervention than adults: physical prone restraint (5% vs 1%); physical restraint (not prone) (11% vs 5%); chemical restraint (4% vs 1%); and seclusion (6% vs 2%).

As well as reporting the number of people experiencing restrictive interventions, the MHSDS also reports the number of restrictive interventions people have experienced. From this we can calculate the average number of times during the month of November 2018 that people experienced a restrictive intervention. The graph below shows this for children and young people and adults.

As the graph shows, children and young people in inpatient units experienced restrictive interventions much more frequently than adults. For the 60 children and young people who experienced a restrictive intervention in November 2018, they experienced an average number of 18.2 restrictive interventions compared to 5.0 for adults. With the exception of mechanical restraint, children and young people, compared to adults, experienced more frequent restrictive interventions of all types: physical prone restraint (4.8 times per child/young person in November compared to 2.4 times per adult); physical restraint (not prone) (14.0 vs 4.4 times in the month); chemical restraint (5.0 vs 2.3 times in the month); mechanical restraint (0 vs 2.8 times in the month); and seclusion (2.8 vs 1.8 times in the month). So not only are children and young people more likely to be subject to restraint, if they are subject to restraint they are subject to that restraint more frequently than adults.

Overall, although public information is limited, the picture is looking bleak for children and young people with learning disabilities and autistic children and young people when it comes to inpatient services. It seems obvious that the group of children and young people in inpatient services are in some respects different from adults, being mostly girls and young women and mostly autistic children and young people. Children and young people are more likely to be in inpatient units with an informal legal status, and to be in general or low secure inpatient wards, but are much less likely to have a planned transfer date out of the unit they are in. Within inpatient units, children and young people are almost twice as likely to experience restraint compared to adults in inpatient units, at more than three times the frequency (on average, more than four times every week for those experiencing restrictive interventions). With child and family poverty increasing, education and support for disabled children at the lowest of ebbs, and legislation routinely ignored by authorities there to ‘help’, this is an issue way beyond Transforming Care.