The times, they are (not) changing

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.