Social care statistics and adults with learning disabilities - 2018/19 update

For various reasons it’s been a long time since I’ve had the time and energy to blog – apologies (either for the length of time since the last one or for writing one now, depending on your preference). This morning I’m off for the kids’ half-term and they won’t get up until lunchtime, so I thought I’d treat myself (yes, I’m aware how that sounds…). NHS Digital have recently released their annual tranche of statistics concerning social care for adults in England, and this blogpost updates previous posts to include information for 2018/19.

Councils with social services responsibilities return information to NHS Digital every year on how many adults are using various forms of social care, and how much councils spend on social care (this doesn’t include other types of state funding relevant to social care, such as housing benefit as part of supported living support). When looking at trends over time it’s important to remember that there were big changes in the way information was collected between 2013/14 and 2014/15, the one with the biggest impact being that up to 2013/14 most information was collected on people known to social services whereas from 2014/15 onwards most information is collected only on people getting ‘long-term’ social care. Most of the information for 2018/19 can be found here and here.

First, how many adults with learning disabilities are getting access to social care? From 2014/15 the types of long-term social care support people get have been grouped into one of six mutually exclusive categories: residential care, nursing care, direct payment only, support via a personal budget partly including a direct payment, a council-managed personal budget, and council-commissioned community support only. For most of these categories there is also equivalent information from 2009/10.

The first graph below show the number of adults with learning disabilities aged 18-64 getting various types of personal budget or council-commissioned community support from 2009/10 to 2018/19 (bearing in mind the change in data collection between 2013/14 and 2014/15), and also the number of adults aged 18-64 in residential or nursing care.

This graph shows that adults with learning disabilities aged 18-64 were most commonly getting support in the form of council-managed personal budgets (the extent to which most of these feel any different to council-commissioned community services is debatable). The number of people getting support in the form of direct payment only or with part-direct payment has been consistently rising over time, and is now the second most common vehicle for long-term social care support. The number of people getting council-commissioned community support only continues to decrease.

In terms of residential and nursing care, the graph shows that although the number of adults aged 18-64 in residential care and nursing care continues to gradually decline over time, in 2018/19 they still represented 19% of all adults with learning disabilities aged 18-64 getting long-term social care.

In total (including 15 people who were identified as receiving long-term social care in prison) 133,575 adults with learning disabilities aged 18-64 were getting long-term social care in 2018/19, an increase of 7.5% in the four years from 2014/15.

The second graph below presents the same information for adults with learning disabilities aged 65+, from 2014/15 (when the information first became available), using the same vertical axis as the graph above for ease of comparison.

Again, council-managed personal budgets are the most common form of community-based support for older adults. These, along with other forms of personal budget, are continuing to gradually increase over time while the number of adults getting council-commissioned community services only continues to decrease. The number of older adults with learning disabilities in both residential care and nursing care continues to increase, representing in 2018/19 39% of all older adults with learning disabilities getting long-term social care.

In total (including another 15 people who were identified as receiving long-term social care in prison) 17,045 adults with learning disabilities aged 65 or over were getting long-term social care in 2018/19, an increase of 17.0% in the four years from 2014/15.

It’s also highly likely that these figures under-represent the number of people with learning disabilities in residential and nursing care. From 2014-15 everyone using social care is allocated to a single category of ‘primary need’ – learning disabilities is one of these categories, but it is also possible that a person with learning disabilities may be allocated to a different ‘primary need’ such as physical support, sensory support, mental health support, or support with memory and cognition (e.g. dementia). We don’t know the extent to which people with learning disabilities, particularly as they get older, are re-assigned to a different category and potentially moved into generic residential or nursing care places.

The temptation for cash-strapped commissioners to do this is strong as residential and nursing care for people with learning disabilities are a lot more expensive than residential and nursing care for other groups, and residential and nursing care for people aged 18-64 are much more expensive than residential and nursing care for people aged 65+. The graph below shows the units for residential and nursing care for adults with learning disabilities aged 18-64 (from 2009/10) and for older adults (from 2014/15). It is really important to remember that these costs (which should more property be termed fees) are not adjusted for inflation.

In 2018/19 the average fee of residential care for adults with learning disabilities aged 18-64 was £1,523 per week, compared to the next most expensive £1,233 for adults aged 18-64 needing sensory support. Nursing care for adults with learning disabilities aged 18-64 was charged at an average £1,316 per week, compared to the next most expensive £917 per week for people needing support with memory and cognition. Residential care for adults with learning disabilities aged 65+ was an average £1,033 per week, compared to the next most expensive £626 per week for older people needing support with memory and cognition. Finally, nursing care for older adults with learning disabilities was an average £836 per week, compared to the next most expensive £697 per week for older people needing support with memory and cognition.

It is also extremely likely that more adults with learning disabilities could do with social care support than are currently getting it. Although there are no longer any national statistics that directly address this issue, there are a couple of ways to think about it.

First, the information I’ve quoted so far shows that even in the last five years the number of adults with learning disabilities getting social care support has continued to increase. However, the increases we see are nowhere enough to keep up with the likely increase in the number of adults with learning disabilities needing social care support according to population projections. In 2012, a team led by Eric Emerson produced some projections of the number of adults with learning disabilities likely to need social care support up to 2030. Even under the most restrictive funding scenario (with only people with critical or substantial needs getting social care support) we estimated that by 2019 there would be 169,551 adults with learning disabilities needing social care support, compared to the 150,620 adults actually getting long-term social care support in 2018/19.

Second, although it is limited, adult social care statistics also include information on new people coming to the attention of social care services, and what happens to them after a ‘completed episode of short-term care to maximise independence’ (which to my untutored eye looks functionally equivalent to assessment). The graph below shows this information for all adults with learning disabilities aged 18+, from 2014/15 to 2018/19. In terms of what was happening in 2018/19, 3,300 adults with learning disabilities (95% of whom were aged 18-64) came to social services as new clients. Of these, 13% (430 people) were identified as having no needs and therefore requiring no services, and very few (10 people) were identified as self-funders. By far the most common response from social services was to signpost people to universal services or other forms of non-social care support (2,110 people; 64%). Relatively few people (160 people; 5%) went on to get some form of low level or short-term support from social care, with slightly more people (255 people; 8%) going on to get some form of long-term social care support. Very few (35 people; 1%) declined a service that was offered. Over time, there seems to have been a steady increase from 2014/15 to 2017/18 then a particularly sharp increase to 2018/19, almost wholly accounted for by signposting to universal services or other non-social care support. 

Different people I respect have different views on the desirability or otherwise of the patterns shown here – for some it shows social care busily trying to fend off people coming to them for help, for others it shows that social care services are getting better at finding ways to support people retain their independence as citizens without sucking them into the maw of potentially overbearing long-term social care services which people don’t need and might end up being actively unhelpful. Whatever the interpretation of this information, it does show a sharp increase in the number of adults with learning disabilities trying to get some form of social care support.

In terms of the living situations of adults with learning disabilities, from 2009/10 councils have provided a detailed breakdown on where they think adults with learning disabilities aged 18-64 are living. The differences between information up to 2013/14 (on everyone known to councils) and information from 2014/15 (on people getting long-term social care support) are pretty stark here, as most numbers are considerably lower in 2014/15 compared to 2013/14. The graph below is very complicated as there are a lot of categories, but there are a couple of things that stand out for me.

First, by far the most common living situation for adults with learning disabilities aged 18-64 is ‘settled mainstream housing with family/friends’ – i.e. for almost everyone living with family. In 2018/19 this applied to 49,170 people, 37% of all working age adults with learning disabilities getting long-term social care, with numbers rising rapidly (up 10% in the four years from 2014/15). The number of working age adults in some form of supported accommodation, according to these figures, has been rising rapidly but seems to be stalling in 2018/19 at 29,170 people (22% of working age adults getting long-term social care support). The number of people in residential care, after a consistent decline over a number of years, again seems to have stalled in 2018/19 at 21,150 people (16%), while the relatively small number of working age adults with learning disabilities in nursing homes remains fairly static at 1,045 people (1%). The number of people in some other types of support, such as tenancies and shared lives arrangements, has fluctuated from 2014/15 to 2018/19 with few consistent upward or downward trends over time.

In 2017/18 I reported a small but rapidly rising number of working age adults with learning disabilities in various types of obviously temporary accommodation (short-term stay with family/friends, council-provided temporary accommodation and other temporary accommodation), rising by 32% in three years from 1,205 people in 2014/15 to 1,590 people in 2017/18. In 2018/19 this had reduced again to 1,195 people – it is unknown what this substantial fluctuation is about. And the figures reported by social services don’t include most adults with learning disabilities in inpatient services - councils only recorded 405 people in these places in 2018/19, with their reported numbers continuing to drop over time. This number is far fewer than the 2000-3500 number of people reported in NHS Digital statistics recorded by health commissioners or providers – whilst most of the people with learning disabilities in inpatient services will not be directly funded by social care these figures do cast considerable doubt on the reality of policy aspirations to pooled funding and the readiness and willingness of social care services to support people to come out of these places.

Finally, it is important to note that for 6,185 working age adults with learning disabilities getting long-term social support their living situation was unknown to the local authority providing the support – this number had been decreasing but increased again in 2018/19.

How much money are councils spending on social care services for adults with learning disabilities? The graph shows this gross expenditure from 2014/15 to 2018/19, broken down by age band and categories of spending, although it is important to remember that these figures do not include housing benefit (an essential component of supported living arrangements). These figures are not adjusted for inflation, although the squeeze on social care spending has meant that social care inflation has been relatively low in recent years.

A couple of observations. Overall, the amount of social care funding for adults with learning disabilities continues to increase in absolute terms, from £4.98 billion in 2014/15 to £5.82 billion in 2018/19, although an annual inflation rate of 3% would pretty much wipe this increase out. Second, almost the entire social care budget (98.7%) is spent on long-term support rather than short-term support. Third, despite absolute increases in most categories of expenditure (not adjusted for inflation), in 2018/19 there were small absolute reductions in both short-term and long-term ‘other’ community social care support. Finally, social care spending on residential and nursing care for adults with learning disabilities still represents 35.8% of all social care expenditure on adults with learning disabilities.

I know this blogpost is turning into something of an epic (it might be a while before I find the time to post again) but there are two final important issues I want to quickly cover before I finish.

The first of these is variation across local authorities, otherwise known as the postcode lottery. Whatever you choose to look at in terms of social care for adults with learning disabilities, there is massive variation across local authorities in how many adults with learning disabilities they are supporting, what kind of support people are getting, and how much local authorities are spending. Two examples (these are using 2017/18 data, but the picture is the same every year I’ve looked at it) – the number of adults with learning disabilities getting long-term social care support and gross expenditure on social care for adults with learning disabilities. Because local authorities can be very different in how many people live in their area, I have converted these to rates per 100,000 local population.

In the graph below, each bar represents a local authority, arranged from lowest to highest. In the authorities to the left of the graph, they are providing long-term social care for around 200 adults with learning disabilities per 100,000 of everybody in the local adult population. Towards the right-hand end of the graph, this is getting up to 500 people per 100,000 local adult population or in a couple of extreme cases up to around 650 people per 100,000 local adult population.

The next graph has a similar format, but it’s about social care spending on long-term social care for adults with learning disabilities per 100,000 local population. Again, depending where you are living, your council could be spending three times as much per head on long-term social care for adults with learning disabilities than the council next door.

There are good reasons to expect some variation across local authorities in both the number of people with learning disabilities needing social care (things like area deprivation will make a difference) and therefore social care spending, but these variations seem much bigger than that.

The final thing I want to mention is the point that Neil Crowther has made in his recent synthesis review of evidence on deinstitutionalisation throughout Europe – that the statistics I’ve talked about here mainly report on the number of people using, and spending on, specialised services of various kinds. There is much less information about how people experience their lives, and whether people have the opportunity to exercise their rights and live their lives how they want. The final graph below is from the other set of social care statistics released yesterday, the Adult Social Care Survey. This is a major exercise conducted via local authorities every year to survey thousands of adults using long-term social care to gain exactly the kind of information that Neil discusses. The graph below shows the percentage of adults with learning disabilities getting long-term social care in the survey (at least 17,765 people) reporting on their quality of life, how satisfied they were with the services they were getting, how good their health was generally, and about if they felt anxious or depressed on the day. The graph also has comparative information from adults with physical support needs and adults with mental health needs who responded to the survey.

The survey is very carefully designed and conducted, including an easy-read version available to anyone who wants it. I think this graph shows that there are unavoidable limitations to conducting a survey in this way to get this kind of information. First, people with learning disabilities report everything as being much better (this is true across pretty much all the questions in the survey) than other people, which I can’t help thinking is because far more people with learning disabilities get help to complete the survey than other groups. For example, 47.3% of people with learning disabilities completing the survey had help from a care worker, compared to 15.8% of people with physical support needs and 35.2% of people with mental health support needs. Second, for the most part levels of satisfaction etc are pretty high and are not changing much over time. There is a long strand of research suggesting that people adapt to their circumstances, even if their circumstances don’t look great to an outsider, and I am worried that using high levels of satisfaction as the most important indicator of ‘success’ will hide poor (or absent) support and the constrained lives that many people may be living.

I hope that this blogpost is useful in giving an overview of the latest social care statistics as they relate to adults with learning disabilities. Apologies for its epic length – at least I can guarantee that there won’t be another one coming along for a while!

Unexpected item in the inspection area: The CQC and abusive service cultures

I’ve just been listening again to the hearing of the Joint Parliamentary Human Rights Committee, where two members of the Care Quality Commission (CQC) are grilled about their lamentable (to put it charitably) ‘inspection’ practices in relation to Whorlton Hall and St Andrews. One of the repeated refrains of the CQC people (apart from blaming everyone else) is that their inspection methods perhaps aren’t very good at identifying abusive behaviour in inpatient services, due to pesky staff ‘colluding’ in trying to hide their abusive practices (my interpretation and gloss of their words…) and even more pesky inpatients ‘inconsistently’ sometimes reporting abusive practices and their fear of speaking out while at other times reporting to inspectors that they were being treating with dignity. Meanwhile, both people who have spent time as inpatients and family members of people who have been or currently are inpatients say time and time again that when they raise allegations of abuse to the CQC there are ignored or given the brush-off.

I am beyond words in expressing how I feel about this session and the (in)action of the CQC. In this blogpost I just want to very briefly describe some relevant knowledge about service cultures in services for people with learning disabilities that I’ve come across, particularly relating to inpatient services. Then I will take a look at the extent to which I think CQC inspection arrangements are geared up to find abusive service cultures in inpatient units. Some of this is taken from a quick piece of work I did for NHS Improvement a couple of years ago, but the interpretation is all mine…

Firstly there has been a whole programme of research by Christine Bigby, Julie Beadle-Brown and colleagues looking at positive and negative cultures in housing services for people with learning disabilities. For a positive culture there are four overarching dimensions of culture when people living in a house are being supported well: the culture in the house is cohesive, respective, enabling and motivating.

Christine Bigby, Julie Beadle-Brown and colleagues, from careful work spending a lot of time in people’s homes, have drawn out 5 things that distinguish a positive place from a negative place: 1) that staff supporting people actually show the same values that are espoused by senior managers and service brochures; 2) that staff recognise their common humanity with the people they support, and everyone gets on with each other, rather than people being seen as ‘not like us’; 3) that staff recognise that they are there to support the person to live the life they want to live, rather than doing things ‘for’ people; 4) that the people being supported come first, rather than being supported in ways that suit the staff; 5) that staff are open to new people and new ideas, rather than resistant.

This way of describing positive and negative cultures makes a lot of sense to me. What the eagle-eyed among you will have noticed though, is that they don’t describe aspects of cultures that are more actively toxic and abusive. Peter Oakes, Dave Marsland and Caroline White have been working for some years now on identifying and monitoring indicators of the potential abuse of people with learning disabilities in a range of places.

These authors have identified six clusters of early indicators in identifying service cultures and environments in which people with learning disabilities may be at risk of abuse. Three of these clusters are not about service cultures as such, but they are extremely important as things to look out for:

1) The behaviours of people with learning disabilities (changes in people’s behaviour and needs; consistency of people’s behaviour according to the member of staff they are with or the place they are in; people harming themselves or bullying others, showing fear, or engaging in sexualised behaviours)

2) Service design, placement planning and commissioning (agreed care not being provided; lack of available options for people in the service; service design and placement planning)

3) Fundamental care and the quality of the environment (poor support for people with health problems; service dirty and in poor state of repair; people not supported with personal hygiene).

Three clusters identifying early indicators of potential abuse are about service cultures – they can be thought of as extremes of the negative cultures I’ve mentioned above, but that we need to be specifically vigilant about.

1)      The decisions, attitudes and actions of managers at all levels within residential services which may place residents at risk, consisting of 2 clusters (management of the home and the organisation; staff recruitment, deployment and shift patterns). More practical details about what you might look out for are in the table below

2) The behaviours and attitudes of staff that may place residents at risk, consisting of 7 clusters (staff knowledge, skills and actions; staff values and attitudes; staff lack of choice, misuse of power, how the service runs; staff boundaries and inappropriate relationships; staff inconsistency and lack of reliability; staff getting important ideas wrong; staff attitudes and responses to abuse). More practical details about what you might look for are in the two tables below (there’s a lot to look out for here!)

3) Isolation, consisting of 2 clusters (isolation of individuals; defensiveness and lack of openness). Again, more practical details about what you might look for are in the table below.

There is a lot of detail in these tables (in very tiny writing), but I think it’s important to include them because it shows practically how it can be done, and the team producing these indicators have worked with services to spot these cultures early on and do something about them.

These are also the kinds of things that people with learning disabilities in inpatient units and family members are rightly sensitive to and pick up on really quickly. Looking at a few reports from the ever excellent Bringing Us Together and from the National Development Team for Inclusion, people and families time and again discussed toxic, abusive inpatient service cultures where they were spotting exactly the same indicators I’ve just outlined above – the tables below show some of the things people and families said.

This is a lot of stuff, much of it in tiny writing in tables. I think that detail is important to show that:

1)      Looking out for indicators of abusive service cultures is more/different than looking out for not very positive service cultures.

2)      People have been working for a long time on practical ways to spot abusive service cultures, and the experiences of people and families show that they are really good at spotting when something might be seriously wrong.

CQC inspections, though, aren’t set up to proactively examine and find abusive service cultures in inpatient or other places where people with learning disabilities are living (I know I’m referring exclusively to people with learning disabilities rather than also talking about autistic people in this blog, because the stuff I’m talking about has focused on people with learning disabilities, but there is no reason why this doesn’t apply to autistic people in these places too). How?

First, they like paperwork and ‘evidence’. The way that people (including people with learning disabilities, families, and I suspect many visiting professionals) pick up these cultures can often be dismissed by regimes like the CQC as ‘soft’, based on intuition, and not within the realm of ‘proper’ evidence. Many people who try and alert the CQC report this sense of what they have to say being dismissed. Well – what all these people experience is real and is tapping into something vital that the CQC have admitted they are missing.

Second, in principle they wait until things are so bad they are unignorable, rather than seeking to proactively spot abusive cultures early and nip them in the bud.

Third, in inspections of specialist mental health services (including specialist inpatient services for people with learning disabilities and/or autism), the CQC inspects services using their standard framework (Care Quality Commission, 2015a, 2015b). The inspection process is designed to ask five fundamental questions.  In Appendix B to the provider handbook (Care Quality Commission, 2015b) each of the five questions is broken down into between three and seven Key Lines of Enquiry (KLOEs), with associated prompts for each one. The five fundamental questions are as follows. Are services:

1)      Safe? By safe, we mean that people are protected from abuse and avoidable harm (5 KLOEs).

2)      Effective? By effective, we mean that people’s care, treatment and support achieves good outcomes, promotes a good quality of life and is based on the best available evidence (7 KLOEs).

3)      Caring? By caring, we mean that staff involve and treat people with compassion, kindness, dignity and respect (3 KLOEs).

4)      Responsive? By responsive, we mean that services are organised so that they meet people’s needs (4 KLOEs).

5)      Well-led? By well-led, we mean that the leadership, management and governance of the organisation assures the delivery of high-quality person-centred care, supports learning and innovation, and promotes an open and fair culture (5 KLOEs).

Although the Safe? Question should be proactively looking out for early indicators of abusive cultures, the Key Lines of Enquiry questions are much more focused on looking for positive and negative service cultures, rather than taking seriously how to find an abusive service culture. Care and Treatment Reviews in some ways are similar, with the added proviso that their marginal status means that they are even less likely to uncover and be able to do something about abusive service cultures.

No big conclusion really, except to say that for the CQC to express surprise at their inspection regimes not being able to find abuse in inpatient service cultures is patent nonsense. Given the serial nature of abusive practices being exposed (largely by the media) in inpatient units for people with learning disabilities and autistic people, a responsible regulator should have put its house in order well before now. All the stuff I’ve mentioned here is readily available to an organisation like the CQC, and people would have bent over backwards to help. My rating:

·        Safe: Inadequate

·        Effective: Inadequate

·        Caring: Inadequate

·        Responsive: Inadequate

·        Well-led: Inadequate

For those of you interested, here's a list of references of stuff I've referred to in this blog.

Beadle-Brown J, Bigby C, Bould E. Observing practice leadership in intellectual and developmental disability services. Journal of Intellectual Disability Research 2015; 59, 1081-1093.

Bigby C, Beadle-Brown J. Culture in better performing group homes for people with intellectual disability at severe levels. Intellectual & Developmental Disabilities 2016; 54, 316-331.

Bigby C, Beadle-Brown J. Improving quality of life outcomes in supported accommodation for people with intellectual disability: what makes a difference? Journal of Applied Research in Intellectual Disabilities 2018; 31, e182-e200.

Bigby C, Knox M, Beadle-Brown J, Clement T, Mansell J. Uncovering dimensions of culture in underperforming group homes for people with severe intellectual disability. Intellectual & Developmental Disabilities 2012; 50, 452-467.

Bigby C, Knox M, Beadle-Brown J, Clement T. ‘We just call them people’: positive regard as a dimension of culture in group homes for people with severe intellectual disability. Journal of Applied Research in Intellectual Disabilities 2015; 28, 283-295.

Bringing Us Together. Stronger Together – Family Event. 2016a. Bringing Us Together.

Bringing Us Together. Stronger Together – Families talk about their experience of independent hospitals. 2016b. Bringing Us Together.

Care Quality Commission (2015a). How CQC regulates specialist mental health services. Provider handbook. London: Care Quality Commission.

Care Quality Commission (2015b). How CQC regulates specialist mental health services. Appendices to the provider handbook. London: Care Quality Commission.

Clare ICH, Madden EM, Holland AJ, Farrington CJT, Whitson S, Broughton S, Lillywhite A, Jones E, Wade KA, Redley M, Wagner AP. ‘What vision?’: experiences of team members in a community services for adults with intellectual disabilities. Journal of Intellectual Disability Research 2016; early online.

Gillett E, Stenfert Kroese B. Investigating organizational culture: a comparison of a ‘high’ – and a ‘low’ – performing residential unit for people with intellectual disabilities. Journal of Applied Research in Intellectual Disabilities 2003; 16, 279-284.

Hatton C, Rivers M, Mason H, Mason L, Emerson E, Kiernan C, Reeves D, Alborz A. Organizational culture and staff outcomes in services for people with intellectual disabilities. Journal of Intellectual Disability Research 1999; 43, 206-218.

Hogg J. Protecting adults with intellectual disabilities from harm and abuse: international perspectives. Journal of Policy & Practice in Intellectual Disabilities 2013; 10, 187.

Humphreys L, Bigby C, Iacono T, Bould E, Humphreys L. Development of a scale to measure organisational culture in group homes. Journal of Intellectual Disability Research 2016; 60, 685.

Marsland D, Oakes P, White C. Abuse in care? The identification of early indicators of the abuse of people with learning disabilities in residential settings. The Journal of Adult Protection 2007; 9, 6-20.

Marsland D, Oakes P, White C. Early indicators of concern in residential support services for people with learning disabilities: The Abuse in Care? Project. 2012. Hull: University of Hull Centre for Applied Research and Evaluation.

Marsland D, Oakes P, Bright N. It can still happen here: systemic risk factors that may contribute to the continued abuse of people with intellectual disabilities. Tizard Learning Disability Review 2015; 20, 134-146.

National Development Team for Inclusion. Informing the service model: A report about the experiences of people with learning disabilities and families. 2015. Bath: NDTi.

NHS England. Care and Treatment Reviews: Policy and guidance. 2017. Leeds: NHS England. https://www.england.nhs.uk/publication/care-and-treatment-reviews-policy-and-guidance/ [accessed 26 June 2017].

Quilliam C, Bigby C, Douglas J. Paperwork in group homes for people with intellectual disability. Journal of Intellectual & Developmental Disabilities 2015; 40, 286-296.

White C, Holland E, Marsland D, Oakes P. The identification of environments and cultures that promote the abuse of people with intellectual disabilities: a review of the literature. Journal of Applied Research in Intellectual Disabilities 2003; 16, 1-9.

The Great Disdain

I’ve been trying to digest the welter of reports dropping about autistic children and children with learning disabilities being incarcerated, autistic adults and adults with learning disabilities being put into solitary confinement, and people with learning disabilities being denied a quarter century of life compared to other people. These have all been rushed out in advance of a BBC Panorama programme due to air tomorrow, presumably to share out the outrage between them and get their media lines sorted. I’ve done a lot of blogposts going through the details of these kinds of reports before, and there will be some of that in this typically over-long post, but through these repeated cycles of reports, media frenzy, ‘lessons learned’ and ‘action plans’ (not to mention the blogposts I write) I’ve come to a sense of pointlessness about what these are achieving.

Without wanting to get overly Wolfensberger about this, I can’t help feeling that we’re at a point where those in a position to champion the human rights and flourishing of people with learning disabilities and autistic people to the benefit of society as a whole fundamentally wish that people with learning disabilities and autistic people just didn’t exist. This isn’t the same as saying I think those people wish people with learning disabilities and autistic people were dead, it’s just that people with learning disabilities and autistic people are not thought of at all, made invisible, and vaguely thought of as burdens and obstructive to the ways that politicians and others want society to run (unless they can be turned into exploitable commodities for profit). When the human consequences and end-points of this disdain become visible, through concerted and exhausting efforts on the part of people, families and the media, there is an almost visible shrugging of the shoulders and exasperated side-eyeing in responses to ‘fix’ the ‘problem’. I’m now seeing this all over the place (might just be my less than rose-tinted glasses though):

·        Introduce pre-natal screening for Down syndrome.

·        Design an entire school system modelled on a minor 1950s public school, forget completely about disabled children, then idly wonder why these children are excluded and off-rolled from mainstream schools and having an increasingly rough time.

·        Talk about social care for adults exclusively in terms of older people – if mentioning younger adults with learning disabilities or autistic younger adults always mention the huge proportion of social care spending going on these groups of people and the increasing ‘burden’ on local authorities they represent. At the same time, ensure that the number of adults with learning disabilities and autistic adults getting adult social care does not keep pace with the number of people who might need social care.

·        Decide not to have a comprehensive national policy or strategy about supporting people with learning disabilities, and disband advisory groups of people with learning disabilities and family members.

·        Have a punitive benefits system that enforces people with learning disabilities and autistic people into a perpetual cycle of ‘looking for work’ activities, while ignoring cost-effective ways of supporting people into and maintaining actual paid employment.

·        Degrade ways of supporting people that would encourage people’s lives to flourish.

·        Ignore international conventions that the UK has signed and ratified (e.g. the UN Convention on the Rights of Persons with Disabilities), and contemptuously fend off UN monitoring of how the UK is doing with respect to the rights of disabled people.

·        Have health services that frequently discriminate against people with learning disabilities and autistic people, sometimes breaking the law to do so.

Look at the consequences of all this disdain – people being denied a quarter century of life compared to other people, people not being educated to equip them for a flourishing life, people on antipsychotic medication and incarcerated, sometimes from an early age, much less of a chance for living, loving and party-going. And (after delay and obfuscation), come up with woeful ‘fixes’ to deal with the ‘problem’, rather than stopping to consider the underlying reasons why people can end up in the situations they do. All these reviews, reports and activities (including ones announced today by the CQC, the Department of Health and Social Care and NHS England/NHS Improvement) increasingly seem to me part of a cycle of protracted fending off. Just get through the next news cycle and it will all die down.

Minimise

Even when charged with making the situation of people with learning disabilities and autistic people visible, the ways that organisations do this show the traces of this urge to invisibility, this fending off of the reality of people’s lives and deaths. Some examples:

As with previous reports (Mazars, last year’s Leder report), both the CQC and NHS England moved the publication dates of the CQC and Leder reports (in this case moved forward) to minimise the attention that people would pay to them – previously both organisations (and a government minister) had said that the reports couldn’t be published now because of, variously, elections coming up or the need for ‘scrutiny’.

Both the Children’s Commissioner and CQC reports talk extensively about people’s “vulnerability” and “complex needs”, as if these are fixed properties of individual people that in part have caused their incarceration (services and professionals are at a loss as to how to deal with such complexity…). Vulnerability is a function of a threatening environment, and complex needs are a statement of a lack of understanding.

There is across these reports both a fetishisation of numbers to construct “the scale of the problem”, and a concerted attempt across service providers and NHS England to minimise them. Don’t get me wrong (and I would say this, wouldn’t I?), numbers can be useful as part of a picture, but to turn an arbitrary number into a target does all sorts of violence to the intention underpinning that target. More fundamentally, presenting “the scale of the problem” can implicitly endorse the idea that if smaller rather than larger numbers of people experience fundamental abuses of their human rights, that is somehow OK – if the CQC report had found five people in long-term segregation would that be OK? One person? One person experiencing human rights abuse is one too many, and the fact that this is both possible and happening (with the whole panoply of specialist services, commissioning, policy, regulation and so on) is the logical end-point of a systemic (which, as Mark Neary points out, is a depersonalising cloaking term for a bunch of people making decisions) wish that people with learning disabilities and autistic people didn’t exist.

All over the place, the numbers generated and relied on in these reports are themselves the end-product of deeply discriminatory practices designed to minimise the ‘problem’. For example, the CQC report says that service providers identified to them 62 people with learning disabilities or autistic people in long-term segregation, but on their visits so far (which are not complete) the CQC found another 9 people in long-term segregation where the service provider apparently hadn’t realised that this was their situation. Four out of the 89 providers the CQC contacted didn’t bother to reply – to a review commissioned by the Minister for Health and Social Care and being done by the regulator.

The Assuring Transformation (AT) dataset, which NHS England uses to derive ever more gerrymandered claims of percentage reductions in the number of people with learning disabilities or autistic people in inpatient units, can be subject to all sorts of methods to reduce the numbers without necessarily making any fundamental changes:

·        re-registering specific inpatient units as residential care homes;

·        building ‘step-down’ or similar places in the grounds of psychiatric hospitals or other similarly remote places that don’t count in the numbers;

·        re-classifying people in inpatient units so they are no longer identified within the service as being autistic or having a learning disability;

·        making sure that people coming into inpatient systems get a different label rather than one that would put them into the AT figures;

·        for some providers, simply report far fewer people with learning disabilities or autistic people in inpatient services within AT than are reported in the other dataset of people in mental health inpatient services generally, the MHSDS. In February 2019, 115 people with learning disabilities or autistic people were reported in AT to be in Cygnet inpatient services, compared to 295 people in the MHSDS. Equivalent figures for Elysium Healthcare are 85 people reported in AT compared to 360 people in the MHSDS; for St Andrews it’s 180 people reported in AT compared to 360 people reported in the MHSDS;

·        discharge a person to an inadequate place to live (tick the AT community discharge box), then when it breaks down leave generic mental health services (not usually counted in AT) or the criminal justice system to pick up the pieces.

So it’s no surprise that for February 2019, AT reports that there were 2,310 people with learning disabilities or autistic people in inpatient services at the end of the month, compared to 3,605 people reported in the MHSDS. And even these figures are a minimisation – including people admitted to inpatient units during the month, some of whom leave again in the same month, AT reports that 2,475 people spent some time in an inpatient unit in February 2019, compared to 4,445 people reported in the MHSDS. Across the course of a year, how many people with learning disabilities or autistic people spend some time in an inpatient unit (whether ‘specialist’ or a generic mental health inpatient unit)? We don’t know.

Both the CQC and Children’s Commissioner reports make much use of information on ‘restrictive interventions’ (including restraint, ‘long-term segregation’ and other practices). This is reported by mental health service providers in the MHSDS and again, horrific though the reported figures are, they are a severe under-reporting. Most of the major independent sector providers of inpatient services for people with learning disabilities or autistic people report zero (yes, zero) restraints being used with anyone with learning disabilities or autistic people in their services. The organisations reporting zero restraints in February 2019 (when the CQC review had already started and was widely publicised) include: Cambian Childcare Ltd; Elysium Healthcare; Jeesal Akman; Partnerships in Care; The Priory Group; and The Huntercombe Group. Extreme invisibility.

Alongside these frantically minimised numbers, all the reports tell stories of individuals. As Katherine Runswick-Cole has pointed out, there is an ethical issue in getting people to tell their stories, publicly, when there is no prospect of fundamental change. Over time I’m also becoming increasingly wary of senior people congratulating themselves on their capacity to be ‘moved’ (I confess I have done this myself) by people’s stories if there is no evidence of respect, equality or action.

And as for the Leder report, when it comes to reporting the deaths of people with learning disabilities or autistic people, the urge to deny, minimise and deflect is equally strong. The original Confidential Inquiry reported that the deaths of 37% of people with learning disabilities were amenable to decent quality health care. In the Leder report (which is a voluntary programme relying on reviews conducted by staff who are not independent of the services where people died), reviewers reported that 8% of people had received care that fell so far short of good practice that it significantly impacted on their well-being or directly contributed to their cause of death, and in only 1.9% of completed reviews had reviewers concluded that the person’s death was potentially avoidable. This is without mentioning the fewer deaths of people with learning disabilities being reported to coroners (31% vs 43% of people generally), the 26% of people with learning disabilities being on antipsychotic medication at the time of their death, the 15 people for whom learning disability was written on their death certificate as an underlying cause of death, or the 19 people for whom learning disability or Down syndrome was written as the rationale for a Do Not Resuscitate Order.

The things that dreams are made of

For me, this disdain needs to be tackled head-on. This might be big, but I don’t believe it’s especially complicated – if anything, it might be less complicated than what currently exists to try and pretend people with learning disabilities and autistic people don’t really exist. The conditions that make discrimination more likely also need to be fundamentally addressed. Ways for all children to be educated and spend time together, in whichever ways work for every child and work for those close to them. People with learning disabilities and autistic people taking on positions of power. Education and economics that support everyone to flourish in whatever ways suit. Or, in the words of the Human League:

Everybody needs love and adventure
Everybody needs cash to spend
Everybody needs love and affection
Everybody needs two or three friends

These are the things
These are the things
The things that dreams are made of

And, if things have got worse, this to me means that they are not inevitable and can change for the better. Pie in the sky, typical academic waffle remote from the realities and ‘complexities’, and so on. Yes, and unashamedly so. I hope to be a tiny part of the big, broad social movement that Sara Ryan and Katherine Runswick-Cole have said is needed. To use a horrible phrase, if I’m a human, then I have skin in this game.

Transforming Care report card 4: Leaving inpatient units

This blogpost is the final one of four looking at the Transforming Care programme through the prism of the national statistics regularly produced by the ever excellent @NHSDigital, updating a series ofblogposts I wrote towards the end of 2017.

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

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

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

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

The first and most obvious question is whether people in inpatient services have a planned date to leave (I will pick up on the complications of what ‘leaving’ actually means later in this post). The graph below shows the proportion of people in inpatient services with a planned date for transfer, from March 2015 to September 2018 (according to Assuring Transformation data). There was a worrying drop in the proportion of people with a transfer date in 2016, but by September 2018 well over half of people (58%) had a planned transfer date, the highest proportion recorded to date.

 

A date might be ‘planned’, but how distant in time is the planned transfer? The graph below shows this information according to Assuring Transformation data, from March 2015 through to September 2018. Consistent with the earlier graph, the proportion of people without any planned date to leave at all increased hugely in 2016, with the position recovering throughout 2017 and 2018. By September 2018, 13% of people had a planned transfer date within the next 3 months, 17% had a planned transfer date between 3 and 6 months ahead, and 10% of people had a planned transfer date between 6 months and a year ahead. For 9% of people their planned date to leave was between 1 and 5 years ahead, and for 6% of people their planned date to leave was overdue.

So far, the statistics look like there is a push from Transforming Care that is having an impact on the number of people with plans to leave, although this push does not seem to have massively accelerated as the finish line for the policy comes closer. Do we know anything about the plans themselves?

Well, if people are leaving the inpatient unit to go home in some sense then my expectation would be that the person’s local council should be aware of the plan to leave. The graph below shows information from Assuring Transformation based just on those people with a plan to leave – for this group of people, are councils aware of the plan? Over time, the proportion of people with a plan where their council is aware of that plan continues to drop substantially – from over two thirds (69%) in March 2015 and March 2016 to less than half (49%) in September 2018. Just as worrying is that in September 2018, for two fifths of people (40%) it wasn’t known whether the council was aware of the plan or not, a huge increase from March 2015 (7%). At the very least this suggests that the close working between health and social care envisaged as central to Transforming Care is less than universal.

  

There are other signs too of potential haste in making plans to leave. The Assuring Transformation statistics report whether a range of people (the person themselves, a family member/carer, an advocate, the provider clinical team, the local community support team, and the commissioners) have agreed the plan to leave. For those people with a plan to leave, the graph below reports the proportion of their plans that have been agreed by different people, from March 2016 to September 2018. Over time, the proportion of plans agreed by anyone and everyone potentially involved has plummeted. Only two-fifths of plans (40%) had been agreed by the person themselves in September 2018, compared to almost two thirds of people (64%) in March 2016. Even bigger drops are reported for the proportion of family/carers (from 60% to 35%) and advocates (from 64% to 38%) agreeing the plans.

By September 2018, transfer plans had been agreed by a minority of provider clinical teams where the person was supposed to be moving to (from 83% in March 2016 to 45% in September 2018), a minority of local community support teams in the area the person was supposed to be moving to (from 69% to 41%) and a minority of those commissioners who are reporting the information the graph is based on! (from 83% to 45%). To what extent are these actually feasible and sustainable plans that will result in a better life at home for people in inpatient services, and what are their chances of breaking down?

The final graph in this blogpost series is one of the most important – how many people have actually been transferred from inpatient services, and where have they gone? The graph below adds up monthly ‘discharges’ from inpatient services in the Assuring Transformation dataset for three periods of time; a year from October 2015 to September 2016, a year from October 2016 to September 2017, and a year from October 2017 to September 2018. It’s also one of the most complicated graphs in this series, so I’ll go through it in a bit of detail.

The first thing to say is that overall the number of people ‘discharged’ from inpatient services has increased, from 2,045 people in 2015/16 to 2,265 people in 2017/18.

Of the people who have been ‘discharged’, in 2017/18 almost a quarter of people (535 people; 24%) moved to independent living or supported housing. Another fifth of people (490 people; 22%) moved to their family home with support, making nearly half of everyone ‘discharged’ from inpatient services.

Where did everyone else go? For almost a quarter of people in 2017/18 (525 people; 23%) their ‘discharge’ was actually a transfer to another inpatient unit, confirming the picture of ‘churn’ of people passed around inpatient services found elsewhere in this series. Hundreds of other people (375 people; 17%) moved into residential care. Given that some inpatient services have re-registered themselves as residential care homes with the CQC and a panoply of 'step-down' and other services are registered as care homes, it is unclear to what extent people are leaving an inpatient service to move somewhere more local and homely, moving somewhere very similar to where they were, or not actually moving at all.

In 2017/18, there were also another 235 people (10%) who moved to an ‘other’ location – again it is unclear what these ‘other’ places are, but are they wildly different from where people were moving from? Finally, 50 people (2%) were in the puzzling category of ‘no transfer currently planned’ while having apparently already been transferred.

There are also signs of some changes over time in where people are being ‘discharged’ to. Increasing numbers of people are being ‘discharged’ direct to another inpatient unit, or to ‘other’ places that may well be varieties of relatively restrictive places described as ‘step-down’, ‘rehab’ or similar. Fewer people are moving to independent living homes or to residential care, and increasing numbers of people are moving to supported housing or back to their families with some form of added support.

So in this final post in the series, there are definite signs that Transforming Care is exerting pressure for more people to have plans to leave their current inpatient services, and almost half of those people who are leaving are moving to independent or supported living or back to the family home. There are real worries about the feasibility and sustainability of some of these plans, and the extent to which many people ‘leaving’ inpatient services are actually leaving for something radically different or being churned around a system that doesn’t call itself an inpatient service system but looks mighty similar to the people living within it. The fact that for almost a quarter of people being 'discharged', they are actually being moved to another inpatient unit, is to my mind something of an indictment of the inpatient service 'system' and Transforming Care's lack of fundamental impact upon it.