New evidence of ethnic inequalities in healthcare among people with learning disabilities - the Health and Care of People with Learning Disabilities dataset 2022/23

As the LeDeR report continues its yearly documenting of the shocking/not shocking health inequalities experienced by people with learning disabilities in England compared to other people, over the course of this year we've seen some attention beginning to be paid to some jaw-dropping health inequalities within the population of people with learning disabilities. In particular, a major review commissioned by the NHS Race and Health Observatory , 'We Deserve Better', has magnified continuing LeDeR reports of grim health inequalities according to the ethnicity of people with learning disabilities. Most stark was the information on median ages of death from any cause - while this was bad enough for white people with learning disabilities (62 years). it was even worse for people with learning disabilities from 'other' ethnic groups (49 years), people from Black, Black British, Caribbean or African ethnic groups (40 years), people from Asian or Asian British ethnic groups (33 years) and people from 'mixed/multiple' ethnic groups (30 years).

Yesterday (7th December 2023) NHS Digital/NHS England published the latest yearly information from over half of GP practices in England about the health of people with learning disabilities, relating to 2022/23. 'The Health and Care of People with Learning Disabilities' is a brilliant source of information that deserves to be much more widely known and I hope is being widely used at both national and local levels. This year for the first time this dataset includes some limited information on ethnicity. While there will hopefully be more information to come in future years, it does provide some information that has been weirdly absent so far.

First, it provides information on the ethnicity of people registered with their GP as a person with learning disabilities, compared to people not registered as a person with learning disabilities (because the dataset is geographically patchy, this is probably the fairest comparison rather than national Census 2021 data). The recording of ethnicity in GP records is better for people with learning disabilities than other people, with ethnicity not recorded for 2.9% of people with learning disabilities compared to 6.3% of people without learning disabilities, and 4.4% of people with learning disabilities compared to 6.5% of people without learning disabilities choosing not to have ethnicity information on their GP record.

Of those people where there was ethnicity information:

• 79.9% of people with learning disabilities compared to 74.8% of people without learning disabilities were from a white ethnic group
• 9.8% of people with learning disabilities compared to 13.4% of people without learning disabilities were from an Asian/Asian British ethnic group
• 5.7% of people with learning disabilities compared to 5.5% of people without learning disabilities were from a Black/African/Caribbean/Black British ethnic group
• 2.9% of people with and without learning disabilities were from a 'mixed/multiple' ethnic group
• 1.7% of people with learning disabilities and 3.5% of people without learning disabilities were from an 'other' ethnic group

These are very broad ethnic categories putting very different communities together, and information from schools which uses more specific ethnic categories (and breaks down information according to whether children have been given labels of Moderate Learning Difficulty, Severe Learning Difficulty or Profound Multiple Learning Difficulty) shows that these specificities really matter (a summary table is available in Appendix 2b of the 'We Deserve Better' report).  But just as we know that the deaths of people with learning disabilities from white ethnic backgrounds are disproportionately likely to be notified to the LeDeR programme, it's highly likely that people with learning disabilities from some communities are less likely to be recorded as such in GP registers. It's also important to say that the 'We Deserve Better' report found that much of the ethnicity coding in GP registers was outdated and unclear, so the accuracy of the findings reported here could be improved.

As well as this, the 'Health and Care' dataset includes information on the percentages of people with learning disabilities getting annual health checks and having a flu vaccine, broken down by these broad ethnic categories.

For annual health checks, overall in 2022/23 71% of people with learning disabilities were recorded by GPs to have had an annual health check in 2022/23. This conceals substantial differences between ethnic groups, where the figures were:

• 74% of people with learning disabilities from a white ethnic group
• 68% of people with learning disabilities from a Black/African/Caribbean/Black British ethnic group
• 68% of people with learning disabilities from an Asian/Asian British ethnic group
• 64% of people with learning disabilities from a 'mixed/multiple' ethnic group
• 62% of people with learning disabilities from an 'other' ethnic group

Worryingly, there were particularly low rates of annual health checks among people with learning disabilities where ethnicity data were missing (48%) or the person had chosen not to have ethnicity information recorded (57%), perhaps showing a certain degree of disengagement on the part of GP practices.

For flu vaccines the differences are even bigger. Overall in 2022/23 56% of people with learning disabilities were recorded by GPs to have had a flu vaccine in 2022/23. This conceals big differences between ethnic groups, where the figures were:

• 61% of people with learning disabilities from a white ethnic group
• 46% of people with learning disabilities from an Asian/Asian British ethnic group
• 41% of people with learning disabilities from a 'mixed/multiple' ethnic group
• 38% of people with learning disabilities from an 'other' ethnic group
• 35% of people with learning disabilities from a Black/African/Caribbean/Black British ethnic group

Worryingly, there were also low rates of flu vaccines among people with learning disabilities where ethnicity data were missing (41%) or the person had chosen not to have ethnicity information recorded (47%).

These ethnic inequalities in rates of flu vaccination for people with learning disabilities mirror the most recent information we have (mid-2022) about COVID-19 vaccinations (see this blogpost for details, using information from OpenSafely). This reported that among 16-64 year-olds with learning disabilities who weren't judged to be 'Clinically Extremely Vulnerable', 73% of people in a white ethnic group had received 3 doses of the COVID-19 vaccine, compared to 53% of people in an 'other' ethnic group, 50% of people in a 'mixed/multiple' ethnic group, 47% of people in a South Asian ethnic group, and 40% of people in a Black ethnic group.

This is one small corner of all the health information that could be broken down according to ethnicity, but it clearly shows big ethnic inequalities in getting something basic (like an annual health check, or a flu vaccine) that everybody with learning disabilities is entitled to. And these vaccines make a big difference. The 'We Deserve Better' report reported that before the COVID-19 pandemic, flu/pneumonia was the most common cause of death among people with learning disabilities from Asian/Asian British groups (17%) and from 'other' ethnic groups (16%), and the second most common cause of death for people from Black/Black British/Caribbean/African ethnic groups (16%) and from white ethnic groups (14%). During the COVID-19 pandemic, COVID-19 was by far the most common cause of death for people with learning disabilities across all ethnic groups, although there were big differences in the percentages of people within each ethnic group who had died from COVID-19:

• 60% of people with learning disabilities from a 'mixed/multiple' ethnic group
• 38% of people with learning disabilities from a Black/African/Caribbean/Black British ethnic group
• 31% of people with learning disabilities from an Asian/Asian British ethnic group
• 29% of people with learning disabilities from an 'other' ethnic group
• 26% of people with learning disabilities from a white ethnic group

The 'We Deserve Better' report documents the huge range of causes of the extreme ethnic inequalities in health amongst people with learning disabilities and provides clear recommendations for what needs to be done. This new information from the 'Health and Care' dataset, although limited, clearly points to a practical agenda for action on the part of health services in terms of proactively focusing on ethnic inequalities in people getting vaccines. Without action, data is nothing. But without data, action is clueless.

What do the latest statistics say about social care and adults with learning disabilities? 8 key messages (and 0 graphs)

Every year NHS Digital (now absorbed into NHS England) publish statistics collected by councils related to social care and adults with learning disabilities in England. Data tables for 2022-2023 were released on 19th October. Rather than inflict my usual graphalanche, here are 8 things that jumped out at me:

1) Since 2019/20 the number of adults with learning disabilities getting social care support has stalled. In 2022/23, 152,175 adults with learning disabilities got social care support at some point in the year, less than the 153,145 people getting social care support in 2019/20. 

2) Using projections about the increasing number of adults likely to need social care support from 2014/15 to 2022/23, there are between 14,000 and 22,000 adults with learning disabilities who need social care support but are not getting it.

3) While the number of adults with learning disabilities aged 18-64 living in residential care and nursing care continues to decrease, the number of adults with learning disabilities aged 65+ living in residential care and nursing care has been increasing from 2020/21 to 2022/23.

4) 49,145 adults with learning disabilities aged 18-64 getting social care support were living with family (or friends) on a settled basis in 2022/23 - well over a third (37%) of all working age adults with learning disabilities getting social care support.

5) Council spending on social care for adults with learning disabilities was £6.3 billion in 2022/23, which might be keeping pace with or even outstripping inflation.

6) Council spending on social care for adults with learning disabilities is almost one third (32%) of all council social care spending.

7) For the first time in 2022/23, over half a billion pounds in social care spending (£513 million) for adults with learning disabilities was paid for by 'client contributions'. This is 8% of all council social care spending for adults with learning disabilities.

8) Among working age adults with learning disabilities getting council social care, the rate of people in any form of paid employment remained at 4.8% in 2022/23, a historic low, with the gender employment gap also remaining (5.2% for men; 4% for women).

There is much more in the statistics (and I have updated my graph stash), but I see no signs of 'recovery' or 'building back better' here. 

Statutory homelessness statistics and people with learning disabilities 2023 - getting even worse

This short blogpost updates a post from just over a year ago, using the latest statistics on statutory homelessness in England, as they relate to households with a person with learning disabilities living within them. As far as I can tell (and others are better placed than me to know about this) we know relatively little about homelessness among people with learning disabilities in the UK, although it looks like people with learning disabilities (often unrecognised) are more likely to experience homelessness.

To quote this typically lucid report from the House of Commons Library on statutory homelessness in England, "Local authorities have a statutory duty to secure accommodation for unintentionally homeless households who fall into a 'priority need' category. There is no duty to secure accommodation for all homeless people". 

There are a range of statistics presented in the live tables, one of which presents information on the number of households owed a homelessness duty broken down by whether anyone in the household has a list of particular support needs, which includes 'Learning disabilities'. Because of changes to the law in 2018, statistics are available for each quarter (three months) from April 2018 through to March 2023.

The graph below shows the number of households with a person with learning disabilities who were owed a homelessness duty in each quarter year. There are some fluctuations, but overall the number of households has rapidly increased. In Quarter 2 of 2018 (April-June) there were 2,670 households with a person with learning disabilities owed a homelessness duty - by the first quarter of 2023 (January-March) this had increased to 4,700 households, an increase of 76% in less than five years.

How big a proportion of households owed a homelessness duty are households with a person with learning disabilities? The graph below shows trends in two percentages over time. 

The first (the blue line) is the percentage of all households owed a homelessness duty by a local authority that are households with a person with learning disabilities. This shows that households with a person with learning disabilities represented 4.3% of all households owed a homelessness duty in Quarter 2 of 2018, increasing to 5.9% of all households in Quarter 1 2023.

The second, orange, line is the percentage of households with an identified support need owed a homelessness duty that are households with a person with learning disabilities. [Not all households owed a homelessness duty officially have a support need]. This shows that households with a person with learning disabilities represented 9.3% of households with a person with support needs owed a homelessness duty in Quarter 2 2018, increasing to 11.0% of these households in Quarter 1 2023.

This is not an area I know about at all well, so there may be horrible errors of interpretation here. And these statistics will clearly miss out a lot of people with learning disabilities who are homeless, for a variety of reasons. But to me these look like highly worrying statistics which are getting worse quickly, for which there is virtually no policy attention or action.

Update: David Abbott has alerted me to an excellent research project with autistic people who experience homelessness completed by his colleague, Beth Stone - I've linked to a blog describing the project, which also has links to more in-depth descriptions of the research.

Update 2: David's sent me this link to a must-read, authoritative report by Beth Stone and Emily Wertans for the Centre for Homelessness Impact on Homelessness and disability in the UK - published in May 2023. In fact - read this instead of my blogpost!

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.

Disability benefits, people with learning disabilities and autistic people - 2023 update

This is a quick blogpost about disability benefit statistics, people with learning disabilities and autistic people, updating one from early 2021, with figures mainly up to November 2022. All these figures are obtained from the excellent DWP Stat-Xplore online tool. I’m going to talk about three disability benefits here:

1) Disability Living Allowance. The Disability Living Allowance (DLA) is a tax-free benefit for disabled people who need help with mobility or care costs. Disability Living Allowance (except for those born before 9 April 1948 and those aged under 16 at the time of application) is being replaced by Personal Independence Payments. The DLA consists of two components which are assessed and paid separately, a Care Award (paid at higher, middle and lower rates) and a Mobility Award (paid at higher and lower rates).

The Department for Work and Pensions (DWP) provides quarterly information on Disability Living Allowance (DLA), that can be disaggregated for adults with ‘learning difficulties’ in England. The DWP definition of ‘learning difficulties’ includes ‘learning difficulties’’ (an old generic code still used for pre-2008 cases before more detailed sub-categories were introduced), ‘Down’s syndrome’, ‘Fragile X syndrome’, ‘learning disability – Other/type not known’, ‘Autism’, ‘Asperger syndrome’, and ‘Retts disorder’². This definition is much broader than other government departments’ definitions of the population of people with learning disabilities.

2) Attendance Allowance (AA), which is paid to disabled people over the age of 65 to help with personal care. This can be paid at two rates to reflect the level of care required, and in the statistics uses the same broad definition of ‘learning difficulties’ as the DLA statistics.

3) Personal Independence Payment (PIP); a benefit for adults with sickness and/or disability replacing the DLA, but with some important differences. Information on the PIP is available on a monthly basis for adults with learning disabilities, under the category ‘Main Disabling Condition/Psychiatric Disorders/Learning Disability Global’, and for autistic people under the label ‘Main Disabling Condition/Psychiatric Disorders/Autistic Spectrum Disorders’.

In this blogpost I’m trying to get a sense of how many people with learning disabilities and autistic people (I’m assuming that the broader category of ‘learning difficulties’ is mainly these two groups of people) have been getting some form of disability benefit over time. To help with this, I’ve looked at four broad age groups: children and young people (age 0-15 for DLA); younger working age adults (age 16-44 for DLA and PIP); older working age adults (age 45-64 for DLA and PIP); and older adults (age 65+ for DLA, PIP and AA). The graphs include people getting payment for the benefit concerned, and are either people with ‘learning difficulties’ (DLA and AA) or, separately, people with learning disabilities and autistic people (PIP).

What do we find? The first graph shows how many children and young people with ‘learning difficulties’ received DLA (the only one of these three benefits where children and young people are eligible), from May 2012 to November 2022. The graph shows a steady increase in the number of children and young people with ‘learning difficulties’ getting DLA, with if anything a faster rate of increase in recent years, up to 267,436 people in November.

The next graph below shows information for younger working age adults (aged 16 to 44), from May 2012 to November 2022, and includes both the DLA and the introduction of the PIP. As more and more people transferred from DLA to PIP there was a rapid decrease in the number of younger working age adults with ‘learning difficulties’ getting the DLA up to May 2020, after which numbers have stayed fairly stable. There have been similar rises over time in the number of people with learning disabilities and autistic people getting a PIP, although May 2020 increases for people with learning disabilities have been smaller than for autistic people. The grey line in this graph shows the combined total of people getting one of these disability benefits. This shows some fluctuations over time, with year-on-year increases punctuated by a dip in 2016, no real change from 2018 to 2020, and a steady increase from 2020. By November 2022 258,777 younger working age adults with learning difficulties, learning disabilities, or autistic younger working age adults, were getting either DLA or PIP.

The third graph, below, has the same information for older working age adults with learning difficulties aged 45-64 (note that the vertical scale for this graph is different to the previous ones, as the overall numbers are smaller). This graph also shows a rapid decrease in the number of people getting DLA from 2012 to 2020, and staying fairly stable since. There was a sharp rise in the number of people with learning disabilities getting PIP up to 2020 but numbers have stayed fairly stable since, with relatively few but gradually increasing numbers of autistic people getting PIP. The combined total for this age group shows a much slower rate of increase for people getting either disability benefit, with fluctuations but no clear trend over time from 2018 onwards. By November 2022 61,327 older working age adults with learning difficulties, learning disabilities, or autistic older working age adults, were getting either DLA or PIP.

The final graph (again with a different vertical scale as the number of people is much smaller) has information on the number of older people with ‘learning difficulties’ (DLA, AA) or older people with learning disabilities or autistic people (PIP) getting one of these disability benefits. The number of older adults with learning difficulties getting AA is relatively small and has gradually declined from 2012 to 2022. As with older working age adults, sharp decreases in the number of older people getting DLA is accompanied by a sharp increase in the number of older adults with learning disabilities getting PIP but relatively few older autistic adults getting PIP. Overall, the number of older adults with learning difficulties, learning disabilities or autistic older adults getting one of these disability benefits has steadily increased from 2012 to 2022, but the rate of increase has slowed over time. By November 2022 20,269 older adults with learning difficulties, learning disabilities, or autistic older adults, were getting either DLA, AA or PIP.

Overall, the number of children and young people with 'learning difficulties' and the number of younger working age adults (particularly autistic adults, but also to a lesser extent younger adults with learning disabilities) getting disability benefits has continued to increase over time, even (after a blip) with the introduction of PIP. This is in contrast to older working age adults, when there have been no real increases in the number of people getting disability benefits for some years. For older people aged 65+, there was a very gradual but steady increase in the numbers of older people with learning disabilities and autistic people getting some form of disability benefit. For me, a few questions come out of this.

For the younger age groups, most of the increase in the number of people getting disability benefits may be largely being driven by an increase in the number of autistic people getting a disability benefit, which is not happening in the older age groups - is this perhaps a function of diagnostic services prioritising children and young people? 

Where people with learning disabilities are identifiable (all the adult age groups), from May 2020 onwards there has been little or no increase in the number of people with learning disabilities getting a disability benefit, which is particularly pronounced in the older working age adult group (45-64 years). Is this some combination of a continuing tightening of eligibility criteria for adults with learning disabilities, combined with the impact of the COVID-19 pandemic on the lives and deaths of middle-aged and older people with learning disabilities where 55-64 years was the peak age of death for people with learning disabilities?

Finally, if the increases that are evident among young groups of people (particularly autistic people) are sustained, and move through into older age groups, what will this do to the already tightening eligibility criteria for any sort of support for people?

Children with learning disabilities in schools in England: 2023 update

 

The Department for Education has released its latest annual statistics concerning children and young people identified within the English education system as children/young people with learning disabilities, recorded in an annual census of schools that takes place in January each year.

 

In the Special Educational Needs (SEN) statistics there are a number of mutually exclusive categories of SEN, three of which concern children with learning disabilities – Moderate Learning Difficulties (MLD), Severe Learning Difficulties (SLD) and Profound & Multiple Learning Difficulties (PMLD). There are a number of other SEN categories recorded within these statistics (Specific Learning Difficulties; Speech, language and communication needs; Social, emotional and mental health; Autistic spectrum disorder; Visual impairment; Hearing impairment; Multisensory impairment; Physical disability).

Within the annual census, a child can be classified as having a ‘primary need’ in one of these categories, and optionally classified as having an additional, ‘secondary need’ in another category. Most importantly in terms of how children are supported, children may have a special educational need that has been judged to require specific support in the form of an SEN statement (historically) or now an Education, Health and Care (EHC) plan. Beyond that, DfE statistics now only report an additional much larger number of children at a level of ‘SEN support’, which has no requirements to specifically support a child.

This blogpost simply updates a post I did last year on Department for Education (DfE) statistics, and goes through what some of these statistics say about the education of children and young people with learning disabilities, as identified within the education system. For a brilliant analysis of what these statistics say and what they mean for children with SEND generally, I highly recommend the Special Needs Jungle analysis, and I would urge you to read it.

The first question is simply – how many children and young people with learning disabilities are recorded in DfE statistics?

The first graph below shows the number of children with a statement/EHC plan with a ‘primary SEN need’ of MLD, SLD and PMLD, from 2010 to 2023 (apologies for the acronyms).

The graph shows that in 2023, over 74,000 children in England had a statement/EHC plan and were identified as children with learning disabilities. For children with MLD this was 32,898 children in 2023, with a large decrease of 31% from 2010 to 2018 but an increase of 16% from 2018 to 2023.

In 2023, there were 31,322 children with a statement/EHC plan and identified with a primary need of SLD, an increase in numbers of 24% from 2010 to 2021 but no increase from 2021 to 2023. Finally, in 2023 there were 10,120 children with a statement/EHC plan and identified with a primary need of PMLD, an increase of 16% from 2010 to 2018 but with fluctuating numbers since.

 

The second graph below shows the number of children with a ‘primary SEN need’ of MLD, SLD and PMLD at the level of SEN Support, from 2015 to 2023 (the reporting of statistics changed in 2015).

The graph shows that in 2023, over 190,000 children in England were identified as children with learning disabilities at the level of SEN Support. For children with MLD this was 189,375 children in 2023, with a large increase from 2015 to 2016 and a decrease from 2016 onwards.

In 2023, there were 2,277 children with a primary need of SLD at the level of SEN Support, with numbers fairly steady until 2020 but decreasing after then. Finally, in 2023 there were 824 children at the level of SEN Support with a primary need of PMLD, again with a recent decrease.

How many children with learning disabilities are being educated in mainstream schools or special schools? The graph below shows the number of children with a statement/EHC plan and primary needs of MLD, SLD and PMLD being educated in mainstream schools and special schools in England, from 2010 through to 2023. These figures don’t include potentially substantial but often not really known numbers of children not in school (including those being educated at home), or in places like residential special schools or specialist inpatient units.

The graph has quite a lot of stuff in it, so let’s take it bit by bit. The lilac lines are for children with MLD in mainstream schools (diamonds) and special schools (circles). As we know from earlier on the number of children with statements/EHC plans associated with MLD decreased from 2010 to 2018 but increased from 2018 to 2023. This graph shows that the number of children with a statement/EHC plan and a primary need of MLD in special schools declined steadily from 2010 to 2023; the number of children in mainstream schools declined rapidly from 2010 to 2017 but has been rapidly increasing since then.

For children with statements/EHC plans associated with SLD (the blue lines), the number of children with SLD in mainstream schools slightly decreased, with fluctuations, from 2010 to 2023, while the number of children with SLD in special schools rapidly increased up to 2022 but decreased slightly in 2023.

For children with a statement/EHC plan associated with PMLD (the purple lines), the numbers of children with PMLD in both mainstream and special schools has very gradually increased from 2010 to 2018 but has fluctuated since.

Another way of looking at this is to look at the percentage of children in mainstream vs special schools. The graph below shows this from 2010 to 2023 for children with a statement/EHC plan. As the graph shows, the percentage of children with a primary need of MLD and a statement/EHC plan in mainstream school dipped from just over 50% in 2010 to 43% in 2017, with the percentage returning to above 50% from 2021 onwards. For children with a statement/EHC plan and a primary need of SLD, the percentage of children in mainstream schools decreased from 17% in 2010 to less than 12% from 2018 onwards. For children with a statement/EHC plan and a primary need of PMLD, the percentage of children in mainstream school has remained fairly consistent around 14%-16%.

For children identified at the level of SEN Support (I haven’t included a graph on this), in 2023 almost all the children with a primary need of MLD (99.97%) and the vast majority of children with a primary need of SLD (92.3%) or PMLD (85.3%) were in mainstream schools.

Although it’s not an ideal marker of the financial circumstances of families, eligibility for free school meals is collected within DfE statistics. The graph below shows the proportion of children with statements/EHCPs associated with MLD, SLD and PMLD eligible for free school meals compared to the proportion of all children eligible for free school meals in 2023. For all children on the school roll, 23.8% of children in 2023 were eligible for free school meals. For children with a PMLD label the proportion of children eligible for free school meals is higher (36.2% for children with a statement/EHC plan), then higher again for children with an SLD label (43.5% for children with a statement/EHC plan), and highest for children with an MLD label (46.9% for children with a statement/EHC plan). It is worth mentioning that the proportion of children in all groups eligible for free school meals has increased in recent years.

A brief summary of the main points:

•  While the number of children identified as having special educational needs associated with severe learning difficulties or profound and multiple learning difficulties and needing statements or EHC plans have changed gradually over time, the number of children identified as having a special educational need associated with moderate learning difficulties has been plummeting but for the last five years has increased rapidly.
• There are slightly different trends for different groups of children with learning disabilities in terms of the proportion of children in mainstream vs special schools, but some earlier trends towards special education seem to be starting to reverse for children with MLD in the last few years. Less than 20% of children with an EHCP/statement and a label of SLD or PMLD are being educated in mainstream schools.
• Children with learning disabilities are much more likely to be eligible for free school meals than children generally.