Thursday, 5 July 2018

Ignorance Is Strength - what do we know about the progress of Transforming Care?

On 5th July 2018 there will be/was a parliamentary Westminster Hall debate proposed by Norman Lamb MP (in the coalition government of 2010-2015, a Lib Dem health minister who continues to be actively engaged with what’s happening to/with people with learning disabilities).

Here is where you can get information on the debate itself, including watching it, although in characteristic and revealing fashion it is mis-titled as ‘Future of the Transforming Social Care programme’. The Commons Library has also produced a short document with links to many relevant reports.

 "That this House expresses concern at the slow progress made under the Transforming Care programme, which was set up to improve the quality of care and quality of life for children and adults with a learning disability and/or autism who display behaviours that challenge;
·        notes that evidence continues to emerge of the neglect, abuse, poor care, and premature deaths of people with learning disabilities;
·        recognises that a substantial number of people with learning disabilities remain trapped in, and continue to be inappropriately admitted to, Assessment and Treatment Units (ATUs) rather than living independently with support close to their families and friends;
·        is concerned at the lack of capacity and capability of community services, as highlighted by the National Audit Office; believes that the Transforming Care programme is unlikely to realise the ambitions set out in the ‘Building the Right Support’ strategy before it ends in March 2019;
·        calls on the Government to commit to a successor programme to Transforming Care in order to realise the ambition of a shift away from institutional care by investing in community services across education, health and social care;
·        believes that such services must adopt a lifelong, early intervention and prevention approach, protect the human rights of children and adults with learning disabilities and/or autism, and promote their independence and wellbeing through delivery of the right support, in the right place, at the right time;
·        and further calls on the Government to ensure that such a programme is prioritised and properly resourced."

This blogpost is going to summarise where I think we’re at with Transforming Care, with a bit of focus on the evidence we as the public do and don’t have. I’m going to try cover quite a lot of ground – there are many over-detailed posts on specific aspects of this on my blog.

Brief background: a BBC Panorama undercover investigation of a specialist inpatient unit for people with learning disabilities and/or autistic people, Winterbourne View, in 2011 revealed to the public horrific abuse from staff, eventually resulting in several prosecutions. This also helped kickstart a process of bringing into the light that an unknown number of people (in the thousands) were in these kinds of places (both NHS and private sector), sometimes for decades and a long way from home, and regularly experiencing seclusion, restraint, assault and antipsychotic medication rather than effective support to help people move on.

In 2012 the government responded with ‘Transforming Care’, which went through a number of guises before being rebooted in 2015 as the NHS England-led Transforming Care policy/programme, summarised in 'Building The Right Support'. This is designed to reduce the number of people with learning disabilities and autistic people in specialist inpatient services, and to increase and improve the support people get such that the option of putting people into inpatient services does not arise, and is due to wrap up as a programme at the end of March 2019.

So – what do we know about how Transforming Care is going, and what don’t we know? In some ways (thanks to the continuing efforts of NHS Digital) the information we (the public) have about people with learning disabilities and/or autistic people in inpatient units is getting better, in other ways it is getting worse.


What do we know about people in inpatient units – the headline numbers

How the Transforming Care programme has mostly been judged (and what it’s put most of its money and people into) is reducing the number of inpatient units for people with learning disabilities and/or autistic people.

In their ‘Building The Right Support’ statement of intent in October 2015, NHS England and others said that by March 2019 there would be (from a baseline they described as 2,600 people in these units on any one day) a reduction of 35% - 50% in the number of inpatient places from October 2015 to March 2019, which translates to inpatient places for 1,300 – 1,700 people with learning disabilities and/or autistic people.

Based on information that NHS England and NHS Digital have been publishing for a while on people on what commissioners think are specialist inpatient units for people with learning disabilities and/or autistic people (called the ‘Assuring Transformation’ dataset), we know that:
  • In May 2018, there were 2,400 people recorded as being in these units. This will be an under-estimate because commissioners don’t always report information on time but can add it later, and this typically results in at least 100 extra people eventually being ‘found’ for any given month. So my estimate would be in May 2018 there were around 2,500 people in these units. This compares to 2,615 people in March 2016, an overall reduction of 4.4% in over 2 years. To reach the original targets, reductions in the number of people in these units will have to be between 32% and 48%, in 10 months.
  • The average length of time that people have lived in their current inpatient unit has dropped, from 1,082 days (just under 3 years) in 965 days (around 2 years 8 months) in May 2018. But many people are regularly transferred straight from one unit to another – people’s overall length of continuous stay in inpatient units has not changed, from 1,954 days (5 years 4 months) in March 2016 to 1,960 days (still 5 years 4 months) in May 2018.
  • How far people are from their home when they’re in these units wasn’t reported in March 2016. Where this was known by commissioners in May 2018 (and it wasn’t for 295 people), 22% of people were between 50km and 100km from home and a quarter (25%) of people were more than 100km from home.


On these three straightforward measures, the Transforming Care programme has not achieved what it was supposed to. The number of people in inpatient units has not changed much at all over time, people are still spending on average more than 5 years in inpatient units, and inpatient services are far from local (at least 50km far) for almost half of people in them. On other measures too, like the legal status of people in inpatient units, the types of unit people are in, and the security level of inpatient units, there has been hardly any change over the course of the Transforming Care programme.

There are also some worrying trends in the ‘Assuring Transformation’ dataset, for example:
  • The number of children and young people aged under 18 in these units is sharply increasing, from 170 young people in March 2016 to at least 250 young people in May 2018, an increase of 47% in just over two years.
  • The proportion of people in these units labelled as autistic (with or without accompanying learning disabilities) has increased from 38% of people in these units in March 2016 to 48% of people in May 2018.
  • Of the 2,010 people ‘admitted’ to inpatient units in the year June 2017 to May 2018, 18% (360 people) were people who were re-admitted to an inpatient unit within a year of their last stay, and over a quarter (26%; 515 people) were actually transfers straight from a different inpatient unit. These proportions of people being re-admitted or transferred are stable or if anything slightly increasing from the early days of Transforming Care in early 2016.
  • The private sector is currently operating around half of all these inpatient places,with a slow drift upwards in this proportion over time. Where direct comparisons have been done, private sector inpatient units have been of poorer quality, and some organisations run inpatient serves that receive consistently poor CQC ratings.


Also worrying is the information coming from a different dataset run by NHS Digital, the Mental Health Services Dataset (MHSDS), which reports the number of people that service providers (rather than commissioners) report as people with learning disabilities and/or autistic people in mainly generic mental health inpatient services:
  • At the end of March 2018, 3,540 people with learning disabilities and/or autistic people were in some form of mental health inpatient service.
  • There is some overlap with the Assuring Transformation data (1,535 of the 3,540 people were in a ‘learning disability ward’) but there are perhaps altogether getting on for 4,000 people with learning disabilities or autistic people in some form of specialist inpatient service on any given day, with people in generic mental health inpatient services generally staying for much shorter periods of time.


Some things that we don’t know (any more) about people in inpatient units

NHS England have been repeatedly criticised by parliamentary select committees and the National Audit Office for not having and sharing enough decent information about how well Transforming Care is doing, and what impact (if any) it is having on people and families. And the hard work that has gone into developing and maintaining both the Assuring Transformation and MHSDS datasets shows just how difficult this can be. But there are important sources of information that NHS England have discontinued, not made public, or shelved, that are essential for understanding what is happening with Transforming Care. Here are some that I know of – there may well be others:
  • The Learning Disability Census was a complete annual census of inpatient services for people with learning disabilities and/or autistic people that ran for three years from 2013 to 2015 but has since been discontinued. Among other things, this census provided invaluable information such as people’s experiences of seclusion, restraint, assault, self-harm and antipsychotic medication usage, and also in the fees charged by these units (running at over half a billion pounds every year in 2015) that have not been collected and/or made publicly available since. This is crucial information for proper scrutiny of these units and what they are costing the public purse.
  • Well over a year ago, NHS England commissioned the University of Birmingham and partners to conduct a ‘national evaluation of the Building The Right Support’ programme, using an ‘action research’ methodology to ‘inform the national and local implementation of the programme’. To date, no products of this ‘action research’ project have been published, although I believe at least one substantial report does exist. Why?
  • In 2017, the National Institute for Health Research (NIHR) put out a call to fund a research project also evaluating the ‘Transforming Care’ programme. As the call states: “None of the projects above are exploring in depth the quality of life outcomes and the quality of care of people in the community settings in which they live . Therefore, there is a need (and a demand from people with disabilities and carers and advocates) for independent research to focus on measuring changes in quality of life and support over time and so assess the impact of the programme on the lived experience of people.” The commissioned project was supposed to start in January 2018. My understanding is that despite at least two grant proposals being shortlisted, it seems that NHS England have decided not to fund this grant proposal at all, despite there being no other way to track the impact of Transforming Care over time on the actual lives of people on the receiving end.
  • The NIHR research call also mentioned two other reports that were ‘about to be published’: “A systematic review of the literature and a report from the analysis of the live clinical audit platform data prepared by Dr Peter Langdon and colleagues is about to be published. Findings from a Quality and Outcomes Research Unit study on the views and experiences of commissioners, including views on the Transforming Care programme, is about to be published.” Where are they?


We also know very little of more murky consequences of the Transforming Care programme, such as the extent to which providers of inpatient unit services can ‘disappear’ people from the statistics by inventing ‘new’ types of service that aren't officially inpatient unit but may feel like them to the people living in them, and by re-registering inpatient units as residential care homes (again, do they feel any different apart from being cheaper to run?). We also don’t know how many people use inpatient services over the course of a year, which may be more meaningful than snapshots at any given point in time.

This absence or withholding of relevant information severely hampers public scrutiny and understanding of the Transforming Care and how it might operate more effectively.


The wider picture

So far I’ve focused on information about what Transforming Care is trying to move away from (the number of people in inpatient units). What about what they’re trying to move towards, and how well that is going? Although there is less specification about this in 'Building The Right Support', some main elements include better community-based support for people who need it (including support in childhood), better housing options for people, and better support for people in distress, resulting in inpatient services no longer being seen as a necessary option for nearly as many people.

Information about the extent to which the kinds of community-based services and support advocated in Transforming Care, and their impact on people’s lives, is seriously lacking, but available straws in the wind are, on the whole, not encouraging. For example:
  • Community teams for children with learning disabilities and/or autistic people. There is no national information on these teams on what they do. An NHS Benchmarking project working with 49 organisations has reported some information on community services for children with learning disabilities . Here the trends look pretty catastrophic. In 2015/16 there were 2,289 contacts with children with learning disabilities made by community health services per 100,000 general child population – a figure already lower than the equivalent for adult teams. By 2017 this had dropped to 1,471 contacts with children per 100,000 population, a drop of over a third. Over the same year, the average waiting time for a routine appointment for children with learning disabilities increased from 32 days to 72 days.
  • Coupled with the increasing number of children and young with learning disabilities and/or autistic children in inpatient units (with more in residential special schools), a general drift towards special schools, and the high numbers of children and young people with learning disabilities and/or autistic children being prescribed psychoactive medication, early support for children and families looks like it’s going in the wrong direction.
  • Community teams for adults with learning disabilities and/or autistic people – again, there is no national information here. The same NHS Benchmarking project reports that the number of contacts with adults with learning disabilities made by community health services has increased, from 2,688 contacts per 100,000 adult general population in 2015/16 to 2,756 contacts per 100,000 population in 2017. But there are signs that community health services are ‘doing more with less’, and are creaking under the strain. For example, the waiting time from referral to assessment has increased for ‘routine’ referrals from 34 days in 2015/16 to 41 days in 2017. The skills of these community teams are also changing – 61% of staff in these services were registered nurses in 2015/16, compared to 53% of staff in 2017. The number of learning disability nurses working in the NHS has also been plummeting for some years now.
  • In terms of where people are living, there is national information (NHS Digital) for adults with learning disabilities aged 18-64 who are getting long-term social care support (so not including autistic people without learning disabilities, people aged under 18 or over 65, people with support being paid for by health services, or the much larger number of people not getting long-term social care support). This information shows that the number of people living in residential care is dropping, the number of people with tenancies or living in supported living places is increasing, but the number of adults still living with their families is also increasing.


In terms of information on the wider picture, Building The Right Support made a number of promises, including:
  • ·   “We will explore with transforming care partnerships an appropriate way to monitor improvements in quality of life, but are minded to support areas to rollout use of the Health Equality Framework tool to monitor quality of life. In particular, we are considering how to support the use of this tool to understand changes to quality of life as people are supported to move out of inpatient services.”
  • ·    “We will also revise the Learning Disability Self-Assessment Framework (SAF) and the Autism Self-Assessment Framework so that they reflect how well local areas are doing”.

The Learning Disability Self-Assessment Framework, in particular, is much missed by self-advocacy and family groups in many areas as a way of holding professionals in their local areas to account, but there has been no agreement between the Department of Health and Social Care, NHS England, and the Association of Directors of Social Services that they will support and fund another one.

Ignorance is Strength

In this post, I’ve tried to set out a quick summary of what we as the public know about the progress of Transforming Care so far, and also what we don’t know. Within the narrow range of things we have information about, progress seems to be slow, and the wider picture is not encouraging. And the information made available to us, the public, is a tiny fraction of what is needed for proper scrutiny. Surely this information would be useful to everyone willing Transforming Care to succeed?


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.