Wednesday, 30 December 2015

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.



Thursday, 17 December 2015

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…]

Monday, 14 December 2015

Death Star



I’ve not wanted to blog anything about the #Mazars report into deaths at Southern Health until I’ve had a chance to see and digest the final report. But this internal briefing [update and correction - my error - this wasn't an internal briefing but a statement that was sent to universities with students at Southern Health] from Katrina Percy, tweeted by @sarasiobhan earlier today (see below), shows such a catastrophic (wilful?) lack of understanding that I need to say something quickly before such misunderstandings become entrenched.





Where to start with this?  The Confidential Inquiry into the Premature Deaths of People with Learning Disabilities (CIPOLD), conducted by the University of Bristol, should be required reading for anyone wanting to understand the issues involved (see here for the full report http://www.bris.ac.uk/media-library/sites/cipold/migrated/documents/fullfinalreport.pdf ). Page 34 in the full report defines 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”. So – an unexpected death is simply one that was not anticipated (by whom is an interesting question in itself, but anyway…) 24 hours before the person actually died. In the CIPOLD study, 43% of the deaths of people with learning disabilities were defined as ‘unexpected’.

Whether a death is unexpected or not is not equivalent to whether a death is ‘premature’. A death is defined on page 35 of the report as premature “if, without a specific event that formed part of the “pathway” that led to death, it was probable (i.e. more likely than not) that the person would have continued to live for at least one more year”. In the CIPOLD study, 42% of the deaths of people with learning disabilities were premature.

Finally, premature deaths are likely to have been ‘avoidable’. The CIPOLD report defined two types of avoidable deaths:
·        “Amenable mortality. A death is amenable if, in the light of medical knowledge and technology at the time of death, all or most deaths from that cause (subject to age limits if appropriate) could be avoided through good quality healthcare.”
·        “Preventable mortality. A death is preventable if, in the light of understanding of the determinants of health at the time of death, all or most deaths from that cause (subject to age limits if appropriate) could be avoided by public health interventions in the broadest sense.”

The CIPOLD report found that 28% of deaths were amenable, 12% of deaths were preventable, and 9% of deaths were both amenable and preventable. In total, 49% of the deaths of people with learning disabilities were avoidable.

Why have I gone on about this in such detail? Because I think it’s vital to gaining an understanding of the deaths of people with learning disabilities if we’re going to do better at not killing people before their time.

Katrina Percy’s statement shows a profound lack of interest in or understanding of these issues, in a number of ways that shocked me (I really shouldn’t be shocked by now, but I’m going to choose to treat my naivety as a weird sort of strength):

First, the statement assumes that all ‘expected’ deaths are by definition unavoidable, do not require investigation, and there is no point in investigating them. WRONG! Expected deaths just mean those that might have been anticipated 24 hours before. If a person doesn’t get cancer screening and therefore has a late diagnosis of cancer, their death will be ‘expected’ but still avoidable. If a person spends years on anti-psychotic medication, with all its attendant effects on weight and other impacts on physical health, a person’s death might be ‘expected’ but still avoidable. A specialist mental health and learning disabilities service might be expected to be interested in these causes of death, and want to something about it? Not in Southern Health it appears.

Second, I’m horrified by the statement that heart attacks and strokes are ‘clinically unavoidable’. A specialist mental health and learning disabilities trust, which will be largely responsible for the prescription of psychotropic medication such as anti-psychotics and anti-depressants, should be profoundly concerned about the impact of their medication practices (such the effects of anti-psychotics on weight gain, for example) on people’s health risks for deaths through heart attacks and strokes. This “not me guv” response shows an appalling lack of understanding of how to reduce the risks of people dying. It’s worth bearing in mind that 17% of adults with learning disabilities known to GPs in England are prescribed anti-psychotics (see https://www.improvinghealthandlives.org.uk/securefiles/151214_1614//Medication%20easy%20read%20report.pdf ), and in the 2014 learning disability inpatient census 73% of inpatients with learning disabilities had been prescribed anti-psychotics in the previous 28 days (see http://www.hscic.gov.uk/catalogue/PUB16760 ).

Third, ‘natural causes’, really? How does Katrina Percy have the effrontery to make this argument? Southern Health originally tried to classify Connor’s death to @sarasiobhan and others as ‘natural causes’, when through JusticeforLB fighting tooth and nail his death was determined to be preventable and an inquest jury found this was due to neglect on the part of the Trust. Surely this statement of Katrina Percy only serves to raise doubts about other people’s deaths that were classified by the Trust as ‘natural causes’?

So, Katrina Percy is stating that all the expected deaths, and all those unexpected deaths due to (cough) ‘natural causes’, shouldn’t been the focus of any interest by Southern Health in their deaths; especially as “we were not the primary care provider at the time of their death” [Aside – what does this frantic buck-passing say to Southern Health vanguard GP practice colleagues? When the going gets rough, we’re going to chuck you overboard?]. For both people with mental health problems and people with learning disabilities in the care of a specialist trust you wouldn’t expect the specialist trust to be the primary care provider. The trust is, however, responsible for the diagnosis and ‘treatment’ of specialist support, including psychotropic medications, anti-epilepsy medications, and inpatient services. Many people will have long-term contacts with the Trust, over months or years. To try and fob these people off as solely the responsibility of people’s GPs is desperate and dangerous, especially as the support offered (or in the case of some people with mental health problems, refused) can have major short and long-term effects on people’s health, including their deaths.

And to add a final insult to injury, the statement says that most of the deaths ‘did not occur in our hospitals’. Well, the trust does have inpatient services, but it isn’t an acute trust. At Connor’s inquest, the Southern Health legal team were very keen for the coroner’s report to state that his death occurred in John Radcliffe Hospital rather than Slade House (an ambulance took Connor to John Radcliffe Hospital where his death was officially ‘called’). So does this count as a death ‘that did not occur in our hospitals’ Katrina Percy? And how many more people’s deaths have been ‘classified’ in this way?

If this statement was intended to discredit the (still unpublished at the time of writing) Mazars report, for me it’s done exactly the opposite. It’s revealed a Chief Executive (who knows what other people working in the Trust are making of this?) who has a dangerous lack of understanding of what a specialist trust should care about, and is fixated on reputation no matter what devastation it causes. No more words.




Friday, 20 November 2015

Impatient inpatient

The latest monthly statistics on the number of people with learning disability and/or autism in specialist inpatient units has been released today by the Health and Social Care Information Centre (HSCIC, see http://www.hscic.gov.uk/catalogue/PUB19062 ). Six months ago I wrote a blogpost on these inpatient statistics (see http://chrishatton.blogspot.co.uk/2015/05/one-step-beyond-what-do-latest.html ). At the time the statistics suggested the number of people in these inpatient units was not decreasing, but commissioners reported that 37% of people had a discharge date within the next 6 months. I foolishly wrote that if this prediction was right, we should see a significant dent in the number of people in inpatient units in 6 months’ time. What’s happened?

Well, on a nerd point, one big thing that’s happened is that the HSCIC have continued to try and improve the quality of the data they have. This leads to some complications when interpreting trends. This graph from the HSCIC executive summary neatly shows the problem.




The dark blue bars show the number of people in learning disability inpatient services steadily increasing over time (from 2,445 people in April 2015 to 2,620 people in October 2015) – this is based on the number of people that commissioners reported at the time. There are two reasons why this increase is hard to interpret though.

First, over time more CCGs are getting round to actually reporting any information to HSCIC (not like it’s a national priority or anything). In April 2015 the figures were based on returns from 167 commissioners (45 commissioners didn’t provide any information/updates, and 7 commissioners apparently didn’t have anyone in learning disability inpatient services). By October 2015, 189 commissioners were submitting information (26 commissioners still didn’t submit any information that month, and mysteriously the number of commissioners without anyone in inpatient services had dropped to 4). So – more commissioners reporting would suggest bigger numbers of people reported to be in inpatient services over time.

The second issue is in the light blue bars in the graph. As well as reporting the number of people for that month, commissioners can retrospectively report people in inpatient services that they didn’t report at the time - presumably people they’d only just found out about. These numbers are reported in the light blue bars. For April 2015, this adds 240 people (10%) to the number of people reported at the time. Each month, more and more retrospective people are added to the numbers, sometimes from several months back.

This means that we can’t interpret the overall numbers of people reported with learning disabilities in inpatient services as reducing over time either. Although the headline numbers drop from 2,685 people in April 2015 to 2,620 people in October 2015, by next April it’s possible that commissioners will have retrospectively added something in the order of 200-300 people to the October 2015 numbers.

Bearing all these caveats in mind, what is clear is that there has been no really significant drop in the number of people with learning disabilities in inpatient units over the past six months.

Most of the rest of the information in the HSCIC data tables is based on information submitted at the time by commissioners (so the dark blue line in the graph), which increases over time, so any changes over time have to interpreted in the light of this general ‘inflator’. Overall, the pattern is of no real change from April to October 2015, despite Care and Treatment Reviews and the nascent Fast Track Sites. For example:
·        The number of people aged under 18 in inpatient services (120 people in April; 135 people in October) – surely a priority?
·        The number of people with neither learning disabilities nor autism in inpatient services (90 people in April; 105 people in October) – why?
·        The number of people in inpatient settings that are not ‘secure’ (1,105 people in April; 1,190 people in October) - which you might expect would be the first group where you would see a reduction in numbers?
·        The number of people in inpatient settings that are not CQC compliant (280 people in April; 275 people in October) – where are the commissioners?
·        The number of people in inpatient services that are not subject to the Mental Health Act (305 people in April; 315 people in October);
·        The average number of days that people had spent in their current inpatient service (from an average 1,107 days in April to an average 1,118 days in October – that’s just over three years);
·        The average number of days in total that people had continuously spent in inpatient services, including transfers between different units (from an average of 1,894 days in April to an average of 1,942 days in October – that’s well over five years).

There are, however, some trend-buckers (have to be careful how I say that), all of which are going in the wrong direction:
·        The number of people in inpatient services who last had a review between 6 months and a year ago (up from 625 people in April to 965 people in October);
·        Even worse, the number of people in inpatient services who last had a review over a year ago (up from 30 people in April to a whopping 475 people in October);
·        The number of people in inpatient services who are reported to be ‘not dischargeable’ (up from 555 people in April to 655 people in October);
·        The number of people in inpatient services who do not have a planned transfer date (up from 1,290 people in April to 1,540 people in October).

There are some other worrying snippets that are hard to square with the latest NHS England/LDA/ADASS strategy “Building the right support”, more widely known I think as “Homes not hospitals” (see https://www.england.nhs.uk/wp-content/uploads/2015/10/ld-nat-imp-plan-oct15.pdf ).

First, only 575 people in inpatient services in October were reported to have a plan involving moving to ‘the community’ (this includes varieties of supported living and living with families), with a further 390 people having a plan to move to residential care. Most of the rest of people with a transfer plan (and bearing in mind that these plans don’t have to have discharge dates attached), have a plan to move to another variety of inpatient service.

Second, the most common ‘diagnostic category’ on admission to an inpatient unit was reported to be ‘learning disability’ (995 people in October 2015) – surely this should not be sufficient to get you into an inpatient unit?

Finally, there were 860 people in October 2015 where the local authority was not aware of a planned transfer to their local area. This may be because many people being ‘transferred’ are actually being transferred to other inpatient services, but it’s worrying in the light of the latest social care statistics that local authorities only report supporting 490 adults with learning disabilities in inpatient settings (see http://chrishatton.blogspot.co.uk/2015/11/social-care-its-not-complicated-any-more.html ). Despite the LGA/ADASS/NHS England strategy making much of its invitation to pool budgets across health and social care, a 'transformation fund' and a promise of dowries for those living in inpatient services for 5 years or more, it’s doubtful to me whether under the cosh local authorities are going to play.

I fear more Daisies on the horizon, a “home” for people for whom “living at home is not an option” (see http://www.awp.nhs.uk/news-publications/trust-news/2015/october/new-service-will-bring-vulnerable-adults-back-home-to-wiltshire/ ). As the Director of Quality for Wiltshire CCG describes it:

“This innovative service aims to provide individualised care and support for Wiltshire residents who have a complex learning disability with a mental health condition or display behaviours that challenge. This is a local residential setting which will encourage individuals to maintain their family relationships, build a fulfilled life through participation in the community and access mainstream services when required to ensure that their health and social care needs are met.” (see http://www.wiltshireccg.nhs.uk/news/new-learning-disabilities-service-to-launch-in-wiltshire )

This is a nine-bedded ‘home’ being built in the grounds of a psychiatric hospital in Devizes, pretty central in the county but still three-quarters of an hour by car from the county town, Salisbury (going by public transport will take you an hour and a half, if you’re lucky). It’s called Daisy because its floor plan looks like a daisy, as can clearly be seen here.


I have nothing else to say.







Tuesday, 10 November 2015

We don't need no consultation


Lately, I find myself turning more and more to the Devil’s Dictionary by Ambrose Bierce (a late 19th century American rabble rousing journalist and writer) – see http://www.thedevilsdictionary.com/  for an online version. On the day the Department of Health published its response to their consultation “No voice unheard, no right ignored”, I found this Devil’s Dictionary entry:

Consult, v.i. To seek another’s approval of a course already decided on

The sad thing this, applying this to the Department of Health consultation response feels like a bit of a compliment, unless ‘the course of action already decided on’ includes ‘doing as little as possible’. This blogpost won’t be a comprehensive look at the consultation response (can I call it NVUNRI, which any fan of Shooting Stars will know how to pronounce) – others are better placed than me to do this well and it has been handily summarised by @AndyMcNicoll…



Instead, this blogpost will contain some random reflections, in particular doing a bit of good ol’ comparing and contrasting (those student essays burn deep…) with the consultation process and response for Valuing People Now. Valuing People Now (VAPENOW?), let’s remember, is only six years old, and has never to my knowledge been officially superseded by any overarching policy for (with?) people with learning disabilities since.

A declaration of interest here – at Lancaster University we analysed the responses to the Valuing People Now consultation – although my beef isn’t largely with the way the NVUNRI has been analysed and reported (this was also done by an independent agency, The Evidence Centre). Instead my beef is with the half-hearted way in which the Department of Health ‘promoted’ the consultation, and the political uses to which the consultation has been put.

The Valuing People Now consultation (see here for the report analysing what people said http://webarchive.nationalarchives.gov.uk/20130107105354/http://www.dh.gov.uk/prod_consum_dh/groups/dh_digitalassets/documents/digitalasset/dh_093362.pdf ) gained in total 2,009 useable responses, including: 730 from people with learning disabilities; 407 from family members; 375 from professionals; and 375 from ‘others’. The report analysing the NVUNRI consultation (see here https://www.gov.uk/government/uploads/system/uploads/attachment_data/file/475153/summary_of_responses_acc.pdf ) gained 468 responses, of which ‘half’ were from people with learning disabilities and families, which a maximum of 389 responses to any individual question. Clearly, the Department of Health didn’t put nearly as much effort into encouraging people to give their opinions this time around.

The numbers of people responding to the NVUNRI consultation start to look perilously small, particularly when they are broken down into the views of different groups of people who may have different perspectives (people with learning disabilities vs large voluntary sector organisations, for example). Only the consultation analysis, and DH’s consultation response, doesn’t do this. Although we could have done a much better job of the Valuing People Now consultation analysis, particularly in terms of including people with learning disabilities and family members in the analysis, we did feel it was crucial to represent the views of people with learning disabilities, family members, and professionals separately.

Instead, throughout the DH response there is a general air of ‘some people said this, other people said that’, which is used to justify inaction or a bit more pondering. Well, which people said this and which people said that? Who is more important to listen to? What about doing what’s right?

Whatever our collectively jaundiced views on government rhetoric, the shrinkage of ambition from Valuing People Now (see http://webarchive.nationalarchives.gov.uk/20130107105354/http://www.dh.gov.uk/prod_consum_dh/groups/dh_digitalassets/documents/digitalasset/dh_093375.pdf ) to NVUNRI (see https://www.gov.uk/government/uploads/system/uploads/attachment_data/file/475155/Gvt_Resp_Acc.pdf ) is striking, even in the ministerial forewords - always a good indicator of whether the civil service machinery is signed up to a policy. Words are cheap (a lesson I know well!) but compare and contrast these snippets from the forewords – (1) is from Valuing People Now and (2) is from NVUNRI:

1)      People with learning disabilities are entitled to the same aspirations and life chances as other people.
2)      Our vision of a civilised society is one in which we take more responsibility for ourselves and our neighbours as part of thriving communities working together, and with less dependence on remote bureaucracies.

1)      But although we have made real progress, there is still a lot to do – and that is why we are restating our commitment to leading change to transform people’s lives and opportunities.
2)      One area where we are still not making enough progress to realise our vision is for those with learning disabilities, autism and mental ill health.

1)      This Government is determined to deliver equality and independent living for all disabled people.
2)      Our aim is that people lead as fulfilling and independent lives as they can, and that they have the support to live independently when possible.

1)      Moreover, we recognise that people with learning disabilities are among the groups most often excluded from society. That is why we have made it a priority across government to support more people with learning disabilities into real jobs and settled homes.
2)      For some people, being in employment will be a key indicator of success.

1)      The strategy and the delivery plan which is published alongside it set out the action we plan to take over the next three years, working with people with learning disabilities, their families and carers and with other partners.
2)      That is why you will find that this response is phased so that we can make progress urgently by building on existing momentum and implementing change quickly as well as setting out a longer term plan that will tackle some of the most difficult and complex challenges.

1)      The strategy focuses on what needs to be done at all levels to deliver the vision of equality and transformed lives for everyone.
2)      The package of proposals we set out here is intended to enable system-wide changes that make it easier to do the right thing for people and their families.

1)      If people with learning disabilities and their carers are to have the same opportunities as other people in society and to lead a fulfilling life, we need to improve their access to the whole range of public services.
2)      Many people and organisations at all levels have key parts to play in making our vision happen. At the local level, Health and Wellbeing Boards need to ensure they have good plans to tackle the challenges ahead.

1)      It means taking a human rights-based approach.
2)      As a country, a key measure of our success will be how we care for the weakest and most vulnerable in our communities.

To be honest, I feel a bit torn about presenting these comparisons – perhaps the replacement of overblown rhetoric with a bit of becoming modesty about doing practical, achievable stuff within a realistic timeframe is a good thing? Well, I’d be more convinced about this if there was a convincing, practical plan on the horizon. For all the consultation response’s grand talk about Implementation Phases 1, 2 and 3 (although they’re not sequential, you understand?):
·        Implementation Phase 1 seems to be mainly corralling stuff that is already happening (some of this is good stuff that’s worth doing, but timescales are not attached), although the DH should have learned from the Winterbourne View saga that ‘guidance’ rarely has the Cillit Bang effect on commissioners and services already under the cosh and past caring what the government tells them to do;
·        Implementation  Phase 2 is waiting to see whether any fiddling with the Mental Health Act will be recommended to the government from the Law Commission; and
·        Implementation Phase 3, “which explores more radical solutions to longer-term issues, as well as ongoing monitoring and review, and a commitment that the Government will intervene further, including through legislation if necessary, if the improvements sought continue not to be realised in practice.”

Implementation Phase 3 is curious, a kind of “You don’t feel well? Come back and see me when it’s developed into a full-blown health crisis and then we might do something” vibe. This doesn’t come close to understanding the reality of the lives of so many people with learning disabilities, how this is likely to be getting worse rather than better, and the urgency of doing something radical about it now (#LBBill anyone? https://lbbill.wordpress.com/ ).

It also doesn’t seem to realise that the information the government is collecting that could be used to ‘monitor’ the situation is getting worse rather than better in relation to people with learning disabilities (at least, the information that is made publicly available). For example, less information than in previous years can be specifically examined for people with learning disabilities regarding safeguarding referrals and their consequences and Deprivation of Liberty Safeguarding processes. There is no specific publicly available information about people with learning disabilities at all that I can find in DWP statistics (I would love to hear that I’m wrong on this). Significant numbers of commissioners and local authorities don’t bother to provide information on important policy priorities, such as the number of people with learning disabilities in inpatient services. People with learning disabilities are rapidly disappearing from official sight (and from a responsibility to be supported), both within education and adult social services (see http://chrishatton.blogspot.co.uk/2015/11/the-disappeared.html ). And the DH have not had the commitment to drive through mandatory reporting of deaths of people with learning disabilities in services, surely the most fundamental ‘monitoring’ indicator there is.


It just doesn’t feel enough.

Saturday, 7 November 2015

Chocolate fireguards

Sorry – more new depressing statistics relating to social care and people with learning disabilities to share with you. This relates to the Safeguarding Adults Return – from 2013/14 the successor to the Abuse of Vulnerable Adults datasets (such charming titles). These basically report the number of people referred to social services for safeguarding reasons relating to different types of potential abuse, who made the referral, who the alleged perpetrator was, the nature of the alleged abuse, whether the alleged abuse was substantiated, and what (if anything) happened as a result.

Up to 2012/13, information breaking all these things down specifically for people with learning disabilities was publicly available. A full report on this information is available in this extremely long report (Section 9 https://www.improvinghealthandlives.org.uk/securefiles/151106_1118//People%20with%20learning%20disabilities%20in%20England%202013.pdf ) with an easy read summary here (https://www.improvinghealthandlives.org.uk/securefiles/151106_1120//2013%20abuse%20ER.pdf ).

From 2013/14, the only publicly available information broken down specifically for people with learning disabilities is the number of people where a safeguarding referral was made, and whether people were previously known to the council or not. The graph below shows the number of people with learning disabilities and the number of other people where a safeguarding referral was made, from 2010/11 to 2014/15.

As you can see, the number of people with learning disabilities with safeguarding referrals has dropped from a peak of 21,985 people referred in 2011/12 to 15,715 people referred in 2014/15 – a drop of 29% in three years. In the same timeframe, the number of other people referred has increased slightly.

And in 2014/15, only 8% of people with learning disabilities referred were previously unknown to the council (it was 14% of people with learning disabilities referred the year before), compared to 20% of other people referred.


So, at the same time as people with learning disabilities are starting to disappear from official sight and services are being withdrawn, is any spotlight on potential abuse also starting to turn elsewhere?


Reassured? As my nana didn’t used to say, “Christopher, you’re about as much use as a chocolate fireguard”. 

Thursday, 5 November 2015

Social care - It's not complicated any more


Nearly a year ago, I wrote a blogpost looking at the social care statistics for adults with learning disabilities up to 2013/14, called “It’s complicated” (http://chrishatton.blogspot.co.uk/2015/01/its-complicated-whats-happening-in.html ). This week, I’ve been blogging (mainly) about some of the recently released social care statistics for 2014/15:

·        On the shrinking number of people with learning disabilities in official sight (http://chrishatton.blogspot.co.uk/2015/11/the-disappeared.html )
·        On the shrinking number of adults with learning disabilities in paid employment (http://chrishatton.blogspot.co.uk/2015/11/crushed-by-wheels-of-industry-if-only.html )
·        On the shrinking number of adults with learning disabilities getting personal budgets (http://chrishatton.blogspot.co.uk/2015/11/you-can-have-any-colour-as-long-as-its.html )
·        On the shrinking number of learning disability nurses (http://chrishatton.blogspot.co.uk/2015/11/nurse-nurse.html )

Can you spot the general trend yet?

In this final post of the week, I want to talk about some of the ‘big ticket’ items of social care – where people are living, what support they’re getting, and how much it costs. This uses newly released official statistics for social care in England in 2014/15 (see http://www.hscic.gov.uk/catalogue/PUB18663) and provisional statistics on social care expenditure for 2014/15 (see http://www.hscic.gov.uk/catalogue/PUB18445/pss-exp-eng-14-15-prov-rpt.pdf ). As with many other official statistics there have been major changes to the data collected in 2014/15, making last year something of a year zero and comparisons to previous years difficult. So, in this final post of the week I’m going focus on what I think can be reasonably compared over time, focusing on what’s happening in 2014/15.

Changes in the data collected make errors of interpretation even more likely than usual, so please do say if I’ve got anything horribly or slightly wrong and I’ll update the post accordingly.

Where are people living?

The first graph below shows where councils report adults with learning disabilities aged 18-64 to be living, from 2009/10 to 2014/15.

The black line at the top represents the number of adults with learning disabilities aged 18-64 known to the council (up to 2013/14) or getting long-term support from the council (in 2014/15). The thing that jumps out from this is the sudden drop from 2013/14 to 2014/15 (from 141,980 people in 2013/14 to 124,325 people in 2014/15). Is this drop because there were around 17,000 people in 2013/14 known to the council but not getting long-term support – so they’ve been excluded from the 2014/15 figures? Or is at least part of this drop because services have been withdrawn from some people?

The graph below gives us some clues. If the drop from 2013/14 to 2014/15 was simply about not counting people who weren’t getting long-term support from the council, then we might expect a big drop in the numbers of people living with family/friends and maybe in tenancies with private landlords too. There are big drops here: people living with family/friends dropped from 52,090 people in 2013/14 to 44,785 people in 2014/15; and tenants with a private landlord dropped from 16,690 people in 2013/14 to 12,425 people in 2014/15.

There is also a big drop in the number of people that councils report to be in inpatient services, from 1,035 people in 2013/14 to 490 people in 2014/15 – a long way short of the 2,705 people with learning disabilities reported to be inpatient services at end of March 2015 by health commissioners (see http://www.hscic.gov.uk/catalogue/PUB18793/ldsm-sep-15-exec.pdf ). Once a person with learning disabilities goes into an inpatient service, do councils not see them as getting long-term support from them?


So – some of the drop in numbers from 2013/14 to 2014/15 might be due to excluding people with learning disabilities known to the council but not getting long-term support from the statistics in 2014/15. But there are also consistent drops in the number of adults with learning disabilities in living situations that honk long-term support to me, including:

·        People in care homes – from 25,755 people in 2013/14 to 23,215 people in 2014/15
·        People in nursing homes – from 2,040 people in 2013/14 to 1,360 people in 2014/15
·        People as owner-occupiers/in shared ownership housing – from 3,755 people in 2013/14 to 2,460 people in 2014/15
·        People as tenants in local authority/arms-length management/registered social landlord housing – from 16,690 people in 2013/14 to 12,425 people in 2014/15
·        People in supported accommodation/supported lodgings/supported group homes – from 24,485 people in 2013/14 to 23,075 people in 2014/15
·        People in shared lives arrangements – from 3,550 people in 2013/14 to 3,100 people in 2014/15

The only form of living accommodation where the number of people increased from 2013/14 to 2014/15 was sheltered/extra care housing – from 890 people in 2013/14 to 1,195 people in 2014/15.
Some of these changes – for example the drop in the number of people in residential care and nursing care – are consistent with longer-term trends (see the second graph below). But others – for example the drop in the number of people in shared lives arrangements – reverse long-term trends of expansion. Some of this has to be withdrawal of significant support from adults with learning disabilities.


Unfortunately, changes to the statistics mean that we cannot track the number of adults with learning disabilities using specific community-based services such as day centres and home care into 2014/15. Information on the number of adults using ‘short-term’ support is also not readily available for 2014/15. The only clues we have here are in the new peculiar statistical category of "New and existing adult clients where the sequel to a request for support was short-term support to maximise independence, and what followed". I don't know whether this means that there are other requests for support going uncounted because they don't result in any support at all or in long-term support straight away, or if this is how all new 'requests for support' are counted [notice that people are requesting support now, not getting what support they are entitled to].

Anyway, for what it's worth, in 2014/15 there were 555 requests for support from 'new clients' with learning disabilities in this category. Nearly half  (40%) got no support as they had 'no identified needs', and over a third (38%) ended up getting some form of long-term support, with relatively few getting ongoing low-level support (6%) or other short-term support (6%). For me, what happened to the 1,200 'existing clients' who apparently requested short-term support 'to maximise independence' is more worrying, and clearly shows services being withdrawn. Of this group, less than half (44%) continued to get a long-term support service of some kind with a further 13% getting low-level ongoing support or some other short-term support. Fully 465 people (39%) got no support as they had 'no identified needs'.

What are social services spending on support for adults with learning disabilities?

As with the social care statistics, the social services spending statistics have also changed quite a lot in 2014/15, but using some rickety assumptions I think there are some ways of comparing spending information from earlier years into 2014/15.

Let’s start with the spending picture just for 2014/15, in the graph below. A good thing about the new statistics is that we now for the first time get information on adults with learning disabilities aged 65 years or more. Some of these new categories of spending are consistent with earlier years, but some things which were previously broken down for adults with learning disabilities (such as equipment & adaptations, and assessment & care management) are in 2014/15 only reported generically (a revealing change in itself).

Using the new spending categories, for adults with learning disabilities aged 18-64, the biggest single slice of social services spending (despite the decreasing number of people in them) was residential care (£1.7 billion), following by supported living (£892 million), with supported accommodation coming in at £278 million and nursing care at £61 million. In total, £457 million was spent on direct payments (although we don’t what the direct payments themselves were spent on), £352 million was spent on home care, and £611 million was spent on “long-term – community – other”, which I’m guessing mainly includes day care. [Incidentally, as a social scientist I wouldn’t design a coding system that has so much ‘other’ in it – you’re on the road to not having categories at all and just calling everything ‘stuff’]. In total, this social services spending on ‘long-term support’ for adults with learning disabilities aged 18-64 adds up to £4.36 billion.

What of the ‘short-term support’ – hopefully being offered to at least some of the adults with learning disabilities nudged out of the statistics in 2014/15? Well, we don’t know much about what such short-term support might be, but we know that in total £88 million (2% of the total) was spent on short-term support for adults with learning disabilities aged 18-64 in 2014/15.

For the 15,320 adults with learning disabilities aged 65 or over, £544 million in total was spent on long-term support, mostly on residential care (£255 million) or supported living (£111 million). The princely sum of £7.7 million was spent on short-term support for this group.



Trying to squish these categories of spending with those used up to 2013/14 is tricky, but I've had a go for the long-term support categories in the graph below, for adults with learning disabilities aged 18-64. Ignore the apparent bump in spending in 2011/12 – this is due to almost 2,000 people with learning disabilities (and almost £900 million) being transferred from NHS responsibility to social services responsibility as part of Valuing People Now. To put this graph together, I've mashed up the following old and new spending categories:

  • Old - residential care. New - residential care
  • Old - nursing care. New - nursing care
  • Old - supported & other accommodation. New - supported accommodation + supported living
  • Old - home care. New - home care
  • Old - direct payments. New - direct payment
  • Old - day services + meals + other community services. New - other long-term support


Just looking from 2013/14 to 2014/15, there are apparent sharp absolute reductions in spending on residential care, nursing care, home care and other community long-term support, with direct payments spending staying static and only supported & other accommodation increasing (quite sharply, too). What’s going on here? First, councils are clearly under the cosh when it comes to spending, and social services budgets which were relatively protected for people with learning disabilities compared to other groups up to 2013/14 have been taking their share of the battering in 2014/15.

Second (and this is an issue for another blogpost at another time when I understand it better), does the mirrored rise in supported accommodation/drop in residential care reflect meaningful changes in people’s homes or large-scale deregistering/relabelling of registered care homes into various types of ‘supported living’? While this may reduce the costs for social services departments (see the final graph below on the unit costs of residential care and supported living up to 2014/15), it may well increase the costs to the taxpayer, as agencies can become registered social landlords (with no cap to the amount of housing benefit that can be claimed) tied in closely to the ‘support’ provided. And these increased costs can come with no benefit (or even any noticeable difference) to the lives of people with learning disabilities living there.




In contrast to last year’s blog, I think the statistics for social care in 2014/15 are much less complicated. Adults with learning disabilities are now sharing in the withdrawal of social services attention and support that other groups of people have already experienced. If ever there is a time for a radical shift in control over state resources to people with learning disabilities and families, that time is now.

Sources

Health and Social Care Information Centre. Community Care Statistics, Social Services Activity, England 2014-15 http://www.hscic.gov.uk/catalogue/PUB18663


Health and Social Care Information Centre (2015). Personal Social Services: Expenditure and Unit Costs England 2014-15, Provisional release http://www.hscic.gov.uk/catalogue/PUB18445/pss-exp-eng-14-15-prov-rpt.pdf