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…]
