Risky business

Another nerdilicious blogpost. This one is about a central part of the NHS England-led plan ‘Building the right support’ https://www.england.nhs.uk/wp-content/uploads/2015/10/ld-nat-imp-plan-oct15.pdf , which is the latest Transforming Care reboot. ‘Building the right support’ makes the welcome point that reducing the number of people going into inpatient services will require much more extensive, earlier, and more useful community support.

As part of this, the plan says that there are an estimated 24,000 people ‘at risk of being admitted to hospital without the right support’ (page 36). My understanding is that there is quite a lot of head-scratching around how to identify in practice who these 24,000 people are, and then to work out what services are needed to support them so that they don’t end up in inpatient services.

Personally, I’m not convinced about this ‘risky cohort’ idea, and I think it might have some unhelpful unintended consequences.

First, the 24,000 figure is extrapolated from a study examining the prevalence of challenging behaviours amongst a population of people with learning disabilities in a large area of Wales (total population 1.2 million) in 2007 (Lowe et al., 2007). It is a relatively large, well-conducted study, with similar findings to previous research. However, using this as a benchmark to construct a ‘risky cohort’ raises a number of problems, including:

1) There are no nationally comprehensive data on who is currently showing ‘challenging behaviour’, and trying to construct such a dataset is likely to be highly expensive, difficult and time-consuming.

2) We also don’t know if the cohort of people with the types of ‘challenging behaviour’ used to derive the 24,000 number make up all/most of the cohort of people who end up in inpatient services. For example it’s likely to miss out relatively able people who end up in inpatient services via ‘offending’ routes, where even standard forensic risk measures don't seem to be brilliant at predicting what people do once they arrive in an inpatient service (O'Shea et al., 2015). From the sparse research that has been done it’s also likely to miss out some people with learning disabilities who end up in inpatient units with a diagnosis of a mental health problem - it's unclear how many of these people would be picked up as showing 'challenging behaviour' (Chaplin et al., 2015; Devapriam et al., 2014) .

3) In its original form, the definition of ‘challenging behaviour’ is a social construction, dependent on what the person is doing only within the context within which they are doing it. Hand someone a pair of glasses and you can be put in a temporary cell - flatten someone running past you and you can be a hero (both of these things happened to Burnley FC mascot Bertie Bee - see this article for a brief explanation of context http://www.mirror.co.uk/sport/football/news/burnley-mascot-sent-jailed-after-2644050 ). Staff who don’t or choose not to really understand a person may very quickly reach for a ‘challenging behaviour’ label and punitive response that is completely unnecessary, establishing a punitive spiral with no ready exit. Identifying a risky cohort of relatively fixed quantity locates the ‘risk’ squarely within individuals, rather than paying careful attention to people’s histories, what matters to them, and the influence of environments (and other people).

4) We don’t know what impact changing patterns of/reductions in the group of people supported by/known to social services will have on who is visibly ‘at risk’. It’s entirely possible that the more able ‘offending’ cohort of people will stop being identified as people with mild learning disabilities at all (either in education or adult services). Although a lack of support might make this group more likely to get into trouble with the law, and might mean they are more likely to end up in prisons or even mental health inpatient services, they will become invisible to learning disability services and drop out of the ‘Transforming Care’ remit altogether. Which will buff up the Transforming Care target indicators no end, while doing a grave disservice to that group of people.

5) We don’t know what impact changes to inpatient services themselves will have (assuming that there ever are any!) on the quantity of people that could be admitted and the ‘problems’ that would make someone ‘eligible’ for an inpatient service, and therefore what a ‘risk cohort’ would look like. Over a ten year period, some of the 'reasons' for admission to a single inpatient unit, and what happened to people once admitted, changed quite substantially (Oxley et al., 2013).  And of course, if community support services do increase and improve, then this would also change who is ‘at risk’.

6) The boundaries between ‘inpatient’ services and other residential services (the infamous Daisy residential service) are becoming increasingly fuzzy, as local areas look to claim that their inpatient numbers are going down. The ‘risk cohort’ might be less likely to go somewhere called an ‘inpatient service’, but they might be more likely to end up somewhere with a different label but serving a similar function (residential special schools are part of this too, I think). As Mansell and colleagues said in 2010: "The large number of patients in low secure services raises the question whether this type of service is recreating the intellectual disability institutions which government policy intends to close" (Mansell et al., 2010).

So I think if you want to know anything meaningful about the group(s) of people who might be ‘at risk’, there are a number of questions you need to ask:

1) Does having an ‘at risk’ cohort, who are maybe getting extra support as a result of their risky status, create more de facto eligibility hurdles? Do people and families have to show a ‘problem’ to get this extra support, and what if the extra support reduces the ‘problem’ – does the support stop? How are the boundaries to be policed? Personally I think support needs to be offered universally as the only way to get round this gatekeeping, avoid unnecessary labelling, and develop coherent support that is rooted within meaningful communities.

2) ‘At risk’ of what? At risk of admission to an inpatient service is too restrictive (for the reasons I’ve outlined above) and will lead to ‘gaming’ the system from unscrupulous types. I think instead there needs to be a recognition that trying to get a definitive ‘at risk’ list of people will be likely to be highly expensive and slightly self-defeating as circumstances change. Instead, I would propose some more pragmatic steps to be done on an ongoing basis to monitor what’s happening, for example:

a.      We don’t know much at all about the histories of people who are being admitted to inpatient services. It should be relatively straightforward to find out some details of people’s histories and collate them either at the point of admission and also for people ‘averted’ from inpatient admission. This would need to be ongoing to look for potential changes in ‘risky’ histories as the pattern of inpatient services changes.

b.      We need to do something similar for people in residential special schools (and to examine their onwards trajectories too).

c.      We need to look at people who get/acquire some label of learning disabilities when they come into contact with the criminal justice system (police contact onwards) in terms of histories and what happens to them (diversion to forensic services, for example?).

d.      Within annual health checks we need better coverage of mental health problems and ‘risky’ behaviours.

e.      We need to find a way of understanding what is happening to the group of people formerly known as people with mild learning disabilities.

Within local areas, we need to build a comprehensive picture of what is happening to people that is monitored in real time. This shouldn’t need a complicated extra special database of ‘risky’ people. It needs to get a whole picture of where people are (including people who are sent out of area). Are apparent reductions in inpatient services accompanied by increases in emergency hospital admissions, or people getting into the criminal justice system, or into forensic services? As the number of people identified as eligible for learning disability services decreases, are there local increases in emergency hospital admissions or generic mental health inpatient admissions? I think in areas that have their act together, most of this information  will already be available – it is just very rarely put together in ways that make any kind of sense. I think this is much more achievable than identifying an ‘at risk’ cohort of people with learning disabilities.

References

Chaplin, R., Roach, S., Johnson, H. & Thompson, P. (2015). Inpatient Children and Adolescent Mental Health Services (CAMHS): outcomes of young people with and without intellectual disability. Journal of Intellectual Disability Research, 59, 995-998.

Devapriam, J., Alexander, R., Gumber, R., Pither, J. & Gangadharan, S. (2014). Impact of care pathway-based approach on outcomes in a specialist intellectual disability inpatient unit. Journal of Intellectual Disabilities, 18, 211-220.

Lowe, K., Allen, D., Jones, E., Brophy, S., Moore, K. & James, W. (2007). Challenging behaviours: prevalence and topographies. Journal of Intellectual Disability Research, 51, 625-636.

Mansell, J., Ritchie, F. & Dyer, R. (2010). Health service inpatient units for people with intellectual disabilities and challenging behaviour or mental health problems. Journal of Applied Research in Intellectual Disabilities, 232, 552-559.

O'Shea, L.E., Piccioni, M.M., McCarthy, J., Mason, F.L. & Dickens, G.L. (2015). Predictive validity of the HCR-20 for inpatient aggression: the effect of intellectual disability on accuracy. Journal of Intellectual Disability, 59, 1042-1054.

Oxley, C., Sathanandan, S., Gazizova, D., Fitzgerald, D. & Puri, B.K. (2013). A comparative review of admissions to an intellectual disability service over a 10-year period. British Journal of Medical Practitioners, 6, a611.

Not roaming in the gloaming

[the photo is of Lennox Castle, taken from this website http://www.lennoxcastlestories.co.uk/news which is well worth a browse]


Just a quick post, this one. I didn't realise until today (although I should have known) that Scotland has been conducting a census on the number of people in learning disability and mental health inpatient services in Scotland. The most recent one I can find was conducted at the end of October 2014 (I think another one is planned in the spring of 2016?). Most of the information in the reports I could find is not specifically provided for people with learning disabilities (see here for reports from the Census http://www.gov.scot/Publications/2015/06/7555 ), but some headline figures are...

1) There are 3,909 people in total NHS Scotland learning disability/mental health inpatient services.

Of these, 230 are people with learning disabilities, of which 226 are under a learning disability psychiatrist and 181 are in learning disability units. The median length of stay for people with learning disabilities in NHS Scotland inpatient services was 33 months.

Out of this 230, it looks like at least 67 people with learning disabilities are in NHS Scotland forensic inpatient units (they are all under a learning disability psychiatrist).

2) There are 128 people in total in these types of inpatient services outwith (I do love the word 'outwith') NHS Scotland - these are places commissioned by the NHS in Scotland but are either private facilities in Scotland (96 people in total) or facilities in England (47 people in total).

Of these, 31 are people with learning disabilities in inpatient services outwith NHS Scotland. The median length of time since people had been admitted to their inpatient unit was 56 months.

So in total, there are 261 people with learning disabilities in inpatient units commissioned by the NHS in Scotland.

Not sure there's a huge amount to say about this, except:

1) On an English parochial note, not much of the discrepancy between the English Learning Disability Census and the English Assuring Transformation Dataset (which records around 500 people fewer than the Census) is going to be due to Scottish people with learning disabilities being placed in English inpatient services.

2) On a broad population basis, the rates of people with learning disabilities in inpatient services in England and Scotland are broadly similar.

I'd be very interested to know if there is similar information that I've missed for Wales and Northern Ireland.

A house where nobody lives

A quick, genuine question. Can someone please explain to me why ‘social investment’ is such a boon to cash-strapped social care commissioners?

Take this ‘case study’, highlighted in the NHS England-led October 2015 reboot of ‘Transforming Care’, ‘Building The Right Support’ (see https://www.england.nhs.uk/wp-content/uploads/2015/10/ld-nat-imp-plan-oct15.pdf ).

Presumably this means that this is considered to be a ‘good thing’ by NHS England and a model for others to follow. To my naïve mind, this amounts to the following:

1) Bonds in my simplistic view are in effect requests for loans guaranteeing a particular rate of return over a fixed period of time – if you lend us £X, then we guarantee you’ll get £X + £Y% over Z years. If investors, whether social or not, think the risk isn’t too high for the rate of return they’ll get (compared to what is on offer elsewhere) then they’ll go for it.

2)  The money is used to buy or build property – bricks and mortar, that has to be adapted in some way to be ‘specialised’.

3) People then move into these ‘specialised’ properties, presumably mostly funded by local authorities (and maybe CCGs if they’re ‘specialised’ enough).

4)  This funding pays for the property (and more than likely, the support), and also pays back the bond ‘investment’.

5) Once the bond has been paid off (by the public purse), the investors have ended up with their slice of interest and the organisation who leveraged the money end up with the properties and the business.

This model seems to be like the Glazers’ leveraged buyout of Manchester United – borrow the money to buy the club, use the income the club generates (and maybe starve it of investment/sell stuff from time to time) to pay off the debt (while taking out handy slices for yourself), end up owning the club.

At the moment, there seem to be a lot of variants of this. Like Triodos bank underwriting the building of an apparently speculative dystopian holiday camp-style ‘specialist supported living village’ in North Shields (see http://www.disabilitynewsservice.com/alarm-over-huge-new-care-village-for-autistic-adults/ ), when local authority commissioners are saying they won’t use it (although the local councillor brags of 100 jobs being brought to the area). The accommodation will be so ‘specialist’ that the back-up plan from the developers is to turn it into bedsits for sale if the ‘care’ commissioning doesn’t work out.

Another common approach is the venture capital buyout – a small ‘care’ or ‘support’ provider, struggling to provide a decent service as public funding is squeezed, is bought out for a song by a venture capital company (or a ‘care’ chain ultimately owned by a venture capital company). Why would a venture capital company want to take on such struggling businesses? Well, there are a number of options: 1) Squeeze costs (the number and expertise of staff, primarily); 2) Sell off the bits that won’t turn a profit; 3) Recast your services as ‘specialist’, thereby requiring commissioners to pay through the nose for it.

As social services withdraw from directly providing support, and NHS Trusts are under pressure to reduce officially labelled ‘inpatient services’ from NHS England, what pattern of services/support will this amount to?

First, residential services (of whatever label) will be in the hands of big private providers (the distinction between big charities or for-profit companies is irrelevant as they behave in strikingly similar ways), with smaller support agencies (without the size and muscle to convince ‘social investors’ to invest in them when public agencies won’t or to tender via bureaucratic procurement processes) being progressively squeezed out.

Second, residential services will look increasingly ‘specialised’ in congregate ‘specialised’ buildings, which look spiffy in architects’ drawings. The option of people owning or renting regular flats or houses will become even more difficult (and current trends in social housing, housing association housing and the private rental market, let alone house prices, don’t help).

Third, these congregate residential services will require filling to keep the profits coming. Doesn’t matter where a person wants to live (and imagine someone saying they want to leave and move somewhere else?) – it’s Room 4b in the ‘Bosky Glade’ unit or nothing.

Fourth, the boundaries between what counts as an ‘inpatient’ service, a residential care establishment and ‘supported living’ will become increasingly fuzzy/irrelevant. Now, these distinctions are already increasingly irrelevant in terms of what people with learning disabilities actually experience. Will the ‘Daisy’ residential unit in the grounds of a psychiatric hospital (see http://www.gazetteandherald.co.uk/news/13803905.New_health_unit_for_Devizes/ ) feel very different to an inpatient unit for the people living there? Will the North Shields ‘supported living’ experience feel any different to a care home? These distinctions are increasingly only meaningful in terms of finances for the organisations running them and which compartment of the public purse pays for them. NHS England want to reduce the number of people in inpatient services? No problem – we’ll build some specialist residential care units instead. Social services want to reduce their residential care spending? Fine – we’ll stick in some internal doors, call it supported living, and rake in the cash from uncapped housing benefit (although maybe not for much longer…).

Fifth, the public purse will end up paying more for more institutionalised services. As public money for these services decreases, the only way this circle will be squared is for social and health services to raise the eligibility drawbridge and provide support to fewer and fewer people.

Sixth, if the money stops coming in at a suitable profit-turning rate, any residential service will close, with no regard for what people need now or in the future.

Seventh, all of the above will lead to an increasing cohort of people who don’t get any support and get themselves into real trouble, which will, of course, require more ‘specialised services’ of one sort or another. And also, an increasing cohort of people living with their parents well into their parents’ old age, again likely to lead to ‘crisis’ relocation into … a space in a specialised service.

Last, any vestige of strong commissioning will wither away and become largely a matter of selection from a limited range of glossy brochures.

One of the problems when I’m writing a blogpost is that I start pursuing the logic of my own position and usually completely gloom myself out. Note that the wishes of people with learning disabilities are pretty much nowhere in the post so far – people are simply exploitable commodities. So, is there anything that can be done to stop this juggernaut of corporate institutionalisation? I don’t know, but I think there are a few things that might help:

1) Scrap the financial distinction between supported living and residential care, because...

2)  Every person with learning disabilities should have as a basic starting point full rights as a tenant or home owner, no matter what support they are getting.

3) Through meaty personal budgets (which need to sufficient to include a housing element) and/or Individualised Personal Commissioning, every person gets a long-term (10 years at least), guaranteed budget to help them plan their life.

4) People living with their families have a similarly guaranteed budget.

5)  People can use these budgets to take out a mortgage, or invest for themselves in housing, if they want to.

6)   People can do this as individuals or with another person/people if the person wants.

7)   People don’t have to go through the ‘procurement’ processes of commissioners to get what they want.

8)  People have access to independent financial and legal advice (a role for the Citizens’ Advice Bureau?).

9)  These budgets move with the person if they move to a different part of the country.

10) And … people with learning disabilities and families should be in charge of commissioning strategy while we’re at it.

I know this is over-stating a case in a way that some service providers in particular will think is unfair. I want to put this starkly to illustrate the tide that decent service providers are swimming against. And finally, as Neil Crowther says in his excellent recent post (see https://theindependentlivingdebate.wordpress.com/2016/02/09/salvaging-opportunities-from-the-jaws-of-defeat/ ), trying to come up with positive ideas feels somewhat naïve at the moment. I stand by my naivety, however. What do you think?

NB: The title, by the way, is from a Tom Waits song - which in an oblique way sums up why home is so important https://www.youtube.com/watch?v=W0YxjH09TDU