Now is the
Winter(bourne) of our discontent
As has been universally acknowledged, the programme set up
by the government in the wake of the Panorama undercover expose of horrendous
abuse at Winterbourne View, a ‘specialist hospital’ for people with learning
disabilities, has not to date been a success. From the description of the Care
Minister, Norman Lamb, of the programme as an ‘abject failure’ ( http://www.hsj.co.uk/news/commissioning/winterbourne-view-scheme-an-abject-failure-minister-admits/5070443.article#.U4yKWPldWCk
) to the director of the programme, Bill Mumford, stating in a recent blog that
“ A lot has been written
by me and elsewhere which expresses a widespread and understandably deep
frustration with the sector's response since” ( http://www.local.gov.uk/place-i-call-home/-/journal_content/56/10180/6211266
), a winter of discontent has not been made glorious summer this June.
Three years
on from the original Panorama expose and with only one year left of the official
Winterbourne programme, the latest information from NHS England ( http://www.england.nhs.uk/ourwork/qual-clin-lead/wint-view-impr-prog/
) is that the position is not only not improving as quickly as was planned
(hoped for?), but that things are actually moving in the opposite direction to
that mandated by the programme. @sarasiobhan has expressed far better
than I can ( http://mydaftlife.wordpress.com/2014/06/02/a-place-i-call-home/
) the sense of outrage that has met this continued evidence of the lack of
impact of the Winterbourne programme.
In this blogpost I just want to confine
myself to a few observations and a proposal that is almost certainly completely
unworkable but suggests a very different starting point to the current approach,
which draws somewhat on the progress of the closure programme of large-scale
institutions for people with learning disabilities in the UK.
Observations
1) There is a discrepancy in the numbers, between the 3,250
people in these services identified in the latest learning disability census (http://www.hscic.gov.uk/ldcensus )
and the 2,615 people in these services identified in the latest returns from
commissioners. I think the reason for this discrepancy is quite straightforward
– both numbers are correct, it’s just that
there are around 500 people in these services who health commissioners don’t
know about. If a person has been in one of these places for a long time
(which we know isn’t unusual) how many reorganisations of commissioning have
taken place (let alone all the internal reorganisations and relabellings) in
that time. Are the cheques still being paid while the person has quite
literally been forgotten about?
2) For the first two quarters that data have been available,
the number of people being transferred into these services has been
substantially bigger than the number of people being transferred out. I was
shocked by this at the time, but on reflection I shouldn't have been
as surprised as I was. The focus of the Winterbourne programme has largely been
on those people who are already in these services – understandable, but
unlikely to be enough to tackle the systemic combined behemoth of fragmented
commissioner inattention and provider expansionism supporting these services ( http://chrishatton.blogspot.co.uk/2014/04/acts-of-commission-commissioners-and.html
).
3) I can understand the dilemma of whether to set up the
Winterbourne programme as a time-limited endeavour versus something ongoing.
However, given where we are now I think the time-limited nature of the
programme with only 12 months left is a real problem. From what we’ve seen so
far, I suspect that many commissioners and providers will be tempted to stick
it out and hope that any pressure being exerted by the Winterbourne programme
will soon go away (just see what happened after the disbandment of the Valuing People
Support Team).
4) According to the latest NHS England figures, by far the
most common reason given by providers (via commissioners) for people not having
plans to transfer out is a ‘clinical decision’. Four thoughts on this for now,
that for me raise questions about the appropriate status and role of psychiatry
in these services:
·
Although these are designated ‘hospitals’, it’s
useful to remember that institutions for people with learning disabilities were
originally run by local authorities, and it was only the creation of the NHS in
1948 that magically turned these places overnight into health services (partly
through their gradual colonisation by psychiatry throughout the 19th
and early 20th centuries).
·
Reasons for transferring people into these
services are frequently reported as ‘learning disability’, ‘challenging
behaviour’ or ‘mental health problem’. The first two of these are not in
themselves health issues, and effective support for the third can frequently
come from non-medical approaches.
·
One would hope that ‘hospitals’ would at least
provide effective physical health care for people with learning disabilities
(especially as they can underpin many behaviours labelled as ‘challenging’ https://www.improvinghealthandlives.org.uk/securefiles/140602_1606//Factsheet-CBed.pdf
), but #justiceforLB and many other people’s experiences show that this simply
cannot be guaranteed in these services.
·
There is precious little evidence that these
services as a ‘model’ of care are routinely providing high quality therapeutic
environments for people on the short-term basis they are apparently set up to
provide. Over two-thirds of people getting anti-psychotic medication in the
last month, over a third of people experiencing hands-on restraint in the last
three months, 60% of people having lived in the service for a year or more (all
from the learning disability census) – these services are not delivering on
their own terms, let alone according to other ways of thinking about a person’s
life.
A proposal
This proposal is not thought-out, economically tested, or in
all probability practical. I simply offer it as a sketch of what could happen
if we start from a different set of assumptions, and as the start of a
conversation.
Most commissioners have demonstrated that they have not got
anywhere near the target for transfers out by 1 June 2014, and I suspect may be
too small, fragmented and focused elsewhere to pay proper attention. So:
·
Close all of these services to new admissions.
·
CQC to make a clear statement that they will not
register new services of this type, and that they will have a process of
deregistration of existing services.
·
For all commissioners still funding people in
these services, take that funding off them to be administered by a national
ninja closure taskforce. This would give the taskforce a starting budget of
over half a billion pounds per year (could add in the Winterbourne View
programme money too?).
·
Put people with learning disabilities and
families really in charge of this
ninja taskforce, making decisions about who is appointed to work on the
taskforce in which capacities, what the taskforce does, and how it operates.
·
The ninja taskforce works to develop local,
individual supports for people moving out of these services – with new people,
agencies and supporters rather than with the usual provider suspects (unless
the usual provider suspects can come up with something really good that the
person and family members want). Obviously this would be person-centred, with
the person and family in charge of circles of support.
·
Funding at its current ATU level moves with the
person (howls of protest, two-tier Rolls Royce service, all true, but it would
demonstrate what good looks like).
·
The ninja taskforce also helps to develop local,
individual supports for other people with learning disabilities who might have
been sent to these places by commissioners, including strong local structures
for self advocacy and family advocacy.
·
The ninja taskforce to help to develop ways of
supporting people with learning disabilities in acute distress/crisis for short
periods of time.
I’m sure there are a million reasons why this is unworkable
(sadly my reservations are mainly about how such a proposal could be sabotaged by
various players). I’d be very interested to know what people think - it's time for more than Glycerine and Cucumber to protect us from this winter.
