(I can't get low) satisfaction

I was intrigued by a tweet from @mithransamuel  this morning (sorry, can’t work out how to screengrab it for some reason), saying “Interesting claim from @ADASSDavidP that improved satisfaction in @hscic service user amid cuts the result of more personalisation”. This claim was made in an ADASS ‘state of social care’ piece available here http://www.adass.org.uk/facing-up-to-the-dilemma-of-social-care/

In this blogpost, I don’t want to talk about the personalisation issue but about the measurement of satisfaction and the political uses to which this measurement can be put. Specifically, there are a number of issues with the ASCOF (as there would be with any measure of satisfaction) which repay close attention. As my particular interest is with people with learning disabilities, I have been intrigued, to say the least, about the much higher rates of reported satisfaction amongst people with learning disabilities compared to other groups of people using social care over repeated iterations of the Adult Social Care Survey.

For example, the provisional data for 2013/14 report that 79.8% of people with learning disabilities were ‘Extremely satisfied’ or ‘Very satisfied’ with the care and support services they receive (Question 1), compared to 62.8% of people with physical disabilities/frailty/sensory impairment, 63.6% of people with mental health issues, 56.6% of people with substance misuse issues and 66.1% of vulnerable people (http://www.hscic.gov.uk/catalogue/PUB14386). This pattern is consistent across questions and across the different years of the Adult Social Care Survey so far.

Why are people with learning disabilities apparently so much more satisfied with their support than everyone else? Eric Emerson and I have been playing with some analyses of anonymised data from the previous year’s Adult Social Care Survey to try and investigate this issue further. Unsurprisingly, almost all people with learning disabilities completed the survey with varying degrees of ‘support’ from other people, and that ‘support’ was most likely to come from careworkers. People with learning disabilities were also less likely to complete the survey on their own than other groups of people.

Percentage of respondents with learning disabilities receiving support during completion
Type of Support
None	8%
Someone else read the questions to me	61%
Someone else translated the questions for me	61%
Someone else wrote down the answers for me	48%
I talked through the questions with someone else	27%
Someone answered for me, without asking me the questions	9%
Support received from
Careworker	52%
Someone in their household	25%
Someone from outside their household	15%

Does the degree of ‘support’ people get to complete the survey have a bearing on their levels of reported satisfaction? The answer quite simply is yes. Even when statistically controlling for gender, age, support needs and type of social care support people were getting, in 15 out of 19 satisfaction/wellbeing indicators people were statistically more likely to report the highest possible level of satisfaction if they had been supported to complete the survey by a careworker. The effects were particularly large with questions relating to satisfaction with care and support: for example people were almost 9 times more likely to report the highest level of satisfaction with care and support services helping them to feel safe if a careworker had helped them complete the survey.

This analysis reveals some real issues with using subjective satisfaction/wellbeing measures with groups of people who may need ‘support’ to complete them, and disenfranchises significant groups of people with learning disabilities from the process altogether.

But there are also some broader issues with using satisfaction measures as a gauge for understanding people’s experience and for evaluating the impact of social policies, services and money (or the lack of it) on people’s lives. Put crudely, unless people’s circumstances are really appalling they are likely to report relatively high levels of satisfaction (typically in the range of 75% +/- 5%). What’s more, people’s levels of reported satisfaction or well-being on these type of scales don’t change much over time, and tend to revert to a typical level for the person pretty quickly in the face or positive or negative changes in people’s lives.

Why are these properties of satisfaction measures useful politically? One particularly enraging example is below – the Virgin Trains ‘performance’ posters that I find myself staring all too often on cold, dark, rainy mornings on Oxenholme station. Look at that overall satisfaction rating baby! (and notice they don’t ask about satisfaction with the prices of the tickets). I’ve resentfully stared at these posters for years (my nerd eyes are irresistibly drawn to data, even if it’s garbage) and the satisfaction numbers stay pretty constant not matter if the punctuality and reliability of the train service is going south (unlike the trains).

Or try this from the ONS – which constantly tells us our well-being and happiness has remained high despite the recession?

Does the comment by David Pearson show a similar politically useful usage of satisfaction measurement data?

As Ivan Brown, Eric Emerson and myself put it in a recent paper (reference below): “To use indicators that may be insensitive to the scale of change that could reasonably be expected of social policy interventions could undermine the perceived value of progressive social policies (additional investment or change failing to improve subjective well-being), and inadvertently support regressive social policies (reducing the investment in or quality of supports not reducing subjective well-being). This may be particularly problematic when applied to people with intellectual disabilities, given their increased tendency to provide acquiescent responses to questions.”

Amartya Sen sums this up more pithily: ‘Our desires and pleasure-taking abilities adjust to circumstances, especially to make life bearable in adverse situations. …deprived people tend to come to terms with their deprivation …. [as a result] the deprivation of the persistently deprived may look muffled and muted’ (Sen, 2001).

And just because I’m on annual leave from round about now, here’s a rather marvellous rendition of (I can’t get no) satisfaction from the Spooky Men’s Chorale https://www.youtube.com/watch?v=0VLQgRWrAw4

Happy holidays (75% +/- 5%) everyone!

References

Brown, I., Hatton, C. & Emerson, E. (2013). Quality of life indicators for people with intellectual disabilities: Extending current practice. Intellectual and Developmental Disabilities, 51, 333-348.

Sen, A. (2001). Development as Freedom. Oxford: Oxford University Press.

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.

Homo Sacer: Bare Life (with thanks to Donna Reeve)

Sara Ryan in her blog today (http://mydaftlife.wordpress.com/2014/11/18/at-least-two-rooms-without-a-view/ ) has highlighted the lack of (and somewhat misdirected) media attention concerning two young women with learning disabilities experiencing horrific conditions at the hands of ‘health’ services. Lisa lived for 9 years in solitary confinement, in a locked room at the end of a male ward in a specialist learning disability inpatient service. All interactions with her were through a slot the size of a letterbox including her food being passed to her and her hair being brushed, with a beanbag for her to sleep on (http://www.cqc.org.uk/sites/default/files/2014%2006%2017%20Three%20Lives%20report%20FINAL.pdf). Stephanie was admitted to a specialist learning disability unit at the age of 18, where she lived in solitary confinement in a padded room with skylight windows for almost 7 years, during which time she gained over 10 stone. Lisa eventually moved out; Stephanie died in the unit.

In this post I want to discuss Donna Reeve’s work applying the concept of ‘Homo Sacer’, developed by the philosopher Giorgio Agamben, to the lives (and deaths) of disabled people. I saw Donna do a typically excellent talk on this issue at the Lancaster Disability Studies Conference a couple of months ago, and it’s part of a strand of her work going back at least as far as this book chapter (http://donnareeve.co.uk/wp-content/uploads/2014/03/ReeveChapter2009.pdf ). Basically, here I’m going to put together a series of quotes from Donna’s chapter (as she explains the essential aspects of the concept for our purposes far better than I could) and ask you to consider the extent to which this applies to the position of Lisa and Stephanie, and Connor Sparrowhawk (see @sarasiobhan and @justiceforLB), and Nico Reed (see @justiceforNico), and Steven Neary (see @MarkNeary1), and so many others.

“In Homo Sacer (1998) Agamben explores the nature of sovereign power and production of bare life, describing homo sacer as someone whose ‘entire existence is reduced to a bare life stripped of every right by virtue of the fact that anyone can kill him without committing homicide’ (Agamben, 1998: 183). Homo sacer can be considered to be an outlaw or bandit who lives in a state of exception; someone who is not simply outside the law and indifferent to it, but who has instead been abandoned by the law.”

“Agamben draws on an obscure figure of archaic Roman law, homo sacer, to illustrate the essential part played by bare life within modern politics. Homo sacer is someone ‘who may be killed and yet not sacrificed’ (Agamben, 1998: 8, italics in original); thus the killing of homo sacer is not considered to be homicide. In addition: ‘He who has been banned is not, in fact, simply set outside the law and made indifferent to it but rather abandoned by it, that is, exposed and threatened on the threshold in which life and law, outside and inside, become indistinguishable.’ (Agamben, 1998: 28, italics in original). This zone of indistinction represents a state of exception in which homo sacer is bare life, zoē, stripped of political rights and located outside the polis (city); in other words homo sacer has biological life, but that life has no political significance.”

“As well as the relationship between homo sacer and zones of exception, Agamben shows that there is a reciprocal relationship between the sovereign and homo sacer: ‘[T]he sovereign is the one with respect to whom all men are potentially homines sacri, and homo sacer is the one with respect to whom all men act as sovereigns.’ (Agamben, 1998: 84).”

When listening to Donna’s talk, I know I wasn’t the only one to be struck by the horrifying and direct applicability of ‘homo sacer’ to the position of people with learning disabilities within specialist inpatient units, and also to the position that families are forced into when trying to support the person they love or to find some kind of justice when the person they love has died in services ostensibly existing to help. The widespread misuse of legislation and policy designed to secure people some legal protection (Mental Capacity Act? Best Interests? Deprivation of Liberty Safeguards?). The (still not understandable to me) determination of some local authority personnel to get people with learning disabilities into units far away from their families, who are told not to visit for a matter of months in case it upsets the person. The routine use of anti-psychotic medication, restraint, seclusion and worse in many of these places. The wall of denial, obfuscation, resistance, spite, vengeance and veiled threats of reprisal that can come down on the heads of family members who try and find the truth when their loved ones are mistreated or die in these services. The fact that people with learning disabilities can and do die in these services and no-one responsible is called to account.

Finding out the scale of this mistreatment of people with learning disabilities is obviously vital. But even this happening to just one person is enough to make it clear what the position of people with learning disabilities really is in our society. I’m not a person with learning disabilities and I’m not a parent of a person with learning disabilities so I can’t really imagine what the impact is when people hear about Lisa, or Stephanie, or Connor, or Nico, or Steven. From reading what families write, I wonder if these stories (what a crap and inadequate word, but I can’t think of a better one) are interpreted partly as threat (this can happen – this can happen to you), with many families saying how hard it is to challenge what’s happening because they live in fear of services exacting reprisals on them and the person they love. This is the message, the state of constant insecurity, that many people with learning disabilities and families live with day to day – even when things are going well, in the blink of an eye (a change of staff member, a seemingly arbitrary cutting of budget or change of service) everything can change and the person and their family are at the mercy of whatever new regime results.

Is this post somewhat melodramatic and overblown? Maybe, but this is the reality that people with learning disabilities and families can experience. When these things can happen, in highly expensive services, overseen and approved by a range of ‘expert’ professionals (all with their professional codes of ethics and requirements for continuously updating their knowledge and demonstrating their competence), it’s not surprising that statements from professional bodies and services (including large charities who are substantial providers of services) are treated with a degree of mistrust.

Obviously, a change of legal status is a vital part of transforming the status of people with learning disabilities and their families from homo sacer to citizens with the same rights and legal protections (and societal expectations of decency and unacceptability) as everyone else. That is why progress on the LB Bill (https://lbbill.wordpress.com/ ) is so necessary – and the fact that the LB Bill is necessary for me illustrates the homo sacer legal status of people with learning disabilities.

But as Lucy Series also points out in an excellent blogpost I’ve just seen (http://thesmallplaces.wordpress.com/2014/11/19/a-rotten-culture/ ), the law on its own cannot address the toxic cultures that exist in some services which act to undermine any legal rights that people with learning disabilities and their families have. I understand little about management theory and practice about effective service cultures (within the NHS or in other places), but it does seem to emphasise positivity: if you treat staff well, work together with people using the service to improve your service, are open and honest about failures, and foster cultures without bullying or blame, then you’re more likely to get a service culture that works well for both staff and most importantly for the people using it.

I find this way of thinking immensely attractive. My problem with it is that it seems ill-equipped for dealing with toxic, malign service cultures, which clearly can and do exist when it comes to people with learning disabilities (but is not restricted to people with learning disabilities). Like Lucy, I’m at a loss to account for these malign cultures. Is it a collective arrogance? Is it a mask for deep insecurity? Is it a result of collective burnout (with its components of emotional exhaustion, social distancing and a lack of personal accomplishment)? While I’m wary of the psychologising tendency to invent a pathological construct, invent a measure of it and hey presto, X% of the population have blibbleblobbleopathy, do we need to look at ideas like workplace sociopathy? Whatever helps us to understand these cultures, for me changing them will require different tools to positive management philosophies, or models of ‘influence’.

We also need to recognise that some people are attracted to positions where they can exercise absolute power over other people, and that English society as a whole is at best acquiescent in accepting the unacceptable when it comes to people with learning disabilities. As Donna Reeve says in her chapter, the ‘homo sacer’ concept can be seen as somewhat pessimistic – resistance to oppressive power is difficult when the source of that power is somewhat diffuse and difficult to grasp. For me, the LB Bill is a vital step in bringing people with learning disabilities from a status of ‘home sacer’ to citizenship. But people with learning disabilities, their families and allies need to be in ultimate and real charge of the money, policy, commissioning and services for toxic cultures of ‘support’ to be transformed.

References

Agamben, G. (1998) Homo Sacer: Sovereign Power and Bare Life, trans. D. Heller-Roazen, Stanford, CA: Stanford University Press.

Reeve, D. (2009) 'Biopolitics and bare life: Does the impaired body provide contemporary examples of homo sacer?' in K. Kristiansen, S. Vehmas and T. Shakespeare (eds) Arguing about Disability: Philosophical Perspectives, London: Routledge, pp. 203-217.

The earth is round (p<.05) – Personal health budgets and randomised controlled trials

The title of this post is from one of my favourite statistical thinkers (don’t judge me!), Jacob Cohen¹, in an article arguing that the logic of statistical hypothesis testing (the p<0.05 bit) simply doesn’t fit many important research questions, and that making a fetish of statistical hypothesis testing may actually impede sensible research that can make a useful difference to the world.

“Consider the following: A colleague approaches me with a statistical problem. He believes that a generally rare disease does not exist at all in a given population, hence H₀: P=0. He draws a more or less random sample of 30 cases from this population and finds that one of the cases has the disease, hence P_s=1/30=.033. He is not sure how to test H₀, chi-square with Yates’s (1951) correction or the Fisher exact test, and wonders whether he has enough power. Would you believe it? And would you believe that if he tried to publish this result without a significance test, one or more reviewers might complain? It could happen.”

Why am I telling you this? Well, with the announcement of a rapid expansion of personal health budgets have come repeated and influential calls for randomised controlled trials (RCTs) to test whether personal health budgets ‘work’ or not. My concern is that the RCT is becoming increasingly fetishised as the only valid research methodology, and applying an RCT methodology to the expansion of personal health budgets may not be the most effective use of scarce research funding to address the essential research questions. I’m writing not as a person who is opposed to RCT methodologies generally (I’m involved in doing one at the moment), and not as a person who thinks the expansion of personal health budgets shouldn’t be accompanied by rigorous evaluation. I should make clear that I’ve been involved in the collection of practice-based evidence concerning the early development of personal health budgets³, but as the report makes clear I see this as complementary to rigorous research on the issue.

The NHS Choices website, in their news glossary, provides a useful short definition of an RCT (and a judgement too):

“This is a study where people are randomly allocated to received (or not receive) a particular intervention (this could be two different treatments or one treatment and a placebo). This is the best type of study design to determine whether a treatment is effective.”

The logic of RCTs is simple, and has its roots in testing drugs but has much wider scope. You have a treatment X, and you want to see if it’s better, worse or the same in its impact than another treatment Y. Because we often (secretly or openly) want one of the treatments to ‘work’ better than the other one, we can’t trust ourselves to allocate people fairly across the two treatments (without even realising it, we might allocate all the people who we think might be more receptive to the treatment into our favoured condition). So we randomise people instead (in essence on the flip of a computerised coin) so that we can have no influence on who gets what treatment. We hope that this will result in two groups of people that will, on average, turn out to be evenly matched on anything that matters, although randomisation doesn’t guarantee this.

Sounds simple, and indeed the logic of the RCT is straightforward. So why don’t I think it’s the right way to evaluate a rapid expansion of personal health budgets?

First, RCTs assume that there is a more or less standard ‘intervention’, with an agreed standard ‘outcome’ (what the intervention is trying to have a positive impact upon). For me, there are a number of problems with applying this logic to personal health budgets:

·         The way I see them, personal health budgets in themselves are not an ‘intervention’ or ‘treatment’: they’re a different way of commissioning. This means that the ‘treatment’ is in principle not separable from the complex systems within which personal health budgets are embedded. This is important as RCTs typically start with what are called ‘efficacy’ trials (does the intervention work under ideal and controlled circumstances). If these show that the intervention is effective, then RCTs should (although these often don’t happen) to ‘effectiveness’ trials (does the intervention work in the real world), where unsurprisingly the effectiveness of the intervention is much smaller than under ideal conditions. For me, the nature of personal health budgets mean that an ‘efficacy’ trial is either in principle impossible, or at the very least would denature the personal health budgets so severely (in the name of creating standardised, controlled conditions) to make the findings meaningless. So, arguments that ‘proof of concept’ for personal health budgets needs to be established before their application in the real world are misplaced.

·         Related to this, personal health budgets will be a moving target. Because they involve complex changes (and challenges) to existing systems, the ways in which people can use them (and how receptive systems are to them) will be very different in 2015 than in 2020, say. Conducting an RCT that will be out of date by the time it’s completed, as the personal health budget ‘treatment’ will be quite different by then, severely reduces its utility.

·         Personal health budgets will be applied to hugely diverse groups of people with hugely diverse health needs who will use personal health budgets in hugely diverse ways, with hugely diverse parts of health and other systems. Such diversity is a real issue for RCTs – is a personal health budget for a person with mental health issues the same ‘treatment’ as one for a person with COPD, for example? (and variation usually means needing bigger and bigger numbers of participants)

·         Personal health budget holders will be using personal health budgets to achieve highly personalised outcomes for them. Any ‘primary outcome’ measure will have to be a measure of how people are meeting their individualised goals, rather than a standard health or quality of life type outcome measure, especially as for many people the goal of a personal health budget may be to preserve/maintain valued aspects of their lives for as long as possible rather than seeking to improve health/quality of life outcomes (back to diversity again).

·         The logic of the RCT requires that the form of the treatment must be standard for all research participants across the course of the project – this means that any learning about how they could be done better must be resolutely ignored by/withheld from participants while they are involved in the RCT.

·         The RCT requires a fairly standard comparison/control group that is completely separate to the treatment group. In the case of personal health budgets, what would this be, particularly as ‘treatment as usual’ is likely to change as a result of the impact of personal health budgets on health systems, even if a person isn’t getting a personal health budget.

·         For me, the RCT research question ‘Does Treatment X work better than Treatment Y?’ is not the most urgent or important question. When, how, why, in what ways, for whom do personal health budgets work (or not), and what can we learn as we go to improve the scope and coverage of positive impacts of personal health budgets, seem a much more relevant set of questions to me.

Second, having been involved in conducting a relatively small RCT, I’m acutely aware of the time RCTs take, the (potentially necessary?) bureaucracy that surrounds them, and how expensive they are. Even if my concerns above were ill-founded, there are good pragmatic reasons why an RCT would not be the best use of scarce research resources:

·         RCTs take a long time! Setting them up takes a while, decisions would need to be taken on what would be a sensible timescale for personal health budgets to ‘work’, and there would possibly be follow-ups too? As I’ve said above, I think this would mean that RCT findings would be assessing a historical moment in time by the time they came out.

·         The standardised nature of the RCT method would denature the actual application of personal health budgets over time, both for trial participants and for the service systems with which people engage.

·         As personal health budgets expand, I’m unclear how people would react to being randomised, particularly if they’re randomised to the ‘treatment as usual’ condition.

·         Methodologically, the risk of ‘contamination’ (charming word) across conditions is huge - people (even health professionals!) talk to each other which could compromise the RCT trial design in all sorts of ways.

·         With the diversity of people’s health needs, how big would any RCT have to be? Across how many areas of the country? How expensive would this get? This seems to me like we’re entering into the realms of ‘waste’ in research (http://www.thelancet.com/series/research).

So, what are the alternatives to RCT methods in this context? Personally, I think the research funding that is available could be better spent on a programme of implementation research⁴, with people using personal health budgets and those supporting them at the heart of decision-making about what the essential research questions are, and which research methods will yield relevant, timely findings that can feed into ongoing learning about how to do personal health budgets well. Too many good ideas have suffered when they have attempted to be scaled up – why not design a research programme that rigorously investigates such an attempt to scale up, while simultaneously supporting it?

References

1.            Cohen, J. (1994). The earth is round (p<.05). American Psychologist, 12, 997-1003. http://ist-socrates.berkeley.edu/~maccoun/PP279_Cohen1.pdf

2.            NHS Choices. News glossary. http://www.nhs.uk/news/Pages/Newsglossary.aspx

3.            Waters, J. & Hatton, C. (2014). The POET surveys 2014. Personal health budget holders and family carers. London: Think Local, Act Personal. http://www.thinklocalactpersonal.org.uk/_library/Resources/SDS/POET_health_FINAL_24_Oct.pdf

4.            Peters, D.H., Tran, N.T. & Adam, T. (2013). Implementation research in health: A practical guide. Geneva: Alliance for Health Policy and Systems Research, World Health Organization. http://who.int/alliance-hpsr/alliancehpsr_irpguide.pdf

My kind of high security

In my ‘Return of the Chunky Ninjas’ blogpost (http://chrishatton.blogspot.co.uk/2014/10/return-of-chunky-ninjas.html) a couple of weeks ago, I suggested the following:

Rather than having block contracts for big service providers, why not have guaranteed 10-year amounts for people’s IPCs (people could return some of their IPC if they thought it was too much, and there would be the option for the amount of the IPC to increase if necessary). The money always follows the person.

It got a bit lost in subsequent Twitter discussions, except for @neilmcrowther who commented  “imagine could make huge difference if someone got that age 14-24”

To be honest, I was a bit embarrassed that this thought had occurred to me some 20 years later than it should have done. But again, as @neilmcrowther commented “cos something that should be so intuitive runs completely counter to common custom?”

So, this is a quick blogpost to highlight this idea and hopefully get some discussion on it. Why do I think it could be helpful?

1) It could remove at one stroke a lot of the insecurity that people and family members have to experience about the amount of their personal budget, particularly in terms of arbitrary changes/cuts to the amount and the feeling of also having to justify yourself to the local authority/NHS all the time.

2) This security gives people the chance to really plan for the ‘imagined future’ (@sarasiobhan’s vital words), rather than being stuck in a perpetual, insecure present.

3) It places more power in the hands (both individually and collectively) of people, families and allies to shape what supports they want in their local area.

4) It also removes a lot of the petty and spiteful bureaucracy (I’m thinking particularly of the experiences of @MarkNeary1) that often seems to unnecessarily attend the way that local authorities administer personal budgets. Why not leave people to get on with it, with people simply producing a straightforward annual budget report every year?

5) It separates what should be a positive process of helping people work out what supports will work best for them from what is felt as a punitive process of deciding how much the budget should be, which I imagine would be a great relief to many social workers as well as to people and families.

Of course there are issues with this idea. The initial budget setting process obviously assumes huge importance. There also needs to be some way of checking for outright fraud that isn’t used as an excuse for bringing insecurity and spiteful bureaucracy back in (although how long can woefully underperforming/actively dangerous providers carry on with block contracts at huge cost?). Decisions need to be made about uprating the annual amount in line with inflation, whether any underspend is given back (without affecting the next year’s amount) or can be saved for later investment, and how the amount can be revised upwards as people’s needs may change?

If all this sounds too utopian and costly, I would ask you to consider the following:

Local authority returns and personal social services expenditure data suggest that there were 105,305 adults with learning disabilities subject to assessment/care management in 2012/13, at an average annual cost of £3,105 per person per year (my estimate is a total cost per year of £326.9 million). I think these proposals should drastically cut this expenditure.

I’ve been trying to do some estimates on the likely amount of NHS and local authority money being spent directly on adults with learning disabilities. At the moment (and there’s more work for me to do here), I reckon it comes to at least £6 billion per year. Surely much of this could be better spent?

Update: As @milton_damian and @MarkNeary1 have quite rightly pointed out on Twitter, this post assumes that people still have to prove themselves accountable to the state. They rightly argue that:
1) the state should have to prove itself accountable to people, not the other way round
2) Mechanisms of 'accountability' like those proposed above can be and are used as stickes to beat people with
3) Things like DLA, child benefit etc don't require such 'accountability'.

So - scratch that bit of the blogpost above!

Return of the chunky ninjas

This is kind of prompted by a passionate blogpost from @ProfRHastings “Challenging behaviour and learning disability in the UK – the three options” (available here http://profhastings.blogspot.co.uk/2014/10/challenging-behaviour-and-learning.html?m=1 ). This post clearly outlines some points of agreement on the major issues concerning the (mis)treatment of people with challenging behaviour. He calls for a systemic, comprehensive approach to change rather than a piecemeal focus on any particular element of this dysfunctional system, which on its own will be doomed to failure. The three options in the title of the blog are really two; to write another report restating what we already know; or to follow through on well-elaborated ideas from Richard and others for a challenging behaviour academy for England. His third option is really a challenge, to go on if you think you can come up with something better.

As I'm someone who has been on a protracted whingeathon about recent policy concerning inpatient services and support for people with learning disabilities generally, this challenge is well made. So, this blogpost is an attempt to put a bit more flesh on the bones of a post I wrote in June which included a ninja proposal about getting people out of inpatient services and making sure that people don’t go into them (available here http://chrishatton.blogspot.co.uk/2014/06/now-is-winterbourne-of-our-discontent.html ).

As ever, the ideas in the original proposal and their development here are in a real sense collective, as they’re the result of conversations with a lot of people and continuously inspired by the #justiceforLB campaign (all ridiculousness here is mine alone, however). They are also obviously a starting point for more conversations rather than an end-point. Although not ideal (nothing ever is, of course), these ideas also start from where we are (deep, huh?) in terms of current legislation and some major currents in policy.

I think the ideas that follow fit with the “We Have The Right” statement recently produced by people with learning disabilities (available here http://www.changepeople.org/wp-content/uploads/2014/10/CHANGE_Statement_01Oct2014.pdf ).

I also think the ideas here would have a much greater chance of making a real difference to people’s lives if they were underpinned by the #LBBill passing into law (see here for background information to the #LBBill http://lbbill.wordpress.com/2014/09/28/what-is-lb-bill-easy-read-overview/ ).

These ideas are agnostic about a national challenging behaviour academy – such an academy could fit here but isn't assumed – for me the question of the best ways to support people with challenging behaviour would be a matter for the national ninja taskforce.

The original soy skinny ninja proposal was this:

·         Close all of these services to new admissions.

·         CQC to make a clear statement that they will not register new services of this type, and that they will have a process of deregistration of existing services.

·         For all commissioners still funding people in these services, take that funding off them to be administered by a national ninja closure taskforce. This would give the taskforce a starting budget of over half a billion pounds per year (could add in the Winterbourne View programme money too?).

·         Put people with learning disabilities and families really in charge of this ninja taskforce, making decisions about who is appointed to work on the taskforce in which capacities, what the taskforce does, and how it operates.

·         The ninja taskforce works to develop local, individual supports for people moving out of these services – with new people, agencies and supporters rather than with the usual provider suspects (unless the usual provider suspects can come up with something really good that the person and family members want). Obviously this would be person-centred, with the person and family in charge.

·         Funding at its current ATU level moves with the person (howls of protest, two-tier Rolls Royce service, all true, but it would demonstrate what good looks like).

·         The ninja taskforce also help to develop local, individual supports for other people with learning disabilities who might have been sent to these places by commissioners, including strong local structures for self advocacy and family advocacy.

·         The ninja taskforce to help to develop ways of supporting people with learning disabilities in acute distress/crisis for short periods of time.

So, here come the chunky ninjas to describe in a bit more detail what might need to happen to help, focusing a bit more on stopping people going in rather than getting people out (the main focus of the original ninja taskforce proposal above).

Stopping people going in…

1) Start from the beginning. All children identified as having a learning disability will, in theory, have Education and Health Plans (EHCs, which unfortunately sound like a polite Yorkshire retch) which are supposed to support people up to age 25. Strong support and oversight of EHCs are needed if they aren’t to be inconsistently and patchily applied. National standards for the way these plans are produced and reviewed need to be to driven by children/young people and families. It is vital that these plans start from a position of identifying people’s strengths and encouraging/supporting the development of imagined futures (@sarasiobhan’s phrase) with children/young people. In support of this, plans also need to identify children/young people who might be at risk later on of becoming distressed, showing challenging behaviour or breaking the law (including identifying ‘public health’ risk factors like living in poverty and facing adversity early in life).

It is vital that parents and children/young people are the driving force for EHCs, particularly such that parents don’t have to highlight ‘problems’ for them to get good support. Children/young people and families need to have control over the aims of the EHC plan, there needs to be transparency and predictability about the resources underpinning each plan, and they need to control how the plan is to be delivered (with a minimum of bureaucracy).

Local areas should be required to produce regularly updated, publically available (and easy to find) information about the number and needs of children and young people up to the age of 25 in their area, and what is being done to help children/young people and their families to get the support they want.

It is also important that local areas have a really good handle on children/young people in residential special schools, whether in or out of area. A parallel process to inpatient service closure for adults (and the prevention of admissions to residential special schools) should be instituted for residential special schools.

An additional source of information and support should be annual health checks for people with learning disabilities, which are being extended to include young people with learning disabilities from the age of 14. Current financial incentives for GPs have only resulted in just over half of ‘eligible’ adults with learning disabilities receiving annual health checks. Strengthening the requirement for GP practices to register people with learning disabilities and to conduct annual health checks is needed. It’s also vital that health checks for young people with learning disabilities cover the important issues for this group, including potential signs of distress – these should be closely linked to and work with EHCs. National standards for the way that health checks are done need to be to be driven by children/young people and families, with professionals in support.

2) Don’t write anyone off. Each local area needs to have good, regularly updated and publically available information about:

a) Adults who already show behaviour that challenges and/or mental health issues.  

b) Adults who experience crises – they may not be known to health or social services and even if known, may not meet social care eligibility criteria until the crisis happens. This is obviously less easy to predict, but local areas need to have some idea of how many people in crisis are likely to emerge in any given timespan (and to offer this group of people low level support in advance of a crisis, including advance planning for if/when likely crises/changes in people’s circumstances occur).

c) There is the group of offenders who have been diverted from prison, and there are also prisoners with learning disabilities. Local areas need to have good information on these groups, including what their offences are, what the prison term would have been/is and what level of security is specified for them at the moment.

3) I think Integrated Personalised Commissioning (as far as I understand it, the ‘official’ NHS England term for personal health budgets, but they should draw in social care funding too) are important here, especially as NHS England are pushing this approach generally. Where will the money come from? Well, if personalised commissioning is taken seriously then existing boundaries between commissioners (NHS specialised commissioning, local Clinical Commissioning Groups (CCGs), and local authorities) need to be dissolved, as these boundaries  automatically create incentives for different commissioners to try and shunt costs on to someone else. Could funding from these sources be pooled, then commissioners would be much more about helping people (individually and collectively) to get the support they want rather than commissioning services that they then have to squish people into?

At a local level, it needs to be possible for people/families/allies/advocates to come together to specify what support they want and work with potential providers of that support so they can get that support. We need to avoid over-complicated tendering/procurement processes and block contracting so that people can get what they really want/need (potentially from new or very small organisations) rather than necessarily what existing big support providers already do (although some people will want what service providers already do, which is fine). In some places it might make sense for some support services for people across different local areas to band together?

Rather than having block contracts for big service providers, why not have guaranteed 10-year amounts for people’s IPCs (people could return some of their IPC if they thought it was too much, and there would be the option for the amount of the IPC to increase if necessary). The money always follows the person.

For individuals, Circles of Support or other ways of supporting personal budgets could be used as models for supporting people and families to make good use of their IPCs. Good independent advocacy and peer advocacy should also be available to all people who want it. There can be multiple vehicles for delivering IPCs (including but not confined to direct payments, broker managed budgets, provider managed budgets etc). The person/family/allies need to be in control of which vehicle suits them (and retain the option to change this), the whole process needs to be easy, transparent, reliable and fair, and require a minimum of paperwork to manage.

IPCs should include advance planning for potential crisis situations – what does the person/family/allies want to happen in those circumstances and how is that support going to be available?

People/families/allies need to have support/expertise/resources developed regionally/nationally to draw on if they wish to. The national ninja taskforce is definitely needed (led by people with learning disabilities/families/allies) to direct operations and keep everyone honest.

4) I think annual health checks (and more specialist health support) have a crucial role to play for everyone, in checking for health conditions that might be associated with discomfort, pain, and behaviours potentially viewed as challenging or indicative of a mental health problem and resolving the health condition. The issue of medication (particularly multiple medicines, particularly particularly psychotropic medication, and particularly particularly particularly antipsychotic medication) is obviously crucial as well. There needs to be a strong, enforceable way to ensure that medications are reduced and kept to a minimum.

5) Can anyone issue a blanket order preventing any new admissions to particular types of inpatient services? I suspect not, in which case there need to be strong contingencies such that it’s much harder for commissioners to get someone into an inpatient unit than to provide decent community-based support. The #LBBill is particularly important here. It’s also vital that people who have committed a crime but been diverted from prison, and residential special schools, are not left out (or more to the point, left in).

6) NHS England should impose tough, nationally specified contracting standards on existing commissioners (specialised commissioners and CCGs) setting out in very clear terms what is required in terms of commissioning places in inpatient services. This might include the operation of the #LBBill before a placement is decided, a complete health assessment and time-limited discharge plan set on arrival. And how about a person being placed in an inpatient unit triggering an IPC, with the amount set at a minimum at the inpatient service weekly fee and to follow the person once discharged?

7) The CQC making a clear statement about models of inpatient service they will not register, with plans for new inpatient services having to be submitted to CQC in advance to them for adjudication.

A quick word on getting people out…

I think pretty much everyone who is currently in inpatient services (with the possible exception of the 73ish people with learning disabilities in high secure services) could also plug into the way of doing things outlined above, with the money for the IPC following them (from NHS specialised commissioners and CCGs mainly). Even if people require a degree of security, there is no reason why a circle of support and an IPC would not apply to them, presumably with one aim among others of needing less security over time. As people move out of inpatient services, they could then plug into and become part of the local networks described above.

Where’s the money?

Changing the way any system operates always costs money, at least while the system changes. Although this is obviously not a fully costed proposal, there are some sources of potential savings that should arise from this proposal to help support the proposed changes, including:

1) The cost of specialist inpatient services for adults with learning disabilities, currently running at over half a billion pounds per year.

2) The cost of residential special schools for children and young people with learning disabilities. Although recent data are unavailable, there are likely to be at least 1,000 children and young people in residential special schools in England. If these are funded at similar levels of assessment and treatment units, closing residential special schools would save at least £150 million per year.

3) There are around 30,000 adults with learning disabilities in England in some form of residential or nursing care funded by social care, at a cost of approximately £2.1 billion per year. Assuming that half of these residential placements would not be the preferred option for people with learning disabilities would in itself provide £1 billion a year for re-investment.

4) There are some other ‘big ticket’ items of social services expenditure on services for people with learning disabilities that some people with learning disabilities may not choose to keep using, such as day centres (current cost over £700 million per year).

5) Finally, there are a number of smaller areas of potential savings (for example, less prescription of antipsychotic medication) that are all relevant when evaluating the cost implications of these ideas.

In total, I think £2 billion per year wouldn’t be a ridiculous figure in terms of funding for reinvestment in a new way of doing things, not to mention ongoing savings from putting in decent, early support so that fewer people end up in crisis in the first place.

Personally, I worry that for the short-term injection of cash, social investment models ask too high a price in terms of the amount of money that would be sucked out of supporting people with learning disabilities into the pockets of social investors. If an investment model of this type is needed (and I think new buildings are less important than building good support from good people), what about some kind of national or regional state investment bank, with guaranteed low rates of interest and the returns being used for the bank to make further investments in supporting people with learning disabilities?

Chunky ninjas

So, the ninjas have put on a little weight – what do you think?