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!
Wednesday, 18 January 2017
Tuesday, 17 January 2017
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.
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
).
Friday, 13 January 2017
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?
- 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.
- 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
targetsobjectives? - 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.
Thursday, 22 December 2016
The guideline must be built!
Thanks to @ShaunLintern and @SJaneBernal for sharing the new
‘Safe staffing improvement resources: learning disability services’, published
by NHS Improvement on 21st December. This blogpost contains some
quick first impressions based on a skim reading, mainly in the hope of bringing
more people’s attention to this. The resources include an ‘improvement resource’
with appendices, and a separate rapid mixed methods systematic review conducted
by the University of West London.
Before getting into the documents themselves, I must say
that I have a bit of a bee in my bonnet about the phrase ‘safe staffing’ and
safe staffing levels. Among many other things, #JusticeforLB showed us that
there is no such thing – Connor Sparrowhawk died a preventable death in a highly
staffed unit stuffed with specialists. There may well be levels of staffing
below which a service can be guaranteed to be unsafe, but there is no level
above which a service can be guaranteed to be safe. And in services for people
with learning disabilities, for me this isn’t idle semantic pedantry –
commissioners, NHS Improvement and others are always looking for easy proxy
measures of ‘quality’ or ‘safety’ so they don’t have to confront the reality of
people’s lives in these services.
Evidence?
In looking at these documents, I’m going to start with the
rapid systematic review, conducted by Mafuba, Gates and Sivasubramanian – there
is a reason for this that will hopefully become clear later. The first thing
that struck me (and this applies throughout all the resources) is how
staff-centric the review is, presumably based upon the terms set by NHS
Improvement. The terms of the review are described as follows: “The current literature review is more
broadly based, regarding the interdisciplinary range of staff working in
learning disability services, and needed to consider the sustainability of
these staff within a framework of compassionate, safe, effective and efficient
care.”
Quite a tough brief, given the state of the published
evidence and the time the authors were presumably given to conduct the review. The
full brief and the review largely exclude the voices of people with learning
disabilities and family members – for example the review actively excluded 9
papers because they focused on the views of adults with learning disabilities
(families aren’t even mentioned). This slant towards staff perspectives is
exacerbated by the reviewers deciding that “…because of the dearth of empirical
studies that specifically addressed the objectives of the current review,
opinion papers (published in peer reviewed journals and unpublished) were
included.” So the ‘evidence’ admissible to be reviewed contains large slugs of
professional opinion, including professionals working in those very inpatient
services that are supposed to be drastically reducing under NHS England’s
Transforming Care/Building The Right Support.
Reflecting the state (as in ‘Just look at the state of your
bedroom’) of the literature, the material included in the review is incredibly heterogeneous.
Given there were only 37 publications included in the review, the decision to exclude
17 publications concerning social or community care seems odd, as was the
decision to exclude anything published before the year 2000, which excludes a
whole strand of UK research relating to staffing levels, staff behaviour and
the lives of people with learning disabilities in housing services conducted
mainly in the 1980s and 1990s. This strand of research clearly established
that, in a range of types of residential care and supported housing for people
with learning disabilities in the UK, there was no relationship between higher
staff ratios and better lives for the people living within them. A higher
staffing ratio was no guarantee of a more active life, more engagement in
people’s local communities, or more choice (Felce & Emerson, 2005). And of
course, in inpatient services higher staff ratios may be a consequence of service
failure, in a self-fufilling vicious spiral (a person becomes more distressed
by being put into an inpatient service, the answer is more staff to follow them
around and restrain them, the person becomes more distressed as a consequence,
the answer is…).
Experts by
experience?
The findings are unsurprising and (initially) pithily
expressed: “No empirical evidence was located that directly relate to
sustainable safe staffing.”
But of course, stopping there would derail the whole
machinery of guideline production. A guideline must be produced, and minor
details like a complete lack of evidence upon which to base a guideline can’t
be allowed to get in the way (I’ve been involved in similar processes so this
is a criticism of myself as much as anyone else). What this means is that the
production of these guidelines becomes a hermetically sealed jar of
professional opinion, created from ‘experience’: “While there is little
previous research and a lack of strong evidence in this area, many professional
publications identify experience-based strategies and indicators related to
safe and sustainable staffing.”
Is this a problem? After all, professionals are the experts,
right? Well, particularly when it comes to inpatient services for people with
learning disabilities, it’s not as simple as that.
First, inpatient services have been around for a long time,
and are highly resourced with psychiatrists, clinical psychologists and others
for whom research is supposed a part of the skillset. If this is the case, why isn’t
there a substantial research literature already on staffing in inpatient
services? 40 years ago, there were national minimum standards set for doctor : resident
ratios in learning disability hospitals (1 doctor per 250 residents, 3 out of
61 big hospitals failed this standard), and for nurse : resident ratios (1
nurse per 4.4 residents, 3 hospitals failed this standard too). Now there is no
equivalent data for inpatient services across England, and very little work
investigating what happens in inpatient services, with what staff, with what
effect in terms of the lives of people using them? Would independent sector and
NHS services routinely reveal what staff (of what type, at what grades) are
actually working in inpatient services day by day, or is that now in the realm
of ‘commercially sensitive’ information for fear of exposing to commissioners
and the public gaps between what’s being paid for and what’s actually
happening?
Second, most obviously, a lot of bad stuff happens to a lot of people with learning disabilities in inpatient services, either actively at
the hands of staff (seclusion, restraint, antipsychotics and rapid tranquilising
medication) or through neglect/inattention (most obviously, people dying).
Despite five years of national policy to close a large proportion of these
inpatient services, there is little progress, partly due to the resistance of
many of the professionals employed in these services, who invoke ‘complexity’
with little evidence to back them up. I’m not convinced that professionals who
preside over these services should be the only voices at the table when it comes
to guidance on staffing.
Good things are good
things
Coming to the ‘improvement resource’ itself (finally!), I
must admit to being a bit bemused. I’ve only had a quick look, but I’m
struggling to identify much content that sets a clear direction. I find it
useful applying Simon Hoggart’s law of the ridiculous reverse to this stuff, “When I hear resounding stuff like this I mentally reverse it, since it's
a good rule that if the opposite of something is absurd it wasn't worth saying
in the first place.”
Try it on the following quotes. This one, from the
introduction, invokes ‘complexity’ again – note here that this ‘complexity’ is
all about fragmented service systems (which presumably someone could do
something about if it’s that much a problem, rather than assuming this is a
fixed feature of the landscape?):
“Sustainable safe staffing in learning disability services
must take account of the complex nature of the care models and the number and
skill mix of professionals and agencies involved in meeting the healthcare
needs of people with a learning disability.”
“Workforce planning should be an integral part of an
organisation’s strategy.”
On a quick read, the whole document is like this, expressing
the view that good things should be good things, without any recognition of why
services aren’t doing these good things already.
Within the resources
available…
There is a very characteristic rhetorical push and pull
throughout the document, that gives with one hand and takes away with the
other. Take this quote from Section 2: Right Staff:
“There must be sufficient and sustainable staffing capacity
and capability in learning disability settings to provide safe and effective
care to patients at all times. These decisions must take account of the
financial resources available, so that high-quality care can be provided now
and on a sustainable basis”.
The ‘Right skills’ section starts with this statement on
context:
“New models of transformed and integrated care will rely on
healthcare professionals providing expert care to more people at home ‘living
in the community’ alongside families, personal assistants and social care
providers. Learning disability services need to respond to the increasing
complexity of need. Clinical intervention should always be based on ensuring
safety, minimising risks, reducing health inequalities and improving health
outcomes within the resources available.”
I don’t really know where to start with this statement. Why
is ‘living in the community’ in quotation marks? What are these ‘new models of
transformed and integrated care’ – the vast majority of adults with learning
disabilities already live with their families or in supported housing/residential
care, where they should be getting some support from community teams? What are
the ‘risks’ to be ‘minimised’, and what about supporting people to lead
fulfilling lives?
And in the most sinister turn, always the phrase at the end
that negates the rest of the sentence - ‘…within
the resources available’. What if the resources aren’t available? Who is
responsible for making sure the resources are available, and what happens if
they don’t? I find it alarming that a resource on safe staffing seems to imply
that safe staffing is conditional on the resources being available.
A number of recommendations in the document that could be
positive are also written in ways that make me worry about their consequences
in a ‘within the resources available’ world. So, for me there is some
attraction in the recommendation of having flexible banks of staff to support
people in times of crisis without them having to be shipped off to inpatient
units, but at the same time is this a route to a zero hours staff cadre who
only react to crises rather than proactively support staff to reduce the
chances of going into crisis in the first place?
Similarly, the ‘Right place, right time’ section is almost
wholly about reducing inefficiencies and costs. It makes sense to make the
experience of getting support as smooth as possible for people, but the section
is framed in terms of staff productivity rather than what support will work
best for people with learning disabilities. Quotes from a focus group of people
with learning disabilities are included at various points in the document, but
the content of the document doesn’t match what people with learning
disabilities are saying they want/need.
Don’t mention the
nurses
Another consistent theme throughout the resource is to not
mention professional groups or professional training wherever it can be
avoided, presumably with the aim of deprofessionalising the workforce to the
cheapest level possible. This, from section 3 on ‘Right skills’:
“We need to build an adaptable contemporary workforce to
respond to the changing world as a profession, using our resources wisely,
while ensuring that careers remain attractive and accessible to all. Our
ability as a profession to adapt and innovate is critical to achieving high-quality
care in the right place and at the right time. By modernising, we can shape a
workforce that is fit for purpose for the next decade and beyond and positively
demonstrate care, outcomes and experience for those for whom we care.”
What the quote above seems to mean is a route to
de-professionalisation. Given the stranglehold of some professions on the
direction of services for people with learning disabilities, this might not
always be a bad thing. But the ‘generic role templates’ mentioned in the
resource are not reassuring, providing five templates from ‘Support Worker’
(level 3) to ‘Advanced Practitioner’ (level 7) with very long lists of largely
unspecific professionally derived core competencies which do not include the
core competencies of staff that people with learning disabilities and families
are looking for.
This avoidance reaches some sort of peak in the discussion
of liaison roles. There is some consistent evidence that specialist learning disabilities
liaison nurses, in both acute general hospitals and primary care settings, have
a positive impact on the healthcare provided to people with learning
disabilities. However, the resource stops short of any requirements or even
strong recommendations with respect to liaison nurses, and the document itself
studiously calls them liaison practitioners, avoiding any mention that they are
overwhelmingly nurses:
“Commissioners and workforce planners should consider the
importance of providing these posts in a range of services including primary
healthcare, acute physical healthcare, mental healthcare and forensic/prison
healthcare.”
In the ‘right staff’ section, the document says this:
“It is predicted that there will not be enough learning
disability nurses and other professionals with experience of learning
disability in the future. NHS organisations must promote this career choice and
closely monitor those entering graduate placements as well as considering
alternative routes to qualification.”
There aren’t enough now, and the number of learningdisability nurses in the NHS has been plummeting in recent years. No mention of
those publicly available facts – who are these ‘other professionals’ going to
be in the future?
Bizarrely, the section on learning disability inpatient
services doesn’t talk about staffing at all, simply restating other documents’
recommendations about the number of inpatient places ‘needed’.
How will they know?
The final major section of the resource concerns the ‘Safe
staffing dashboard’, asking crucial questions about how to check that services
for people with learning disabilities are ‘safe’ and what to do with that
information. My heart sank at the ‘dashboard’ word though, heavily conditioned
by my reading of years’ worth of Southern Health Board papers for
#JusticeforLB. These Board papers had dashboards a gogo, some of them measuring
(or mismeasuring) exactly the proxy indicators for ‘safe staffing’ recommended
by NHS Improvement here. Southern Health said they were doing all the
walk-rounds and other ‘assurance’ practices presented here, and yet we know
from the Mazars report how the practices of Southern Health were the very opposite
of ‘safe’.
Below is the list of ‘measures that matter’ (yes, the Draft watermark is on the final publicly available version) – are these
really going to get to the bottom of unsafe staff practices when the management
are determined to look the other way?
And what are NHS Improvement going to do about it? For some
years, NHS Improvement have had a good set of six questions about reasonable
adjustments to health services for people with learning disabilities. Every 3
months, all NHS Foundation Trusts report to NHS Improvement if they’re meeting
all six of the criteria set by these questions. The last time any data were
made available (through a Parliamentary question – NHS Improvement do not
publish these returns) every single NHS Foundation Trust reported that they
were compliant with all six criteria – which is a patent nonsense. Do NHS
Improvement check? Not as far as I can see. They are no doubt ‘assured’. The
ongoing train wreck of NHS Improvement’s role in Southern Health, not to
mention how they ‘handled’ the Mazars report, gives me precious little
confidence that they will be fearless champions for patient safety. They will
be much more interested in the finances, and use this guideline as another
stick with which to beat NHS Trusts.
What does it all
mean?
I’ve only had a skim read and I’m probably being a little
unfair. One thing that worries me is that from a near complete lack of evidence,
there is now a ‘thing’, an ‘improvement resource’, which will assume a reality
far beyond its foundations. There are consistent themes of deprofessionalising
the workforce, under the threatening shadow of ‘within the resources available’,
on the hermetically sealed basis of professional ‘expertise’ in the very
services that government policy says should be closing. There is no firm
guidance here at all, with a shrugging of the shoulders about the dangerously fragmented
service systems within which people live and staff work. The world of people
with learning disabilities shrinks to one of being protected. And firm ideas
about how to find out about safe/unsafe staffing and governance are there none.
So beyond the fact that there has to be a guideline, I’m
struggling to see what impact this ‘improvement resource’ will have. Sorry – I think
I need a mince pie.
Felce D & Emerson E (2005). Community living: Costs, outcomes, and economies of scale: Findings
from UK research. In R.J. Stancliffe & K.C. Lakin (eds.), Costs and outcomes
of community services for people with intellectual disabilities (pp. 45-62).
Baltimore: Brookes.
Monday, 28 November 2016
Housing benefit?
A week ago (and many thanks to Donna Glover for pointing me
to this) the Government began an open consultation (responses in by 13thFebruary folks) on the future of funding for supported housing across England,Wales and Scotland.
This is a massive issue, particularly in terms of how much
housing benefit goes into supported housing landlords’ coffers when there is a
serious shortage of affordable housing for rent.
As part of the consultation, the government has published an evidence review conducted by Ipsos Mori, Imogen Blood & Associates, and the
Housing and Support Partnership, using a mixture of official statistics,
datasets, surveys, and extrapolation
Although it’s somewhat ticklish territory given the scale of
the cuts being scythed from public funding to support for people with learning
disabilities, it’s long been my contention that there is still a lot of public
money being spent to institutionalise people with learning disabilities rather
than to really support people to live the lives they want. And a big chunk of
money I haven’t known about is housing benefit – a chunk of money that has
recently probably been getting bigger as local authorities try and shunt some
of their social care accommodation costs on to housing benefit by
re-registering residential care as supported living.
Although there is in this blog my usual dose of finger in
the air calculation, so extreme caution is needed about this stuff, the
evidence review gives us some basic figures to work on. So – here we go…
The evidence review says that there are 38,500 working age
adults with learning disabilities in England (i.e. aged 18-64 years) in some
form of supported housing. This is almost a quarter (24%) of all working age
adults in England in supported housing. Of these 38,500 people, most of the
supported housing is provided by housing associations (24,500 people), followed
by charities (5,500 people) and local authorities (2,000) – ‘other’ (either
private landlords or housing where the commissioners don’t know who the
landlord is because the housing and support is so enmeshed) accounts for 6,500 people.
This doesn’t quite add up to the amounts reported by local authorities in
national statistics but anyway, let’s press on…
Information from private rented providers in England suggest
that, on average, people with learning disabilities in supported housing are
paying £104 per week in rent and £59 per week in service charges. If there are
38,500 people in supported housing, this adds up to a grand total of £208.2
million per year in rent and £118.1 million per year in service charges for
people with learning disabilities. If housing benefit is paying for this, then
this would add up to £326.3 million in housing benefit for supported housing
for people with learning disabilities.
The evidence review also asked as part of their survey how
much local authorities in England were funding for the support elements of
supported housing over and above rent and service charges, and they came up
with a total figure of £640 million per year for people with learning
disabilities (equivalent to £320 per person per week for support).
This is a very quick blogpost just really to alert people to
the report and the consultation so I haven’t had time to digest it, but some
very quick thoughts:
- For working age people with learning disabilities, this suggests that almost a billion pounds a year (£966.3 million) is spent on supported housing, with around a third of this coming from housing benefit.
- Even adding up the rent, service charge and support costs, supported living is still considerably cheaper to the public purse at £483 per person per week than residential care for working age adults with learning disabilities at £1,336 per person per week.
- Following on from point 2), Rochdale and other local authorities planning re-institutionalising routes take note.
- Also following on from point 2), and perhaps
heretically, it’s quite possible that supported housing support is too cheap,
meaning that for many people living connected lives that they want to live
becomes effectively impossible and people become prisoners in their own
homeshousing units. - Last thing – separating the funding sources of housing benefit from local authority funding of support has not resulted in the meaningful separation of housing and support for many people. It has also not stopped a commercially driven drift away from people living in their houses in the middle of their streets, to ‘specialist’ complexes promoted by organisations grabbing a bigger share of the ‘market’. The money needs to be meaningfully controlled by people who can put it to good use, rather than leaving people at the mercy of landlords’ interests while being blamed for their rents being expensive.
Thoughts on this would be very welcome – I may well have
made more mistakes than usual!
Tuesday, 1 November 2016
Where have all the nurses gone?
This post updates and extends a blogpost I did last year
about trends over time in the learning disability nursing workforce in England.
There has been a lot of noise made about the importance of learning disability nurses
in helping people with learning disabilities get decent access
to decent healthcare. On the principle that an organisation’s priorities are
often shown in where it puts its money, what are the priorities of those
training and employing nurses in the NHS?
So, what’s happening to the workforce of nurses working
specifically with people with learning disabilities in England? NHS Digital, as
part of their suite of NHS workforce statistics, 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 2016.
For community learning disabilities nurses, there were 2,571
WTE nurses in May 2010, dropping steadily to 1,973 WTE nurses in May 2016 (a
drop of 23% in 6 years), with numbers stabilising from 2014 to 2016. The decrease
for ‘other’ learning disabilities nurses (presumably in large part working in
general hospitals, although they may also be in NHS specialist inpatient units
or other services) is even bigger and more sustained, dropping from 2,916 WTE
nurses in May 2010 to 1,529 WTE nurses in May 2016 (a drop of 48% in 6 years).
Overall, this is a drop of 36% in the number of WTE learning disability nurses
over 6 years.
Similar figures are also available for specialist learning
disability nursing support staff working in the NHS. The graph below shows that
the number of WTE community learning disability nursing support staff dropped
from 1,805 in May 2010 to 551 in May 2016 (a drop of 56% in 6 years). The
number of ‘other’ learning disability nursing support staff also dropped, from
8,962 in May 2010 to 4,255 in May 2016 (a drop of 53% in 6 years). Overall,
this is a drop of 55% in 6 years.
The equivalent figures for WTE learning disability
psychiatrists working in the NHS are in the last graph below. The numbers here
have hardly changed, from 450 in May 2010 to 432 in May 2016 (a drop of 4% in 6
years).
When looking at this, it’s worth bearing in mind that this
workforce information is for NHS services only – we don’t know how many nurses
and nursing support staff are working with people with learning disabilities in
third sector/private services (particularly specialist inpatient services,
which have increased their, um, market share, shall we say, over this time
period).
In some ways it’s unclear what is going on here. Among other
things, it could be a combination of deprofessionalisation of staffing within NHS
services, a shift towards generic rather than specialist nursing roles, shifting
service patterns (away from NHS inpatient services towards independent sector
inpatient services, for example), and of course straightforward cuts to nursing
roles.
At the start of this post I said that one way to track an
organisation’s priorities is to see where it invests its money. This was too
simplistic – whatever the NHS is now, it’s certainly not one organisation.
Whatever the Department of Health and NHS England may say about the importance
of learning disability nursing, the number of nurses who are trained and
employed isn’t under their control. It’s ultimately down to Health Education
England, over 200 Clinical Commissioning Groups, approaching 250 NHS Trusts,
and almost 8,000 GP practices. Not to mention the almost 900 independent sector
organisations providing healthcare (figures from the NHS Confederation). In a
reversal of Aneurin Bevan’s dictum Whitehall can drop all the bedpans it wants,
but there’s no reverberation in hospital corridors.
Tuesday, 18 October 2016
An employment gap as big as the Ritz
This post is an update of a post I did nearly a year ago
focusing on the paid employment of people with learning disabilities, mainly
using social care statistics for 2015/16 that have been recently released.
This relatively short post focuses on paid employment.
Although the way these statistics are collected changed in 2014/15, 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 from
2014/15 onwards were getting ‘long term support’ from councils (discussed here).
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 2015/16, and standing at 5.8% in 2015/16. There is also a
steady gap in paid employment between men and women with learning disabilities.
This paid employment rate of 5.8% compares to a paid employment rate of 74.5% of the working age population of the UK as a whole in
May-July 2016 (79.4% for men, 69.6% for women).
The
graph below shows the number of adults with learning disabilities in paid
employment from 2008/09 (where the statistics were more dodgy than usual),
broken down into those working less than 16 hours per week versus those working
16 hours or more per week. Of those adults with learning disabilities in paid
employment, 70% were working for less than 16 hours per week (and 30% were
working for 30 or more hours per week), as the graph below shows. This compares
to the general population of the UK, where from May-July 2016 8.1% of adults in
paid employment were working less than 15 hours per week and 91.9% were working
16 or more 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? This information has started to be collected from 2014/15, and is in the graph below.
According to councils, alongside the 5.8% of working age
adults with learning disabilities in employment, a further 10.4% of people are
not in paid employment but seeking work. Almost half of working age adults with
learning disabilities (46.1%) are not in paid employment and are not actively
seeking work. And for over a third of people (37.7%), councils report that they
do not know what the employment status of the person is.
What does this add up to?
First, the gap in employment rates between adults with
learning disabilities and adults generally is absolutely vast, and any policy
designed to halve the employment gap between disabled and non-disabled people
needs to specifically address the issue of paid employment amongst people with
learning disabilities.
Second, adults with learning disabilities are not sharing in
any general improvements in the jobs market – in fact, paid employment is
continuing to get worse rather than better for people with learning
disabilities. Where are access to work, supported employment, further
education, public health initiatives with employers, and public sector
organisations as employers? Are they in fact getting in the way rather than
supporting people into decent paid work?
Third, do the figures on the number of people not in paid
employment map on to significant differences in benefits and sanctions regimes
between people ‘seeking work’ (13,375 people) and people ‘not actively seeking
work’ (59,010 people)? And the number of people with learning disabilities
reported in these statistics are a drop in the ocean compared to the ‘hidden
majority’ of adults with learning disabilities were are presumably also subject
to these benefits and sanctions regimes?
Fourth, the huge number of adults getting long-term support
from councils where councils don’t know their employment status is an indicator
of councils’ priorities when it comes to employment, and of the shoddiness of
their methods for collecting this information. I’ve heard a few fairly
hair-raising stories about individual councils which I won’t share here, but
let’s just say it doesn’t inspire confidence.
Finally, this is one of those things that I really can’t
understand. Many more people with learning disabilities want to have decent
paid jobs than are in paid work at the moment, and we keep being told that
there are all sorts of jobs out there. We know that a decent, fulfilling paid
job can have really positive impacts on people’s lives in all sorts of ways. We
know that people with learning disabilities can be effectively supported into
stable jobs. So why aren’t councils (with the DWP) jumping to provide
cost-effective support to help people into stable employment, rather than
re-institutionalising people at greater cost? Why doesn’t education help teenagers
with learning disabilities to creatively explore the range of possibilities to
suit their strengths and enthusiasms, including entrepreneurial possibilities? Why
are people with learning disabilities being caught in this punitive web of
contradictory (no) expectations?
Isn’t this the fabled territory of the win-win? Councils may
deserve our sympathy for the scale of the cuts they’re having to preside over,
but boy they don’t half make it difficult sometimes.
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