Impatient inpatient

The latest monthly statistics on the number of people with learning disability and/or autism in specialist inpatient units has been released today by the Health and Social Care Information Centre (HSCIC, see http://www.hscic.gov.uk/catalogue/PUB19062 ). Six months ago I wrote a blogpost on these inpatient statistics (see http://chrishatton.blogspot.co.uk/2015/05/one-step-beyond-what-do-latest.html ). At the time the statistics suggested the number of people in these inpatient units was not decreasing, but commissioners reported that 37% of people had a discharge date within the next 6 months. I foolishly wrote that if this prediction was right, we should see a significant dent in the number of people in inpatient units in 6 months’ time. What’s happened?

Well, on a nerd point, one big thing that’s happened is that the HSCIC have continued to try and improve the quality of the data they have. This leads to some complications when interpreting trends. This graph from the HSCIC executive summary neatly shows the problem.

The dark blue bars show the number of people in learning disability inpatient services steadily increasing over time (from 2,445 people in April 2015 to 2,620 people in October 2015) – this is based on the number of people that commissioners reported at the time. There are two reasons why this increase is hard to interpret though.

First, over time more CCGs are getting round to actually reporting any information to HSCIC (not like it’s a national priority or anything). In April 2015 the figures were based on returns from 167 commissioners (45 commissioners didn’t provide any information/updates, and 7 commissioners apparently didn’t have anyone in learning disability inpatient services). By October 2015, 189 commissioners were submitting information (26 commissioners still didn’t submit any information that month, and mysteriously the number of commissioners without anyone in inpatient services had dropped to 4). So – more commissioners reporting would suggest bigger numbers of people reported to be in inpatient services over time.

The second issue is in the light blue bars in the graph. As well as reporting the number of people for that month, commissioners can retrospectively report people in inpatient services that they didn’t report at the time - presumably people they’d only just found out about. These numbers are reported in the light blue bars. For April 2015, this adds 240 people (10%) to the number of people reported at the time. Each month, more and more retrospective people are added to the numbers, sometimes from several months back.

This means that we can’t interpret the overall numbers of people reported with learning disabilities in inpatient services as reducing over time either. Although the headline numbers drop from 2,685 people in April 2015 to 2,620 people in October 2015, by next April it’s possible that commissioners will have retrospectively added something in the order of 200-300 people to the October 2015 numbers.

Bearing all these caveats in mind, what is clear is that there has been no really significant drop in the number of people with learning disabilities in inpatient units over the past six months.

Most of the rest of the information in the HSCIC data tables is based on information submitted at the time by commissioners (so the dark blue line in the graph), which increases over time, so any changes over time have to interpreted in the light of this general ‘inflator’. Overall, the pattern is of no real change from April to October 2015, despite Care and Treatment Reviews and the nascent Fast Track Sites. For example:

·        The number of people aged under 18 in inpatient services (120 people in April; 135 people in October) – surely a priority?

·        The number of people with neither learning disabilities nor autism in inpatient services (90 people in April; 105 people in October) – why?

·        The number of people in inpatient settings that are not ‘secure’ (1,105 people in April; 1,190 people in October) - which you might expect would be the first group where you would see a reduction in numbers?

·        The number of people in inpatient settings that are not CQC compliant (280 people in April; 275 people in October) – where are the commissioners?

·        The number of people in inpatient services that are not subject to the Mental Health Act (305 people in April; 315 people in October);

·        The average number of days that people had spent in their current inpatient service (from an average 1,107 days in April to an average 1,118 days in October – that’s just over three years);

·        The average number of days in total that people had continuously spent in inpatient services, including transfers between different units (from an average of 1,894 days in April to an average of 1,942 days in October – that’s well over five years).

There are, however, some trend-buckers (have to be careful how I say that), all of which are going in the wrong direction:

·        The number of people in inpatient services who last had a review between 6 months and a year ago (up from 625 people in April to 965 people in October);

·        Even worse, the number of people in inpatient services who last had a review over a year ago (up from 30 people in April to a whopping 475 people in October);

·        The number of people in inpatient services who are reported to be ‘not dischargeable’ (up from 555 people in April to 655 people in October);

·        The number of people in inpatient services who do not have a planned transfer date (up from 1,290 people in April to 1,540 people in October).

There are some other worrying snippets that are hard to square with the latest NHS England/LDA/ADASS strategy “Building the right support”, more widely known I think as “Homes not hospitals” (see https://www.england.nhs.uk/wp-content/uploads/2015/10/ld-nat-imp-plan-oct15.pdf ).

First, only 575 people in inpatient services in October were reported to have a plan involving moving to ‘the community’ (this includes varieties of supported living and living with families), with a further 390 people having a plan to move to residential care. Most of the rest of people with a transfer plan (and bearing in mind that these plans don’t have to have discharge dates attached), have a plan to move to another variety of inpatient service.

Second, the most common ‘diagnostic category’ on admission to an inpatient unit was reported to be ‘learning disability’ (995 people in October 2015) – surely this should not be sufficient to get you into an inpatient unit?

Finally, there were 860 people in October 2015 where the local authority was not aware of a planned transfer to their local area. This may be because many people being ‘transferred’ are actually being transferred to other inpatient services, but it’s worrying in the light of the latest social care statistics that local authorities only report supporting 490 adults with learning disabilities in inpatient settings (see http://chrishatton.blogspot.co.uk/2015/11/social-care-its-not-complicated-any-more.html ). Despite the LGA/ADASS/NHS England strategy making much of its invitation to pool budgets across health and social care, a 'transformation fund' and a promise of dowries for those living in inpatient services for 5 years or more, it’s doubtful to me whether under the cosh local authorities are going to play.

I fear more Daisies on the horizon, a “home” for people for whom “living at home is not an option” (see http://www.awp.nhs.uk/news-publications/trust-news/2015/october/new-service-will-bring-vulnerable-adults-back-home-to-wiltshire/ ). As the Director of Quality for Wiltshire CCG describes it:

“This innovative service aims to provide individualised care and support for Wiltshire residents who have a complex learning disability with a mental health condition or display behaviours that challenge. This is a local residential setting which will encourage individuals to maintain their family relationships, build a fulfilled life through participation in the community and access mainstream services when required to ensure that their health and social care needs are met.” (see http://www.wiltshireccg.nhs.uk/news/new-learning-disabilities-service-to-launch-in-wiltshire )

This is a nine-bedded ‘home’ being built in the grounds of a psychiatric hospital in Devizes, pretty central in the county but still three-quarters of an hour by car from the county town, Salisbury (going by public transport will take you an hour and a half, if you’re lucky). It’s called Daisy because its floor plan looks like a daisy, as can clearly be seen here.

I have nothing else to say.

We don't need no consultation

Lately, I find myself turning more and more to the Devil’s Dictionary by Ambrose Bierce (a late 19^th century American rabble rousing journalist and writer) – see http://www.thedevilsdictionary.com/  for an online version. On the day the Department of Health published its response to their consultation “No voice unheard, no right ignored”, I found this Devil’s Dictionary entry:

Consult, v.i. To seek another’s approval of a course already decided on

The sad thing this, applying this to the Department of Health consultation response feels like a bit of a compliment, unless ‘the course of action already decided on’ includes ‘doing as little as possible’. This blogpost won’t be a comprehensive look at the consultation response (can I call it NVUNRI, which any fan of Shooting Stars will know how to pronounce) – others are better placed than me to do this well and it has been handily summarised by @AndyMcNicoll…

Instead, this blogpost will contain some random reflections, in particular doing a bit of good ol’ comparing and contrasting (those student essays burn deep…) with the consultation process and response for Valuing People Now. Valuing People Now (VAPENOW?), let’s remember, is only six years old, and has never to my knowledge been officially superseded by any overarching policy for (with?) people with learning disabilities since.

A declaration of interest here – at Lancaster University we analysed the responses to the Valuing People Now consultation – although my beef isn’t largely with the way the NVUNRI has been analysed and reported (this was also done by an independent agency, The Evidence Centre). Instead my beef is with the half-hearted way in which the Department of Health ‘promoted’ the consultation, and the political uses to which the consultation has been put.

The Valuing People Now consultation (see here for the report analysing what people said http://webarchive.nationalarchives.gov.uk/20130107105354/http://www.dh.gov.uk/prod_consum_dh/groups/dh_digitalassets/documents/digitalasset/dh_093362.pdf ) gained in total 2,009 useable responses, including: 730 from people with learning disabilities; 407 from family members; 375 from professionals; and 375 from ‘others’. The report analysing the NVUNRI consultation (see here https://www.gov.uk/government/uploads/system/uploads/attachment_data/file/475153/summary_of_responses_acc.pdf ) gained 468 responses, of which ‘half’ were from people with learning disabilities and families, which a maximum of 389 responses to any individual question. Clearly, the Department of Health didn’t put nearly as much effort into encouraging people to give their opinions this time around.

The numbers of people responding to the NVUNRI consultation start to look perilously small, particularly when they are broken down into the views of different groups of people who may have different perspectives (people with learning disabilities vs large voluntary sector organisations, for example). Only the consultation analysis, and DH’s consultation response, doesn’t do this. Although we could have done a much better job of the Valuing People Now consultation analysis, particularly in terms of including people with learning disabilities and family members in the analysis, we did feel it was crucial to represent the views of people with learning disabilities, family members, and professionals separately.

Instead, throughout the DH response there is a general air of ‘some people said this, other people said that’, which is used to justify inaction or a bit more pondering. Well, which people said this and which people said that? Who is more important to listen to? What about doing what’s right?

Whatever our collectively jaundiced views on government rhetoric, the shrinkage of ambition from Valuing People Now (see http://webarchive.nationalarchives.gov.uk/20130107105354/http://www.dh.gov.uk/prod_consum_dh/groups/dh_digitalassets/documents/digitalasset/dh_093375.pdf ) to NVUNRI (see https://www.gov.uk/government/uploads/system/uploads/attachment_data/file/475155/Gvt_Resp_Acc.pdf ) is striking, even in the ministerial forewords - always a good indicator of whether the civil service machinery is signed up to a policy. Words are cheap (a lesson I know well!) but compare and contrast these snippets from the forewords – (1) is from Valuing People Now and (2) is from NVUNRI:

1)      People with learning disabilities are entitled to the same aspirations and life chances as other people.

2)      Our vision of a civilised society is one in which we take more responsibility for ourselves and our neighbours as part of thriving communities working together, and with less dependence on remote bureaucracies.

1)      But although we have made real progress, there is still a lot to do – and that is why we are restating our commitment to leading change to transform people’s lives and opportunities.

2)      One area where we are still not making enough progress to realise our vision is for those with learning disabilities, autism and mental ill health.

1)      This Government is determined to deliver equality and independent living for all disabled people.

2)      Our aim is that people lead as fulfilling and independent lives as they can, and that they have the support to live independently when possible.

1)      Moreover, we recognise that people with learning disabilities are among the groups most often excluded from society. That is why we have made it a priority across government to support more people with learning disabilities into real jobs and settled homes.

2)      For some people, being in employment will be a key indicator of success.

1)      The strategy and the delivery plan which is published alongside it set out the action we plan to take over the next three years, working with people with learning disabilities, their families and carers and with other partners.

2)      That is why you will find that this response is phased so that we can make progress urgently by building on existing momentum and implementing change quickly as well as setting out a longer term plan that will tackle some of the most difficult and complex challenges.

1)      The strategy focuses on what needs to be done at all levels to deliver the vision of equality and transformed lives for everyone.

2)      The package of proposals we set out here is intended to enable system-wide changes that make it easier to do the right thing for people and their families.

1)      If people with learning disabilities and their carers are to have the same opportunities as other people in society and to lead a fulfilling life, we need to improve their access to the whole range of public services.

2)      Many people and organisations at all levels have key parts to play in making our vision happen. At the local level, Health and Wellbeing Boards need to ensure they have good plans to tackle the challenges ahead.

1)      It means taking a human rights-based approach.

2)      As a country, a key measure of our success will be how we care for the weakest and most vulnerable in our communities.

To be honest, I feel a bit torn about presenting these comparisons – perhaps the replacement of overblown rhetoric with a bit of becoming modesty about doing practical, achievable stuff within a realistic timeframe is a good thing? Well, I’d be more convinced about this if there was a convincing, practical plan on the horizon. For all the consultation response’s grand talk about Implementation Phases 1, 2 and 3 (although they’re not sequential, you understand?):

·        Implementation Phase 1 seems to be mainly corralling stuff that is already happening (some of this is good stuff that’s worth doing, but timescales are not attached), although the DH should have learned from the Winterbourne View saga that ‘guidance’ rarely has the Cillit Bang effect on commissioners and services already under the cosh and past caring what the government tells them to do;

·        Implementation  Phase 2 is waiting to see whether any fiddling with the Mental Health Act will be recommended to the government from the Law Commission; and

·        Implementation Phase 3, “which explores more radical solutions to longer-term issues, as well as ongoing monitoring and review, and a commitment that the Government will intervene further, including through legislation if necessary, if the improvements sought continue not to be realised in practice.”

Implementation Phase 3 is curious, a kind of “You don’t feel well? Come back and see me when it’s developed into a full-blown health crisis and then we might do something” vibe. This doesn’t come close to understanding the reality of the lives of so many people with learning disabilities, how this is likely to be getting worse rather than better, and the urgency of doing something radical about it now (#LBBill anyone? https://lbbill.wordpress.com/ ).

It also doesn’t seem to realise that the information the government is collecting that could be used to ‘monitor’ the situation is getting worse rather than better in relation to people with learning disabilities (at least, the information that is made publicly available). For example, less information than in previous years can be specifically examined for people with learning disabilities regarding safeguarding referrals and their consequences and Deprivation of Liberty Safeguarding processes. There is no specific publicly available information about people with learning disabilities at all that I can find in DWP statistics (I would love to hear that I’m wrong on this). Significant numbers of commissioners and local authorities don’t bother to provide information on important policy priorities, such as the number of people with learning disabilities in inpatient services. People with learning disabilities are rapidly disappearing from official sight (and from a responsibility to be supported), both within education and adult social services (see http://chrishatton.blogspot.co.uk/2015/11/the-disappeared.html ). And the DH have not had the commitment to drive through mandatory reporting of deaths of people with learning disabilities in services, surely the most fundamental ‘monitoring’ indicator there is.

It just doesn’t feel enough.

Chocolate fireguards

Sorry – more new depressing statistics relating to social care and people with learning disabilities to share with you. This relates to the Safeguarding Adults Return – from 2013/14 the successor to the Abuse of Vulnerable Adults datasets (such charming titles). These basically report the number of people referred to social services for safeguarding reasons relating to different types of potential abuse, who made the referral, who the alleged perpetrator was, the nature of the alleged abuse, whether the alleged abuse was substantiated, and what (if anything) happened as a result.

Up to 2012/13, information breaking all these things down specifically for people with learning disabilities was publicly available. A full report on this information is available in this extremely long report (Section 9 https://www.improvinghealthandlives.org.uk/securefiles/151106_1118//People%20with%20learning%20disabilities%20in%20England%202013.pdf ) with an easy read summary here (https://www.improvinghealthandlives.org.uk/securefiles/151106_1120//2013%20abuse%20ER.pdf ).

From 2013/14, the only publicly available information broken down specifically for people with learning disabilities is the number of people where a safeguarding referral was made, and whether people were previously known to the council or not. The graph below shows the number of people with learning disabilities and the number of other people where a safeguarding referral was made, from 2010/11 to 2014/15.

As you can see, the number of people with learning disabilities with safeguarding referrals has dropped from a peak of 21,985 people referred in 2011/12 to 15,715 people referred in 2014/15 – a drop of 29% in three years. In the same timeframe, the number of other people referred has increased slightly.

And in 2014/15, only 8% of people with learning disabilities referred were previously unknown to the council (it was 14% of people with learning disabilities referred the year before), compared to 20% of other people referred.

So, at the same time as people with learning disabilities are starting to disappear from official sight and services are being withdrawn, is any spotlight on potential abuse also starting to turn elsewhere?

Reassured? As my nana didn’t used to say, “Christopher, you’re about as much use as a chocolate fireguard”. 

Social care - It's not complicated any more

Nearly a year ago, I wrote a blogpost looking at the social care statistics for adults with learning disabilities up to 2013/14, called “It’s complicated” (http://chrishatton.blogspot.co.uk/2015/01/its-complicated-whats-happening-in.html ). This week, I’ve been blogging (mainly) about some of the recently released social care statistics for 2014/15:

·        On the shrinking number of people with learning disabilities in official sight (http://chrishatton.blogspot.co.uk/2015/11/the-disappeared.html )

·        On the shrinking number of adults with learning disabilities in paid employment (http://chrishatton.blogspot.co.uk/2015/11/crushed-by-wheels-of-industry-if-only.html )

·        On the shrinking number of adults with learning disabilities getting personal budgets (http://chrishatton.blogspot.co.uk/2015/11/you-can-have-any-colour-as-long-as-its.html )

·        On the shrinking number of learning disability nurses (http://chrishatton.blogspot.co.uk/2015/11/nurse-nurse.html )

Can you spot the general trend yet?

In this final post of the week, I want to talk about some of the ‘big ticket’ items of social care – where people are living, what support they’re getting, and how much it costs. This uses newly released official statistics for social care in England in 2014/15 (see http://www.hscic.gov.uk/catalogue/PUB18663) and provisional statistics on social care expenditure for 2014/15 (see http://www.hscic.gov.uk/catalogue/PUB18445/pss-exp-eng-14-15-prov-rpt.pdf ). As with many other official statistics there have been major changes to the data collected in 2014/15, making last year something of a year zero and comparisons to previous years difficult. So, in this final post of the week I’m going focus on what I think can be reasonably compared over time, focusing on what’s happening in 2014/15.

Changes in the data collected make errors of interpretation even more likely than usual, so please do say if I’ve got anything horribly or slightly wrong and I’ll update the post accordingly.

Where are people living?

The first graph below shows where councils report adults with learning disabilities aged 18-64 to be living, from 2009/10 to 2014/15.

The black line at the top represents the number of adults with learning disabilities aged 18-64 known to the council (up to 2013/14) or getting long-term support from the council (in 2014/15). The thing that jumps out from this is the sudden drop from 2013/14 to 2014/15 (from 141,980 people in 2013/14 to 124,325 people in 2014/15). Is this drop because there were around 17,000 people in 2013/14 known to the council but not getting long-term support – so they’ve been excluded from the 2014/15 figures? Or is at least part of this drop because services have been withdrawn from some people?

The graph below gives us some clues. If the drop from 2013/14 to 2014/15 was simply about not counting people who weren’t getting long-term support from the council, then we might expect a big drop in the numbers of people living with family/friends and maybe in tenancies with private landlords too. There are big drops here: people living with family/friends dropped from 52,090 people in 2013/14 to 44,785 people in 2014/15; and tenants with a private landlord dropped from 16,690 people in 2013/14 to 12,425 people in 2014/15.

There is also a big drop in the number of people that councils report to be in inpatient services, from 1,035 people in 2013/14 to 490 people in 2014/15 – a long way short of the 2,705 people with learning disabilities reported to be inpatient services at end of March 2015 by health commissioners (see http://www.hscic.gov.uk/catalogue/PUB18793/ldsm-sep-15-exec.pdf ). Once a person with learning disabilities goes into an inpatient service, do councils not see them as getting long-term support from them?

So – some of the drop in numbers from 2013/14 to 2014/15 might be due to excluding people with learning disabilities known to the council but not getting long-term support from the statistics in 2014/15. But there are also consistent drops in the number of adults with learning disabilities in living situations that honk long-term support to me, including:

·        People in care homes – from 25,755 people in 2013/14 to 23,215 people in 2014/15

·        People in nursing homes – from 2,040 people in 2013/14 to 1,360 people in 2014/15

·        People as owner-occupiers/in shared ownership housing – from 3,755 people in 2013/14 to 2,460 people in 2014/15

·        People as tenants in local authority/arms-length management/registered social landlord housing – from 16,690 people in 2013/14 to 12,425 people in 2014/15

·        People in supported accommodation/supported lodgings/supported group homes – from 24,485 people in 2013/14 to 23,075 people in 2014/15

·        People in shared lives arrangements – from 3,550 people in 2013/14 to 3,100 people in 2014/15

The only form of living accommodation where the number of people increased from 2013/14 to 2014/15 was sheltered/extra care housing – from 890 people in 2013/14 to 1,195 people in 2014/15.

Some of these changes – for example the drop in the number of people in residential care and nursing care – are consistent with longer-term trends (see the second graph below). But others – for example the drop in the number of people in shared lives arrangements – reverse long-term trends of expansion. Some of this has to be withdrawal of significant support from adults with learning disabilities.

Unfortunately, changes to the statistics mean that we cannot track the number of adults with learning disabilities using specific community-based services such as day centres and home care into 2014/15. Information on the number of adults using ‘short-term’ support is also not readily available for 2014/15. The only clues we have here are in the new peculiar statistical category of "New and existing adult clients where the sequel to a request for support was short-term support to maximise independence, and what followed". I don't know whether this means that there are other requests for support going uncounted because they don't result in any support at all or in long-term support straight away, or if this is how all new 'requests for support' are counted [notice that people are requesting support now, not getting what support they are entitled to].

Anyway, for what it's worth, in 2014/15 there were 555 requests for support from 'new clients' with learning disabilities in this category. Nearly half  (40%) got no support as they had 'no identified needs', and over a third (38%) ended up getting some form of long-term support, with relatively few getting ongoing low-level support (6%) or other short-term support (6%). For me, what happened to the 1,200 'existing clients' who apparently requested short-term support 'to maximise independence' is more worrying, and clearly shows services being withdrawn. Of this group, less than half (44%) continued to get a long-term support service of some kind with a further 13% getting low-level ongoing support or some other short-term support. Fully 465 people (39%) got no support as they had 'no identified needs'.

What are social services spending on support for adults with learning disabilities?

As with the social care statistics, the social services spending statistics have also changed quite a lot in 2014/15, but using some rickety assumptions I think there are some ways of comparing spending information from earlier years into 2014/15.

Let’s start with the spending picture just for 2014/15, in the graph below. A good thing about the new statistics is that we now for the first time get information on adults with learning disabilities aged 65 years or more. Some of these new categories of spending are consistent with earlier years, but some things which were previously broken down for adults with learning disabilities (such as equipment & adaptations, and assessment & care management) are in 2014/15 only reported generically (a revealing change in itself).

Using the new spending categories, for adults with learning disabilities aged 18-64, the biggest single slice of social services spending (despite the decreasing number of people in them) was residential care (£1.7 billion), following by supported living (£892 million), with supported accommodation coming in at £278 million and nursing care at £61 million. In total, £457 million was spent on direct payments (although we don’t what the direct payments themselves were spent on), £352 million was spent on home care, and £611 million was spent on “long-term – community – other”, which I’m guessing mainly includes day care. [Incidentally, as a social scientist I wouldn’t design a coding system that has so much ‘other’ in it – you’re on the road to not having categories at all and just calling everything ‘stuff’]. In total, this social services spending on ‘long-term support’ for adults with learning disabilities aged 18-64 adds up to £4.36 billion.

What of the ‘short-term support’ – hopefully being offered to at least some of the adults with learning disabilities nudged out of the statistics in 2014/15? Well, we don’t know much about what such short-term support might be, but we know that in total £88 million (2% of the total) was spent on short-term support for adults with learning disabilities aged 18-64 in 2014/15.

For the 15,320 adults with learning disabilities aged 65 or over, £544 million in total was spent on long-term support, mostly on residential care (£255 million) or supported living (£111 million). The princely sum of £7.7 million was spent on short-term support for this group.

Trying to squish these categories of spending with those used up to 2013/14 is tricky, but I've had a go for the long-term support categories in the graph below, for adults with learning disabilities aged 18-64. Ignore the apparent bump in spending in 2011/12 – this is due to almost 2,000 people with learning disabilities (and almost £900 million) being transferred from NHS responsibility to social services responsibility as part of Valuing People Now. To put this graph together, I've mashed up the following old and new spending categories:

• Old - residential care. New - residential care
• Old - nursing care. New - nursing care
• Old - supported & other accommodation. New - supported accommodation + supported living
• Old - home care. New - home care
• Old - direct payments. New - direct payment
• Old - day services + meals + other community services. New - other long-term support

Just looking from 2013/14 to 2014/15, there are apparent sharp absolute reductions in spending on residential care, nursing care, home care and other community long-term support, with direct payments spending staying static and only supported & other accommodation increasing (quite sharply, too). What’s going on here? First, councils are clearly under the cosh when it comes to spending, and social services budgets which were relatively protected for people with learning disabilities compared to other groups up to 2013/14 have been taking their share of the battering in 2014/15.

Second (and this is an issue for another blogpost at another time when I understand it better), does the mirrored rise in supported accommodation/drop in residential care reflect meaningful changes in people’s homes or large-scale deregistering/relabelling of registered care homes into various types of ‘supported living’? While this may reduce the costs for social services departments (see the final graph below on the unit costs of residential care and supported living up to 2014/15), it may well increase the costs to the taxpayer, as agencies can become registered social landlords (with no cap to the amount of housing benefit that can be claimed) tied in closely to the ‘support’ provided. And these increased costs can come with no benefit (or even any noticeable difference) to the lives of people with learning disabilities living there.

In contrast to last year’s blog, I think the statistics for social care in 2014/15 are much less complicated. Adults with learning disabilities are now sharing in the withdrawal of social services attention and support that other groups of people have already experienced. If ever there is a time for a radical shift in control over state resources to people with learning disabilities and families, that time is now.

Sources

Health and Social Care Information Centre. Community Care Statistics, Social Services Activity, England 2014-15 http://www.hscic.gov.uk/catalogue/PUB18663

Health and Social Care Information Centre (2015). Personal Social Services: Expenditure and Unit Costs England 2014-15, Provisional release http://www.hscic.gov.uk/catalogue/PUB18445/pss-exp-eng-14-15-prov-rpt.pdf

Nurse! Nurse?

This post is the fourth in a week of blogposts looking at what’s happening for people with learning disabilities in England. For a bit of a change today, rather than looking at social care statistics, this blog is about the NHS learning disability nursing workforce in England. Learning disability nurses in both general hospitals and in community health services have been found to be important facilitators for people with learning disabilities getting decent healthcare from health services (see for example Tuffrey-Wijne and colleagues’ open access paper here http://bmjopen.bmj.com/content/4/4/e004606.full or McConkey and colleagues' work on health facilitators http://www.nationalelfservice.net/populations-and-settings/primary-care/introduction-and-uptake-of-annual-health-checks-across-northern-ireland-for-patients-with-learning-disabilities/ ).

So, what’s happening to the workforce of nurses working specifically with people with learning disabilities in England? The Health and Social Care Information Centre, as part of their suite of NHS workforce statistics (see http://www.hscic.gov.uk/searchcatalogue?productid=18858&topics=0%2fWorkforce&sort=Relevance&size=10&page=1#top ), provide monthly information on the number of Whole-Time Equivalent (WTE) nurses in the categories of Community Learning Disabilities nurses and Other Learning Disabilities nurses. The graph below shows this information for the month of May from 2010 through to 2015.

For community learning disabilities nurses, there were 2,571 WTE nurses in May 2010, dropping steadily to 2,003 WTE nurses in May 2015. The picture for ‘other’ learning disabilities nurses (presumably in large part working in general hospitals) is even worse, dropping from 2,916 WTE nurses in May 2010 to 1,754 WTE nurses in May 2015. Overall, this is a drop of 32% in the number of WTE learning disability nurses over 5 years.

In Whole Time Equivalents, less than 1% of this nursing workforce are nurse consultants, 1% are modern matrons, 5% are managers, 92% are ‘other first level’, and less than 1% are ‘other second level’ nurses.

It’s also worth bearing in mind that this workforce information is for NHS services only – we don’t know how many nurses are working with people with learning disabilities in third sector/private services (particularly specialist inpatient services).

Nursing for people with learning disabilities is on the Department of Health’s agenda, with a ‘Strengthening The Commitment’ programme running since 2012 (see https://www.gov.uk/government/uploads/system/uploads/attachment_data/file/309153/Strengthening_the_commitment_one_year_on_published.pdf ) and an announcement of increased numbers of training places. Learning disability nurses are often pushing for leadership positions, and through initatives like @WeLDNurses are trying to create communities of nurses that question their own practice and are open to the experiences of people with learning disabilities, families and others.

However, according to an RCN survey of learning disability nurses in 2015 (unfortunately neither the number not representativeness of the nurses replying to the survey are stated in the article), things aren’t looking good for learning disability nursing in England. Many nurses in this survey report cuts to services (including nursing services), downgrading and pay cuts, and a lack of suitable community services for the people with learning disabilities they’re supporting (see http://www.rcn.org.uk/newsevents/news/article/uk/patient-safety-learning-disability ).

A difficult environment for strengthening the commitment?

Sources

Department of Health (2014). Strengthening the Commitment: One year on. London: Department of Health. https://www.gov.uk/government/uploads/system/uploads/attachment_data/file/309153/Strengthening_the_commitment_one_year_on_published.pdf

Health and Social Care Information Centre. NHS Workforce Statistics – July 2015, Provisional Statistics. http://www.hscic.gov.uk/searchcatalogue?productid=18858&topics=0%2fWorkforce&sort=Relevance&size=10&page=1#top

McConkey R, Taggart L & Kane M (2015). Optimizing the uptake of health checks for people with intellectual disabilities. Journal of Intellectual Disabilities, 19, 205-214.

Tuffrey-Wijne I, Goulding L, Giatras N, Abraham E, Gillard S, White S, Edwards C & Hollins S (2014). The barriers to and enablers of providing reasonably adjusted health services to people with intellectual disabilities in acute hospitals: evidence from a mixed-methods study. BMJ Open 2014, 4, e004606 http://bmjopen.bmj.com/content/4/4/e004606.full

You can have any colour, as long as it's council

This post is the third in a hasty series looking at what’s happening for people with learning disabilities in England, mainly using social care statistics for 2014/15 that have been recently released (see http://www.hscic.gov.uk/catalogue/PUB18663 ) .

This short blogpost (just one graph) looks at social care personal budgets and adults with learning disabilities in England. As with the other statistics reported in this blog series, there have been some changes in the way statistics concerning self-directed support/personal budgets have been collected in 2014/15, but it is possible to produce some comparative data over time.

The graph below reports the number of adults with learning disabilities aged 18-64 years who get: a direct payment only; a personal budget that partly involves a direct payment; or a council-managed personal budget (the statistics do not use categories such as Individual Service Funds). When interpreting this graph, it’s important to remember that up to 2013/14 these figures are based on adults with learning disabilities known to the council – in 2014/15 this changed to adults with learning disabilities getting long-term support from the council. As the first blog in this series discusses (http://chrishatton.blogspot.co.uk/2015/11/the-disappeared.html ), this means that 141,980 adults with learning disabilities aged 18-64 known to the council in 2013/14 became 124,235 adults with learning disabilities aged 18-64 getting long-term social services support in 2014/15. This complicates how we can interpret the stark changes from 2013/14 to 2014/15.

We can ask a few questions about personal budgets on the basis of this information.

First, we can say overall that in 2013/14, 62% of adults with learning disabilities aged 18-64 known to councils were using some form of personal budget, compared to 68% of adults with learning disabilities aged 18-64 getting long-term support from councils in 2014/15. For the first time in 2014/15, we also have data for adults with learning disabilities aged 65+; of the 15,320 older people with learning disabilities getting long-term support, 7,045 (46%) were getting some form of personal budget.

What kind of personal budgets are adults with learning disabilities getting? Of the 83,995 adults with learning disabilities aged 18-64 getting a personal budget in 2014/15, around a quarter (26%) were getting a direct payment only, fewer than that (16%) were getting a part-direct payment as part of a personal budget, and well over half (59%) were getting a council-managed personal budget. Of the 7,045 adults with learning disabilities aged 65+ getting a personal budget, only 9% were getting a direct payment only, even fewer (7%) were getting a part-direct payment as part of a personal budget, and almost everyone (84%) was getting a council-managed personal budget.

Second, what are the trends over time? Looking at 2009/10 to 2014/15 as a whole, the number of adults with learning disabilities aged 18-64 getting any kind of personal budget has apparently massively increased, by 256% no less, over this time period. However, almost all of this increase has been in council-managed personal budgets (a whopping 909% increase) and to a lesser extent part-direct payment personal budgets (639%), with direct payment-only budgets only increasing by (cough) 27% over these 5 years.

Finally, what to make of the absolute reduction in the number of adults with learning disabilities aged 18-64 getting personal budgets in 2014/15, a reversal of the trend from 2009/10 to 2013/14? Is this drop of 4,530 people getting personal budgets an artefact of the change from ‘known to council’ to ‘getting long-term support’ I mentioned earlier? If that is the case, then we must assume that all these 4,530 people were getting one-off personal budgets in 2013/14 – so why is almost all the drop in people getting council-managed personal budgets? It seems more reasonable to assume that, as reported in the recent In Control report (see http://www.in-control.org.uk/news/in-control-news/promoting-people%E2%80%99s-right-to-choice-and-control-under-the-care-act-2014.aspx ), councils are withdrawing service support, in this case from some adults with learning disabilities.

So (and I know this doesn’t apply to all councils by any means), we have a pattern of withdrawal of personal budgets, with most personal budgets managed by your friendly neighbourhood local authority. You can have any colour, as long as it’s council.

Sources

Health and Social Care Information Centre. Community Care Statistics, Social Services Activity, England 2014-15 http://www.hscic.gov.uk/catalogue/PUB18663

In Control. Promoting people’s right to choice and control under the Care Act 2014. http://www.in-control.org.uk/news/in-control-news/promoting-people%E2%80%99s-right-to-choice-and-control-under-the-care-act-2014.aspx

Crushed by the wheels of industry? If only...

This post is the second in a haphazard series looking at what’s happening for people with learning disabilities in England, mainly using social care statistics for 2014/15 that have been recently released (see http://www.hscic.gov.uk/catalogue/PUB18663 ) .

This relatively short post focuses on paid employment. Although the way these statistics have been collected have changed for 2014/15 compared to earlier years, comparisons over time are relatively straightforward. And it’s important to realise that these statistics are only for ‘working age’ (age 18-64 years) adults with learning disabilities who up to 2013/14 were ‘known’ to councils, and in 2014/15 were getting ‘long term support’ from councils (see http://chrishatton.blogspot.co.uk/2015/11/the-disappeared.html for a discussion of this).

So, the first graph we have below is the percentage of working age adults with learning disabilities in any form of paid employment (no matter how part-time). The percentage is shockingly low, dropping consistently from 2011/12 to 2014/15, and standing at 6.0% in 2014/15. There is also a steady gap in paid employment between men and women with learning disabilities.

This paid employment rate of 6.0% compares to a paid employment rate of 73.5% of the working age population of England as a whole (see http://www.ons.gov.uk/ons/rel/lms/labour-market-statistics/september-2015/statistical-bulletin.html ).

Statistics concerning employment rates for adults identified as having learning disabilities as children but not identified as such in adulthood are obviously hard to come by. Using a large-scale population survey to estimate employment rates for adults likely to be part of this ‘hidden majority’, we estimated that 15% of these adults were in employment for 16+ hours per week, compared to 58% of the comparative population in the survey (Emerson, Hatton, Robertson & Baines, 2014).

The reduction in the percentage employment rate to 2014/15 looks bad enough. But because the total number of adults with learning disabilities known to councils (or getting long term support) dropped so much from 2013/14 to 2014/15, the drop in percentage employment rates actually masks a much bigger drop in the number of adults in paid employment.

The graph below shows the number of working age adults with learning disabilities in any form of paid employment (data on the number of people engaged in voluntary work is also available up to 2013/14, but has not been collected in 2014/15). The number of people in any form of paid employment has dropped by a quarter in three years, standing at just 7,430 people in 2014/15. [It is important to note that the 2008/09 data were only collected over a half-year, so they’re not great for comparison purposes]

Most of the paid employment that people with learning disabilities have is part-time – less than 16 hours per week, as the last graph below shows. The sharp drop in the number of adults in paid employment from 2013/14 to 2014/15 happens for people working less than 16 hours per week and for people working more than 16 hours per week.

And what of those working age adults with learning disabilities getting long-term social services support who are not in paid employment? In 2014/15; 11,920 people were recorded as actively seeking work (and potentially liable to benefit sanctions?); 51,095 people were recorded as not actively seeking work; and councils didn't know the employment status of 53,020 people to whom they are ostensibly providing long-term support.

One of the things I find particularly depressing about these statistics is that this is an area where there is good evidence on how to support people into paid employment, and how cost-effective supported employment can be if you do it right (see the NDTi reports and resources on this here http://www.ndti.org.uk/major-projects/current/employment-support-for-disabled-people1/ ). Yet according to the survey NDTi did as part of their research, many local authorities are withdrawing funding for supported employment.

Work might not be everything, but it is something. Instead of people with learning disabilities having to pay agencies to work under the guise of ‘therapy’ or ‘work experience’, why not actually, erm, pay people for the work they do?

Sources

Emerson E, Hatton C, Robertson J & Baines S (2014). Perceptions of neighbourhood quality, social and civic participation and the self rated health of British adults with intellectual disability: cross sectional study. BMC Public Health, 14, 1252 [open access http://www.biomedcentral.com/1471-2458/14/1252 ].

Health and Social Care Information Centre. Community Care Statistics, Social Services Activity, England 2014-15 http://www.hscic.gov.uk/catalogue/PUB18663

National Development Team for Inclusion. Employment support for disabled people. http://www.ndti.org.uk/major-projects/current/employment-support-for-disabled-people1/

The disappeared

Official statistics for social care in England in 2014/15 have recently been released (see http://www.hscic.gov.uk/catalogue/PUB18663 ). As with many other official statistics there have been major changes to the data collected in 2014/15, making last year something of a year zero and comparisons to previous years difficult. Nevertheless, in a series of blogposts over the next week or two, I want to use these and other statistics to explore what’s happening in social care (and in service support more generally) for people with learning disabilities in England.

Changes in the data collected make errors of interpretation even more likely than usual, so please do say if I’ve got anything horribly or slightly wrong and I’ll update the post accordingly.

In this post, I want to talk about the apparent disappearance of people with learning disabilities (particularly people given the label of mild or moderate learning disabilities) from the official gaze of statistics and services designed to support people with learning disabilities.

The ‘transition cliff’ in service identification of people with learning disabilities as they move from services for children to services for adults is well-known and long-established. The graph below, based on data from 2010 (Emerson & Glover, 2012), shows how many people out of every 1,000 people generally are recognised as a person with learning disabilities by schools (for children) or GPs (for adults), across different ages.

For children aged 10-15 years in 2010, around 5 children out of every 1,000 were identified within education services as a child with ‘severe learning difficulty’ or ‘profound and multiple learning difficulty’. A much bigger number, from 40-50 children per 1,000, were identified as a child with ‘moderate learning difficulty’. However, by the time people are in their early twenties, the number of adults identified as a person with learning disabilities (of any ‘level’) on GP registers is at around 5 people per 1,000; around the same number as children with ‘severe’ or ‘profound & multiple’ learning difficulties. What’s happened to all the adults formerly known as children with ‘moderate learning difficulty’ – our best guess is something around 700,000 people in England? They have simply vanished from the sight of health or social services as a person with learning disabilities. While many people in this group might view this as an escape from an unhelpful sticky label, others might see it as an eviction from much-needed support.

How many adults with learning disabilities are likely to need support from social services over the next 20 years? Taking as a starting point the number of adults with learning disabilities known to social services in 2012 (i.e. already missing out the ‘hidden majority’ of adults with learning disabilities), we (Emerson, Robertson, Coles & Hatton, 2012) made population projections of the number of adults likely to need social services support up to 2023, depending on how strict social services were going to be about ‘eligibility’ for services. As the graph below shows, even if councils only offer support to people with ‘critical’ or ‘substantial’ needs, the number of adults with learning disabilities needing support is projected to increase by around 2% a year – which by 2023 adds up an increase of around 50% in the number of adults needing social services support from 2012. 

So far, I hope I’ve established that a huge number of adults identified as having learning disabilities in childhood do not carry this identification (and eligibility for support as a person with learning disabilities) into adulthood. I’ve also tried to show that even using strict eligibility criteria, the number of adults with learning disabilities likely to need support from social services is going to increase hugely in the next 20 years.

What do recent trends tell us about the number of people with learning disabilities being identified within education and social services? Is the number of people increasing in line with increasing numbers of children on school rolls generally, and in line with projections of increasing numbers of adults with learning disabilities needing social services support? Although changes in the way statistics are collected in 2014/15 make this judgement difficult, my initial answer is no. In fact, and particularly for people with ‘mild/moderate’ learning disabilities, the opposite is happening – people are being ‘disappeared’.

The graph below shows Department for Education statistics on the number of children identified as having a ‘moderate’, ‘severe’ or ‘profound and multiple’ learning difficulty/disability at the level of having a statement of special educational needs (up to 2014) or having an Education Health and Care Plan (2015) - see https://www.gov.uk/government/collections/statistics-special-educational-needs-sen. While the number of children with ‘severe’ and ‘profound and multiple’ learning difficulties has steadily increased from 2010 to 2015, as we would expect, the number of children with ‘moderate’ learning difficulty has dropped by nearly 20% over the same 5 years.

Is this because fewer children with ‘moderate’ learning difficulties are getting a statement/EHCP (which bring with them resources and responsibilities for services) and are being identified at the less resource-intensive level of ‘school action plus’ instead? The graph below says no; if anything the number of children with ‘moderate’ learning difficulties at school action plus level plummeted even faster from 2010 to 2014 – in 2015 the category of ‘school action plus’ was abolished from the publicly available statistics.

What about the number of adults with learning disabilities using social services – are social services in a time of severe financial pressure managing to keep pace with the number of adults with learning disabilities likely to require support? Again, the answer seems to be no. The next graph shows the total number of adults in England aged 18-64 years who were reported as being known to their council as a person with learning disabilities, up to 2013/14. In 2014/15, this definition changed in the official statistics to the number of adults with learning disabilities aged 18-64 years who were receiving long-term support from the council.

The graph shows that up to 2013/14 there were small year-on-year increases in the number of adults with learning disabilities aged 18-64 known to their council (up to 141,980 people in 2013/14) – not enough to keep pace with population projections, but still increasing. In 2014/15 there were 124,235 adults with learning disabilities aged 18-64 getting long-term social services support (there were a further 15,320 adults with learning disabilities aged 65 or over getting long-term support) – if these were equivalent figures this would be a 12% drop in one year. As an aside, it’s worth noting that in 2013/14 more adults (214,000 people; Glover, 2014) were identified by GPs as having a learning disability – data for 2014/15 are not available yet, but among other things it throws up a conundrum for health and social care integration bods.

Of course, the figures are not likely to be completely equivalent, although other information which I will discuss in a later blogpost strongly suggests to me that this drop cannot be completely accounted for by missing out from the official statistics people who were ‘known’ to councils but who were not receiving social services support. And even if this drop were due to people ‘known’ to services but not getting long-term support being left out of these statistics, their omission is ominous. In the world of official statistics and service support, it’s a short step from being uncounted to not officially existing.

What does it all mean? Well, to me there is a clear pattern that throughout education and adult social services, people who would formerly have been officially identified as a person with learning disabilities are being ‘disappeared’ from service recognition and responsibility. Obviously the people themselves do not cease to exist (and a label of learning disabilities may not always be the most helpful way to support someone). But I do wonder if we’re seeing another of the periodic big historical shifts in the population of people who officially ‘count’ as people with learning disabilities. This shouldn’t be surprising – changes in the population of people given the label of learning disabilities (or historical, pejorative near-equivalent labels) have historically tended to follow big social changes, and a time of designed austerity may be no different in this respect.

In Victorian times, rapid industrialisation and the movement of people to cities can be argued to have ‘created’ a whole new population of people coming into the category equivalent to ‘learning disability’. Edwardian moral panics, allied to a eugenic approach, led to the equivalent of ‘learning disability’ being used as a moral label as much as anything else, with another shift in the population caught in this label. The moral connotations of the label dropped away somewhat throughout the 20^th century, but the rise of the welfare state supported people with what would now be a label of ‘mild’ learning disability.

With the current reform/withdrawal/dismantling of the welfare state, perhaps we’re seeing an officially sanctioned (if implicit) shrinkage of who counts as a person with learning disabilities, with people with ‘mild’ learning disabilities being written out of the picture and state support reserved for ‘protecting’ the most ‘vulnerable’. My worry is that this retrenchment is consigning generations of people to a fight for survival in education, employment, housing, health and social contexts that are anything but conducive to a flourishing life.

Sources

Department for Education. Statistics: special educational needs (SEN) https://www.gov.uk/government/collections/statistics-special-educational-needs-sen 

Emerson E & Glover G (2012). The ‘transition cliff’ in the administrative prevalence of learning disabilities in England. Tizard Learning Disability Review, 17, 139-143.

Emerson E, Robertson J, Coles B & Hatton C (2012). The future need for social care services for adults with disabilities in England 2012-2030: Findings. NIHR School for Social Care Research  http://sscr.nihr.ac.uk/PDF/Findings/SSCRResearchFindings5.pdf

Glover G (2014). The uptake of learning disability health checks 2013 to 2014. London: Public Health England https://www.improvinghealthandlives.org.uk/publications/1239/The_Uptake_of_Learning_Disabilities_Health_Checks,_2013_to_2014

Health and Social Care Information Centre. Community Care Statistics, Social Services Activity, England 2014-15 http://www.hscic.gov.uk/catalogue/PUB18663