The riddle of the model 2: Unnatural variation

This is just a quick follow-up to yesterday's post about trends in residential and nursing care for adults with learning disabilities, prompted by Steve Broach's typically perspicacious question about variations in residential and nursing care across different local authorities in England. So, here are a few bits and pieces from another look at the NHS Digital data.

First, the two big graphs below (they wouldn't fit into one, I discovered) are simply the numbers of adults with learning disabilities aged 18-64 and 65+ in residential and nursing care homes during 2015/16, by individual local authority. It's important to realise that these are numbers of people (rounded to the nearest 5), not rates of people in residential or nursing care per 100,000 population. Obviously, local authorities with bigger populations might be expected to report larger numbers of people in all types of service. [I've tried making the graphs extra large in Blogger in the home that people can expand them on their devices - if not, do shout, as they're pretty weeny].

Second, the next graph shows the same information (so on numbers of people rather than rates) broken down by region rather than local authority.

Last, the two snippets below come from the @ihal_talk publication People with Learning Disabilities in England 2015, and relates to 2013/14 information rather than 2015/16 information [conflict of interest note - I was responsible for putting this report together], although the variation would be very similar for 2015/16. This analysis of variation in usage of residential care is based on rates of placement of people in residential care homes rather than raw numbers, and shows quite extreme variation across local authorities in how much they use residential care.

Be careful what you wish for Steve!

The riddle of the model

The riddle of the model*

There have been a number of straws in the wind (and sometimes more than just straws) that commissioners of health and social care, aided and abetted by ‘care’ service providers, are looking for ways to move more people with learning disabilities (and disabled people generally) into residential and nursing care. This blogpost simply aims to provide some statistics on the number of adults with learning disabilities in England in residential and nursing care, and how much local authorities are spending on these types of service. I think my main conclusion is that, although residential and nursing care may be coming back, they’ve never really gone away.

In 2015/16, local authorities were funding 30,240 adults with learning disabilities in residential care services, and a further 1,815 adults with learning disabilities in nursing homes (all data in this blogpost are from NHS Digital). The graph below shows that the overall trend over time is broadly downwards (this graph includes 1,870 adults with learning disabilities in residential or nursing care transferred from NHS to local authority funding in 2011/12).

The second graph below shows the same information for adults with learning disabilities aged 18-64 years old (this doesn’t include the NHS-LA transfers, as we don’t have this information broken down into age bands). Again, there’s a downward trend over time, but in 2015/16 there were still 24,775 working age adults with learning disabilities in residential care and 1,075 people in nursing care.

The third graph below shows the same information for older adults with learning disabilities, aged 65 years or more. The picture here is different, at best flat over time (assuming the hike in 2011/12 is due to the NHS-LA transfer) and possibly increasing. The increase from 2013/14 to 2015/16 is particularly difficult to explain; the way the information was collected changed at that time point but this led to a big overall reduction in the number of adults with learning disabilities getting social care support reported in the statistics. Why this would result in an increase in the number of older people recorded as using residential or nursing care is puzzling, unless local authorities starting recording for the first time older people with learning disabilities placed in generic older people’s care homes? Overall, in 2015/16 there were 5,465 older adults with learning disabilities in residential care, and a further 740 people in nursing care.

 The fourth and final graph below shows how much localauthorities were spending on residential and nursing care for adults with learning disabilities in 2014/15 and 2015/16 (these are the first years for which spending information on older people with learning disabilities is available). In 2015/16, local authorities were spending £1.7 billion on residential care and £60 million on nursing care for adults with learning disabilities aged 18-64 years. They were also spending £246 million on residential care and £25 million on nursing care for adults with learning disabilities aged 65 years or over – a grand total of just over £2 billion per year.

From the figures above, we can work out rough unit costs for each type of care. Per person with learning disabilities per year, local authorities are paying…

·        £68,525 for residential care for adults aged 18-64 (£1,318 per week)

·        £56,093 for nursing care for adults aged 18-64 (£1,079 per week)

·        £44,922 for residential care for adults aged 65+ (£864 per week)

·        £33,243 for nursing care for adults aged 65+ (£639 per week)

Quite why older people have cheaper support needs than younger people, and specialist nursing care is apparently cheaper than residential care, is beyond me, but the reasons for a push by commissioners towards models of care for adults with learning disabilities that look like nursing care homes for older people is becoming clearer.

So, residential and nursing care has never gone away. Rates of placement in residential and nursing care are already much higher for adults with learning disabilities in England (at 67.5 adults per 100,000 adult population) than in Scotland (42.0 adults per 100,000 population) or Wales (51.2 adults per 100,000 population) (Hatton, 2017). The scale of local authorities’ continuing reliance on residential and nursing care can be summarised in these final few facts (from 2015/16 figures):

·        21.5% of all adults with learning disabilities aged 18-64 getting long-term support from their council are in residential or nursing care

·        42.1% of all adults with learning disabilities aged 65+ getting long-term support from their council are in residential or nursing care

·        19.4% of all adults with learning disabilities in residential or nursing care are aged 65+

·        39.7% of all long-term social care support expenditure on adults with learning disabilities aged 18-64 is on residential or nursing care

·        50.0% of all long-term social care support expenditure on adults with learning disabilities aged 65+ is on residential or nursing care

In the words of Sing Street (almost), I will never unravel, the riddle of the (residential and nursing care) model.

[Updated to include the sources of the data and specific links to where to find them. Many apologies to NHS Digital for not mentioning this in the first place]

* I’ve only just caught up with the excellent Irish film Sing Street, in which our not-quite-inept-enough 1980s teenage hero forms a band so that a girl he fancies will appear in the video of their first song, The Riddle Of The Model. If you haven’t seen I’d highly recommend it (a taster is here https://www.youtube.com/watch?v=PDtUesTfF50 ).

How many people with learning disabilities are really in inpatient services?

I’ve wittered on in too many previous blogposts about what the statistics are telling us about the number of people with learning disabilities and/or autism in inpatient services in England, and how NHS England claims of reductions look to me somewhat premature. So, with Transforming Care Plans springing into action, is the picture finally looking brighter? (as opposed to the future being orange, which as we now know does not mean brighter except in a malfunctioning TV kind of way)

Well, in this blogpost I’m going to share statistics that lead me to think the picture is much worse than I thought. New analyses from the good people at NHS Digital (together with some old analyses from them that I shamefully missed, thank you to Tim Williams at Reading University for drawing my attention to the relevant table) strongly indicate that there are many more people with learning disabilities and/or autism using inpatient services than NHS England typically mention in their reports of progress.

Compared to five years ago, we generally now have much better information about people with learning disabilities and/or autism in inpatient services, and there are now multiple sources of relevant information. The one that NHS England regularly cites is the Assuring Transformation dataset, updated monthly by NHS Digital. This reports information provided by commissioners (CCGs and NHS England specialist commissioners) about how many people with learning disabilities and/or autism they’re paying for in inpatient services (along with lots of other information about them and the service people are getting). The Assuring Transformation dataset (with some wrinkles due to retrospective reporting) generally reports 2,600-2,800 people in inpatient services.

From 2013 to 2015, there was also the Learning Disability Census, which collected detailed information annually from inpatient service providers on how many people with learning disabilities and/or autism were in inpatient services on a particular census date.

More recently, there is the Mental Health Services Dataset (MHSDS), replacing and adding to the previous Mental Health and Learning Disabilities Dataset (MHLDDS), which provides detailed monthly information from a wide range of providers of mental health and community services.

Just before Christmas (are they not allowed holidays?), along with other analyses of the MHSDS, NHS Digital produced a report comparing data from the Assuring Transformation dataset and the MHSDS, based on figures for September 2016. 

At the end of September 2016, Assuring Transformation reported 2,600 people with learning disabilities and/or autism in inpatient services. At the same time, the MHSDS reporting 3,590 ward stays of people with learning disabilities and/or autism in mental health/learning disability inpatient services.

Why the difference? Much of it may be that many people with learning disabilities and/or autism are spending relatively short amounts of time in general mental health inpatient services, which would be picked up by mental health service providers in the MHSDS but is not picked up by commissioners in Assuring Transformation. Consistent with this, for some NHS Trusts, many more people with learning disabilities and/or autism are reported in the MHSDS dataset than the Assuring Transformation dataset (e.g. Nottinghamshire Healthcare 90 people in AT vs 315 people in MHSDS; West London Mental Health Trust 15 vs 140 people; Oxleas 25 vs 120 people; Mersey Care 155 vs 235 people; Rotherham, Doncaster & South Humber 35 vs 185 people; Kent & Medway Partnership Trust 30 vs 265 people). 

I’m more puzzled by a small number of NHS Trusts where more people with learning disabilities and/or autism are reported in the Assuring Transformation dataset that the MHSDS, for example Hertfordshire Partnership Trust (110 people in AT vs 80 people in MHSDS) and Coventry & Warwick Partnership Trust (75 people in AT vs 5 people in MHSDS).

There are similar differences in independent sector inpatient provider organisations. Some of the biggest organisations report much larger numbers of people with learning disabilities and/or autism as inpatients in the MHSDS compared to Assuring Transformation, such as Partnerships in Care (275 people in AT vs 390 people in MHSDS) and St Andrews (205 people in AT vs 305 people in MHSDS). Is this because these organisations have people with learning disabilities and/or autism in branches of their inpatient services not identified by commissioners as learning disability/autism inpatient services? 

Again, there are some organisations reporting higher numbers of people with learning disabilities and/or autism in Assuring Transformation than in MHSDS, such as the Priory Group (50 people in AT vs less than 5 people in MHSDS) and Cambian Healthcare (135 people in AT vs 30 people in MHSDS). Why are these inpatient services not counted as mental health services by these organisations (which return information for the MHSDS)?

This is just information from a single point in time, September 2016. I shamefully missed, until Tim Williams drew it to my attention, that NHS Digital did a similar analysis of Assuring Transformation data against data from the Learning Disability Census, for September 2015. In September 2015 there were 2,625 people in inpatient services according to Assuring Transformation vs 3,000 people in inpatient services according to the Census. Only 2,140 people were in both datasets, which by my calculations (excluding places commissioned by organisations outside England) means that in total there were around 3,400 people with learning disabilities in inpatient services in September 2015.

What conclusions do I draw from this?

1. Most obviously, there are likely to be many more people with learning disabilities and/or autism using ‘specialist’/mental health inpatient services than Assuring Transformation makes visible – something like 3,500 people in inpatient services at any one time rather than the 2,600 people reported by commissioners in Assuring Transformation.
2. Equally obviously, commissioners’ (and possibly providers’) reporting is all over the place, as evidenced by the struggles of Jenny Morris andJane Basham to get any sensible information about inpatient services from theirlocal commissioners or service providers (Norfolk & Suffolk NHS Foundation Trust report 10 people with learning disabilities and/or autism as inpatients in Assuring Transformation, but 50 in the MHSDS dataset, for example). Are these discrepancies pure cock-up or partly some form of gaming relating to meeting Transforming Care targets objectives?
3. Some of this information suggests that many people with learning disabilities and/or autism may be using generic mental health inpatient services rather than ‘specialist’ learning disability inpatient services. This group of people seems relatively invisible to commissioners and to the NHS England Transforming Care programme, and what’s happening to them needs to be much better understood.