Tuesday, 5 June 2018

Education statistics and children with 'autistic spectrum disorder'

This blogpost is a companion to a recent post I did on Departmentfor Education (DfE) statistics on children and young people identified withinthe English education system as children/young people with learning disabilities, recorded in an annual census of schools. This post reproduces some of the statistics I did for that post with a different group of children and young people; children and young people with a primary Special Educational Need of ‘Autistic spectrum disorder’ (this is the DfE descriptor rather than wording I would choose). As with the previous post, this post will mainly focus on children who have been judged to require specific support in the form of an SEN statement (historically) or now (magically) an Education, Health and Care (EHC) plan.

First question - how many children and young people with statements/EHC plans associated with a ‘primary need’ of ‘autistic spectrum disorder’ are recorded in DfE statistics? The first graph below shows the number of children with a ‘primary SEN need’ of ‘autistic spectrum disorder’, from 2010 to 2017.

The graph shows that in 2017, just over 60,000 children (60,832 children) in England (over a quarter (27%) of all children with statements or EHC plans) had a statement/EHC plan and were identified as children with ‘autistic spectrum disorder’. This is an increase of 55% in the number of children with a statement/EHC plan and a ‘primary need’ of ‘autistic spectrum disorder in the seven years from 2010, when 39,320 children were identified.

I also looked at how many of these children had a ‘secondary SEN need’ recorded in 2017 alongside their primary need.

For those with a statement/EHC plan and a primary need of ‘autistic spectrum disorder’, around two fifths (42%) had a secondary SEN identified, most commonly Speech, Language and Communication Needs (8,611 children; 14.2%), Severe Learning Difficulties (4,511 children; 7.4%), Social, Emotional and Mental Health (4,267 children; 7.0%), and Moderate Learning Difficulties (3,588 children; 5.9%). An additional 13,175 children had a secondary need of ‘autistic spectrum disorder’ identified alongside a different primary SEN, most commonly Severe Learning Difficulties (5,422 children), Moderate Learning Difficulties (2,150 children), Speech, Language and Communication Needs (1,991 children), and Social, Emotional and Mental Health (1,856 children).

Second question: At what ages are children/young people most likely to be identified by education systems as requiring a statement/EHC plan associated with ‘autistic spectrum disorder’? The graph below shows the rates (per 1,000 of all children) of children with statements/EHCPs and a ‘primary need’ of ‘autistic spectrum disorder’  at ages 5-15 years (when the information about children is likely to be more complete).

Identification rates seem to gradually increase through the early primary school years, with a bigger increase through the end of primary school into secondary school, then a slight reduction at age 15.



Third question: How many autistic children and young people are being educated in mainstream schools or special schools? The graph below shows the number of children with a statement/EHC plan and a ‘primary need’ of ‘autistic spectrum disorder’ being educated in mainstream schools and special schools in England, from 2010 through to 2017. These figures don’t include potentially substantial but often not really known numbers of children not in school at all (including those being home educated), or in places like residential special schools or specialist inpatient units.

For children with statements/EHC plans associated with ‘autistic spectrum disorder’, the number of children in mainstream schools has increased from 22,800 children in 2010 to 31,092 children in 2017, an increase of 36% in seven years. However, the number of children in special schools has increased from 16,520 children in 2010 to 29,740 children in 2017, a much faster rate of increase of 80% in seven years. The number of children with a statement/EHC plan associated with ‘autistic spectrum disorder’ in special schools in 2017 has almost caught up with the number of children in mainstream schools.



The next graph below puts this information together to show the proportion of children with a statement/EHC plan associated with ‘autistic spectrum disorder’ in mainstream schools from 2010 to 2017 – the percentage of children in mainstream schools has decreased from 58% in 2010 to 51% in 2017.



Fourth question – how many children with statements/EHCPs associated with ‘autistic spectrum disorder’ are eligible for free school meals? Autistic children were twice as likely (28%) than all children in schools (14%) to be eligible for free school meals.

Fifth question – how much school do children with statements/EHCPs associated with ‘autistic spectrum disorder’ miss, either through absences or exclusions?

DfE report statistics on the proportion of school half-day sessions missed through authorised and unauthorised absences from school. This is not just for children with a statement/EHC plan, but also includes children at the level of School Action Plus (a historic category somewhere between a statement and SEN Support). In 2016/17, children with a ‘primary need’ of ‘autistic spectrum disorder’ missed 5.0% of their school sessions (a half day every two weeks) due to authorised absences, compared to 3.4% of all children in school. Levels of unauthorised absences were similar for autistic children (1.5% of school sessions missed) compared to all children (1.3% of school sessions missed).

Finally, DfE statistics report the percentage of children who experienced fixed-term and permanent exclusions from school in 2015/16. Children with a ‘primary need’ of ‘autistic spectrum disorder’ were almost three times as likely to have experienced at least one fixed period exclusion in 2016/17 (4.3% of autistic children; 9,040 children) than children without identified special educational needs (1.5% of children). Levels of permanent school exclusions were also higher for autistic children (150 exclusions in 2016/17; 0.15% of children) than for children without identified special educational needs (less than 0.1%).

For children without SEN, the most common reasons for fixed period exclusions were persistent disruptive behaviour (26.9% of exclusions for this group), ‘other’ (21.2%), physical assault against a pupil (18.8%), and verbal abuse/threatening behaviour against an adult (16.2%). For children with a ‘primary need’ of ‘autistic spectrum disorder’, the most common reasons were: physical assault against an adult (23.6% of exclusions), persistent disruptive behaviour (19.9%), physical assault against a pupil (17.6%), and verbal abuse/threatening behaviour against an adult (16.4%).

For children without SEN, the most common reasons for permanent exclusions were persistent disruptive behaviour (31.9% of exclusions), ‘other’ (18.5%), physical assault against a pupil (13.4%), and drug and alcohol related reasons (11.7%). For children with a ‘primary need’ of ‘autistic spectrum disorder’ the most common reasons were physical assault against an adult (33.3%) and persistent disruptive behaviour (23.3%).

TL:DR
  • Unlike some other categories of ‘special educational needs’, the number of children with a statement/Education Health and Care Plan and a ‘primary care need’ of ‘autistic spectrum disorder’ has rapidly increased to just over  60,000 children in the seven years from 2010 to 2017, now representing over a quarter of all children with statements/EHCPs.
  • As with other groups of children, from 2010 to 2017 there has been a gradual drift towards special schooling for autistic children.
  • Children with a ‘primary need’ of ‘autistic spectrum disorder’ are twice as likely  to be eligible for free school meals (28% of children) than children generally.
  • Children with a ‘primary need’ of ‘autistic spectrum disorder’ are more likely than children not identified as having special educational needs to have authorised absences from school (levels of unauthorised absences are similar), and to experience both fixed period and permanent exclusions from school.


Tuesday, 22 May 2018

Education statistics and children with learning disabilities: update

I’ve been looking at the Department for Education (DfE) statistics on children and young people identified within the English education system as children/young people with learning disabilities, recorded in an annual census of schools. 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. I am going to focus solely on children and young people with a statement or EHC plan, as this seems to be the most meaningful in terms of children and young people who stand a chance of getting some form of specific support. There are going to be A LOT of graphs…

Return to SENDer

The first question is simply – how many children and young people with learning disabilities and statements/EHC plans are recorded in DfE statistics? The first graph below shows the number of children with a ‘primary SEN need’ of MLD, SLD and PMLD, from 2010 to 2017 (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 2017, nearly 68,000 children in England (nearly 30% of all children with statements or EHC plans) had a statement/EHC plan and were identified as children with learning disabilities. For children with MLD this was 28,564 children in 2017, a reduction of 30% in the seven years from 2010. This huge drop is at a time when the number of children on school rolls increased by 7%, and there are no population reasons to expect the number of children with moderate learning difficulties to be dropping.

In 2017, there were 29,120 children with a statement/EHC plan and identified with a need of SLD, an increase in numbers of 15% from 2010, and in 2017 outstripping the number of children with a statement/EHC plan and MLD for the first time. Finally, in 2017 there were 10,010 children with a statement/EHC plan and identified with a need of PMLD, again an increase of 15% in the seven years from 2010.


Because these categories might seem pretty arbitrary, I also looked at how many of these children had a ‘secondary SEN need’ recorded in 2017 alongside their primary need.

For those with a statement/EHC plan and a primary need of MLD, just over half (52%) had a secondary SEN identified, most commonly Speech, Language and Communication Needs (6,475 children; 22.7%), Social, Emotional and Mental Health (2,629 children; 9.2%), and Autistic Spectrum Disorder (2,150 children; 7.5%). An additional 14,026 children had a secondary need of MLD identified alongside a different primary SEN, most commonly Speech, Language and Communication Needs (4,786 children), Autistic Spectrum Disorder (3,588 children), and Social, Emotional and Mental Health (2,598 children).

For those with a statement/EHC plan and a primary need of SLD, just over half (52%) had a secondary SEN identified, most commonly Autistic Spectrum Disorder (5,442 children; 18.7%), Speech, Language and Communication Needs (4,515 children; 15.5%), and Physical Disability (1,919 children; 6.6%). An additional 7,024 children had a secondary need of SLD identified alongside a different primary SEN, most commonly Autistic Spectrum Disorder (4,511 children).

For those with a statement/EHC plan and a primary need of PMLD, just under half (46%) had a secondary SEN identified, most commonly Physical Disability (1,252 children; 12.5%), Visual Impairment (1,138 children; 11.4%), Speech, Language and Communication Needs (697 children; 7.0%), and Autistic Spectrum Disorder (520 children; 5.2%). An additional 922 children had a secondary need of PMLD identified alongside a different primary SEN, most commonly Physical Disability (281 children), and Autistic Spectrum Disorder (196 children).


When, will I, will I be labelled?

At what ages are children/young people most likely to be identified by education systems as requiring a statement/EHC plan associated with a learning disability? The graph below shows the rates (per 1,000 of all children) of children with statements/EHCPs and primary needs of MLD, SLD and PMLD at ages 5-15 years (when the information about children is likely to be more complete).

Children are less likely to be identified as requiring a statement/EHC plan associated with MLD early in their school career but progressively more likely to be identified as age increases, with particularly sharp increases at ages associated with the end of primary school and into secondary school. Children are likely to be identified as requiring a statement/EHC plan associated with SLD earlier on, with identification rates gradually increasing with age. Children are likely to be identified as requiring a statement/EHC plan associated with PMLD very early in their school careers – identification rates for this group of children gradually decrease with age.



I’m special (special), so special (special), I gotta have some of your attention, give it to me

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 2017. These figures don’t include potentially substantial but often not really known numbers of children not in school at all (including those being home educated), 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 2017 – this graph shows that this drop has been bigger for children with MLD in mainstream schools than for children with MLD in special schools.

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 2017, 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 gradually increased from 2010 to 2017.


The next graph below puts this information together to show the proportion of children with a statement/EHC plan associated with MLD, SLD and PMLD in mainstream schools from 2010 to 2017. For children with MLD, the proportion of children in mainstream schools was over 50% in 2010; by 2017 this is now less than half. The proportion of children with SLD in mainstream schools is lower, and has gradually decreased from 2010 to 2017. For children with PMLD, the proportion of children in mainstream schools has stayed fairly static, with some fluctuations, from 2010 to 2017, and is slightly higher in 2017 than it was in 2010.




Have a banana, Hannah. Try the salami, Tommy. Get with the gravy, Davy. Everybody eats when they come to my school

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. Over a third of children with MLD and SLD, and well over a quarter of children with PMLD, were eligible for free school meals in 2017. This compared to 14% of all children in schools. 
  

And I miss you, like the deserts miss the rain

Finally for this blogpost, I want to talk about the statistics on absences and exclusions from school.
The graph below shows the percentage of half-day sessions that children missed due to authorised and unauthorised absences from school in 2016/17. This is not just for children with a statement/EHC plan, but also includes children at the level of School Action Plus (a historic category somewhere between a statement and SEN Support). The light blue bits of the column show that levels of unauthorised absences were pretty low for all children, and children with SLD and PMLD (although a little higher for children with MLD). Levels of authorised absences from school were lowest for all children then progressively higher for children with MLD, SLD and PMLD. Children with PMLD were on average missing one school session in seven.

In 2013/14 (the latest year for which these analyses have been published), illness and medical/dental appointments accounted for 57% of absences of children with MLD, 72% of absences of children with SLD and 78% of absences of children with PMLD.




The last graph below shows the percentage of children who experienced fixed-term and permanent exclusions from school in 2015/16. The vast majority of exclusions were fixed-term exclusions – compared to children without SEN, children with MLD were much more likely to experience a fixed-term exclusion and children with SLD and PMLD were less likely to experience a fixed-term exclusion. Proportions of children without SEN, with SLD and with PMLD experiencing permanent exclusions were extremely low (less than 0.1%), but were higher amongst children with MLD (0.2%).



For children without SEN, the most common reasons for fixed period exclusions were persistent disruptive behaviour (26.9% of exclusions for this group), ‘other’ (21.2%), physical assault against a pupil (18.8%), and verbal abuse/threatening behaviour against an adult (16.2%). For children with MLD, the most common reasons were similar: persistent disruptive behaviour (31.2%), ‘other’ (19.5%), verbal abuse/threatening behaviour against an adult (16.8%), and physical assault against a pupil (15.9%).

For children with SLD, the most common reasons for fixed period exclusions were physical assault against an adult (28.2%), persistent disruptive behaviour (19.0%), physical assault against a pupil (17.8%) and verbal abuse/threatening behaviour against an adult (14.4%). The pattern for children with PMLD was similar: physical assault against an adult (38.9%), physical assault against a pupil (22.2%), persistent disruptive behaviour (16.7%), and verbal abuse/threatening behaviour against an adult (11.1%).

For children without SEN, the most common reasons for permanent exclusions were persistent disruptive behaviour (31.9% of exclusions), ‘other’ (18.5%), physical assault against a pupil (13.4%), and drug and alcohol related reasons (11.7%). For children with MLD the most common reasons were broadly similar: persistent disruptive behaviour (36.7%), ‘other’ (14.4%), physical assault against a pupil (13.3%), physical assault against an adult (11.1%), and verbal abuse/threatening behaviour against an adult (10.0%). The number of exclusions involving children with SLD (20 exclusions (rounded figure)) and children with PMLD (no exclusions) were too small to allow for meaningful analysis of the reasons for permanent exclusions.

Lazing on a summary afternoon

I don’t really want to put a heavily opinionated commentary on this blogpost, so here’s a TL:DR 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 steadily increasing, the number of children identified as having a special educational need associated with moderate learning difficulties is plummeting.
·        With the possible exception of children with profound and multiple learning difficulties, there is a sustained drift towards special education for other groups of children with learning disabilities.
·        Children with learning disabilities are more likely to be eligible for free school meals than children generally.
·        Children with moderate learning difficulties are more likely to experience unauthorised absences from school, fixed-term exclusions and permanent exclusions compared to children without special educational needs.
·        Children with severe learning difficulties are equally likely to experience unauthorised absences from school and fixed-term exclusions compared to children without special educational needs; they are also more likely to experience authorised absences (largely due to illness and health appointments) but extremely unlikely to experience permanent exclusions.

·        Children with profound and multiple learning difficulties are equally likely to experience unauthorised absences from school compared to children without special educational needs; they are also less likely to experience fixed-term exclusions, extremely unlikely to experience permanent exclusions, but much, much more likely to experience authorised absences (largely due to illness and health appointments).

Friday, 4 May 2018

The LeDeR report - what does it say?

Sorry – I went off on one a little in my blogpost about the LeDeR report. This will be a shorter blogpost that I should have written in the first place, with a bit about the findings of the report and how they fit with what else we know.

The first thing to say is that this is a report of work in progress, as the scope of the LeDeR has only just become national, there is a big backlog of notified deaths where reviews have not yet been completed, and there is incomplete information for many deaths. For example, almost half (48%) of the 1,311 notified deaths in the 17 month period are from the North of England, where work on the LeDeR programme took off first. We will need the LeDeR programme to continue for longer, on a national basis, to get a better sense of what is happening nationally. It’s also important to bear in mind that any notification system is likely to miss the majority of adults with ‘mild’ learning disabilities, who were labelled as such in education but are not known as such to any health or social care services in adulthood.

The median ages of death (the age at which half of people have already died) in this LeDeR report are, if anything, worse than those reported in other evidence. In this report, the median age of death for men was 59 years; for women it was 58, with over a quarter (28%) of deaths happening before the person reached 50 years old (which presumably means that over 20% of deaths happen during a person’s 50s?). And this itself will over-estimate the age of death for the total population of people with learning disabilities, as the LeDeR programme does not include deaths for young children under the age of 4 years.

The original Confidential Inquiry (reporting in 2013), using a similar method, reported a higher median age of death of 65 years for men and 63 years for women, and the Mazars report estimated a median age of death of 59 years for people with learning disabilities in contact with Southern Health NHS Trust.

Different, imperfect, sources of information have reported similar ages of death. Analysis of death certificates from 2001 to 2014 reported that the median age of death for men with learning increased from 52 years in 2001 to 60 years in 2014; and increased at a slower rate for women from 53 years in 2001 to 58 years in 2014. By 2014, the gap in median age of death between men with and without learning disabilities was 19 years; for women this gap was 26 years.

Using GP records from about half of England over three years from 2014/15 to 2016/17, the life expectancy (a slightly different way of calculating length of life) of men with learning disabilities was 66 years (14 years younger than other men), and for women with learning disabilities also 66 years (18 years younger than other women). The graph below shows the age of death of boys/men and girls/women with and without learning disabilities at different ages (bearing in mind that GPs are less likely to have children with learning disabilities recorded as such on their books) – girls in particular but also boys with learning disabilities are more likely to die at every age. 



From this evidence we know that people with learning disabilities live, on average, lives 15-20 years shorter than other people. We don’t really know whether things are getting better or worse, particularly as the continued improvements in life expectancy for people generally that we’ve seen for a long time seem to be stalling for some groups of people.

The three main general causes of death reported in this LeDeR report, respiratory diseases, circulatory diseases, and cancer, are broadly consistent with those reported in the Confidential Inquiry and from other work looking at GP records, although this LeDeR report seems to be reporting proportionally more respiratory diseases as causes of death. More specifically, pneumonia and aspiration pneumonia (when food, fluid or vomit is breathed into the lungs rather than going into the stomach) are recorded as causes of death somewhere on the death certificate for 41% of the 576 people with learning disabilities for whom there were records. These infections, together with sepsis, which was mentioned as a cause of death for fully 11% of people with learning disabilities in the LeDeR report, are all illnesses that can be:

·        guarded against (for example flu vaccination – in 2016/17 41.9% of people with learning disabilities on GPs’ books had a flu jab); treatment of gastro-intestinal reflux disorder which is recorded by GPs for 7.8% of people with learning disabilities; treatment of constipation which is recorded by GPs for 13.1% of people with learning disabilities; annual health checks – in 2016/17 49.7% of eligible people with learning disabilities had an annual health check)

·        managed and treated, as long as signs of these illness are recognised quickly and treated properly

In this LeDeR report there are some really worrying clues about how services are responding (or not) to the health needs of people with learning disabilities. Overall, nearly two-thirds (64%) of people with learning disabilities died in hospital compared to just under half (47%) of people generally. This suggests more sudden, early and traumatic deaths rather than planned deaths where the person can die at home or in a hospice. Particularly worrying was the fact that more than three quarters of young people aged 4-24 years (76%) died in hospital – what is happening to these young people and their families? (I’m thinking of Connor Sparrowhawk and Oliver McGowan among many other people right now). It’s also worrying that 101 people with learning disabilities (9%) died in out-of-area placements. I don’t know of any recent information about how many people with learning disabilities are living into out-of-area placements, but this looks to me like it might be disproportionate, and at a time when the distance from home of people in inpatient services is at best not decreasing.


Finally for this blogpost, the three main themes of ‘learning points or recommendations’ are depressingly familiar for anyone who has read the Confidential Inquiry, or followed the heartbreaking inquests of Connor Sparrowhawk, Danny Tozer, Richard Handley or Oliver McGowan, or seen the all-too-regular local news reports of people with learning disabilities dying before their time – just today Mark Neary tweeted a link to this story https://www.kentlive.news/news/man-died-after-choking-sausage-1526663.amp? They are: inter-agency collaboration, including communication; awareness of the needs of people with learning disabilities among health and social care providers; better understanding and application of the Mental Capacity Act. I’ve said my piece on these in the other blogpost so I won’t say any more here. But I don’t see evidence from this LeDeR report that what’s happening now to stop people dying early is going to be nearly enough.

Can I Kick It? (down the road) Yes You Can! (with apologies to A Tribe Called Quest): The LeDeR report

Today (4th May 2018) the Learning Disabilities Mortality Review (LeDeR) Programme published its Annual Report 2016-2017, summarising the work of the 3-year programme since it started in June 2015 up to the end of November 2017. According to the report (there is also an easy read summary) the purpose of the LeDeR programme is as follows: “The Learning Disabilities Mortality Review (LeDeR) programme was established to support local areas to review the deaths of people with learning disabilities, identify learning from those deaths, and take forward the learning into service improvement initiatives” (page 5).



As ever, people on Twitter are a great source of commentary on this report so if you use Twitter, the hashtag #LeDeR will start you off. In this blogpost, I will focus on what I think this report reveals about the pervasive and systematic institutional disablism faced by people with learning disabilities.

How do I discriminate against thee? Let me count the ways

1)      Disposable scrutiny

As I mentioned above, the LeDeR programme was commissioned as a 3-year programme (as was the Confidential Inquiry, from 2010 to 2013). At the time of writing and as far as I know, there has been no announcement of an extension to the programme which is due to finish at the end of this month, just at the point when it has established methods for doing reviews in (almost) every part of England. What does this signal? To recalcitrant professionals and organisations - that they can wait this process out and continue business as usual? To the people working on the programme – that they are disposable and they shouldn’t commit too much because they’ll be looking for another job soon? To people with learning disabilities and families – that it’s another passing initiative?

2)      Don’t provide enough money for it to succeed

The short-term nature of the programme and the time it’s taken to get (nearly) national reviewing in place suggests that the programme has not been provided with enough cash to do the job. As of November 2017, only 103 reviews had been completed out of 1,311 notified deaths. The report itself states that one of four key factors hindering reviews being done was “large numbers of deaths being notified before full capacity was in place locally to review them”. The rate of deaths being notified should have been entirely predictable; the original Confidential Inquiry had many more deaths notified to them than they were initially predicting from the available statistics at the time. The LeDeR programme obviously needed more resources themselves to be prepared for this. The professionals and organisations doing the reviews also needed to be properly resourced to do them.

3)      Water it down

One of the obvious consequences of not funding the programme properly is that lots of people’s deaths have been notified to the programme but reviews haven’t (yet) been carried out. Is the solution to this to fund the programme better? No – the solution is to water down the review process. As this slightly opaque phrase in the report says “NHS Sustainable Improvement has been formally commissioned to help address and support a reduction in the number of un-reviewed deaths, and develop a more streamlined process for the delivery of mortality reviews” (page 14).

4)      Plausible deniability

The LeDeR programme has been commissioned in typically opaque fashion, ultimately by NHS England through HQIP (the Healthcare Quality Improvement Partnership). The fingerprints of the Department of Health and Social Care (DoHSoC?) are nowhere on this process.  And to help ‘resolve’ the challenges, another mystery beast, the NHS Sustainable Improvement Team (NHS-SIT?) have been “commissioned” – they seem to be chummy with general #Fabness activities but their website basically links to NHS England Transforming Care. This alphabetti spaghetti enables no-one to be accountable, but allows plenty of opportunities for interfering “helping” behind the scenes (why is the report dated December 2017 but only being published in May 2018?). The report itself identifies “Inter-agency collaboration, including communication” as one of its three themes for learning points or recommendations. The swirl of acronyms around the LeDeR programme illustrates the bureaucratic usefulness of a lack of inter-agency collaboration – a plausible deniability of accountability – that we have seen played out in heartbreaking fashion in inquest after inquest with fatal consequences for Richard Handley (@HandleyInquest), Danny Tozer (@TozerInquest) and so many other people with learning disabilities.

5)      Scrutiny is optional

I must admit, when the Confidential Inquiry was first published I thought that a voluntary approach to establishing a mortality review programme was the best way to go – I was worried that a mandatory approach would result in some organisations gaming and hiding the deaths of people with learning disabilities and that this would result in the deaths of people with learning disabilities being minimised and swept under the carpet. Well knock me sideways and call me Nostradamus – not. The Mazars report changed all that for me – both that the scale of people dying preventable deaths was much worse than I thought, and that at least one organisation was already hiding people’s deaths on an industrial scale. The report itself says that one of four key factors hindering getting reviews done is “the process not being formally mandated” (page 14). DoHSoC seems perfectly willing to mandate all sorts of other things – why not this?

6)      Not part of the job

Another aspect of the ‘scrutiny is optional’ aspect of the LeDeR programme is the extent to which the programme has had to build up reviewing processes outside of what services and professionals see as their usual job or what they’re required to do. The LeDeR programme has had to operate largely outside the way NHS Trusts and professionals usually do things, relying on chivvying, goodwill and voluntary commitments, sometimes in opposition to the very NHS and social care organisations that are supposed to be leading the reviewing. Two of the four key factors the report identifies as hindering reviews happening relate to this (all page 14):

 “the low proportion of people trained in LeDeR methodology who have gone on to complete a mortality review”

“trained reviewers having sufficient time away from their other duties to be able to complete a mortality review”

The report also states “Some participating NHS and social care organisations have made it clear that, because of their present overstretched budgets and the pressures on staff time, contributing to LeDeR could not be prioritised as we would all like.” (page 14). Clearly proper scrutiny of the deaths of people with learning disabilities is not seen by health services as something they need to be doing – perhaps they’d like to cancel all hip operations as not essential and see how that goes.

7)      Accept lower standards

By the end of November 2017, 103 reviews had been completed approved by the LeDeR quality assurance process. Of these 103 reviews, the reviewers decided that there was sufficient concern about the deaths of 13 people that a more detailed, multi-agency review was carried out within the LeDeR programme. Twelve people’s deaths had had a post-mortem carried out. There was to be a Coroner’s inquest into 5 of the 103 people’s deaths, and for a further 19 people an internal review (usually by an NHS Trust) was going to be carried out.

Reviewers were also asked to provide an overall assessment of the care received by the person, from 1 (“This was excellent care and met current best practice”) through to 6 (“Care fell short of current best practice in one or more significant areas resulting in the potential for, or actual, adverse impact on the person”). Exactly 100 overall assessments were provided by reviewers. Despite the number of people’s deaths being internally investigated and going to inquest (which from other evidence is probably not as many as there should be), only 1 person’s care was rated as 6 and only a further 5 people’s care was rated at 5 (“Care fell short of current best practice in one or more significant areas, although this is not considered to have had the potential for adverse impact on the person, some learning could result from a fuller review of the death”). For over a third of people (35 people), the overall assessment was 2 (“This was good care, which fell short of current best practice in only one minor area”) and for not far off half of people (44 people) their care was rated as 1 – “excellent”.

This predominantly ‘good’ and ‘excellent’ care resulted in half of the men with learning disabilities dying by the age of 59, and half of the women with learning disabilities dying by the age of 56. This is an even earlier age of death than was reported in the Confidential Inquiry (65 years for men, 63 years for women) and is on a par with the 59 years reported for Southern Health in the Mazars report.
As the report itself says: “’Excellent’ care is described as being better than the good quality care that any patient should expect to receive...Generally, however, there was a lack of detail about why care was considered excellent, rather than of good quality. For example, one reviewer commented that excellent care had been provided because ‘there were numerous experts involved’ in the person’s care, without specifying exactly what it was that made this excellent care…Similarly, other examples of excellent care were related to the provision of reasonable adjustments that health services have a duty to provide under the Equality Act 2010.” (page 22) If complying with the law is seen as ‘excellent’, then what on earth counts as ‘good’?

8)      The law is optional

As has been found in many other places, the report finds that professionals are routinely ignoring the Mental Capacity Act. The report states “Reviewers identified problems with the level of knowledge about the MCA by a range of professionals, and concerns about capacity assessments not being undertaken, the Best Interests process not being followed, and Deprivation of Liberty Safeguards (DOLS) not being applied” (page 28). The MCA is now a teenager I think (came into law in 2005?), but along with the Equality Act is clearly seen as at best an option and at worst an inconvenience to be ignored by many professionals (read Mark Neary’s blogpost on this).

9)      Learning disability as a life limiting condition

In Sara Ryan’s horribly apt phrase on BBC Breakfast this morning, all too often a learning disability is seen by a range of professionals as a life-limiting condition – a self-fulfilling prophecy if ever I heard one (a child with Down syndrome needs a heart operation, people with Down syndrome have a shorter life expectancy, therefore we don’t do the heart operation – consequence…). For the 576 people where the programme had a Medical Certificate of Cause of Death, Down syndrome was recorded as a the sixth most common specific underlying cause of death – for 25 people in total. No words…

10)   Don’t mention the ‘D’ word (or that other ‘D’ word either)

I’ve gone on before about how this report and similar evidence elsewhere add up to compelling evidence for institutional disablism (a form of discrimination if you’d prefer this ‘D’ word?). I also think this is at the heart of a lot of the practices that result in people with learning disabilities dying so much younger than they should. Yet, as in other policy and report recommendations (the CQC Learning From Deaths report being a prime example), the very idea that professionals might be acting in ways that are discriminatory or disablist cannot be even fleetingly entertained. Instead the issue is the mysterious force of ‘awareness’ that must be ‘raised’, or a lack of information that must be better shared. This displacement, for me, is at the heart of why people are still dying.

So – that’s my top ten of institutional disablism. It looks gargantuan and can feel immoveable – and many of my days are spent struggling with a sense of the seeming pointlessness of the work I do (that may be more about turning 50 though…). But 60 years ago huge institutions for people with learning disabilities must have felt like that too, and look what happened to them.

The picture at the top of this blog is a patch from the LB quilt for Connor Sparrowhawk, and forget-me-nots are in full bloom at the moment, huddling together in untended patches and roads, a blur of pale blue as I pass by. As Saba Salman reminded us this morning, every ‘death’ is a person, and I’ll finish this blogpost with a report of one person’s death in the report (page 23).

“This was a gentleman who could not advocate for himself. He was under the care of a urologist when a child, this stopped at age 18. For 8 years he had no follow up care and during this time he developed a large kidney stone which was the main cause of his death. There was no professional co-ordination in relation to his long-term conditions; the treatment of his weight loss took months; limited pain relief was given, the identification of urinary infection and commencement on antibiotics towards the end of his life could have been done sooner; and there was no recognition of pyelonephritis which was the cause of death”.


When I read this, I can’t help feeling that him being described as a ‘gentleman’ is part of the issue.

Friday, 6 April 2018

Making our own music again

I really enjoyed @SamSly 's blogpost for #socialcare future, "Simple Humanity". One of many things that jumped out at me was this, early on in the post: 


"I realised that the first point I would want to make about the future of social care would be that we really don't need to re-invent what citizens need to look out for and look after each other - it's probably already out there. We shouldn't be wasting time and money on the next big transformation or reform, but instead should focus on all the things we already have as a society and build on those."

This is such an important point, that has echoes in a number of the other blogposts in #socialcarefuture, and I just wanted to make a couple of short reactions to it here.


First, it's vital that we remember Sam's point and not get overly fixated on 'innovation' as a thing. I've probably gone on about this before, but there's a great book by historian David Edgerton about the history of technology, called "The Shock Of The Old". This book looks at what he calls "technology in use" - what technologies are actually used by most people over time, in what ways, often by stitching together what comes to hand and using what works best for people on a daily basis. The technologies used by most people are quite often "old" technologies (the bicycle?), rather than the onward march of innovative technologies trumpeted in most histories of "technology by invention" even if they have little impact on most people's lives and don't survive for that long (Concorde?). 

Do we need a similar perspective on "technology in use" for people using/brushing up against/trapped in social care, rather than always looking to innovations and great leaps forward in social care "technology"? How do people want to live their lives, and what's already to hand (or can be helped into being) in what combinations for people to take and use? Some funky newness might be helpful, but it's also OK if it turns out not to be useable. As David Edgerton says in his book: 

"The twentieth century was awash with inventions and innovations, so that most had to fail. Recognising this will have a liberating effect. We need no longer worry about being resistant to innovation, or being behind the times, when we choose not to take up an innovation. Living in an inventive age requires us to reject the majority that are on offer."



A quick and fairly random analogy to finish on. Over 100 years ago, when technologies for recording and transmitting music were not widespread, most people experienced music by making it themselves and listening directly to other people making it. Technologies for recording and transmitting music have now become so ubiquitous that making music rather than consuming it seems to have become a smaller part of the lives of fewer and fewer people. 

Is this what our current technology of social care services (including all the violent bureaucracy of eligibility and assessment) have done, turning people into consumers of 'care' provided in standardised formats? A choice agenda here might mean going from one radio station everyone is forced to listen to, to the fractal byways of music streaming services, but it's still at bottom listening to someone else's music coming out of a speaker.


In social care, are we too quick to strain for new technologies of 'consumption' and getting in the way of people making their own music? A multitude of things can count as music - alone, together, involving a musical instrument, getting a sound out of a milk bottle, karaoke, involving just a voice or a body, silence. Music needs - what? Confidence (maybe?), skills (not necessarily, whatever they are?), other people to make music with? (for some kinds of music?), an audience (sometimes?), equipment (for some people?), a place of safety and love (ideally?). How does social care, with due humility, take its place, so that we can all make our own music again?