Homelessness and people with learning disabilities: what do we know?

Prompted by a series of tweets from @CommCats about meeting a woman with Down’s syndrome sleeping rough on a London street after falling behind with the rent on her flat, and a question from @alexsharedlives asking if I knew any statistics about people with learning disabilities who are homeless, I promised to have a dig around and see what I could find. Rather than a tweet bombardment, I thought it would be better to put this into a quick blog, but most of these statistics are new to me so I would be grateful to hear if I’ve got anything wrong or missed out any useful sources of information.

Social services statistics

To start with, I looked at the local authority statistics on the types of accommodation that adults with learning disabilities are living in. There are some massive limitations to this as a source of information on homelessness: 1) It’s only for adults aged 18-64 years old; 2) Up to 2013/14 this was only for adults with learning disabilities known to (i.e. recognised as a person with learning disabilities by) councils; 3) From 2014/15 this is only for adults with learning disabilities getting long-term support from councils.

The table below shows the number of adults people with learning disabilities recorded by councils as being in five types of ‘unsettled accommodation’ that to me suggest homelessness: rough sleeper/squatting; night shelter/emergency hostel/; refuge; placed in temporary accommodation (e.g. a B&B) by the council; and staying with family/friends as a short-term guest.

  

From 2010/11 up to 2013/14, the number of adults with learning disabilities in these types of accommodation increased by 29% over these three years – by 2013/14, 0.8% of all adults with learning disabilities known to councils (1,170 people) were homeless or in extremely temporary accommodation. The nearest equivalent figure for Scotland in 2014 was 57 homeless adults with learning disabilities, 0.2% of people known to the council (see http://www.scld.org.uk/wp-content/uploads/2015/08/Learning-Disability-Statistics-Scotland-2014-report.pdf ).

In 2014/15, councils only returned information on people getting long-term support – the total number of adults with learning disabilities recorded dropped drastically (by 13% in one year) and the number of people reported as being in these types of temporary accommodation dropped even more drastically (by 29% in one year, to 825 people). This isn’t a decrease in homelessness – it’s a shuffling of adults with learning disabilities off the statistical books.

So, even these highly limited statistics suggest a trend towards increasing homelessness for adults with learning disabilities, especially among those people who were known to councils but aren’t getting long-term support from them.

It also ignores the much larger group of adults who as children were recorded by the education system as having learning disabilities, but who are not identified as such in social or health care services – likely to be at least 700,000 people (see here for a discussion of this http://chrishatton.blogspot.co.uk/2015/11/the-disappeared.html ). Even taking the rate of 0.8% of people in highly temporary accommodation reported for adults with learning disabilities known to councils in 2013/14 (which is likely to be an under-estimate), this would suggest another 5,600 homeless adults with learning disabilities in England. In total, this is getting up towards 7,000 homeless adults with learning disabilities in England. 

Statutory homelessness statistics

I also looked at the statutory homelessness statistics reported by the Department for Communities and Local Government (see here https://www.gov.uk/government/statistical-data-sets/live-tables-on-homelessness ) to see if they included any information on people with learning disabilities. I’m new to this information so I may well have got things horribly wrong, but my understanding is that households with a person with learning disabilities should count as one of the ‘priority need’ groups for local authorities in terms of a homelessness duty, on account of their ‘vulnerability’.  

Unfortunately, it isn’t clear from the national statistics that this is the case. Information is broken down by some ‘priority need’ groups (households with dependent children; household member pregnant; homeless in emergency; household member vulnerable through old age, physical disability, mental illness, being a young person, domestic violence, or ‘other’), but people with learning disabilities are not one of these groups and are not explicitly mentioned as being part of the ‘other’ group either.

I don’t know if this means that information on people with learning disabilities is collected but not explicitly reported (so they are part of the ‘other’ group), or if people with learning disabilities are not, in fact, treated as a ‘priority need’ group by councils.

Overall, the number of households in ‘priority need’ groups being accepted as homeless by councils has increased from 2010 to 2015 (from 42,390 people in 2010 to 56,500 in 2015, an increase of 33%). Among the English population generally, there has also been a big increase in rough sleeping (102% increase from 2010 to 3,569 households in 2015 – see https://www.gov.uk/government/statistics/rough-sleeping-in-england-autumn-2015 ). It would be odd if adults with learning disabilities, particularly those not getting long-term support from councils, were bucking this general trend.

A Shelter report into the 2014 Scottish homelessness statistics (see http://scotland.shelter.org.uk/professional_resources/policy_library/policy_library_folder/homelessness_in_scotland_2014_getting_behing_the_statistics ) reported that 630 out of 9,999 households with a priority need assessed as homeless included a person with learning disabilities as a ‘priority need’ – this was 2% of all households assessed as homeless by local authorities in Scotland.

Surveys

Given the severe limitations of the national statistics, surveys conducted by homelessness organisations can be really helpful. For example, Homeless Link do an annual survey of providers of support to homeless people, and in their 2015 report they found that 8% of people using homeless accommodation services were people with learning difficulties, and 7% using day centres for homeless people were people with learning difficulties (see http://www.homeless.org.uk/facts/our-research/annual-review-of-single-homelessness-support-in-england ).

What do we know?

From this initial look at the statistics concerning homelessness amongst people with learning disabilities in England, we know some things but not others:

1. Whatever information you use, homelessness is a significant problem amongst people with learning disabilities, and is likely to be on the increase.
2. Official statistics say very little about homelessness amongst people with learning disabilities, and are moving towards making the issue of homelessness amongst people with learning disabilities invisible.
3. We don’t know how many people with learning disabilities are homeless, how they have been made homeless, the extent to which homelessness services are accessible to people with learning disabilities, and how (if at all) people are being supported to regain a home.

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 

Out for the count

At the start of the Winterbourne View/Transforming Care programme to get (some) people with learning disabilities out of specialist inpatient services, it became very clear that information about the number of people in inpatient services, and what was happening to them, was pretty much absent. The National Audit Office (see https://www.nao.org.uk/wp-content/uploads/2015/02/Care-services-for-people-with-learning-disabilities-and-challenging-behaviour.pdf ) and the Public Accounts Committee gave NHS England a good going over about this in 2015.

Although the determined invisibility of people with learning disabilities in inpatient services had been an issue for some years, the Health and Social Care Act (2012) made a bad situation worse in terms of trying to collect comprehensive information. At the end of September 2015, according to data collected from (most) commissioners (HSCIC Assuring Transformation, see http://www.hscic.gov.uk/catalogue/PUB19833 ), people with learning disabilities and/or autism were being kept in inpatient services by 204 out of 209 local Clinical Commissioning Groups, and 10 regional NHS England specialist commissioning hubs. According to the Learning Disability Census (see HSCIC http://www.hscic.gov.uk/article/6874/Learning-Disability-Census-2015-almost-half-of-inpatients-with-learning-disabilities-common-to-each-census-since-2013 ), at the end of September 2015 people with learning disabilities and/or autism were in English inpatient services run by 58 different NHS Trusts and 31 different independent sector organisations.

NHS England and the Health and Social Care Information Centre at the moment have three sources of information about people with learning disabilities and/or autism in inpatient services.

Monthly Assuring Transformation data (see http://www.hscic.gov.uk/catalogue/PUB19833 - I last discussed information from this dataset on this blog here http://chrishatton.blogspot.co.uk/2015/11/impatient-inpatient.html ). This is information collected every month from health service commissioners in England (although not all of them send in returns every month) about how many people with learning disabilities and/or autism they are paying for in inpatient services. Although they are all English commissioners, the numbers should include people who they have sent to inpatient services out of England (Wales and Scotland, most likely) as well as people in inpatient services in England.

The Learning Disability Census (see http://www.hscic.gov.uk/article/6874/Learning-Disability-Census-2015-almost-half-of-inpatients-with-learning-disabilities-common-to-each-census-since-2013 ). This collects information from inpatient service providers in England about which people with learning disabilities and/or autism are in their inpatient services at the end of September each year. This could include people in English inpatient services who have been sent there from commissioners outside England (again, most likely to be Scotland and Wales).

Mental Health and Learning Disabilities Dataset Statistics (see http://www.hscic.gov.uk/catalogue/PUB19578 ). This information is also collected monthly, from a wide range of providers of mental health and learning disability specialist services in England, although so far there have been no reports breaking down in detail the number of people using different types of specialist learning disability service (this includes inpatient services, but also specialist community services).

The Learning Disability Census (which was done in 2013, 2014 and 2015) is not planned to be repeated in 2016. Instead, the other two sources of information (Assuring Transformation and the Mental Health and Learning Disabilities Dataset Statistics - MHLDDS) are supposed to be able to take up the slack and provide all the information needed about people with learning disabilities and/or autism in inpatient services. As things stand at the moment, I think this assumption is debatable.

From what we know, it’s possible that both the Assuring Transformation and MHLDDS datasets are going to miss significant numbers of people that, according to the Learning Disability Census, are in specialist inpatient services.

First, the Health and Social Care Information Centre has done a detailed analysis comparing people with learning disabilities and/or autism reported to be in inpatient services at the end of September 2015, according to Assuring Transformation versus the Learning Disability Census (this analysis is reported in the Learning Disability Census report). In total the Learning Disability Census reported 3,000 people in inpatient services, compared to 2,625 people reported in Assuring Transformation. In total 2,140 people were reported in both datasets to be in an inpatient service at the end of September, 855 people were inpatients according to the Learning Disability Census but not Assuring Transformation, and 480 people were inpatients according to Assuring Transformation but not the Learning Disability Census.

Some of these differences might be explainable. For example, in Assuring Transformation commissioners regularly ‘find’ more people that they report retrospectively, so the number of people in inpatient services at the end of September reported by commissioners will increase. There are also some people picked up by the Learning Disability Census in English places that are not commissioned by English commissioners (and so not included in Assuring Transformation). Conversely, Assuring Transformation should pick up people in places outside England (so not included in the Learning Disability Census) that have been commissioned by English commissioners. Taking all these together, it means that we’re still not clear how many people with learning disabilities and/or autism are in inpatient services at any one time, with the potential numbers of people being anything from around 2,600 people to 3,500 people.

Second, will the MHLDDS pick up information on everyone identified in the Learning Disability Census as being in a specialist inpatient service? To get a rough handle on this, I looked at both the Learning Disability Census and the MHLDDS for the lists of service providers from which data were collected at the end of September 2015 (these are available in the HSCIC online data tables). In total there were 26 provider organisations mentioned in the Learning Disability Census that were not in the MHLDDS list, with at least 445 people with learning disabilities and/or autism living in these places according to the Learning Disability Census.

These organisations included six NHS Trusts with a total of 60 people:

·        3 children’s trusts (Alder Hey 5 people; Sheffield Children’s 5 people; Birmingham Children’s 5 people)

·        2 community trusts (Derbyshire Community Health Services 5 people; Birmingham Community Healthcare 20 people)

·        Puzzlingly, 1 mental health trust (Norfolk & Suffolk 20 people)

They also included eight independent providers with fewer than 5 people each (Shrewsbury Court Independent Hospital; The Lane Project; Alternative Futures Group; Turning Point; Vision Mental Healthcare; Eden Supported Living; Making Space; The Retreat Hospital York).

Finally, they included 12 independent providers with 5 or more people (totalling 385 people between them):

·        Turning Point (Rotherham) 10 people

·        The Breightmet Centre for Autism 5 people

·        Baldock Manor (Nouvita Ltd) 5 people

·        Danshell Group 85 people

·        Equilibrium Healthcare 30 people

·        Curocare Ltd 30 people

·        Glen Care 5 people

·        Lighthouse Healthcare Ltd 85 people

·        St Mathews Healthcare 25 people

·        Jeesal Akman Care Corporation Ltd 40 people

·        Brookdale Healthcare Ltd 40 people

·        Cheswold Park Hospital 25 people

If the Learning Disability Census is not to be repeated, these providers need to be checked (it’s possible that there are some errors in the Learning Disability Census, particularly among providers identified with less than 5 people) and added to the list of providers in the MHLDDS dataset. Apart from this practical step, there are much bigger issues that confront anyone trying to collect meaningful information about people with learning disabilities and/or autism in inpatient services.

First, clarity is needed about whether to collect information about people in inpatient services in England (even if they’ve been sent there from a commissioner in Wales, Scotland or elsewhere) and/or information about people in inpatient services commissioned by English commissioners (even if they are sent to inpatient services in Wales, Scotland or elsewhere). My feeling is we need to know both, and co-operation with other areas of the UK is needed to get a better overall picture if Transforming Care targets for reductions are not to be gamed by commissioners and service providers.

Second, it’s going to be difficult to keep up with the proliferation of independent sector organisations providing inpatient services – the number of people with learning disabilities and/or autism in independent sector inpatient services seems to be increasing as the number of people in NHS inpatient services declines.

Third, if people with learning disabilities and/or autism do start to make increasing use of generic mental health inpatient services rather than specialist learning disabilities inpatient services, information systems will need to be able to track individuals with learning disabilities rather than people in learning disability services (and to look for people across a wider range of NHS Trusts) – a challenge to the MHLDDS and other information systems too.

Fourth, to achieve Transforming Care targets, there appear to be a number of new services being developed that to the people living in them may look a lot like an inpatient service but which are not going to be classified as such. The new-build ‘Daisy’ complex in Wiltshire (see http://www.wiltshireccg.nhs.uk/news/new-learning-disabilities-service-to-launch-in-wiltshire ), where people are to be transferred from inpatient services to a 9-bedded ‘residential home’ to be built in the grounds of a psychiatric hospital, is a prime example of this. This will not count as an inpatient unit but may well feel like one (except that people won’t be expected to ever leave).

Fifth, another crucial fuzzy boundary is between residential special schools and inpatient services. Around 160 people with learning disabilities and/or autism up to the age of 18 are reported to be in inpatient services, but it is unclear how this maps on to the number of people in residential special schools. Knowing about these schools is a really important part of any strategy that is serious about preventing young people going into inpatient services in the first place, as a recent excellent research review by Nick Gore and colleagues on residential schools makes abundantly clear http://sscr.nihr.ac.uk/PDF/ScopingReviews/SR10.pdf ).

The last point I want to make is my personal biggest reason for wanting to keep the Learning Disability Census, and it isn’t about tracking the number of people in inpatient services. My reason is that the Learning Disability Census is the only place that gives us any regular, large-scale information on what happens to people in inpatient services – restraint, seclusion, assaults, and antipsychotic medication usage. Losing this information would give us no way of scrutinising what inpatient services are doing to people (Transforming Care aims to retain around half of the current number of inpatient places), which to me is an essential part of evaluating the impact of the Transforming Care programme.

Business as usual?

[Image: Wellcome Library, London]

Between Christmas cake and 1001 leftover turkey recipes, I’ve been mulling over the Mazars review of deaths in Southern Health NHS Foundation Trust and how they were (not) investigated (see https://www.england.nhs.uk/south/wp-content/uploads/sites/6/2015/12/mazars-rep.pdf ). In particular, I’ve been wondering: 1) whether the NHS England/DH attempt to shut this down by publishing it within a couple of hours of parliament going into recess before Christmas will be successful; and 2) whether the squawks of outrage press released by various charities will be quietly shelved for ‘business as usual’ at the usual DH and NHS England tables in the new year.

In my own mind, I’ve never really resolved the insider-outsider conundrum. Is it better to be working ‘on the inside’ to get something done, even in profoundly unpropitious circumstances, with all the attendant compromises involved? Or is ‘influence’ a comforting illusion which can begin to look like collusion? Can shouting from the ‘outside’ ever be effective rather than just being self-counsciously virtuous, or does it alienate people on the ‘inside’ who might otherwise be receptive to what you’re saying? Does withdrawing from the insider table send an important message, or just leave a smaller number of people round the table to carry on without having to hear from dissenting voices? I’m also acutely aware that this is not a choice that is available to pretty much everyone with learning disabilities or their families, who are shut out from meaningful decision-making.

For me personally, the Mazars review and how DH/NHS England have dealt with it represent a fundamental failure at a crucial moment. I do quite a lot of work with DH and NHS England as part of my work for IHaL, the learning disabilities public health observatory funded by Public Health England. I also have ongoing contacts with DH and NHS England as an academic, trying to offer advice around what the available research evidence says on a range of issues.

The day after the Mazars review and the responses were published, I sent the following email to a colleague in DH who had asked me to be involved in something as an academic – I sent a very similar message to someone in NHS England too:

Dear

Thanks for your message – I was waiting until I saw the Department of Health response to the Mazars report. Personally, how DH responded to the Mazars report was a crucial barometer for me of whether DH as an entity can be trusted to stand with people with learning disabilities and families when the going gets difficult, and whether DH are prepared to address the fundamental discrimination faced by people with learning disabilities. I’m gutted to find that I personally think DH have catastrophically failed. This makes me feel that, in terms of national initiatives to transform care for people with learning disabilities, I have no confidence in the capacity of DH to do this properly.

If I am required to take part in this process as part of my Public Health England responsibilities then I will do so, and to the best of my ability. If you’re asking me to do this as an academic, then I must say no. I can’t continue with ‘business as usual’ and collude in processes that I don’t have confidence in. I’m gutted to say this, and this isn’t at all to question your personal commitment and capacity to do the right thing which I respect greatly. I just feel that the response to the Mazars report has shown that the DH system as a whole isn’t ready to do what really needs to be done.

Best wishes, and take care

Chris

Depending on how you look at it (and I oscillate wildly in how I think of it myself), this is anything from foolish through mushy compromise to fatuous virtue signalling (compounded by putting it in this blog).

My real point here is not to signal this as a good decision, or to encourage other people to do something similar – there are a wide range of perfectly defensible and reasonable decisions that could be made. My point is simply that I would ask other people, and particularly big and influential charities and other organisations, not to unreflectingly carry on with ‘business as usual’ but to ask themselves searching questions about: 1) What their strategy is about engaging (or not) with DH and/or NHS England (and ADASS too); 2) What their rationale is for their strategy; and 3) How would they know whether their strategy is successful or not, and whether there are any circumstances under which their engagement strategy would change? And I would want big charities and other organisations to make their decision-making process public.

I’m not a natural ‘boat rocker’ (ha!) and writing this post feels uncomfortable (which it should do). I’d be really interested in people’s opinions.

Heart of darkness

Blog: Heart of darkness

The long-delayed Mazars review is out today (see here https://www.england.nhs.uk/south/wp-content/uploads/sites/6/2015/12/mazars-rep.pdf ). For those of you unfamiliar with the Mazars review, this is a review of all deaths of people with learning disabilities and people with mental health problems in Southern Health NHS Foundation Trust services over a four-year period, from April 2011 to March 2015. After meeting @sarasiobhan, one of David Nicholson’s last acts as CEO of NHS England was to commission this review, to find out how many people had died as Southern Health patients and (given Southern Health’s attempt to categorise LB’s death as due to ‘natural causes’ and therefore not requiring an inquest) how Southern Health had investigated (or not) and done something about (or not) their services in the light of these deaths.

(Kazimir Malevich, Black Square)

The review has been conducted by Mazars, an international ‘audit, tax and advisory firm’ that on the face of it speaks the kind of corporate language I find impossible to understand (see http://www.mazars.co.uk/ ). Two things about this choice are interesting to me. The first is how far NHS England felt they had to go away from the usual networks of ‘experts’ (including ‘experts’ in supposed ‘independent reviews’) to have a hope of getting a truly independent report that would be less enmeshed in the interpersonal webs of people feeding off the freelance margins of the health service. The second thing is that, in my experience, people and organisations whose job isn’t specifically to ‘support’ people with learning disabilities often behave with far more decency, respect, and straightforward professionalism than supposed ‘specialist’ staff/services. It’s almost as if no-one’s told them that people with learning disabilities are only occasionally and provisionally citizens at all, and they perversely insist on treating people with learning disabilities as just, well, people.

In this blogpost I want to go through some of the findings of the Mazars review, focusing on people with learning disabilities within Southern Health (I’m sure others will focus on the equally shocking set of findings concerning people with mental health problems), and say what I think these findings mean. Up front, can I say that in the ‘modern way’ era of shiny corporate euphemising bullshit, this report reveals a state of affairs that is quite the equal of any institutional era inquiry in its deliberate disregard for human life. I will try and avoid rhetorical excess but I warn you; if you have a scintilla of decency then reading this report will rightly put you in a very bad place.

So, a bit of context about Southern Health NHS Trust. The Mazars review covers a four-year time period, from April 2011 to March 2015. In April 2011 Southern Health Foundation NHS Trust came into being, formed when the specialist (largely mental health and learning disability-focused) Hampshire Partnership NHS Foundation Trust took over NHS primary care services across Hampshire. A further acquisition, of a specialist learning disability trust covering Oxfordshire, Wiltshire and Buckinghamshire (the former Ridgeway Trust) took place in November 2012. The current CEO of Southern Health NHS Foundation Trust, Katrina Percy, started as Chief Executive (designate) for the Hampshire Partnership Trust in May 2007, and has remained Chief Executive until the time of writing this blogpost.

Two reasons for sharing this context: 1) despite Southern Health’s attempts to pin the blame on those pesky rogue staff in runaway Ridgeway, this review covers a substantial period of time before Ridgeway was ‘acquired’. 2) Southern Health has had the same CEO before, throughout and after the period of the review, who has surely been fundamental to shaping the culture and practices of the Trust. And if “The fact is, good leadership leads to better care”, as stated by none other than Katrina Percy (http://www.leadershipacademy.nhs.uk/blog/leadership-when-the-going-gets-tough/ ), then it is surely the corollary that worse care (as LB’s inquest so heartbreakingly demonstrated) is caused by bad leadership.

Expect the unexpected (death)

What did the Mazars review do? Page 7 of the report sets this out clearly. “It is not a clinical case review of each service user and we have therefore not tried to identify clinically avoidable deaths. It does seek to establish the extent of unexpected deaths in Mental Health and Learning Disability services provided by the Trust and to identify any themes, patterns or issues that may need further investigation based on a scope provided by NHS England.” As the Mazars review also says, many people do not die an unexpected death (although expected deaths can still be avoidable, see http://chrishatton.blogspot.co.uk/2015/12/death-star.html ), and reporting/recording/reviewing can be more difficult if a person has been using a specialist NHS service (in the case of Southern Health, this includes community-based support and social care as well as inpatient services) but their place of death is elsewhere, such as an acute hospital. This does not excuse a specialist Trust from its responsibility to make sure that:

·        “There are thorough and challenging reviews undertaken when the death of a service user happens unexpectedly – regardless of the location of the death;

·        These are not necessarily serious incident investigations but occur in a range of ways including clinically led mortality reviews;

·        The learning from national reports is applied when making decisions about local investigations;

·        There is an open, transparent and independent approach to investigations with the intention of securing all the evidence needed;

·        Families and carers are involved where at all possible;

·        Reviewers are trained and investigations are of a high standard;

·        Lessons are shared widely between providers, commissioners and other agencies; and

·        That organisations investigate incidents of unexpected deaths jointly where appropriate.”

While Southern Health have been fighting a rearguard action against the publication of the Mazars review on the grounds of methodology and briefing in ways that only seem to reveal a horrific misunderstanding of their role, it seems to me that: 1) the Mazars review team has done a painstaking job of picking through the chaos of the reporting systems used by Southern Health and has been appropriately cautious in its conclusions (which makes them all the more damning); 2) Southern Health wouldn’t know a rigorous, unspun methodology if it took the form of Jiminy Cricket and perched, whistling, on their collective shoulders.

What did they find? If you have the stomach for it, it’s really worth reading the report itself (weirdly, the Executive Summary is at the, er, front, which devotees of the Verita 2 report will know is not how it’s done), but here goes…

From April 2011 to March 2015, there were in total 337 deaths of people with learning disabilities who had been using Southern Health learning disability services – this includes 38 people with learning disabilities who were using Southern Health’s social care service, TQ21. That’s over 80 deaths of people with learning disabilities using Southern Health every year, including almost 10 people every year in TQ21 social care services. As well as this horrifying number of deaths, the average age of death of people with learning disabilities using Southern Health services was 56 years – a full 7 years younger than the already shockingly young average age of death reported in CIPOLD. Southern Health hadn’t looked at this, of course, or considered early mortality as an issue worthy of attention.

In addition to the total number of deaths recorded on the now notorious RiO system, Southern Health also recorded any ‘unexpected’ deaths on their Ulysses system (presumably medications are recorded on a Getafix system?). Over the four years, 157 of the 337 deaths (that’s 47%, not far off half of all deaths) were recorded in this system as ‘unexpected’. The Confidential Inquiry into Premature Deaths of People with Learning Disabilities (CIPOLD, see http://www.bristol.ac.uk/media-library/sites/cipold/migrated/documents/fullfinalreport.pdf page 34) defined an ‘unexpected death’ as a “death which was not anticipated as a significant possibility 24 hours before the death or where there was a similarly unexpected collapse leading to or predicating the events which led to death”; they found that 43% of deaths of people with learning disabilities were unexpected.

An unexpected death should be serious stuff, shouldn’t it? If a person using your service dies in a way you wouldn’t have predicted 24 hours before, you’d want to find out why and how, so you can tell the family honestly what happened and do everything you can to make sure it doesn’t happen to other people – wouldn’t you? Not within Southern Health, apparently. Their policy is to complete an Initial Management Assessment (IMA) within 24 hours, which does some preliminary scoping of the circumstances of every unexpected death and help determine whether further investigation is needed. Only 66 of the 157 unexpected deaths reported (42%) even got as far as getting one of these assessments done.

Even worse, the quality of these assessments was often shoddy, to put it mildly, with no clear rationale for why investigations shouldn’t go further, little evidence that directors paid attention to them, no evidence of involvement from family members, and no action plans attached to them. Despite the fact that over half of these IMAs concerned people who had apparently died in an acute hospital, joint investigations with the acute Trust were not carried out.

The Mazars team conducted a review of the content of these IMAs, revealing harrowing stories (similar to CIPOLD) which, if taken seriously, could have prevented further deaths of people with learning disabilities within Southern Health. Common issues emerging from IMAs concerned the identification and management of dysphagia and helping people to eat and drink safely, problems with PEG feeding, and not ensuring people got the hydration and nutrition they needed (my heart goes out to @justicefornico here). Other common issues were the (lack of) liaison with acute hospital learning disability liaison staff, and support workers in residential services being slow to recognise and do anything about signs of deteriorating health.

Surely a good proportion of unexpected deaths would require a Critical Incident Review, another level of internal Southern Health investigation and reporting using Root Cause Analysis (it’s all still internal at this stage, with no reporting to external databases required)? And then, if a death meets certain criteria, the trust has to report it within 48 hours to the national Strategic Executive Information System as a Serious Incident Requiring Investigation (SIRI), which while still conducted internally has to be reported to commissioners.

Let’s have a round of ‘Play Your Cards Very Wrong’ shall we? Of the 157 unexpected deaths of people with learning disabilities (or the 66 where they bothered to do an IMA), how many went forward for a Critical Incident Review or were reported as a Serious Incident Requiring Investigation? Lower, lower, no, still lower, LOWER. Two people’s deaths got as far as a Critical Incident Review and two people’s deaths were recorded as SIRIs. In total, 99% of unexpected deaths of people with learning disabilities were not recorded on a national system that would have brought them to the attention of commissioners or the CQC.

When commissioners did get the SIRI reports, they often complained of delays, had to return them because they were of such poor quality, or had to reopen investigations ‘closed’ by the Trust. Of course, commissioners also showed few signs of actively pressing for complete and better information on the deaths of people with learning disabilities, instead supinely accepting the information they were given without wanting to look too closely.

And as for Southern Health’s favourite phrase, learning lessons? What to make of Figure 19 from the Mazars review (I’ve copied this in below – RiO is the reporting of all deaths, Ulysses is the reporting of unexpected deaths, IMA/CIR is deaths where some form of investigation has occurred, and StEIS is deaths reported as SIRIs), showing that, for people with learning disabilities, “the Trust has steadily reported and investigated fewer deaths each year over the period of the review”? Surely a Trust with steady feedback from coroners about their terrible recording and investigation processes around deaths would be getting better at identifying unexpected deaths and investigating them properly? For people with learning disabilities, it would seem the opposite is happening - some form of anti-learning?

I’m bored, I’m the chairman of the board

As someone who has struggled with Southern Health Board papers from time to time, I can only admire the systematic trawl of the Mazars team through a swathe of Board papers. Again, their major conclusions are damning. Only the number of suicides was consistently reported to the Board over time (the rest was subject to ever-changing kaleidoscopic dashboardification), and only unexpected deaths resulting in SIRIs (already winnowed down severely as we’ve seen) rather than all unexpected deaths were reported to the Board.

The Board Assurance Framework makes no mention of unexpected or premature deaths, and the Board papers report constant reassurances from executive directors about the robustness of the SIRI investigation process without any supporting evidence. Again, despite multiple warnings from coroners documented by the Mazars team, there is little evidence that the Board even knew of these warnings, let alone did anything about them. [As an aside, one of the many occasions when a sentence drew an expletive from me was the fairly jaw-dropping fact that Southern Health had been involved in at least 375 mental health or learning disability inquests in the last 4 years – these coroners really need to get their heads together].

In the executive summary, the Mazars team are very clear in detailing the main findings and what follows from them. Rather than repeating it all (do read them – they’re unusually clear) here are a few quotes:

“The failure to bring about sustained improvement in the identification of unexpected death and in the quality and timeliness of reports into those deaths is a failure of leadership and of governance.”

“In our view there has been a lack of leadership, focus and sufficient time spent on reporting and investigating unexpected deaths of Mental Health and Learning Disability service users at all levels of the Trust including at the Trust Board. Due to a lack of strategic focus relating to mortality and to the relatively small numbers of deaths in comparison with total reported safety incidents this has resulted in deaths having little prominence at Board level. The systems in place provide no evidence that the Trust has fully reported or investigated unexpected deaths or taken remedial action where appropriate. This is also evidenced by the inconsistent and incomplete nature of the data supplied.”

“Despite the Board being informed on a number of occasions, including in representation from Coroners, that the quality of the SIRI reporting processes and standard of investigation was inadequate no effective action was taken to improve investigations during the review period.”

The heart of darkness

So, how can I try and sum up the Mazars review? Southern Health NHS Foundation Trust, under the consistent leadership of a single CEO (and a core group of Executive and Non-Executive Directors), put in place and maintained a system of recording, reporting and investigating deaths that: 1) had too many ‘filtering’ layers; 2) was unclear; 3) was implemented in a chaotic and incomplete way; and 4) was not scrutinised by the Board at all. The consequence of this ‘system’ was that a high number of deaths of people with learning disabilities, and a high number of unexpected deaths, translated into almost zero investigations that would involve any visibility to the Board, to commissioners, or to the CQC. Despite repeated complaints/warnings from coroners and others about this system, over the four years of the review fewer and fewer deaths were recorded as unexpected or subject to even the most scant level of investigation.

Four thoughts.

First, this is Mid Staffs type stuff, isn’t it? I don’t see how a Chief Executive and a Board with such a record can possibly continue in post.

Second, is Southern Health unusual, both in the rate of deaths of people with learning disabilities (remember CIPOLD also had many more deaths reported to them than they were predicting) and in their reporting practices? The ‘outlier’ argument beloved of Southern Health is irrelevant – if crap smells the same as other crap, it’s still crap. If NHS England really wanted to get to the bottom of this they would give the new national mortality review function run by the University of Bristol (see http://www.bristol.ac.uk/sps/leder/ ) much sharper teeth – mandatory not voluntary mortality reporting, and stricter standards and external scrutiny of the way mortality reviews are done (including how unexpected deaths are defined and reported).

Third, the written statement delivered by Jeremy Hunt for the Department of Health (see here http://www.parliament.uk/business/publications/written-questions-answers-statements/written-statement/Commons/2015-12-17/HCWS421/ ), the joint NHS Improvement (formerly partly Monitor)/NHS England/Care Quality Commission statement (‘leaked’ to me – so sue me), the statement from the commissioners (who they? See http://www.westhampshireccg.nhs.uk/news/item/133-commissioners-response-to-mazars-report-into-mental-health-and-learning-disabilities-deaths-in-southern-health-nhs-foundation-trust ) reveal a comprehensive failure on a scale that is insulting, really. This was an acid test of whether, for all the signed #changeday light bulbs, cascading workstreams, fine words about the 6Cs [add no, no, in, mis, no, and no to this list and you’re about there https://www.england.nhs.uk/wp-content/uploads/2012/12/6c-a5-leaflet.pdf ], and endless plans re-spun in the wake of nothing happening, these organisations were going to stand together with people with learning disabilities and families when the chips were down. A test which has been monumentally flunked:

·        The delay and two fingers symbolism of the timing of the reports publication, and the written statements.

·        The complete lack of recognition that accountability is required for what has happened at Southern Health and the lack even of a mention that what occurred might be, erm, bad (the CQC will do ANOTHER focused inspection – there have been many of Southern Health, which have been damning in what they’ve found in their services for people with learning disabilities – oh, and then they’ll chat to the invisible Monitor, where no doubt there will be agreement that ‘progress has been made’ and, er, that’s it).

·        The sliding elision from Southern Health responsibility to airy questions of general culture – yes, absolutely this may be happening elsewhere, but what message does letting Southern Health off the comfy velvet hook of supposed monitoring send?

·        Despite the repeated, repeated, repeated evidence from people who have actually engaged with Southern Health over the years of how they roll, a bland (and by now knowing) public acceptance that it was a small error of paperwork which they’re sorting out now it’s been brought to their attention. If I get pissed and assault someone, I’m sure the police will be very understanding the next morning when I explain that I’ve taken measures to mitigate my drunken violence by sobering up overnight in the police cell, so there’s no need to charge me with anything is there?

·        The bland phrases that trip off the apparatchik’s tongue: “the report is critical”; “there is more to do”; “we agree with the spirit of this recommendation”. This is perfectly encapsulated in a video clip Jeremy Hunt has circulated on his twitter feed, where you can see/hear him saying “Whatever may or may not have gone wrong” (yes, really).  

·        The reassurance that the CCGs will hold Southern Health to account, despite the fact that they have repeatedly shown no will or capacity to do this so far.

In both responses, I can see the traces of the usual civil service innovo-whip-round. What are we already doing that we can dress up as a new initiative that’s responding to what’s happened? Writing a note to Medical Directors offering help? Pur-lease, as my daughter says. The national mortality review function already exists, and these statements say nothing about beefing up its powers in the light of what Mazars have reported (for services, participation is voluntary, for example). They say they will try and collect better information about services, which is something that is already part of the Transforming Care programme.

I know there are excellent people working in NHS England and the Department of Health who are highly committed to improving the lot of people with learning disabilities and their families (if you are reading this, I’m hoping you will know who you are) and they are good people trying to do good things in difficult circumstances who I respect greatly. But what does this say about the capacity of these organisations to really stand shoulder to shoulder with people with learning disabilities and families? After this, why should a whole bunch of people trust organisations that, when it comes down to it, can’t deliver? If they can’t address the implications of the Mazars report properly, how on earth are they going to ‘Transform Care’ with their ‘Big Plans’ and ‘Service Models’. Ask yourself, who is anxious and who is reassured tonight?

Finally, for me the Mazars review brings into the open what feels like a fundamental disregard for the lives of people with learning disabilities, even within organisations that are supposed to be supporting people. We can’t pussyfoot around any more with more guidance but only if you feel like it, more soft-soap persuading people to do the ‘right thing rather than the wrong thing’ (why are people doing the wrong thing still in their jobs?). We need to confront this head on, cut the crap and say the thing itself. At least we now know that we can’t rely on the Department of Health, NHS England or the accountability roundabout. More and more I think the only way to really cut through the miasma of quietude is to really, really, put people with learning disabilities and families in charge.

Six hours’ silence

Right at the start of the Mazars review report, the Acknowledgements section begins with this:

“This report presents a lot of numbers. The team recognise that each number represents a loved one and would like to give their condolences to the families of every person referred to in the following chapters.”

337 lives, all different, all irreplaceable. If we held a minute’s silence for each of the 337 people with learning disabilities who died, we would be silent for almost six hours (and this is just one NHS Trust). And once this period of silence is over (as we have seen, there is too much silence, too many whisperings behind closed doors) we must not, cannot, return to business as usual. Business as usual is killing people [and there’s the rhetorical excess…]