“If we want things to
stay as they are, things will have to change”* – Some questions about commissioners
and inpatient services for people with learning disabilities
ü
A horrendous scandal in an inpatient service,
with national media coverage and accompanying outrage? Tick
ü
Criminal prosecutions for the staff involved?
Tick
ü
A government minister committed to change who
remains in post long enough to see things through? Tick
ü
A high-profile national programme with (some)
money put behind it? Tick
ü
Clear targets for services to achieve, with
clear deadlines? Tick
ü
Ongoing monitoring and scrutiny of the national
programme? Tick
Yet with all these conditions in place (and scandal too
often is the trigger of change), one year and more on from the start of the
Winterbourne View Joint Improvement Programme, there is a palpable sense of
disappointment in the slow progress being made in helping people with learning
disabilities move on from inappropriate inpatient units (a previous blog of
mine discusses these units in some detail https://www.blogger.com/blogger.g?blogID=1016904785776950121#editor/target=post;postID=305625676702541356;onPublishedMenu=posts;onClosedMenu=posts;postNum=4;src=postname
).
I don’t
intend to spend a lot of time here documenting all the evidence that underpins
this disappointment. One excellent source is the Department of Health’s own
one-year on progress report (available here https://www.gov.uk/government/publications/winterbourne-view-progress-report ), where the Minister of State,
Norman Lamb, himself says:
“As you’d expect, this, and future work, is conducted in
partnership with a wide range of individuals and organisations from across the
health and care sector. Such a broad church of views and interests cannot be
permitted to slow the pace of change. Indeed, we need to pick up that pace if
we are to make sure no patient finds themselves in inappropriate care settings
beyond June 2014. I fully expect and encourage the people that matter most, the
self-advocates, family carers and the voluntary sector organisations
representing them to make sure we not only work with them but that we do not
delay unnecessarily the improvements and transformation in services, care and
support we all want to see.
I make no apologies for this impatience. It would be an insult to the
experience of those who suffered at Winterbourne View - and to all those who
have suffered at the hands of the cruel and the cowardly – if we were to fail.”
(https://www.gov.uk/government/speeches/winterbourne-view-1-year-on
).
Also worth a look is the Health and Social Care Information
Centre initial report of the Learning Disability [In-Patient] Census 2013
collected information from providers of inpatient services (http://www.hscic.gov.uk/catalogue/PUB13149
). They reported that 3,250 people with learning disabilities were in inpatient
units; 60% of people had been in the inpatient service for at least one year;
18% of people were located in services at least 100km away from their ‘home’
postcode; and for 28% of people service providers could not supply a valid ‘home’
postcode.
In March 2014, NHS England released its first
quarter of information collected via commissioners about people with learning
disabilities in inpatient units, and how many of them had been transferred out
of such services or had clear plans to do so (http://www.england.nhs.uk/ourwork/qual-clin-lead/wint-view-impr-prog/
). These data show that as of 31 December 2013, there were 2,577 people with
learning disabilities recorded as inpatients (although many commissioners
didn’t provide any information to NHSE, so this number is a substantial
underestimate). Only 10% of people had a transfer plan with a date, and from
Oct-Dec 2013 twice as many people were transferred into these services (247
people) as people transferred out (124 people). By far the most common reason
offered for a person not having a transfer date was a ‘clinical decision’
(recorded for 1,108 people); lack of agreed funding (48 people); lack of local
services (84 people); and lack of suitable housing (93 people) were less
commonly reported.
A recent study of delayed discharges from one English
learning disability hospital by John Devapriam and colleagues (available in
full here http://pb.rcpsych.org/content/early/2014/04/01/pb.bp.113.044388.full.pdf+html
) reported that there were delayed discharges for 14 of the 49 people who
entered the hospital over a 12-month period, with delays largely related to
delayed assessments and a lack of funding and services for people to move on. The
average time from a person being formally considered as fit for discharge to
them actually being discharged from the hospital was 283 days.
The Hour of
Bewilderbeast
As more information is made available about the (literal)
lack of movement so far in response to the Winterbourne View Joint Improvement
Programme, I find myself having a lot of conversations with colleagues, friends
and family sharing a general sense of bewilderment. Perhaps naively (or perhaps
as a result of a folk-memory of institutional closure programmes) I had a
belief that a determined government with a clear policy could drive change from
the centre when it comes to a focused programme with clearly identified goals.
How does such a substantial network of inpatient services
for people with learning disabilities exist, when it has been clear policy
across governments that services wherever possible should be local and
non-institutional? How can these services continue to exist (and indeed,
seemingly thrive) in an environment where it is government policy for their
numbers to drastically reduce?
There are many potential explanations, many of them shared
by the Justice for LB campaign which is fighting for justice for Connor
Sparrowhawk, a young man who died a needless, preventable death in an
assessment and treatment unit [for the latest news on the campaign, as well as
a record of blogs and activities from people showing their support for
@sarasiobhan and @JusticeforLB, please go to ‘The Connor Report’ on
@sarasiobhan’s blog here http://mydaftlife.wordpress.com/the-report/
) or the JusticeforLB facebook page here https://www.facebook.com/JusticeforLB
].
In this blog I want to confine myself to asking some
questions about the role of commissioners in the maintenance of these inpatient
services for people with learning disabilities. These questions are definitely
not coming from a position of expertise when it comes to understanding the
behaviour of commissioners, and I hope they will spark a conversation.
The weakness of
commissioners
First, for all the talk of commissioners holding the purse
strings and therefore being in a position of power in relation to the provider
services they commission, service providers seem to have commissioners over a
barrel, quite bluntly. I would be very interested to see information on how
many services for people with learning disabilities have been decommissioned by
commissioners in the past decade – my impression is that commissioners are
extremely reluctant to pull the plug on a poor service and commission something
different from a different provider. If this is the case (and my impression may
well be wrong), why?
·
Are service providers seen as ‘too big to fail’
by commissioners? If so, then this presents a real problem, as the trend (in
the NHS, independent and voluntary sectors) is for service provider
organisations to be getting bigger through mergers and acquisitions. There are
also signs that both health and social care commissioners, rather than moving
towards the commissioning of a range of flexible, small-scale support services,
are seeking predictability in bigger block contracts with ‘reliable’ provider
organisations (even if these turn out to be more expensive than the innovative,
local alternatives).
·
In this environment, independent voices that can
challenge poor practice from providers (principally organisations of
self-advocates and families) are been squeezed out in favour of similar block contracting
of increasingly generic, ‘professional’ advocacy.
·
There often isn’t much of a ‘market’ for
commissioners to choose from locally, with commissioners reliant on a small
number of big local providers, and any stated intentions from a commissioner to
decommission a service would presumably sound pretty hollow.
·
Presumably within the ‘patch’ of a health or
social care commissioner, there are longstanding relationships with
professionals and managers in provider organisations, with some circulation of
senior (clinical?) people between commissioning and provision? Human
relationships are obviously really important for collaboration and smooth
working relationships, but there is also a danger of these relationships being
a barrier to the identification of poor service practices and consequent firm
action from commissioners.
·
It
seems to me that health and social care commissioners are extremely loath to
decommission any service, no matter how bad or contra government policy, and
they’re relying on the regulators (CQC and Monitor) to make these decisions for
them. The problem is that the regulators either don’t have the power to do this
at a collective provider level (CQC) or are so hands-off and focused on the
finances that it would take an absolute earthquake for them to do this – which
comes too late for the people who’ve suffered or worse within that poor service
(Monitor).
Second, the arrangements for health (CCGs and possibly the
shadowy CSUs, and before them the PCTs) and social care (local authorities)
commissioning seem to assume a local health and social care economy – that
local commissioners will commission from local providers in their patch. As NHS
Foundation Trusts use ‘business models’ to expand their business, this means
that NHS health providers are increasingly geographically sprawling and
becoming detached from any one local health economy. The same is already true
for independent and voluntary sector health and social care providers. CCGs and
local authority commissioners seem poorly placed to hold such large and distant
providers to account locally.
Social services seem equally in thrall to commissioning from big providers when
they should be more adept at actively commissioning a range of local providers,
actively monitoring what they’re doing, and shifting commissioning around so
that bad providers can be decommissioned quickly.
Third, the sheer complication of commissioning arrangements
(within the health sector alone, this could be coming from a CCG, CSU, Specialist
Commissioner or NHSE (within area teams or nationally)), with their boundaries
and remits constantly shifting (and not linking up with the boundaries of
social care commissioners) really weakens commissioners’ attention to (and
strategic planning for) services for people with learning disabilities. Joint
commissioning arrangements between health and social care when it comes to
services for people with learning disabilities are similarly varied and in
flux. There is no real clarity about who is responsible – a classic environment
for diffused responsibility.
Fourth, financial incentives for providers set by
commissioners (e.g. through CQUINs or through withholding some funding from
poor services) can perversely lead to providers trying to ‘game’ the system for
financial gain, resulting in the opposite of a culture of openness and honesty
between providers and commissioners.
Taking these points together it seems that commissioners, far from
holding the one ring to rule them all, actually either
don’t have any effective levers to use with providers, don’t realise they have
any levers, or choose not to use the levers they have. The fragmented structure
of health and social care seems almost designed to ensure that no-one feels
they have exercisable power to call out on bad stuff happening in services for
people with learning disabilities and to stop that bad stuff happening. Instead,
the commissioners seem to be operating on a weak model of ‘influencing’, which
presumably only works if everyone else in the system is open, honest, genuinely
trying to do their best and is looking for ways to get better. This is not
always the case, and an ‘influence’ model of commissioning is a terrible model
when services are awful and important elements in the organisation providing
that awful service don’t seem to care. It seems to me that providers are able
to resist any pressure being brought to bear with apparent impunity.
Commissioners are bad at spotting badness
As I’ve discussed above, it
seems to me that commissioners are extremely reluctant to decommission poor
services and are operating an ‘influence’ model with increasingly big providers
which only serves to highlight the apparent weakness of the commissioners’
position. My questions here are whether some of this apparent weakness stems
from the lack of effective attention that commissioners pay to the quality of
the services for people with learning disabilities that they commission. In
particular, how would a service commissioner know, in a timely way, that they
are commissioning a bad service for a person with learning disabilities. And if
a commissioner knew this, what could they do about it quickly and effectively?
Commissioners need good,
regular information on the quality of the services they’re commissioning (at
the level of individual services and also at the level of individuals using
these services). I think there are a number of reasons why commissioners aren’t
getting this information, particularly when a provider service is (unwittingly
or otherwise) poor:
·
Commissioners
seem to rely on most of their quality information from the provider, with
little independent evaluation of service quality or attempts to independently
gain information on the experiences of people with learning disabilities and
their families concerning the services they are using.
·
It’s
also clear that most of the information that health commissioners in particular
use are around the other things they commission and obviously understand
(volumes of waiting times, throughputs etc) and they don’t know what
information they should be looking at in determining the quality of services
for people with learning disabilities. Again, commissioners often seem to rely
on the provider to tell them how they should be assessing quality.
·
Services
for people with learning disabilities are always (literally!) at the bottom of
the agenda for health service commissioners, and not very important to them in
how they think they’ll be judged from higher up in the NHS (particularly in
terms of finances) or publically.
·
Commissioners
typically look at issues in terms of volume. It is much rarer for commissioners
to commission on the basis of what is best for individuals, and they rarely
regularly evaluate providers’ quality in terms of whether they’re meeting
individuals’ needs.
·
It
seems to me that health and social care commissioners are increasingly relying
on CQC inspections to make judgements on the quality of service providers. CQC
inspections have acquired some (metaphorical) cojones recently, but CQC can’t
get round all the individual services regularly enough for them to be relied on
to pick up on poor services quickly enough.
·
Health
and social care commissioning is increasingly becoming generic in structure,
with fewer specialist learning disability commissioners and expertise (and
available time) diminishing. In this environment, do commissioners have a clear
idea what a good (and bad) service for people with learning disabilities would
look like?
·
Commissioners
have become physically (and to a certain extent culturally) separated from the services
they commission. Is it much more difficult to get a really good sense, over
time, of a service when you have to arrange a special visit, taking out an
entire work day, rather than just popping in regularly without necessarily
having to ask permission first? It also means that meetings about service quality
are largely just that – meetings between groups of professionals who all speak
the same language – and there are real signs of disconnect between the
assumptions and judgements agreed in these meetings and the reality for people
with learning disabilities and their families.
A
price worth paying?
If commissioning services for people with learning disabilities,
particularly people with ‘challenging behaviour’, is a low-priority niche for
commissioners with more important (to them) things on their mind, it’s possible
that current commissioning arrangements for inpatient services suit
commissioners rather well. Is the high price of individual inpatient placements
for commissioners a price worth paying, if it means that they don’t have to
develop a decent local strategy, and ‘difficult’ local people get outsourced to
other organisations in other places, who will take the public opprobrium if
people in those organisations are badly treated? The Winterbourne View Joint
Improvement Programme is just as challenging for commissioners as it is for
providers, and perhaps it isn’t wholly surprising that some commissioners are
resistant to change.
In an environment where government seems to have given away most of
its levers of power with regard to the NHS, commissioners are bearing much of the
weight of expectation in the Winterbourne View Joint Improvement Programme. Yet
if this blog makes sense, the trends are all in the wrong direction for
commissioners to exercise effective leadership. Compounding my pessimism is
service integration, a juggernaut guided by satnav with no regard to the
reality of the roads it is travelling along. To my mind, integration of health
and social care may only make things worse for people with learning
disabilities – trapping people in ever bigger provider organisations with
totalising tendencies (remember one of the central insights of supported living
– that a person’s housing should be separate from their support, so people can
sack their support without also having to move home?) that will place
commissioners in an even weaker position.
I’m someone who (obviously!) isn’t a commissioner, and I would be very
interested to hear what more informed people than I think about this blogpost.
Does any of this make sense, and if it does, are there any prospects for
improving the situation so that effective commissioning can serve the
aspirations of people with learning disabilities and their families nationally
and as a matter of course?
* The quote in the title
comes from one of my favourite novels, The Leopard, by Giuseppi Tomas de
Lampedusa, and is uttered by Tancredi, the dashing but shape-shifting nephew of
the novel’s aging Sicilian prince (the leopard of the book’s title). The photo
is of Alain Delon, who played Tancredi in Visconti’s film of the novel,
possibly the only film that takes longer to watch than its source novel does to
read…
