So, the final report from the “Transforming Care and
Commissioning Steering Group”, commissioned by NHS England and chaired by Sir
Stephen Bubb, has been published, with a revealingly difficult to access easy read
version alongside the easy to access difficult version (available herehttps://www.acevo.org.uk/news/winterbourne-view
). How to react to it? How to evaluate it? You’ll be deeply relieved to know I
won’t be going over yet again my thoughts on how the group came about and how
it’s operated, and also my thoughts on the original ‘plan’ drafted before the
group came into being (there’s far too much of that in my previous blogposts).
In this extremely long post I want to ask some specific
questions about aspects of the report and what happens next, before rounding
off with some bigger questions about the prospects for really transformational
change.
The report itself is 46 pages long, including an executive
summary and four appendices, and is worth a careful read, largely because (as
ever) many of the thorniest issues lie in the detail. The report itself was
commissioned by the Chief Executive of NHS England, Simon Stevens, and is
officially a report to him for NHS England to consider and respond to. There
are going to be some candles burning in NHS England Towers if they’re going to
respond by Christmas, because on my reading ‘Winterbourne View - Time For
Change’ (WVTFC? I’m not going to get a Countdown Conundrum out of that bunch of
consonants…) has left NHS England with a lot of work to do, in at least two
major ways. First, ‘Time For Change’ states general principles and directions
in a number of places without presenting detailed proposals for how these could
be made to happen (which is where the hard thinking is required). Second, ‘Time
For Change’ in some ways gives itself a broad remit, while at the same time
remaining largely disconnected from relevant legislation, policy developments
or important aspects of practice concerning people with learning disabilities.
I’ll give some examples of where I think these issues arise as I go.
People with learning
disabilities and/or autism and their families (and their dog Spot…)
One of the biggest issues of scope lies in the subtitle to
the report “Transforming the commissioning of services for people with learning
disabilities and/or autism”. I think the “and/or autism” is relatively new (the
phrase is used throughout the report) and has big implications which are not
recognised in the report itself. Although there are many people with both
learning disabilities and autism, there are also a lot of people with learning
disabilities and not autism, and a lot of people with autism and not learning
disabilities. Improving Health and Lives has estimated that around one third of
people with learning disabilities also have autism and between 50%-60% of
people with autism also have learning disabilities http://www.improvinghealthandlives.org.uk/publications/936/The_Estimated_Prevalence_of_Autism_among_Adults_with_Learning_Disabilities_in_England
So these are very diverse groups of people with diverse needs – will this plan
really encompass all of them? And in a straight up example of the disconnect
with existing legislation and policy, I could see no mention in this report of
the Autism Act and the Autism Strategy: how do the plans in this report fit (or
not?) with these?
Challenging behaviour
Another big issue of scope concerns the focus on the
‘challenging behaviour’ group – apparently likely to be around 24,000 people in
England. There are welcome, strong statements throughout the report about the
importance of early, preventive community support for this group. At various
points in the report there are nods to people with other needs that are likely
to be highly relevant (mental health needs, for example, where a NICE scoping
paper suggests that 28% of adults with learning disabilities are likely to
experience a mental health problem (excluding ‘challenging behaviour’) https://www.nice.org.uk/guidance/gid-cgwave0684/resources/mental-health-problems-in-people-with-learning-disabilities-final-scope2),
but they are not included in the report in any meaningful way.
There are a number of potential consequences of this. How
many admissions to specialist learning disability inpatient services come from
the “24,000 people with severe challenging behaviour” group? My guess is that
there are a lot of admissions to inpatient units of people who wouldn’t fit
into this group beforehand (or only become so very quickly – including people
who break the law and end up in inpatient services rather than prison). So –
supporting the 24,000 people with severe challenging behaviour is absolutely
crucial and to be wholeheartedly supported. But it’s unlikely to include people
who develop signs of severe distress and/or mental health problems or some of
the typical crisis-led commissions into inpatient services where it seems to
happen out of the blue. Another reason why I would want to cast the decent
community support net much wider than the ‘challenging behaviour’ group is that
this has the potential to create yet another service/support where a person has
to demonstrate their ‘problems’ to get good support, and there could be more
fraught boundary-policing of who is ‘challenging behaviour’ and who isn’t. What
happens if the community support works so well that the person doesn’t show
‘severe challenging behaviour’ when they have this support – will it be scaled
down/withdrawn?
Another tension brought about by this narrow focus on
challenging behaviour is the report’s recommendation of a ‘workforce academy’. The
workforce academy is clearly a rebadged Positive Behaviour Support Academy http://profhastings.blogspot.co.uk/2014/08/do-we-need-positive-behaviour-support.html
). Particularly if directed towards people with autism, I think this will get
very mixed reactions. I think developing the workforce across the system is
great, but for me it should be much more broad-ranging than a Challenging
Behaviour Academy if the intention is to develop meaningful community supports
for people in a world of widespread personal budgets where the whole notion of
workforce changes radically. Just a few examples: training people to be good
Personal Assistants, training for supporting people into paid employment (wouldn’t
it be good to get the Department of Work and Pensions involved here and extract
money from their disastrous work programmes?), or training people with learning
disabilities and families to be good commissioners (individually and collectively).
And why not have this broad-ranging workforce academy directed by people with
learning disabilities and/or autism and their families?
Personal budgets
‘Time For Change’ recommends a rapid extension of personal
(health) budgets, with a welcome recognition that the person and
families/allies need to have control over how they want their budget to be
administered (direct payment, broker, family direct payment, individual service
fund etc etc) and to be supported in their decision. Why not extend this to
everyone with learning disabilities and/or autism? (if people want them – they
are the means to an end rather than an end in itself). They also need to
dovetail with Education, Health and Care plans for children/young people and
also social care personal budgets (as far as I can see, both unmentioned in ‘Time
For Change’). Finally, why not create security for people and families by
having longer-term guaranteed personal budget amounts, rather than guaranteeing
incomes for providers? (of which more later).
Rights
Strengthening rights is another major (and welcome) focus of
‘Time For Change’ – it will be good to know how these rights dovetail with
Norman Lamb’s plans for a Green Paper. Much of this is about restating people’s
existing rights under existing legislation into a “Charter of Rights for people
with learning disabilities and/or autism and their families, and it should
underpin all commissioning”, with the important addition of people having a
‘right to challenge’ their admission or continued placement in inpatient care.
Having seen the clarity of thought and rigorous testing that the draft LB Bill
is being put through (https://lbbill.wordpress.com/
), the ‘Charter of Rights’ in this report seems much more limited and unclear
in its scope. The starting assumption of ‘Time For Change’ seems to be that, on
the whole, sufficient rights exist in current legislation if only people with
learning disabilities and/or autism (and their families? the rights of families
vis a vis the rights of adults with learning disabilities and/or autism are
never clearly spelled out or identified as an issue in this report) realised it
and were supported to exercise these rights.
Don’t get me wrong – the proposals in ‘Time For Change’ are
useful – I’m just not convinced that they’re strong and systematic enough given
the grave human rights abuses that some people with learning disabilities and
their families are experiencing right now. As Neil Crowther has noted in his
recent blogpost (http://makingrightsmakesense.wordpress.com/2014/11/21/the-difference-between-institutionalisation-and-independent-living-is-the-difference-between-abusing-human-rights-and-respecting-them/
) “We need to
name this treatment for what it is: not poor quality care as though we were
simply talking about a matter of customer service. Such experiences amount to
the gravest of human rights violations – on a par with those in Africa or
Eastern Europe in relation to disabled people.”
The
‘Time For Change’ report is understandably reticent about confronting the
reality of what can really happen in inpatient services (and in other places
too): according to the report clinicians, commissioners and service providers
all want to do the right thing, it’s just that it’s apparently too easy to do
the wrong thing and too hard to do the right thing. I can see that apportioning
blame in a report of this type may not be very helpful in motivating people to
change, but the worry for me is that this assumption that everyone is a
reasonable person trying to do the right thing will not tackle the malign and
toxic service cultures that can and do exist. If a commissioner doesn’t play
ball, a clinician refuses to discharge anyone, a provider continues to expand
inpatient services, a family is systematically lied to, what happens then?
Mechanisms for real accountability in ‘Time For Change’ are unclear (again, any
agency doing something terrible is going to be supported to improve, unless the
bad cop CQC is invoked) – another tricky task for NHS England to respond to.
Another
specific and welcome proposal is for tenants with learning disabilities and/or
autism to retain the rights to their home if they are admitted to an inpatient
unit. As of 2012/13, around 23,000 adults with learning disabilities were
owner-occupiers or legal tenants, compared to over 28,000 people in residential
care or a nursing home, nearly 25,000 people in unregistered supported living
or group homes, and over 50,000 people living with their families. Legal rights
for these groups are also crucial.
There is a final fundamental issue related to rights in ‘Time
For Change’, and that is the issue of power. There are powerful general
statements in ‘Time For Change’ about the importance of people with learning
disabilities and/or autism and their families being empowered as ‘agents of
change’. There are specific proposals which involve people with learning
disabilities and/or autism and their families (I know this blogpost is
obscenely long, but I partly blame the length of this phrase! PWLDA/OAATF??? –
can I just say people from now on?) in individualised
consumer/patient/after-the-fact scrutineer roles. Proposals about people in
real positions of power (in commissioning, for example) are somewhat less
specific, with phrases like local commissioners having to demonstrate “How
these plans have been co-produced with people with learning disabilities and/or
autism and their families, providers and clinicians”. Last year, every single
Learning Disability Partnership Board in England stated that there was “Clear
evidence of co-production in all learning disability services that the
commissioner uses to inform commissioning practice.” (https://www.improvinghealthandlives.org.uk/publications/1233/Joint_Health_and_Social_Care_Self-Assessment_Framework_RAG_and_thematic_analysis
). Am I allowed to say ‘hmmm’ at this point? Proposing scrutiny via Learning
Disability Partnership Boards is going to sound hollow in many places where
Partnership Boards have little/no effective power or authority, and where
people have marginal places at the table.
Commissioners…
Given the hopelessness of local commissioning in some parts
of the country, I like the report’s idea of a mandatory commissioning
framework. However, I also think that with current commissioning structures
there is no obvious place to put the commissioning responsibility. Clinical
Commissioning Groups (CCGs) are local, but services for people with learning
disabilities are relatively niche for them in terms of the volume of stuff they
commission, and most of them have little interest and less expertise in
commissioning services for people with learning disabilities (and the most
recent NHS England figures suggest that it’s good old command and control via
NHS England specialist commissioners that are making the running on discharge
plans etc compared to somewhat sluggish CCGs).
How are local budgets going to be pooled with local
authorities, NHS specialist commissioners and others (education anyone?)? Last year, just over half (58%) of Learning
Disability Partnership Boards were claiming to have well-functioning joint
commissioning arrangements between health and social care (https://www.improvinghealthandlives.org.uk/publications/1233/Joint_Health_and_Social_Care_Self-Assessment_Framework_RAG_and_thematic_analysis
). Will the funding be ring-fenced? What’s to stop commissioners (health and/or
local authorities) siphoning off this money and spending it on their higher
priorities? There is also a huge question about the allocation of
resources/support for children/young people vs adults. The NHS England Five
Year Forward View states that there generally needs to be more early
intervention and preventive work, yet the bulk of identifiable spending on
services for people with learning disabilities is directed towards adults – are
commissioners brave enough to redirect resources from adults to children?
I also have grave doubts about the capacity of local
commissioners to be able to plan properly, as ‘Time For Change’ recommends they
should. An IHaL analysis of Joint Strategic Needs Assessments due out shortly (JSNAs:
every local area produces one of these, which is supposed to bring together all
the information on the needs of the local population with a plan for how to
address these needs) reported that over a quarter of JSNAs did not mention
people with learning disabilities at all. Just under two-thirds of JSNAs
included any information at all on adults with learning disabilities, and only
a quarter of JSNAs included any information at all on children with learning
disabilities. Powerhouses for effective planning and commissioning?
…And providers
Although the commissioning framework is described as
‘mandatory’, it is unclear what would happen to commissioners if they did not
conform to this mandatory framework, apart from being ‘supported to do better’.
We have seen how large, geographically dispersed and remote ‘specialist’
providers can run rings round locality-based commissioners, and how
commissioners can play pass the responsibility parcel between themselves.
And ‘Time For Change’ recommends as part of this mandatory
commissioning framework a worrying level of collusion
sorry, collaboration with providers. The report is very concerned about the
welfare of providers, having to set up expensive support services with no
guaranteed prospect of business. I agree that commissioners need to play an
active role in ‘market shaping’ (yuck phrase) – making sure that supports exist
locally that people would want to use. But phrases like “[Commissioners] also
need to engage with providers more proactively in planning services for
individuals and the population as a whole, giving providers greater
opportunities to put forward alternative options” begins to smell like
long-term block contracts to me. My question here is why place the security
with the providers? Surely if anyone needs security, it’s people with learning
disabilities and/or autism and their families? What if people had long-term
security in terms of the amount of their personal budget, for example – couldn’t
people (individually and/or collectively) then negotiate with potential
providers from a position of strength to get the support they want right from
the start? And why isn’t it proposed that the money follows the person out of
an inpatient unit – a strong and simple incentive for a commissioner not to use
them?
There is also a weird (to me, anyway), proposal that
community-based providers should be given a ‘right to propose’ alternatives to
inpatient care. I may be misreading this, but it conjures a mental picture of
ambulance-chasers with glossy brochures hammering on the doors of inpatient
units to ‘just have a little chat’ with a person who has just been admitted?
Note: Sir Stephen Bubb is Chief Executive of ACEVO, an organisation
which includes the Chief Executives of several large voluntary sector providers
of housing and support services to people with learning disabilities and/or
autism.
Social investment
Although my understanding is still very limited, I’m less
convinced than ever that the social investment recommended in ‘Time For Change’
is needed. To be honest, the £200 million the report talks about raising
through social investment is relatively small beer in terms of what the state
is already spending on services for people with learning disabilities (in my
latest reckoning, I got to around £7 billion a year fairly quickly). The state
might not be spending enough, and they’re certainly not spending it wisely, but
if they’re serious about pooled budgets etc then there’s a lot of money to play
with. There might need to be some transitional extra investment (which could be
paid for several times over from recent banking sector fines, for example), but
I’d much prefer to see money stay within services rather than going into the
pockets of social investors.
I’m also unconvinced that this £200 million needs to be
primarily spent on buildings – I’ve gone on about this at length before but
‘special’ buildings aren’t the answer – good support that starts from the
premise that people are self-determined citizens is what’s needed. And once
‘special’ buildings exist, with interest to pay to social investors, we have a
business model that requires them to be filled.
Note: Sir Stephen Bubb is Chairman of Social Investment
Business.
Closures
‘Time For Change’ does have a section on the importance of
having a closure programme, although to me it pulls its punches (or again,
leaves the hard decisions to NHS England) in terms of whether specialist
learning disability inpatient services will be necessary and if so, how many of
what type? The report says little about offenders with learning disabilities
diverted from prison into inpatient settings, or about services with different
levels of security, and I worry that between the lines this group of people are
not to be included in this plan and left where they are. Proposals for the
closure programme are also relatively unspecified, and somewhat fragmented.
Given the report mentions the potential for other living situations to also be
‘institutional’ in character without any specific proposals attached, it is
important for these local authority-funded services to be brought into the
equation too.
Be realistic: demand
the impossible?
I know I’ve gone on about this over and over again, but I
keep thinking about Katherine Smith’s
excellent book on how public health evidence does (and doesn’t) get into
public policy and practice. In my simplistic reading of her thesis, evidence
needs to be packaged as an ‘idea’ that can then pass through/be bent to fit a
whole series of institutional filters to emerge out of the other end as an
‘idea’ acceptable to implementation in policy and practice.
Dr Smith suggests the following ‘institutionalised ideas’ as
a first set of filters for public health evidence to accommodate to, and I
think they’re highly relevant to disabled people generally and people with
learning disabilities in particular. ‘Institutionalised ideas’ are received
ideas – the fundamental (and largely unquestioned) assumptions that politicians
and policymakers make:
1) A medical model of health. To quote from Dr Smith (page
119) “A medical model of health positions good health as a norm and ill health
as a deviation from this norm which health services and medical treatments may
be able to rectify. Consequently, medical models tend to view health outcomes
in an individualised, rather than societal or cultural, sense. The
institutionalisation of a medical model of health is particularly problematic
for research-informed ideas about health inequalities which suggest the causes of
health inequalities are societal and that the most promising responses are
non-medical”.
2) Economic growth as the primary policy objective. Again,
to quote Dr Smith (page 125) “…the idea that economic growth is (and should be)
the fundamental policy aim of national government, subsuming all other policy
aims”.
Dr Smith also suggests a number of ‘policy facilitators’
that increase the chances of an idea being taken up and implemented. These
include:
1) Being able to articulate a positive policy alternative as
a result of the idea, rather than using the idea only as a critique of existing
arrangements.
2) Having broad coalitions (in our context including people
with learning disabilities, family members, lobbying and pressure groups, NGOs,
policymakers and professionals, journalists and academics), with an agreed idea
and specific programme associated with it. Such broad coalitions may well
differ on other issues or ideas, but have a core programme which can be agreed.
3) The idea being able to be implemented within existing
institutional structures within government or other agencies (for example by
being the responsibility of a specific government department or agency such as
NHS England).
For me, the ‘Time For Change’ report is (inevitably, given
its provenance) trying to come up with proposals that are consistent with these
institutional ideas (a quasi-medical reduction of the totality of people’s
lives to the treatment of ‘challenging behaviour’; leveraging in ‘social
investment’ for ‘cost-effective’ solutions). It is also trying to claim it is a
positive policy alternative to an intractable policy ‘problem’ that has been developed
by a broad coalition of people, and that will be the responsibility of one
agency, NHS England.
Yet ‘Time For Change’ is also struggling to contain the
reality of the lives of people with learning disabilities and/or autism and
their families, which spills out far beyond these constraints (and towards
which the report is being pulled, for example in terms of rights and pooled
commissioning). A social model rather than a medical model, where societies
have a responsibility to enable people to lead a fulfilling life of their
making. The idea that a person’s economic productivity is not a measure of
their contribution to society. Support that starts with the person, not with
where the money is coming from (education? health? social care? benefits?
training? tax credits? support and inclusion in communities beyond
‘services’?).
Which brings me back to the question I posed at the
beginning of this blogpost, a long, long time ago. How to react to it? How to
evaluate it? My view is that it contains some good ideas, some not so good
ideas and a whole host of half-formed ideas, which I would hope would be
sharpened and improved in an NHS England response to it. However, it is working
within a set of institutionalised constraints and, however improved these ideas
become, are any set of proposals working within these institutionalised
constraints really enough to seriously address what needs to happen for people
with learning disabilities and their families?
Increasingly, I’m thinking the answer to this question is
no. So what are the options, if ideas flexed to fit institutionalised
constraints aren’t going to cut it? Well, there’s what Dr Smith describes as
critical ideas (see the table below) – which I’ve indulged in myself on a
regular basis. Or there’s trying to pitch for what Dr Smith describes as
charismatic ideas (again, see the table below) – with the proviso that
charismatic ideas are extremely rare and the chances of success are minimal to
non-existent. Yet there may be straws in the wind to shake current
institutionalised ideas. The NHS England Five Year Forward View (http://www.england.nhs.uk/ourwork/futurenhs/
) can partly be read as a challenge to a medical model that is increasingly
ineffective and costly, with much greater attention being paid to ‘preventive’
ways of supporting people that are much more social in character. The wisdom of
only focusing on economic growth as an indicator of a society’s ‘success’ is
also being challenged, both from an inequalities and from a societal well-being
agenda. The fetish of paid work as the marker of a person’s contribution to
society is also being shaken by ideas such as the citizen’s income.
Are there specific positive alternatives that can be
proposed by and for people with learning disabilities and/or autism and their
families? Can effective broad, coalitions be brought together with some agreed,
specific goals? What remade government and other structures would be a good fit
for supporting people with learning disabilities?
Don’t know, don’t know and don’t know. Don’t even know if
I’m the right person to ask these questions. But there are choices to be made –
work within current institutional ideas to make services better, critique
what’s done, or aim to overturn institutional ideas completely. Who’s up for
charismatic change?
Key features of critical and charismatic ideas (Smith, 2013,
page 153)
Critical ideas
|
Charismatic ideas
|
Critical of existing ways of thinking about an issue in ways that
challenge institutionalised ideas
|
A way of thinking about an issue that provides an alternative vision
of reality to institutionalised ideas
|
Dismissed by most actors as ‘irrational’ and easily identifiable as
an ‘idea’ or theory (as opposed to a ‘fact’)
|
Initially dismissed by many as ‘irrational’ but, over time, taken
seriously (particularly by actors who are dissatisfied with elements of
existing institutionalised ideas), eventually becoming institutionalised
|
Not widely discussed, with support being restricted to small groups
who are unlikely to be operating cohesively and may struggle to reach
agreement with one another about the best way to proceed
|
Easily identifiable as an ‘idea’ or theory at first but subsequently
evolves into an accepted fact or paradigm
|
Not evident in mainstream media (instead restricted to ‘radical’
journals, magazines, blogs etc)
|
Initially only evident in non-mainstream media but gradually taken up
by mainstream media
|
Evidence-base is limited partly by the limited interest among
research funders and others
|
Supported by a cohesive group of actors who work collectively to
promote the idea and research with which it is associated
|
Being associated with these ideas may damage actors’ credibility
among mainstream policy and academic audiences
|
Growing funding interest in the idea facilitates further research
activity
|
Do not post a significant threat to institutionalised ideas, as
likely to be ignored by mainstream audiences
|
Although initially deemed radical, the actors initially associated
with this idea will become increasingly respected
|
Unlikely to lead to any significant change
|
Extremely rare
|
Unlikely to lead to gradual change via policy learning and knowledge
exchange and, instead, likely to stimulate change through political and
societal shifts and pressures
|
References
Smith, K. (2013). Beyond
evidence-based policy in public health: The interplay of ideas.
Basingstoke: Palgrave macmillan.
