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’.
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.
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