Winterbourne View 12 years on - 2023. Report card 4: leaving inpatient units

This blogpost is the final one of four looking at the Transforming Care programme through the prism of the national statistics regularly produced by NHS Digital/NHS England, updating a series of blogposts I last updated in 2022.

The first blogpost looked at statistics on the number of people being admitted to inpatient services, and where they were being admitted from.

The second blogpost looked at how far people were from home and how long they were staying in inpatient services.

The third blogpost looked at planning and reviews for people within inpatient services.

This final blogpost will focus on the number of people leaving inpatient services (charmingly called ‘discharge’) and what is happening leading up to people leaving. Getting people out of inpatient units has arguably been the major focus of activities under the Transforming Care/Building The Right Support banner. Again, at this point the impact of these programmes should be visible in the number of people getting ready to leave, how well people’s plans to do so are developing, and how many people are actually leaving to places outside inpatient services.

The first and most obvious question is whether people in inpatient services have a planned date to leave. The graph below shows the proportion of people in inpatient services with a planned date for transfer, from March 2015 to March 2023 (according to Assuring Transformation data). There have been some fluctuations over time but there is an overall trend of things improving up to March 2019, and things worsening from then to March 2023 where the figures look in some ways slightly worse than in March 2015. In March 2023 there was no planned transfer date for 57% of people in inpatient units, compared to 50% of people in March 2015. In March 2023, 18% had a planned transfer date within 6 months, although for 10% of people their planned transfer was overdue.

In addition to planned transfer dates, do we know anything about the plans themselves?

Well, if people are leaving the inpatient unit to go home in some sense then my expectation would be that the person’s local council should be aware of the plan to leave. The graph below shows information from Assuring Transformation based just on those people with a plan to leave – for this group of people, are councils aware of the plan? Over time, the proportion of people with a plan that their council is aware of dropped substantially from 2015 to 2019, although this has improved again up to March 2023. Despite this recent improvement, by March 2023 the proportion of planned transfers where the council was aware (63%) was still lower than it was in March 2015 (69%). Of concern is that in March 2023 for 22% of people with a planned transfer it wasn’t known whether the council was aware of the plan or not, an improvement from 2019 but still worse than in March 2015 (7%). At the very least this suggests that the close working between health and social care envisaged as central to Transforming Care/Building The Right Support is less than universal.

  

There are other signs too of haste in planning for people to leave. The Assuring Transformation statistics report whether a range of people (the person themselves, a family member/carer, an advocate, the provider clinical team, the local community support team, and the commissioners) have agreed the plan to leave. For those people with a plan to leave, the graph below reports the proportion of their plans that have been agreed by different people, from March 2016 to March 2023. Over time, the proportion of plans agreed by anyone and everyone potentially involved has plummeted. Only 27% of plans had been agreed by the person themselves in March 2023, compared to over two thirds of people (69%) in March 2016. Similar drops are reported for the proportion of family/carers (from 60% to 23%) and advocates (from 64% to 26%) agreeing the plans.

By March 2023, transfer plans had been agreed by a minority of provider clinical teams where the person was supposed to be moving to (from 83% in March 2016 to 31% in March 2023), a minority of local community support teams in the area the person was supposed to be moving to (from 69% to 28%) and a minority of those commissioners who are reporting the information the graph is based on! (from 83% to 31%). To what extent are these actually feasible and sustainable plans that will result in a better life at home for people in inpatient services, and what are their chances of breaking down?

The final graph in this blogpost series is one of the most important – how many people have actually been transferred from inpatient services, and where have they gone? The graph below adds up monthly ‘discharges’ from inpatient services in the Assuring Transformation dataset in six yearly blocks, from October 2015 through to September 2022. It’s also one of the most complicated graphs in this series, so I’ll go through it in a bit of detail.

The first thing to say is that overall the number of people ‘discharged’ from inpatient services increased from 2015/16 (2045 people) to 2017/18 (2,265 people), but has since decreased to 1,710 people in 2021/22 (although the COVID-19 pandemic undoubtedly had an impact on the number of people leaving inpatient units, this presumably isn't a continuing issue into 2022?).

Of the people who have been ‘discharged’, in 2021/22 almost one third of people (525 people; 31%) moved to independent living or supported housing. Another third of people (540 people; 32%) moved to their family home with support, making almost two thirds of everyone ‘discharged’ from inpatient services (63%). This is a big increase from the 41% of people 'discharged' to these living circumstances in 2015/16.

Where did everyone else go? For almost two fifths of people in 2021/22 (305 people; 18%) their ‘discharge’ was actually a transfer to another inpatient unit, confirming the picture of ‘churn’ of people passed around inpatient services found elsewhere in this series. Around one in six people (270 people; 16%) moved into residential care. Given that some inpatient services have re-registered themselves as residential care homes with the CQC and a panoply of 'step-down' and other services are registered as care homes, it is unclear to what extent people are leaving an inpatient service to move somewhere more local and homely, moving somewhere very similar to where they were, or not actually moving at all.

In 2021/22, there were also another 165 people (10%) who moved to an ‘other’ location – again it is unclear what these ‘other’ places are, but are they wildly different from where people were moving from?.

Overall, there are signs of some changes over time in where people are being ‘discharged’ to. Fewer 'discharges' are to other hospital inpatient units and residential care, and more 'discharges' are to people's families with support.

So in this final post in the series, there are definite signs that Transforming Care/Building The Right Support has not continued to support the 'discharge' of more people out of inpatient services, although almost two thirds of those people who are leaving are now moving to independent or supported living or back to the family home. There are real worries about the feasibility and sustainability of some of these plans, and the extent to which many people ‘leaving’ inpatient services are actually leaving for something radically different or being churned around a system that doesn’t call itself an inpatient service system but looks mighty similar to the people living within it. The fact that for around one in six people being 'discharged', they are actually being moved to another inpatient unit, is to my mind something of an indictment of the inpatient service 'system' and Transforming Care's lack of fundamental impact upon it.

None of these past four blogposts gets to the heart of what this failure has done to countless people and those close to them since the BBC Winterbourne View programme was aired (and in the years and decades before then). Surely the government must see that, after 12 years, something radically different is required?

Winterbourne View 12 years on - 2023. Report card 3: Planning within inpatient units

This blogpost is the third of four looking at the Transforming Care/Building The Right Support programme through the prism of the national statistics regularly produced by NHS Digital/NHS England, and updating a series of blogposts I last updated in 2022 on the same issues.

The first blogpost looked at statistics on the number of people being admitted to inpatient services,  where they were being admitted from, and the legal status and ward security of people in inpatient units.

The second blogpost looked at how far people were from home and how long they were staying in inpatient services.

This blogpost will focus on what the statistics are telling us about planning within inpatient services, using statistics from Assuring Transformation. If Transforming Care/Building The Right Support has made progress, its effects should be felt through whether people’s needs are being regularly reviewed, and whether people are having regular, effective Care and Treatment Reviews (CTRs).

For everyone in inpatient services, reviews should happen regularly. The graph below shows how long ago people in inpatient services had had their last review, from March 2015 to March 2023. The graph generally shows that things seem to improve at times when there is more government/NHS England attention or pressure, but without that pressure reviews begin to drift again. By March 2023, half of people (49%) had had a review in the past 12 weeks, and almost a quarter (22%) between 12 weeks and 6 months ago. However, a further quarter (13%) last had a review between 6 months and a year ago, and another 11% had last had a review over a year ago. The figures for March 2023 are a big improvement on March 2022, but figures do fluctuate from year to year.

A particular form of review introduced by Transforming Care as a way to bring in independent voices to challenge inpatient services is the Care and Treatment Review (CTR), now extended to Care, Education and Treatment Reviews (C(E)TR) . The graph below reports the last time people in inpatient services had had a C(E)TR, from March 2017 to March 2023. The graph shows that the vast majority of people in inpatient services have had a C(E)TR at some point (90% of people in March 2023), and that this coverage has increased from 82% of people in March 2017. Perhaps one concern is that in March 2023 12% of people last had a C(E)TR more than a year ago, a proportion that has stayed fairly consistent over the last four years.

The graph below shows when people are next scheduled to have a C(E)TR. Again, there are improvements from March 2017 to March 2023, where the proportion of people with no scheduled future C(E)TR dropped from almost half (46%) to 8% of people. For a further 12% of people in March 2023 the date for their scheduled C(E)TR had passed without a C(E)TR happening.

Overall there are signs that more people in inpatient services are having both regular reviews and Care and Treatment Reviews, although reviews often drift back to lower levels outside times of particular pressure being applied. There are still large numbers of people in inpatient services who have not had any sort of review for a long time, however. Care and Treatment Reviews are being done, but what difference are they making?

Winterbourne View 12 years on - 2023. Report card 2: How far are people from home, for how long?

 This blogpost is the second of four, updating a series of blogposts on various aspects of Transforming Care/Building The Right Support I last updated in 2022. The first blogpost in this updated series looked at who was being admitted to inpatient units, where they were being admitted from, and the legal status and ward security of people in inpatient services. This second blogpost will focus on two aspects of what happens to people in inpatient services, how far people are from home and how long they are in inpatient services. They use information from the Assuring Transformation dataset, provided by NHS Digital/NHS England.

One of the main policies consistently trumpeted is having crisis and inpatient services close to home. The graph below reports information on the ‘distance from home’ of people in inpatient units, as reported in the Assuring Transformation dataset, from May 2017 to May 2023 (no data were published for May 2021). The graph firstly shows that the biggest change in how far people are from home, from May 2016 to May 2023, is the huge increase in the proportion of people whose distance from home is recorded as 'unknown' (from 15% of people in May 2017 to 28% of people in May 2023). This makes interpreting other apparent changes over time difficult, as we don't know how far these extra 'unknown' people are from home. By May 2023, a quarter (24%) of people were reported to be in inpatient units more than 50km from their home. 

How, many years on from the introduction of this dataset, information is not provided for almost a third of people on a supposed 'flagship' indicator, is beyond me.

Another important policy aim of Transforming Care/Building The Right Support is to reduce the length of time that people spend in inpatient units. The graph below shows how long people have been in their current inpatient unit according to Assuring Transformation statistics, from March 2015 through to March 2023. There are very gradual trends towards a greater proportion of people being in their current inpatient unit for shorter lengths of time up to March 2018, although the picture has been pretty static since then. In March 2023 13% of people had been in their current inpatient unit for 5 years or longer.

As I mentioned in the previous post, these is a lot of evidence that substantial numbers of people are moved around different inpatient services without ever leaving the inpatient service system. Assuring Transformation also reports information on how long people have been continuously within inpatient services (not just how long they have been in their current unit). The graph below shows this information from March 2015 to March 2023. The impact of people being transferred around can be clearly seen; in March 2023 over a third of people (33%) had been continuously in inpatient services for 5 years or longer, a proportion that has hardly changed from March 2015.

Finally, Assuring Transformation also reports the average length of time that people have been in their current inpatient unit, and continuously in inpatient services. The graph below shows that people were on average in their current inpatient unit for just under 3 years, with this length of stay hardly changing from March 2017 to March 2023. The total length of time people have been continuously in inpatient services showed a recent reduction from March 2022 to March 2023 but still stands at an average of well over 5 years, the same as in March 2015.

What does this mean? First, it’s obvious that inpatient services have not become radically more local as Transforming Care/Building The Right Support has ‘progressed’, with Assuring Transformation reporting that a quarter of people are more than 50km from home and this information simply not being reported for almost a third of people. The information on how long people are staying in inpatient units reflects the continuing ‘churn’ of people between inpatient units without seeing the outside world, with people still on average spending well over 5 years continuously in some form of inpatient unit.

Reducing distance from home and length of stay were both supposed to be central to Transforming Care/Building The Right Support – as far as I can tell, these have shown very little change since the data started being published.

Winterbourne View 12 Years On - 2023. Report card 1: People being admitted to inpatient units, legal status and ward security

It is now more than twelve years since the BBC aired its programme about the horrendous abuse meted out to people with learning disabilities and autistic people at Winterbourne View, a ‘specialist’ inpatient unit.

Has nothing really changed at all in this 12 years, with the panoply of policies, progress reports, rebranded initiatives when previous ones have not met their targets, meetings, deep dives, reviews, flow charts, workshops, more reviews, and days, weeks and years of people’s lives living in spaces beyond human rights and dignity (not to mention the amount of public money that must have been spent on officials to get a ‘grip’)?

There are many ways to try and answer this question. One thing I’ve been doing sporadically is to look at the official monthly statistics published by NHS Digital (now absorbed into the NHS England empire) about autistic people and people with learning disabilities in inpatient units, to see if they reveal any tangible evidence of change over time (or at least since 2015, when some of this information began to become available). The last time I went through a comprehensive ‘report card’ on inpatient units was in the summer of 2022, in a series of four blogposts (the link to the first one of these is here). I’m going to update this 'report card' in four similar blogposts.

I will not cover in detail the issue of the overall number of people in these inpatient units (I went through this record of failure against the succession of targets the government set for itself recently here. I want to look again at some of the other statistics that give us some clues about what has been happening with Transforming Care and its successors 12 years on from Winterbourne View.  

These blogposts will focus on information produced publicly by NHS Digital/NHS England from one of two datasets. It uses data from the Assuring Transformation dataset – for this dataset, health service commissioners provide information (sometimes retrospectively) on the number of people with learning disabilities and autistic people in specialist inpatient services and on various aspects of what is happening with or to people. I’ve collected some of the information into yearly blocks, and some of the information I report for every year rather than every month (both you and I would not survive that amount of information…). This means that most of the information goes up to March 2023. 

In this post I have not used information from the Mental Health Services Dataset (MHSDS), which reports information collected by mental health service providers concerning people identified by them as a person with learning disabilities or an autistic person – this has been published monthly starting more recently than the Assuring Transformation dataset and is less detailed about processes. In different ways both datasets are partial – Assuring Transformation does not include a lot of people in mainstream mental health inpatient units, and some big independent sector inpatient service organisations are not yet reporting aspects of their activity to the MHSDS. According to NHS Digital (now absorbed into the NHS England empire) provider organisations contributing information have been subject to a cyber-attack which means that data from the MHSDS has not been complete for almost a year.

As with the previous series, these four blogposts will focus on:

• Who is going into inpatient services?
• How far are people from home, and how long are people spending in inpatient services?
• What planning and review is happening in inpatient services?
• What is happening about people leaving inpatient services, and where are they going?

So – much of the focus of the various iterations of the Transforming Care programme and its rebranded successors has been on getting people out of inpatient units, but the slower than planned reduction in the overall number of people in these units suggests that there are still substantial numbers of people coming into these units. What do the statistics tell us about this?

Every month, the Assuring Transformation statistics report how many people have come into an inpatient unit (called ‘admissions’) according to commissioners. The graph below adds these together across seven different years (each one October to September), so we can see the number of people coming into these units and whether they have changed over time.

 

The first thing the graph shows us is, pre-COVID, the overall number of admissions to inpatient services was increasing, from 1,810 admissions in 2015/16 to 2,250 admissions in 2018/19. The total number of admissions dropped to 1,745 admissions in Oct 2019 - Sept 2020, when COVID-19 hit, increased in 2020/21 to 1,830 admissions, then dropped again in 2021/22 to 1,530 admissions. In total, there have been 13,170 admissions to these inpatient units in the last sseven years - we don't know how many of these are the same people being admitted more than once or different people being admitted.

The second thing to notice is that a large proportion of admissions (the red chunk) are actually transfers from other hospitals (mainly other inpatient services of various types), running consistently at 20% or more of all admissions. The third thing I want to mention is that more than one in six admissions (the lilac chunk) are re-admissions, where people had previously been in an inpatient service less than a year before. Finally, the purple chunk shows that getting on for two thirds of admissions to inpatient services (63% in 2021/22) are people who have not been in an inpatient unit for at least a year (or maybe never).

What kinds of places are people being admitted to inpatient services coming from? The graph below shows this information from the Assuring Transformation statistics, for five one-year blocks (starting in October 2016, through to September 2022).

In 2021/22, almost half of people (755 people; 49%) were admitted from their ‘usual place of residence’ and 43% of people (655 people) were admitted from other inpatient and/or hospital services. A further 75 people (5%) in 2021/22 were admitted from ‘penal establishments’ and 15 people (2%) were admitted from residential care services. In line with the overall decline in the number of admissions when comparing 2016/17 to 2021/22, the number of people being admitted from most types of place has also dropped. There are two exceptions: people being admitted from temporary places of residence (5 people in 2016/17; 20 people in 2021/22), and people being admitted from general hospitals/A&E wards (170 people in 2016/17; 295 people in 2021/22).

 

Overall, the number of people admitted to inpatient services have, with some fluctuations, been consistently lower since the COVID-19 pandemic started. However, there are signs that the promises of Building The Right Support in 2015 about effective community support for people have not been kept. The number of people being readmitted within a year of leaving hospital has hardly changed in six years, and the number of people being admitted from general hospitals/A&E wards in particular has risen sharply and stayed high. The AT dataset is also bad at recording people with learning disabilities and autistic people who are in general hospital mental health inpatient wards - the MHSDS is much better at including people in these circumstances but we don't have comprehensive national information from this dataset at the moment.

Have any changes in admissions resulted in changes to the legal status or the ward security of people with learning disabilities and autistic people in inpatient units? A persistent argument has been that people on MHA Part III sections (particularly those with legal restrictions) and people in higher security places are more likely to need to remain in inpatient services, so the number of people in these categories should not change much even if the number of people in inpatient units reduces overall. 

The graph below shows the number of people in inpatient units at the end of March each year from 2016 to 2023, broken down by the legal status of people in inpatient units according to Assuring Transformation data.

The most common legal status for people in inpatient units is a Part II section, where the number of people has dropped by 14% from 2016 to 1,135 people in March 2023. The next most common legal status is a Part III section with restrictions, where the number of people has dropped by 24% from 2016 to 545 people in March 2023. Less common are people with Part III sections without restrictions (which dropped by 46% from 2016 to 220 people in March 2023), people not subject to the Mental Health Act (which dropped by 38% from 2016 to 200 people in March 2023), and people in other sections (which dropped by 18% from 2016 to 45 people in March 2023). It is clear that reductions in the number of people in inpatient units have reduced for people with almost all types of legal status from 2016 to 2023.

The picture is similar when looking at ward security, as the graph below shows. The most common level of ward security is 'general', where the number of people in 'general' ward security dropped by 15% from 2016 to 1,145 people in March 2023. The next most common level of ward security is 'low secure', where the number of people dropped by 35% from 2016 to 550 people in March 2023. Together, people in 'general' and 'low secure' places were 79% of all people with learning disabilities and autistic people in inpatient units in March 2023. 

The number of people in medium secure inpatient units also dropped by 38% from 2016 to 320 people in March 2023, with smaller numbers of people recorded in high secure units (65 people) and Psychiatric Intensive Care Units (70 people - an increase of 56% from 2016).

Clearly, reducing the number of people in inpatient units does not need to exclude people on Part III sections or people on low or medium secure wards.

Since the start of the COVID-19 pandemic, it looks like consistently fewer people are being admitted to the kind of inpatient wards/units covered by AT, and that these reductions aren't confined to people with a particular legal status or wards with particular levels of security. There are real questions about the extent to which these figures suggest a lack of the kind of support outside hospitals that has been promised for over a decade. People are still being moved between inpatient units, and more people are coming into inpatient units from hospital A&E departments and temporary accommodation. We don't know whether more people with learning disabilities and autistic people are going in and out of general hospital mental health inpatients and what people's experiences are in these places. We also don't know how many people are getting any sort of support outside of hospital, and how good that support is. 

In the next blogpost I'll look at a couple of consequences of this - how far people from home are people being sent, and how long people are staying in these places.