The LeDeR report for 2019: a warning from (recent) history for the COVID-19 era

Summary

In this blogpost I look at what the most recent LeDeR report tells us about the deaths of people with learning disabilities before the COVID-19 pandemic, and what we can learn to support people as the pandemic continues.

Here is the list of suggested actions coming out of the blogpost:

We need a much better way of tracking infection rates as well as deaths amongst people with learning disabilities and those supporting them, and universal testing.

Flu vaccinations (for people with learning disabilities and those people supporting them) are crucial, including clear messages throughout health services that people are eligible for free vaccinations, pro-active strategies for making sure people are offered them in ways that people are likely to accept, and support for people to have them. In 2018/19 only 44% of eligible people with learning disabilities in England had a flu jab, virtually the same percentage as in 2017/18.

Annual health checks for people with learning disabilities need to take place urgently, and need to include a specific section on priorities for keeping people safe during the potential second spike. This should include urgent medication reviews. In 2018/19 only 56.1 of eligible people with learning disabilities had an annual check, a slight increase from 55.1% of people in 2017/18 but far short of the 75% target set by NHSEI (and way short of the 100% people that is presumably the ultimate aim?).

NHS to identify and prioritise as a COVID-19 priority those health services that are particularly important to preserve the health of people with learning disabilities through any second spike.

Triaging for intensive care treatment for COVID-19 on the basis of ‘frailty’ should be scrapped.

In advance of a second COVID-19 peak, it should be an urgent priority to go through proper consultation processes with people and those supporting them to reach individual decisions on DNACPRs.

Rigorous medication reviews are urgent.

Supporting the health of people with learning disabilities who are part of BAME groups needs to be a particular priority.

Supporting the health of people with profound and multiple learning disabilities needs to be a particular priority.

People with epilepsy, dysphagia, constipation and GORD need to be considered as being at potentially greater risk, and urgent measures to support people with these conditions is needed.

All these measures should not be targeted at older people with learning disabilities but are equally important for people at all ages.

As many people as possible need to leave inpatient services now, even if for medium-term creative alternatives that put people at a lower risk of COVID-19 infection.

All these measures should be part of a national management and operational plan set up now and operating through the course of the pandemic, with substantial direction from people with learning disabilities and those supporting them (see this example from Australia for people with disability).

What this blogpost is about

In this blogpost I want to talk about the most recent report from the LeDeR programme, a voluntary programme for the notification and review of the deaths of people with learning disabilities. The report has been published in July 2020, but is called the 2019 report because it provides information up to the end of 2019. I have written about previous LeDeR reports here and here, and about the Government response to a LeDeR report two years ago here. To be honest the overall picture has remained depressingly similar over time, although more detailed analysis is added to the reports every year as more information becomes available.

In this post I want to talk about what the information from this report, obviously about a pre-COVID-19 world, can tell us about preventing even more people with learning disabilities dying as the COVID-19 pandemic continues. We already know (largely thanks to LeDeR programme notification data, reluctantly released and skeletally analysed by NHS England/Improvement (NHSEI)) that people with learning disabilities in England have been dying in disproportionately large numbers in the first wave of COVID-19. While this may be abeyance at the time of writing (17^th July 2020), the need to do radically better, urgently, is acute well before winter comes.

Before going into what the LeDeR report shows, it’s important to realise there are three main sources of information used in the report.

1) Notifications. Anyone can notify a death of someone with learning disabilities in England to the LeDeR programme through an online form or ringing the LeDeR team (notifications are what are being reported weekly during the COVID-19 pandemic). The LeDeR programme has taken time to become national in its reach (and it’s important to remember that notifications are not mandatory), so 2019 is probably the first year to produce truly national figures for England. In 2019 notifications of deaths were made for 3,060 people in England, up from notifications of 2,720 people’s deaths in 2018 and notifications of 1,265 people’s deaths in 2017.

2) Reviews. The main purpose of the LeDeR programme is to co-ordinate, stimulate and collate information from reviews of all deaths of people with learning disabilities notified to LeDeR. These reviews are supposed to be done by local teams to embed learning from the reviews into local practice. If there are sufficient concerns identified locally about a person’s death, this can go forward for a full multi-agency review. Across the whole time the LeDeR programme has been operating only 45% of notified deaths have been reviewed. While the proportion of notified deaths being reviewed has increased over time, even in 2019 only just over two-thirds of notified deaths were reviewed (69.5% review rate in 2019, compared to 33.6% in 2018 and 9.1% in 2017), so reviews are still not keeping pace with notified deaths let alone catching up with the backlog.

3) For notified deaths, information on causes of death can be obtained from death certificates via the Office for National Statistics (ONS). The LeDeR programme has obtained these for the deaths of 84% of people since the programme started up to the end of 2019.

How many people are dying during the pandemic compared to before?

Bearing these different sources of information in mind, what can we learn from the LeDeR programme in 2019 to help understand what’s happening to people with learning disabilities during the pandemic? The first thing is that we now have information on how many people died in 2019 against which to compare how many people have died so far in 2020. The graph below sets this out, but it’s quite complicated so I’ll go through it. The columns show how many people’s deaths have been notified to the LeDeR programme so far in 2020. The red parts of the column are people who have been notified to LeDeR as dying of confirmed or suspected COVID-19, the blue parts of the column are people recorded as dying of a non-COVID-19 cause. The biggest column on the left is all deaths from 1^st January 2020 to 20^th March 2020 (around 11 weeks) – after that each column shows the number of people’s deaths each week up to the week ending 10^th July 2020.

The red columns show a sharp rise in the number of people with learning disabilities dying a COVID-19 related death up to a peak in early-mid April (the same time as the peak for people generally in England), and then a reduction to the point that for the past month fewer than 5 people per week have been notified to LeDeR as dying of COVID-19. The blue columns show that, at the same time as the COVID-19 peak, more people were also notified to LeDeR as dying of other causes – this has gradually reduced to around 35 people per week dying non-COVID-19 deaths in the past month.

How does this compare to the number of people with learning disabilities dying in 2019, before COVID-19? The very dark blue line on the graph shows the average number of people dying per week notified to LeDeR in 2019 – this was 3,060 people’s deaths, or 58.9 deaths of people with learning disabilities every week [this is close to the 54 people dying per week from 2016-2019 I shonkily calculated from other statistics in a previous blog, so there is some consistency there]. The LeDeR report shows there is some seasonal variation in how many people’s deaths were notified to them in 2019 (highest October – December) but the variation is not so extreme as to make a big difference to the figures for January – July.  The striking thing about this line for me is how many more people’s deaths were notified to LeDeR in the very early part of 2019 compared to the very early part of 2020 (before COVID-19 really hit the UK). At the peak of the pandemic, the number of non-COVID deaths notified to LeDeR was similar to the average weekly level for 2019 (and dropping to well below these levels by June), with additional COVID-19 deaths during the peak. I don’t know why this is, but it does suggest that before the COVID-19 pandemic really hit many fewer people’s deaths were being notified to the LeDeR programme than in 2019 – perhaps the NHS gearing up for COVID-19 (including the suspension of LeDeR reviews) was partly responsible? This means that the LeDeR figures for 2020 might seriously under-estimate the number of people with learning disabilities dying in 2020.

Finally, as the LeDeR report makes grimly clear, before the COVID-19 pandemic people with learning disabilities (as has been the case for a long time) were twice as likely to die deaths that were avoidable than the general population, with approaching half of people with learning disabilities (44% vs 22% for the general population) dying an avoidable death (avoidable deaths are the total of deaths that were preventable, treatable, or both). The final, dark green line on the graph shows how many people with learning disabilities in 2019 would have died if the level of avoidable deaths was the same as for the general population (using age-standardised mortality rates). Even before the pandemic, LeDeR reports that 19% of people with learning disabilities compared to 14% of the general population died in ways that were preventable (where better public health or ways to stop people becoming unhealthy in the first place, such as preventing obesity or smoking, would have prevented the person's death). Particularly grim was the finding that one-third of people with learning disabilities (34%) died in ways that were treatable (timely and effective healthcare, or effective interventions to reverse ill-health, would have prevented the person's death) compared to 8% of the general population.

Throughout the first wave of COVID-19, this already poor treatment on the part of health services is likely to have got worse for many people with learning disabilities, as intensive care services were prioritised partly by the withdrawal or reduction of health services of particular relevance to people with learning disabilities. This is likely to be placing people at greater risk of having a severe reaction to COVID-19. This includes postural care and wheelchair support services, annual health checks and a range of primary care services, and speech and language therapy (in this context, particularly important for people with dysphagia). In any preparation for a future COVID-19 spike, it is crucial now to identify and include as a COVID-19 priority those health services that are particularly helpful (in both the short and long term) in helping people with learning disabilities reduce their COVID-19 risk.

Who is dying?

One of my extreme frustrations throughout the COVID-19 pandemic has been the lack of published analysis of what puts people with learning disabilities at greater risk of dying from COVID-19, despite relevant information being present in the datasets being used. Public Health England are apparently due to publish a much more complete analysis of the figures relating to people with learning disabilities during COVID-19 by the end of July 2020.

The LeDeR report gives us a picture from before COVID-19 (2017-2019) of who amongst people with learning disabilities was at greater risk of dying.

Most obviously, on average people with learning disabilities died at much younger ages than the general population. The median age at death (the age at which half the group have died younger and half the group have died older) was 61 years for boys/men with learning disabilities in 2019 (vs 83 years in the general population), and 59 years for girls/women with learning disabilities (vs 86 years in the general population). The graph below shows the percentage of people with learning disabilities vs the general population who died by the age at which they died. As the graph shows, 85% of the general population die at the age of 65 years or older, compared to 37% of people with learning disabilities.

COVID-19 analysis so far has shown that older age is the biggest risk factor for dying from COVID-19; within the broad older age category, increasing age means increasing risk. Data from adults with learning disabilities and/or autistic people in particular types of registered social care, produced by the Care Quality Commission, reported that 47% of people who died between 10 April and 15 May 2019 were aged 65 years or older, compared to 44% of people who died of non-COVID causes in the same time period in 2020 and 45% of people who died of COVID-19 in the same time period in 2020 (the timeframe starts in the middle of the first COVID-19 peak). This suggests that, amongst people with learning disabilities, COVID-19 does not seem to be disproportionately affecting older people compared to other causes. This could be for any number of reasons:

1) fewer people with learning disabilities survive into older age, with those that do survive possibly healthier than people who die at younger ages (I would recommend this great report from the Greater Manchester Growing Older with Learning Disabilities project, published yesterday, to understand more about what older people with learning disabilities think about their lives).

2) people with learning disabilities are more likely to experience multiple health conditions that may put people at risk of a severe reaction to COVID-19 at a younger age than the general population.

In the general population, being part of a Black or Minority Ethnic (BAME) group has been associated with a higher risk of death from COVID-19. The LeDeR report shows that, even before the pandemic, people with learning disabilities from BAME communities (and particularly those people with profound and multiple learning disabilities) were more likely to die at much younger ages than White British people with mild/moderate learning disabilities. These inequalities pre-COVID are illustrated in the LeDeR by looking at median age of death. If you are a person with mild/moderate learning disabilities (to sue the report’s terminology), if you are White British your median age at death is 64 years compared to 54 years if you are part of a BAME group. If you are a person with severe or profound and multiple learning disabilities, if you are White British your median age at death is 57 years compared to only 31 years if you are part of a BAME group.

Given how COVID-19 has disproportionately affected people in BAME communities generally, it is possibly that COVID-19 might be worsening these already existing inequalities in the deaths of people with learning disabilities.

It is also clear that support for people with profound and multiple learning disabilities should be particularly important during any second COVID-19 spike.

Where do people die?

Again, there is an absence of information about where people with learning disabilities are dying during the COVID-19 pandemic, and where people were living before they died.

The LeDeR report states that, of those people’s deaths reviewed in 2019, 60% of people with learning disabilities died in hospital (compared to 46% of the general population. We don’t know how many people with learning disabilities who died of COVID-19 died in hospital compared to other places. A simplistic comparison of the number of confirmed COVID-19 deaths of people with learning disabilities and/or autistic people in hospital reported by NHS England (516 people to date) vs the number of COVID-19 deaths of people with learning disabilities in any location reported by the LeDeR programme in 2020 (640 people to date) would suggest that 81% of people with learning disabilities dying of COVID-19 died in hospital. This might be another reason to suspect under-reporting of deaths to the LeDeR programme in 2020 compared to 2019.

One specific issue is about people with learning disabilities and autistic people dying in inpatient units throughout the COVID-19 pandemic. The LeDeR report states that 9 people either in inpatient units or discharged from one less than 2 months previously had died in 2019 – the latest figures from the MHSDS report that 10 people with learning disabilities and/or autistic people had died in inpatient units in one month (April 2020, the peak of the pandemic).

Do not resuscitate orders (DNACPRs)

Leading up to and throughout the pandemic, the alarm has been raised about blanket DNACPRs being issues to people with learning disabilities, and people with learning disabilities having DNACPRs put on their medical notes during a hospital visit without due consultation and consideration. Even before the pandemic, the LeDeR report found that 16% of people with learning disabilities who had died in 2019 and had their death reviewed had a DNACPR decision that had not been appropriately completed with proper procedures followed.

What health conditions do people die of?

As a population, people with learning disabilities at younger ages are more likely than the general population to have a wide range of health conditions associated in the general population with a higher risk of a severe reaction to COVID-19, such as: chronic obstructive pulmonary disease, high blood pressure, chronic heart disease, heart failure, stroke, Type 1 and Type 2 diabetes and chronic kidney disease. People with learning disabilities are also more likely to be extremely overweight starting at younger ages than the general population. I went through the evidence in some detail in this blogpost in March so I won’t repeat it here.

What I want to highlight in this blogpost is what the LeDeR report shows about long-term health conditions commonly experienced by people with learning disabilities but not generally mentioned as risk factors for a severe reaction to COVID-19 in the general population, perhaps because some of them are relatively rare in the general population. In particular, pre-COVID-19 the LeDeR report found that, amongst those who had died, 36% of people had experienced epilepsy, 29% of people had experienced dysphagia, and 23% of people had experienced constipation. These three health conditions (along with Gastro-Intestinal Reflux Disorder, or GORD) are all likely to place people at greater risk of a severe reaction to COVID-19 and need particular attention.

Prescribed drugs

The LeDeR report pre-COVID-19 reports how common prescribed drugs were, and how many different drugs people were prescribed, amongst people whose deaths had been reviewed in 2019. Pretty much everyone who had died (97% of people) had been prescribed at least one drug, with 61% of people prescribed 5 or more different drugs (a common definition of ‘polypharmacy’), which is higher than the level of polypharmacy reported in research studies. For 12% of people, their combination of drugs could lead to potentially ‘severe’ drug-drug interactions affecting health and life, and for a further 14% of people their combination of drugs could lead to potentially ‘moderate’ drug-drug interactions causing pain and discomfort.

The most commonly prescribed drugs relate to health conditions relevant to COVID-19, as I’ve mentioned above.

Over 4 out of 10 people (42%) had been prescribed proton pump inhibitors, presumably for acid reflux. A third of people (33%) had been prescribed laxatives, even though they are not particularly effective. A fifth of people (20%) had been prescribed hypertensives and treatments for heart failure, and a fifth of people (20%) had been prescribed lipid regulating drugs.

Many people were prescribed ‘psychotropic’ drugs, affecting the brain, mood or behaviour. Over a third of people (37%) had been prescribed anti-epileptics, over a quarter of people (27%) had been prescribed anti-depressants and just under a quarter of people (23%) had been prescribed anti-psychotics.

Overall, this paints a really bleak picture for me. For some health conditions (like high blood pressure) it looks like many people with a health condition are not being prescribed drugs which could help. More commonly, it looks like people are being prescribed unnecessary drugs that are ineffective (like laxatives), have serious side effects (like antipsychotics), and would not be prescribed if people were supporting to live fulfilling lives. In a COVID-19 context, these drugs, individually and in combination, may be acting to increase the chances of a severe reaction to COVID-19. Medication reviews are needed urgently. And ideas for keeping people ‘safe’ should no be at the expense of supporting people to lead fulfilling lives, which is likely to be more protective than a whole heap of the medications people are currently prescribed.

What to do?

Looking at the LeDeR report for 2019 against what we know about COVID-19 so far, there are some obvious things that health services should be doing NOW to get better prepared for a second COVID-19 spike.

We need a much better way of tracking infection rates as well as deaths amongst people with learning disabilities and those supporting them, and universal testing.

Flu vaccinations (for people with learning disabilities and those people supporting them) are crucial, including clear messages throughout health services that people are eligible for free vaccinations, pro-active strategies for making sure people are offered them in ways that people are likely to accept, and support for people to have them. In 2018/19 only 44% of eligible people with learning disabilities in England had a flu jab, virtually the same percentage as in 2017/18.

Annual health checks for people with learning disabilities need to take place urgently, and need to include a specific section on priorities for keeping people safe during the potential second spike. This should include urgent medication reviews. In 2018/19 only 56.1 of eligible people with learning disabilities had an annual check, a slight increase from 55.1% of people in 2017/18 but far short of the 75% target set by NHSEI (and way short of the 100% people that is presumably the ultimate aim?).

NHS to identify and prioritise as a COVID-19 priority those health services that are particularly important to preserve the health of people with learning disabilities through any second spike.

Triaging for intensive care treatment for COVID-19 on the basis of ‘frailty’ should be scrapped.

In advance of a second COVID-19 spike, it should be an urgent priority to go through proper consultation processes with people and those supporting them to reach individual decisions on DNACPRs.

Rigorous medication reviews are urgent.

Supporting the health of people with learning disabilities who are part of BAME groups needs to be a particular priority.

Supporting the health of people with profound and multiple learning disabilities needs to be a particular priority.

People with epilepsy, dysphagia, constipation and GORD need to be considered as being at potentially greater risk, and urgent measures to support people with these conditions is needed.

All these measures should not be targeted at older people with learning disabilities but are equally important for people at all ages.

As many people as possible need to leave inpatient services now, even if for medium-term creative alternatives that put people at a lower risk of COVID-19 infection.

All these measures should be part of a national management and operational plan set up now and operating through the course of the pandemic, with substantial direction from people with learning disabilities and those supporting them (see this example from Australia for people with disability).

Children with learning disabilities in schools in England: trends over time

Summary

• ·        The number of children identified as having special educational needs associated with severe learning difficulties or profound and multiple learning difficulties and needing statements/EHC plans has been gradually increasing from 2010 to 2020.
• ·        The number of children identified as having a special educational need associated with moderate learning difficulties and needing statements/EHC plans has been plummeting but for the last couple of years has started to increase again.
• ·        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 in the last few years.
• ·        Children with learning disabilities are more likely to be eligible for free school meals than children generally.

  

This blogpost updates a blog I did a couple of years ago on Department for Education (DfE) 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. The annual census takes place in January each year (so 2020 figures are before the impact of COVID-19), with 2020 statistics recently published by DfE. 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 (magically) 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 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.

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 2020 (apologies for the acronyms – if using these is a deal breaker in terms of offensiveness do tell me and I won’t use them in future blogposts).

The graph shows that in 2020, just over 70,000 children in England had a statement/EHC plan and were identified as children with learning disabilities. For children with MLD this was 29,592 children in 2020, with a large decrease of 31% from 2010 to 2018 but a small increase of 4% from 2018 to 2020.

In 2020, there were 30,593 children with a statement/EHC plan and identified with a primary need of SLD, an increase in numbers of 21% from 2010 to 2020, which from 2017 onwards outstrips the number of children with a statement/EHC plan and MLD. Finally, in 2020 there were 10,003 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 2020 (the reporting of statistics changed in 2015).

The graph shows that in 2020, over 215,000 children in England were identified as children with learning disabilities at the level of SEN Support. For children with MLD this was 211,563 children in 2020, with a large increase from 2015 to 2016 and a decrease from 2016 onwards.

In 2020, there were 3,001 children with a primary need of SLD at the level of SEN Support, with numbers fairly steady over time. Finally, in 2020 there were 916 children at the level of SEN Support with a primary need of PMLD, again with very little change over time.

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 2020. These figures don’t include potentially substantial but often not really known numbers of children not in school at all (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 slightly from 2018 to 2020. This graph shows that the number of children with a statement/EHC plan and a primary of need of MLD in special schools declined gradually from 2010 to 2020; the number of children in mainstream schools declined rapidly from 2010 to 2017 but has started to increase again.

For children with statements/EHC plans associated with SLD (the blue lines), the number of children with SLD in mainstream schools slightly decreased from 2010 to 2020, while the number of children with SLD in special schools has rapidly increased.

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 2017.

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 2020 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 towards 50% in 2020. 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 12% in 2020. For children with a statement/EHC plan and a primary need of PMLD, the percentage of children in mainstream remained fairly consistent around 14%-15%.

For children identified at the level of SEN Support (I haven’t included a graph on this), in 2020 almost all the children with a primary need of MLD (99.7%) and the vast majority of children with a primary need of SLD (89.6%) or PMLD (80.5%) 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 and at the level of SEN Support associated with MLD, SLD and PMLD eligible for free school meals compared to the proportion of all children eligible for free school meals. For all children on the school roll, 17.7% of children in 2020 were eligible for free school meals. For children with a PMLD label the proportion of children eligible for free school meals is higher (29.9% for children with a statement/EHC plan; 22.2% for children at SEN Support), then higher again for children with an SLD label (37.8% for children with a statement/EHC plan; 33.8% for children at SEN Support), and highest for children with an MLD label (39.7% for children with a statement/EHC plan; 34.0% for children at SEN Support). It is worth mentioning that the proportion of children in all groups eligible for free school meals has increased in recent years.

I don’t really want to put a heavily opinionated commentary on this blogpost, so here’s a summary instead.

• ·        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 are gradually increasing, the number of children identified as having a special educational need associated with moderate learning difficulties has been plummeting but for the last couple of years has started to increase again.
• ·        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 in the last few years.
• ·        Children with learning disabilities are more likely to be eligible for free school meals than children generally.

Blogpost – What do the statistics tell us about what’s happening to people with learning disabilities and autistic people in inpatient units during COVID-19? Part 3: Restrictive interventions

Summary

The statistics on ‘restrictive interventions’ (restraints) seriously underestimate the true picture, because many independent sector inpatient services do not report into the MHSDS dataset where restraints are recorded.

From January to March 2020, the percentage of people with learning disabilities and/or autistic people in inpatient units who were subject to restraint increased as the overall number of people in inpatient units decreased. In January 2020, 11.3% of people in inpatient units were subject to some form of restraint, rising to 13.5% of people in March 2020.

Those people who did experience some form of restraint experienced restraint on average 9.6 times in January 2020 (almost once every 3 days), reducing to 7.8 restraints per person in March 2020.

People in NHS units and younger people were more likely to experience restraint. 

Physical restraints, particularly supine restraint, standing restraint and seated restraint, were the most commonly used types of restraint, with seclusion and rapid tranquilising injections also common. Around 100 people each month were subject to prone restraint.

As COVID-19 really hit in April 2020, with all the extra restrictions placed on people in inpatient units and no visitors allowed, it will be important to track what happens to people in terms of being restrained – especially as the percentage of people in inpatient units being restrained seems to be increasing.

 

 

 

This blogpost updates and adds more detail to a previous blogpost asking whether regular statistics could tell us anything useful about what was happening to people with learning disabilities and/or autistic people as the first wave of COVID-19 hit from March 2020 onwards. This is the third of three linked blogposts. Part 1 focused on what the statistics show about the number of people in inpatient units as the first peak of the COVID-19 pandemic hit. Part 2 focused on how many people were admitted to these units, how many people left these units, and how many people in these units died. Part 3 (this post) focuses on what the statistics say about restrictive interventions used on people in inpatient units leading up to the start of the pandemic.

In this blogpost, we only have information from NHS Digital from one database, the Mental Health Services Dataset (MHSDS), which is reported monthly from mental health service providers – this records all people flagged across all mental health inpatient services as a person with learning disabilities or an autistic person. This database takes longer to analyse, so information using the MHSDS is only available up until the end of March 2020.

As we have seen from the other two blogposts, the number of people in inpatient units, particularly young people not sectioned under the Mental Health Act typically admitted for short periods of time, had substantially decreased from January to March 2020. This was mainly happening in the wider range of NHS inpatient units rather than in ‘specialist’ independent sector inpatient services, where numbers seemed to be more stable. This decrease in numbers, by the end of March 2020, happened because of fewer people being admitted to inpatient units and more people being discharged from inpatient units. By March, the number of people dying in inpatient units had not increased to the point where the published statistics recognised them.

The question I want to ask in this blogpost is as follows: As the first peak of the COVID-19 pandemic started to hit in March 2020, how often were various types of ‘restrictive intervention’ (restraint)  reported, how many autistic people and/or people with learning disabilities were subject to them, and did any of this change over time?

Before going through yet more graphs, I first want to say that all the numbers I go through will severely underestimate the number of people with learning disabilities and/or autistic people subject to these restraints, and the number of restraints that people are subjected to. As I discuss in the 1^st blogpost in this trio, the MHSDS reports vastly higher numbers of autistic people and/or people with learning disabilities in inpatient units than the Assuring Transformation data preferred by NHS England/Improvement. However, many independent sector organisations recorded by Assuring Transformation as having people in inpatient units do not appear in the MHSDS dataset at all. The table below firstly lists independent sector organisations which recorded a total of 345 people in inpatient units in the Assuring Transformation dataset but no-one in the MHSDS (remember, only the MHSDS records restraints) at the end of March 2020. This includes two organisations (Partnerships in Care and the Priory Group) which were recording people in the MHSDS up until the end of January 2020 but then mysteriously stopped.

[I’ve also included in this table three big organisations (Cygnet, Elysium and St Andrew’s) who recorded 450 people with learning disabilities and/or autistic people in inpatient units in Assuring Transformation at the end of March 2020, but recorded 1,115 people in inpatient units in the MHSDS, just to show how severely Assuring Transformation under-records the number of autistic people and people with learning disabilities in inpatient units].

Number of people recorded as being in inpatient units at the end of March 2020	Assuring Transformation	MHSDS
Independent sector providers recording people in Assuring Transformation but not in the MHSDS
Bramley Health	10
CAS Behavioural Health Ltd	35
Cheswold Park Hospital	5
Lighthouse Healthcare Ltd	15
MHC (Health) Ltd	5
Partnerships in Care Ltd	95	[until January 2020, MHSDS recorded 200 people in Partnerships in Care inpatient units]
Priory Group Ltd	155	[until January 2020, MHSDS recorded 15 people in Priory Group inpatient units]
Raphael Healthcare Ltd	5
St George Healthcare Group	15
The Breightmet Centre for Autism	5
Independent sector providers recoding much larger numbers of people in the MHSDS than in Assuring Transformation
Cygnet Health Care Ltd	175	300
Elysium Healthcare	135	470
St Andrew’s Healthcare	140	245

The MHSDS has been reporting information on people with learning disabilities and/or autistic people in inpatient units for two years now – this should have been more than enough time to enforce reporting into it by all inpatient services, including those in the independent sector (why is reporting into the MHSDS not a condition written into contracts or CQC registration?).

Bearing this large gap in mind, what do the MHSDS statistics tell us about restrictive interventions in inpatient services from January to March 2020? The first graph shows the total number of restrictive interventions recorded in each month and the number of people in inpatient services subjected to these restrictive interventions, broken down by type of service.

The light red line shows that NHS inpatient services used restrictive interventions with autistic people and/or people with learning disabilities 2,935 times in January 2020, decreasing to 2,415 times in March 2020. In January 2020 (the dark red line), 260 people in NHS inpatient services experienced a restrictive intervention at least once, compared to 280 people in March 2020. Independent sector inpatient services (the purple lines) used restrictive interventions 945 times on 145 people in January 2020, compared to using them 840 times on 140 people in March 2020.

 

 

To find out a bit more what these numbers mean, we need to take into account that the number of people in inpatient units from January to March 2020 dropped quite a lot. The graph below shows two things. First, the solid lines show what percentage of autistic people and/or people with learning disabilities were subject to at least one restrictive intervention in each month (the solid light red line is for people in NHS inpatient units; the solid light purple line is for people in independent sector inpatient units). In January 2020, 11.7% of people in NHS inpatient units and 10.5% of people in independent sector inpatient units were subject to at least one restrictive intervention. By March 2020 this had increased to 14.4% of people in NHS units and 12% of people in independent sector units. There could be several reasons for this, including more restraints being used as lockdown restrictions began to tighten, or fewer people coming into inpatient units who wouldn’t typically be subject to restrictive interventions.

In the same graph, the broken lines show, for those subject to restrictive interventions, the average number of restrictive interventions that people were subject to. In NHS inpatient services (the dark red line), people were subject to an average 11.3 restrictive interventions per person in the month of January 2020 (just over 1 every 3 days), which reduced to 8.3 per person in March 2020. In independent sector inpatient units (the dark purple line), people were subject to an average 6.5 restrictive interventions per person in January (just over 1 every 5 days), which reduced to 6.0 per person in March.

 

  

Because young people in inpatient units have been more likely to be subject to more restrictive interventions in previous statistics, I also looked at restrictive interventions for the age bands under 18, 18-24, 25-34 and 35+ for January to March 2020. The first graph below shows the percentage of people in inpatient units subject to at least one restrictive intervention in each month January to March 2020. [The light orange line for people aged under 18 is invisible because it is almost identical to the line for people aged 25-34 years]. This shows that people aged 18-24 years were most likely to experience at least one restrictive intervention in each month, and that for all younger age groups (except people aged 35+) the percentage of people experiencing restrictive interventions increased from February to March 2020.

 

 

The next graph shows the average number of restrictive interventions that people were subject to, by age band. Overall, people aged under 18 and 18-24 were subject to more restrictive interventions than older age groups, with a general trend towards people experiencing fewer restrictive interventions from January to March 2020.

 

Finally, I looked at the specific types of restrictive intervention that people with learning disabilities and/or autistic people in inpatient units are subject to (or more correctly, are recorded by inpatient services as being subject to). The graph below shows the number of episodes of different types of physical restraint that people were subject to each month. The MHSDS reports a proliferating range of different types of physical restraint, which I find very depressing. The most commonly used form of physical restraint was ‘supine’ restraint (being restrained lying down but face up rather than face down as in prone restraint), which was used 1,110 times in January 2020, dropping to 850 times in March 2020. Prone restraint, which has been acknowledged to be particularly dangerous, was used 275 times in January, increasing to 290 times in March. Standing and seated restraint were also common. Restrictive escort was less common (but still used around 170 times per month), and side and kneeling restraint were relatively rare. Large numbers of physical restraints (525 in January through to 365 in March) were classified by services as ‘other’, which is a place my imagination does not want to go to.

 

 

The next graph below shows the number of autistic people and/or people with learning disabilities who were subject to these types of physical restraint in each month. Large numbers of people were subject to supine (165 people in January, 150 people in March), standing (160 people in January, 155 people in March), and ‘other’ physical restraint (150 people in January, 125 people in March). Substantial numbers of people were subject to seated (105 people in January, 95 people in March), prone (100 people in January, 90 people in March), and restricted escort (70 people in January and March) physical restraint.

 

 

In the MHSDS, inpatient services also record various types of chemical restraint, mechanical restraint, seclusion and segregation. As the graph below shows, these were generally used less frequently than physical restraint. The most common of these forms of restraint was seclusion (time-limited solitary confinement), which was used 290 times in January and 260 times in March. Injection with a rapid tranquiliser was recorded as being used 180 times in January and 130 times in March. Oral medication as a form of chemical restraint was used 100 times in January and 80 times in March, and mechanical restraint was used 70 times in January and 85 times in March. Seclusion (longer-term solitary confinement) was recorded as being used 20 times in January and 10 times in March.

 

The final graph below shows the number of people subject to these types of restrictive intervention. In January 2020, 135 people were subject to seclusion, compared to 130 people in March 2020; 75 people were subject to rapid tranquilising injection in January (70 people in March), 45 people subject to oral medication as a form of chemical restraint in January (50 people in March), and 35 people were subject to mechanical restraint in January (25 people in March).

 

 

Overall, because many independent sector independent sector services inexplicably don’t report to the MHSDS, these statistics seriously under-estimate the number of restrictive interventions that people with learning disabilities and/or autistic people in inpatient units experience. Published figures also do not report physical assaults and self-harm experienced by people in inpatient units. As inpatient units started to prepare for/adjust to COVID-19, the percentage of people in inpatient units subject to restraint increased as the overall number of people in inpatient units decreased. In January 2020, 11.3% of people in inpatient units were subject to some form of restraint, rising to 13.5% of people in March 2020. People in NHS units and younger people were more likely to experience restraint. However, those people experiencing restraints experienced a decreasing number of restraints from January to March 2020.

Physical restraints, particularly supine restraint, standing restraint and seated restraint, were the most commonly used types of restraint, with seclusion and rapid tranquilising injections also common. Around 100 people each month were subject to prone restraint.

As COVID-19 really hit in April 2020, with all the extra restrictions placed on people in inpatient units and no visitors allowed, it will be important to track what happens to people in terms of being restrained – especially as the percentage of people in inpatient units being restrained seems to be increasing.

 

 

Blogpost – What do the statistics tell us about what’s happening to people with learning disabilities and autistic people in inpatient units during COVID-19? Part 2: How many people were admitted to these units, how many people left these units, and how many people in these units died?

Summary

This blogpost is about how many autistic people and/or people with learning disabilities went into inpatient units (including ATUs), came out of inpatient units, or died during the COVID-19 pandemic.

The number of people going into inpatient units dropped every month, roughly halving  from January to May 2020.

According to the Assuring Transformation dataset, the number of people leaving inpatient units increased from January to March 2020, but then dropped sharply to May 2020.

This pattern of a rise and fall in the number of people leaving inpatient services was true for people leaving for independent living, supported housing and residential care. A gradual drop over time was seen for people leaving inpatient units for the family home with support, and for transfers to other inpatient units.

According to the MHSDS, the number of people going in and out of an inpatient service in the same calendar month dropped from January to March 2020, and the number of people leaving inpatient units who may have been there for longer increased from January to March 2020.

For the first time ever in a single month, the Assuring Transformation dataset reported that 5-7 people had died in inpatient units in April 2020 (the first peak of the pandemic). It is not clear if any of the people discharged to an ‘other discharge destination’ included anyone with COVID-19 symptoms moving to critical care.

 

 

This blogpost updates and adds more detail to a previous blogpost asking whether regular statistics could tell us anything useful about what was happening to people with learning disabilities and autistic people as the first wave of COVID-19 hit from March 2020 onwards. This is the second of three linked blogposts. Part 1 focused on what the statistics show about the number of people in inpatient units as the first peak of the COVID-19 pandemic hit. Part 2 (this post) will focus on how many people were admitted to these units, how many people left these units, and how many people in these units died. Part 3 will focus on what the statistics say about restrictive interventions used on people in inpatient units leading up to the start of the pandemic.

In this blogpost, we have information from NHS Digital from two databases. One of them is Assuring Transformation (AT), which is reported monthly from health service commissioners and concerns what NHS England/Improvement (I will use NHSEI from now on) consider to be the ‘core business’ of Transforming Care. At the time of writing, information is available up to the end of May 2020.

The second database is the Mental Health Services Dataset (MHSDS), which is reported monthly from mental health service providers – this records all people flagged across all mental health inpatient services as a person with learning disabilities or an autistic person. This database takes longer to analyse, so information using the MHSDS is only available up until the end of March 2020.

Information on admissions, ‘discharges’ and deaths of autistic people and/or people with learning disabilities is recorded and published slightly differently across the two datasets, so direct comparisons of the two (as I did in Part 1) are not possible.

The question I want to ask in this blogpost is as follows: As the first peak of the COVID-19 pandemic started to hit in March 2020, were there any changes to how many people with learning disabilities and/or autistic people were admitted to inpatient units, how many people left (were ‘discharged’ from) inpatient units, and how many people died in inpatient units? Part 1 of this blogpost trio showed that the number of people in inpatient units, particularly young people with no section under the Mental Health Act, dropped substantially as COVID-19 began to hit, particularly in the types of NHS inpatient services where people may be staying for short periods of time. How did this happen?

People going into inpatient units

Let’s start by looking at the number of people with learning disabilities and/or autistic people admitted to inpatient units.

The first graph below shows the number of admissions to inpatient units each month from January to May 2020, according to the Assuring Transformation dataset. Overall, this shows a steady and substantial decrease in the number of people being admitted to inpatient units, from 155 people in January to 80 people in May (a decrease of 48%). There were big drops in the numbers of people being admitted to an inpatient unit for the first time in at least a year (from 95 to 50 people), in people who were being re-admitted to an inpatient unit within a year of their last stay (from 25 to 15 people), and in people being transferred from one inpatient unit to another (from 40 to 15 people).

 

Information on admissions can also be broken down by where people were admitted from – this is in the graph below. This graph shows that there were big decreases across the board in terms of where people were being admitted from – from people’s usual place of residence (from 60 to 35 people), from ‘acute beds’ (from 45 to 20 people), and from ‘other hospital’ services (typically other inpatient units; from 25 to 10 people).

 

As outlined in Part 1 of this blogpost trio, the MHSDS records much larger numbers of autistic people and/or people with learning disabilities in inpatient units, partly because the MHSDS includes people in a wider range of NHS general mental health as well as ‘specialist’ mental health inpatient services who are often in these services for very short periods of time (including for the purposes of ‘respite’). 

The graph below shows the number of people admitted to inpatient units from January to March 2020 according to the MHSDS. The first thing to notice is that the number of admissions is huge (1,580 admissions in January 2020) compared to the Assuring Transformation dataset. The second thing is that, as in the Assuring Transformation dataset, the number of admissions drops substantially, from 1,580 at the end of January to 1,165 at the end of March (a drop of 26%). The third thing is that around two-thirds of admissions are for people who are in and out of an inpatient unit in the same calendar month, a very different picture to that given by Assuring Transformation. Finally, this drop is consistent across admissions where a person is in and out in the same calendar month (from 1,050 to 850 admissions), and admissions where a person is still in an inpatient unit at the end of a calendar month (from 530 to 315 admissions).

 

So far we have seen that the number of people with learning disabilities and/or autistic people being admitted to inpatient units dropped substantially as the COVID-19 pandemic began to hit, which might suggest inpatient units beginning to go into a form of lockdown and other parts of the NHS which normally refer people into inpatient units starting to become unavailable to people as the NHS COVID-19 response was prioritised at the expense of other NHS services.

People leaving inpatient units, and people dying

What do the statistics say about how many people have been ‘discharged’ from inpatient services in the first part of 2020? The graph below shows what Assuring Transformation records about the number of people ‘discharged’ from inpatient units from January to May 2020 and where people were ‘discharged’ to (‘discharge’ is in quotation marks because in this dataset it includes people transferred to another inpatient unit and, crassly, people who died in inpatient units).

Overall, the graph shows the number of people being ‘discharged’ rising to a peak in March 2020 (as the COVID-19 pandemic was really beginning to hit) but then decreasing sharply to May 2020, where the number of people being discharged was much lower than the number of people being discharged in January. In terms of the types of places where people were being ‘discharged’ to, the same pattern was seen for people being discharged to supported housing, independent living and residential care. The number of people being ‘discharged’ to other hospitals (typically other inpatient services) and people’s family homes with support stayed relatively stable and started to decrease by May 2020.

When considering how many people died in inpatient units during the COVID-19 pandemic, one thing to remember is how information is reported in these datasets. All numbers are rounded to the nearest five except when there are fewer than five people, in which case an asterisk is recorded. In every previous month that I have looked at the Assuring Transformation dataset, the number of people dying in an inpatient unit in any single month has been recorded as an asterisk (which means anything between 0 and 4 people). In April 2020 (the peak of the COVID-19 pandemic so far), for the first time this dataset recorded 5 people (so between 5 and 7 people due to the rounding) dying in inpatient units – this was not repeated in May 2020. Also worrying is the number of people ‘discharged’ to ‘another discharge destination’ – this went from 15 people in January 2020 up to 35 people in March 2020 and back down to 5 people in May 2020. It is not clear how many of these ‘discharges’ could be people with COVID-19 symptoms being moved to critical care hospital beds, where any deaths would not be recorded as people dying in the inpatient unit.

The final graph below is the ‘discharge’ information from the MHSDS. Information here is broken down into people ‘discharged’ in that month who were in an inpatient unit at the start of the month, and people ‘discharged’ within that  month who had been admitted after the start of the same calendar month. Again, the numbers here are much bigger than those reported in the Assuring Transformation dataset. Consistent with the picture on admissions, the number of people being admitted and ‘discharged’ in the same calendar month decreased from January to March 2020. Also consistent with the Assuring Transformation dataset, the number of people leaving inpatient units who may have been in inpatient units for slightly longer increased substantially from January to March 2020. According the MHSDS, the vast majority of people were ‘discharged to ‘the community’.

Despite the much higher numbers of ‘discharges’ recorded in the MHSDS, fewer than 5 people were recorded as having died in inpatient units in any single month from January to March 2020.

 

Conclusion

Overall, it looks like inpatient units (probably more focused on NHS inpatient units rather than the independent sector) were preparing to hunker down in the run-up to COVID-19 hitting in March 2020. The number of people being admitted to inpatient units dropped quite a lot (and continued to drop), and up to March 2020 more people were being discharged to ‘community’ settings (worryingly, including residential care homes). After March, though, the number of people being discharged from inpatient units has dropped to levels lower than in January 2020.

It is clear that more people were recorded as having died in inpatient units in April 2020 (the first peak of the pandemic) than at any time since this data started to be collected. What is not clear is how many people had COVID-19 and were moved to critical care units for the treatment of COVID-19, and would therefore not be counted in these statistics as a death. It also has to be remembered that, in their different ways, both datasets don’t count everyone with learning disabilities and/or autistic people in inpatient units; both these statistics are likely to underestimate the number of people who were in inpatient units when they contracted COVID-19 and died.

There was clearly some attempt amongst inpatient units to reduce the movement of people in and out, and to help some people move out before the first peak of the pandemic hit. Whether the much lower levels of people going into and out of inpatient units will continue, and whether we will ever know the true scale of how many people in inpatient units died COVID-19 related deaths during this period, is not clear.