One more heave? Autistic people, people with learning disabilities and inpatient units (again)

As report after report documents the experiences of autistic people and people with learning disabilities in ‘specialist’ inpatient units across various parts of the UK, the policy response in England has gone down the route of a ‘taskforce’ for children and young people, and all adults having their ‘care’ reviewed in the next 12 months, with both of these processes overseen by independent chairs. As has been widely pointed out, the focus of both these initiatives on case reviews as a mechanism for getting people out of inpatient units is not new – various iterations of government and NHS England policies such as Transforming Care have had exactly the same focus for at least 8 years.

We also know that NHS England have already gone through at least one major push to move people out of inpatient units, in the lead-up to the ‘end’ of a/the Transforming Care programme in March 2019. In this blogpost I want to go through some of the statistics collected by NHS Digital to see what we can learn from this previous major push by NHS England – what happened, and what might the consequences be?

To begin with, let’s look at the overall numbers of autistic people and people with learning disabilities in specialist units over time. The graph below is taken directly from the report using Assuring Transformation data (collected from commissioners, which they can update retrospectively, and on a relatively restricted set of ‘specialist’ inpatient services compared to another dataset, the MHSDS) up to December 2019.

In this graph, the grey line shows the number of people who commissioners reported straight away were in inpatient units. This shows a very gradual decrease over time, with no apparent acceleration towards the ‘end’ of Transforming Care in March 2019. The blue line adds in people who commissioners reported were in inpatient units retrospectively (so someone in an inpatient unit in March 2019 might only be reported to NHS Digital in June 2019, bumping up the numbers for March 2019 later on). In the left-hand side of the graph, where enough time has passed for commissioners to hopefully report everyone, there is a consistent gap between the grey line and blue lines. Towards the extreme right-hand end of the graph it looks like there is an accelerating decrease in numbers, but I think that is because commissioners haven’t yet reported everyone they’re going to find retrospectively, so the number of people in the blue line for recent months will increase as more people are found/reported by commissioners.

What might we see if there was a concerted push to get people out of inpatient units? To start with, people in inpatient units should be having regular reviews (remember, this is the mechanism in the new announcements that is supposed to trigger people leaving inpatient units). The graph below shows the time since people’s last review for people in inpatient units, from March 2015 to September 2019. There is some evidence of a push on reviews in March 2019 (the end of Transforming Care), with more people having more recent reviews, but by September 2019 it looks like the time since last review is drifting back to its usual level.  

You can also see in the graph below that, over time, steadily more people in inpatient units have been the subject of Care and Treatment Reviews (CTRs), introduced to try and bring both commissioner and independent voices into the decision-making process about people leaving inpatient units, although again there be evidence of a slight drift backwards after March 2019.

 Are these reviews having an impact on people getting a planned date for transferring out of the inpatient unit they are in (bearing in mind that a transfer may be to another inpatient unit, which I’ll come to later). The graph below shows that after a real dip in 2016, over half of people in inpatient units had a planned transfer date, although that has again dipped back to under half in September 2019, six months after the end of Transforming Care.

If someone does have a planned date for a transfer out of an inpatient unit, how soon are they expected to move? The graph below shows the time to the planned transfer for people in inpatient units. I think there is real evidence here of a push towards shorter times to planned transfers in the two years before the end of Transforming Care in March 2019, although again there has been a drift backwards since. It’s also worth noting that this push seemed to have little impact on the proportion of people whose planned transfer was overdue  - this has stayed pretty steady over time.

So far we’ve evidence of a push happening towards the end of Transforming Care in terms of more recent reviews and CTRs and more people with shorter times to planned transfers, although some drift backwards once the foot was taken off the pedal. What do we know about how good the planning was for these planned transfers and whether they are likely to be successful? One thing we can look at is whether councils are aware of the person’s planned transfer. The graph below shows that over time fewer and fewer councils (less than half by September 2018) were aware of the person’s planned transfer, and also that by September 2019 commissioners didn’t even know if councils were aware or not for over 40% of people with a planned transfer.

Another marker of the quality of a transfer plan in the statistics is the range of people who have agreed a person’s transfer plan. As the graph below shows, over time the proportion of transfer plans that have been agreed by the person themselves, by a family member or carer, by an advocate, by the service provider’s clinical team, or by the service commissioner (!) has plummeted over time (with a particularly steep drop from September 2018 to March 2019).

So there was a push in terms of reviews and planned transfers, but some suggestion that these pushed transfer plans might be cutting corners. What was the impact of this push on the number of people actually moving out of inpatient units, and where were people going? The graph below shows the destinations of people transferred from an inpatient unit, in blocks of a year from October 2015 to September 2019. In terms of overall numbers the picture is positive, with more people year-on-year moving to community settings, particularly the family home ("with support", although many families report not getting the support they need). Overall, fewer people (although still 20% of all people transferred in 2018-19) were being ‘transferred’ directly to another inpatient unit or hospital.

If there are more people being transferred out of inpatient units, why are the overall numbers of people in inpatient units not changing very much? The graph below provides much of the answer – over time more and more autistic people and people with learning disabilities are going into inpatient units. Almost a quarter of these ‘admissions’ (22.4% in 2018-19) are actually people being moved directly from another inpatient unit or hospital. More than 1 in 10 (10.9% in 2018-19) people going into an inpatient unit had come out of one less than a year before, although the number of people being re-admitted is reducing over time. For two-thirds of people coming into an inpatient unit (66.7% in 2018-19) it is likely to be their first time.

Two final questions. First, did this push have any impact on the length of time people spend in inpatient units? The graph below shows the average length of time people have spent in their current inpatient unit, and also the average length of time people had spent continuously in some form of inpatient unit (including being transferred directly from one to another). As the graph shows, while the average amount of time people have spent in their current inpatient unit has dropped slightly (to 2 years 6 months in September 2019) the average amount of time people have spent continuously in inpatient units has not changed at all (5 years 5 months in September 2019), as a result of people being moved around the inpatient system. In September 2019, 12% of people had been in their current inpatient unit for 5 years or more and 36% of people had been continuously in inpatient units for 5 years or more.

The final question is whether this push had an impact on the number of people in inpatient units who, according to their care plans, didn’t need to be there? The short answer, according to the graph below, is no. For around four years, around 30% of people in inpatient units (28% in September 2019) are recorded in their care plans as not needing inpatient care, with the number of people experiencing delayed transfers of care slightly drifting upwards over time.

So what do I think are the lessons we can learn from the kind of ‘push’ that has already happened at least once, towards the end of Transforming Care in March 2019, and that policy announcements say are going to happen again?

1) Such a push can have an impact on reviews being done, and notional transfers being planned, although the system drifts back to its usual ways of working once the foot is taken off the pedal.

2) Such a push might cut corners when it comes to planning and organising sustainable transfers out of inpatient units that will result in people being well supported and moving towards a fulfilling life.

3) Such a push appears to have no impact on the number of people being moved around the inpatient service system, the lengths of time people are staying in inpatient services, or the number of people in inpatient services who according to their care plans don’t need to be there.

4) Such a push does result in more people moving out of inpatient units, although the sustainability of their living situations once out is unclear and a substantial proportion of people are being readmitted to inpatient units within a year of leaving.

5) Such a push has no impact on what appears to be increasing numbers of people being admitted to inpatient units, and little impact on the number of people in inpatient units as a whole.

Based on this evidence, the new initiatives announced in late 2019 are unlikely to have the transformative effect claimed for them.