1. No category

The mobility of the sick: perverse
organizational premises
Margaret Grieco,
Professor of Transport and Society,
TRI, Edinburgh Napier University
email: [email protected]
Identity
• The images provided today are of my
parents as they sought to maintain their
mobility even whilst sick in their final
years.
The remit
• The remit for today’s presentation was to
develop and advance a critical appreciation of
modern organizational forms and principles. My
critical appreciation of modern forms of
organization, their performance, affordances and
failures has largely been developed in the
intersection between my very vibrant working
class family (most particularly my parents, Mary
and Hughie Hossack, both of whom died this
year within eight weeks of one another) and my
professional experience and training.
Developing critical voice
• I understood very early that the shape of
the world experienced by my family
differed greatly from both the professional
account of the world and the personal
experience of professionals in that world.
My critical voice makes use of my
professional training to better relay the
experience of the world as lived by my
parents and their social and kin networks
in their journeys to death
Inclusive critical organizational
theory
• it is a step in the direction of inclusive critical
organizational theory and a beginning to the
recognition that unless end-users are properly
consulted and afforded full participation in any
system or organization the failings of that system
are likely to remain concealed and disguised
from policy makers and operators even as the
population of end-users grows its own
knowledge base of the gaps in provision and the
errors in performance.
Mobility and the end user
• Extendable contours of end user
participation in the design of mobility
• Easing mobility and the extension of wellbeing
Expert provenance
• Let me start by providing some provenance in terms of my
professional standing on research into health system and their
related mobility dimensions. At the ESRC Work Organisation
Research Centre at Aston University in the 1980s, I had
responsibility for researching hospital design and within that remit I
researched the early attempts to improve the coordination of patient
transport systems within the NHS, most particularly at Bury St
Edmunds. In the late 1980s whilst researcher at the Transport
Studies Unit, University of Oxford, I researched low income journey
patterns in Liverpool including difficulties experience on health
journeys. In the 2000s, whilst Professor of Transport and Society at
Napier University and in conjunction with the Transport Studies Unit
of the University of Oxford, I undertook consultancy on health
transport provision in Oxfordshire. Also in the 2000s, I undertook
action research with communities in Newcastle on the difficulties
they experienced on health journeys.
Outside the normal constraints
• This experience of health system and hospital research
has stood me in good stead these last years as both my
parents increased the level of their interaction with the
NHS. Both have recently died and I am in the position of
having been witness to their experiences of the patient
transport system without having any of the usual
constraints on confidentiality or access surrounding
social science research in the very heavily
bureaucratized contemporary period. In this
presentation, I want to set out some of the insights that
my privileged position as daughter to my valiant parents
afforded.
Opening the door on a closed
evidence system
•
I do this to open debate outside of the confines of our current
understanding of the evidence based system where what constitutes
evidence is insufficiently problematised and where those agencies
commissioning the research are very often the immediate
beneficiaries of the evidence arrived it. The permissions necessary
to produce evidence outside of the dominant funding framework of
government linked and financed research are themselves
problematic and gaining them creates the alert which very often
precluded the emergence of the evidence. In this context, there has
been the use of the new communication technologies by social
movements of patients relatives as in the case of Staffordshire’s
hospital - such social movements have raised alerts but are poorly
accompanied by professionals failing to examine their stance and
distance from the funding agencies.
Mobile networks
• Achieving health through active
participation
The mobility of the sick, a perverse
organizational premise
• Today I want to take this audience inside
the lived experience of Britain’s low
income and vulnerable sick population. I
want to start with installing the
understanding that inside a system
declared to be dedicated to the sick and
‘intended’ to ensure that those of low
income have access to health facilities,
there are perverse organizational
premises in position.
Placing health beyond reach
• The first perverse organizational premise that I
want to address today is ‘the mobility of the sick’
itself. Through an organizational process of the
centralization of treatment facilities which is an
outcome of the intersection between land values
and the desire to achieve economies of scale,
we have come to a position where treatment is
concentrated in large scale institutions which are
very often located at points that are not
convenient for those on low income and
increasingly are associated with the spreading of
disease as well as with curing disease.
Insistence on the supersize
• The insistence on economies of scale and
super-size, centralized facilities can in this
context be viewed fairly easily as a perverse
organizational premise. Facilities which were
historically located at the centre of populations
have now been moved to points on the
periphery because of greater space and lower
land costs without adequate attention being paid
to the transport geography of health to ensure
that these facilities are indeed readily reachable.
Sustaining sociability
• Maintaining the face to face
Measuring stress against mode of
access
• The models used to determine
accessibility to these facilities bear little
relation to the lived experience of travel
stress and barriers to accessibility
encountered on both routine and crisis
journeys to health facilities. The transport
of the sick to the place of treatment could
be properly integrated into the provisions
of the National Health System but it is
undoubtedly not.
Mobility of the patient versus
mobility of the treatment
• The level of transport system coverage, and
indeed the audit of transport system coverage, is
very weak and is in the process of further
weakening. Let me use this space today to
indicate that requiring mobility from the sick is
from the start a questionable principle – so
ingrained is this ‘modern’ principle that we
actually have no policy discussion of the extent
to which equipment might be better designed to
afford a greater level of mobile treatment.
Designing the transport geography
of health
• That different configurations of the relationship
between illness and mobility are possible has
received no substantial policy attention. There is
no policy discussion of how better to organize
the transport geography of health – the
discussion rests at the level of providing
transport for the extreme cases and as we shall
see in the journey we take in this presentation
today even here the lived experience of hospital
transport is an unnecessary stressful and
frequently undignified one.
Evasion of the public gaze
• In the journeys of my parents to their
deaths, there was the precious
professional opportunity to have access to
these dimensions and to witness their
consequences. Under normal
circumstances ethical permissions would
have had to be obtained and these ethical
permissions provide the alert and alarm
mechanisms for the evasion of public gaze
over what are publicly funded processes.
A silent policy principle
• Starting from the perversity of requiring mobility
of the sick in circumstances where the greater
mobility of the professionals and of equipment
could provide a lesser transport load and burden
on those who are already vulnerable, the silent
policy and vital premise of the contemporary
National Health Service is that the family will
shoulder the transport burden of the mobility of
the sick and caring low income families do so in
abundance.
Discourse and debate
• Ensuring network support
(not) Designing in access at health
facilities
• Oncology patients at one of Britain’s leading hospitals in
their terminal stages are not entitled to hospital transport
– they can claim travel expenses but not for taxis (the
rules can vary from hospital to hospital on who precisely
is entitled to hospital transport). Public transport
systems are not designed so that public transport
vehicles pick patients up and put them down at reception
points in a hospital which afford ready access for the sick
to facilities. A journey in a taxi or a private car often
affords the sick safer access to the hospital than can be
accomplished by any combination of public transport –
public transport is designed in the main for the able
bodied even where it is a service to a hospital.
Disattendance to distress
• This is surely perverse as it stands and clearly
fixable but why have we permitted this obvious
functional test of system performance to be
neglected - the answer lies in the disattendance
to the distress of those forced to use the system
through the absence of other options and the
reduced visibility of the fault through the
innovativeness of those assisting the sick and
vulnerable often at considerable and unrecorded cost to themselves both in terms of
stress and in terms of finance.
Paying the penalty for caring
• In a system where we force the mobility of the
sick without providing for transport
arrangements which respect dignity and
reasonable ease of access, a new perverse
organizational principle has found place – that is
the payment for the use of hospital car parks.
Hospital car parking is now a major revenue
earner with the consequence that family and
friends not only provide the critical link in
providing access to hospitals they pay major
financial penalties for doing so.
Information technology and bona
fide parking
• Claim back schemes are weak and not
well advertised and the development of an
administrative scheme which ensured that
those parking on hospital premises have
bona fide reasons for doing so is not a
difficult organizational step in these times
of new technology but the revenue drive is
perverting the publicly acclaimed goal of
hospital functioning.
The absence of compassion
• The patient transport systems of the NHS are
not well researched, have been inadequately
evaluated and are not presented in an
administrative form which makes them
accessible to end user scrutiny or indeed end
user use. Where patient transport is provided the
dominant focus is on achieving notionally high
levels of system efficiency through the
bureaucratized scheduling of patient journeys.
Waiting lists, disrupted lives
• This bureaucratized scheduling occurs in a
context where there is a lack of effective
coordination between agencies and in which
elderly citizens have to stand ready to be picked
up for their journey at a time well before their
appointments and where the vehicle that is
supposed to carry them may actually arrive after
their appointment time has passed. Where the
authorized patient transport vehicle is late, the
patient will still receive treatment but at a very
delayed time.
Slack for the system, distress for
the patient
• This accommodation between agencies
creates slack which is useful to the patient
transport system operators but fails to
appreciate the travel stress and disruption
to the lives of the elderly ill that it
occasions.
Increasing stress, accentuating
illness
• This lack of patient control over the time windows of their
transport and treatment does not fit well with the
expressed service character of the NHS and
understandings of patients’ charters and patients’ control
over their health circumstances and rests on a perverse
organizational premise. The value of time of the nonworking receives a lower assessment than that of the
able-bodied and working, however, the level of stress
that lack of control over a journey inflicts on the
vulnerable has consequences for the pattern of
treatment outcomes.
Lengthened journeys, reduced
dignities
• Furthermore, in this context of lack of control over the
time windows involved in their transport and treatment,
the elderly are placed into inconvenience by the
lengthened duration of journeys because of the logistic
practices of filling a vehicle en route to a hospital or
treatment centre. The journey is all too often not a direct
one with all the attendant pressures of a full bladder that
such lengthened journeys occasion. Clearly under such
conditions patient travel stress is heightened – studies of
these logistic practices and the consequences of these
practices are missing from the performance evaluation of
the health system.
Controlling journey times
• Ensuring dignity
Fully loaded
• A time-space constraint analysis of the
mobility of the sick that the present
institutional interaction between patient
transport systems and health system
requires is long overdue. This pressure to
ensure that vehicles are fully loaded can
be readily viewed as inappropriate to the
function of providing elderly patients with
readily accessible treatment in dignity.
Transporting the sick: delivering
health
• The present arrangements can rapidly be
seen to be based in perverse
organizational premises: the logistic
organization appropriate for the
transportation of goods, we must
recognize, is not necessarily appropriate
for people.
Failure to provide and failure to
communicate
• The present patient transport system does not
guarantee the elderly sick the availability of
patient transport systems. Elderly oncology
patients with terminal sickness, as we have
already remarked, are responsible for their own
transport to treatments. Inside of this poorly
coordinated health transport provision system
with its highly evident gaps in provision, the
failure to communicate patients’ conditions and
special needs for transport occurs all too often.
A modern ‘Babel’
• Despite the communication affordances of new
information communication technologies, practices
around elderly patients remain babelesque – notes are
not passed on from the professionals involved at one
stage of a health journey to those who are meant to take
responsibility for the next or if they are they are
misplaced. There are very poor handover practices and
no ‘chain of evidence’ or ‘chain of information’ protocols.
Citizen accounts of such failure are plentiful and radio
talk shows such as that hosted by Radio Cambridge
provide ample account for the systematic organizational
science research on the matter to begin.
Accommodating escorts
• Discussions of whether the mobility of the sick or
the mobility of the service provider is what is
required in an aging society have not yet begun
but there are sensible and critical discussions to
be had on this topic. Similarly, the entitlement to
be escorted by a relative in a patient transport
vehicle is not recognized and this discussion is
one that should be had as a matter of urgency in
a context where the elderly person or any sick
person may need support in providing and
maintaining an accurate narrative of their
ailment and condition.
The perverse premise of efficiency
• The time-space constraint of scheduling vehicles fully
loaded with the sick works against the preservation of
the necessary space for what is surely the necessary
escort if both accuracy and compassion are to be
respected. It is a perverse organizational premise to
assume that efficient information handovers are in play:
twice in two nights I found myself having to inject my
diabetic mother in one of Britain’s leading hospitals
because of inadequate information transfer procedures –
and there were many other instances of such failure
around her treatments and of those known to her and
within her social network.
Patient control
• In witnessing, a persistent set of logistic and failures of
compassion in the treatment of my elderly but vibrant
parents, it seemed to me that there must be better ways
of achieving coordination around the needs of the elderly
sick which did not maximize their scheduling load whilst
simultaneously providing scheduling flexibilities to the
system – and I think that I see a path forward which is
worthy of policy attention. There is a need for a person
based coordination tool or handset which is within the
ownership of the patient - such a handset could hold the
patient’s records, provide real time information on patient
transport systems routing and pick up times, provide an
alert where there are failures to attend to the specific
needs of the patient and, as importantly, provide a
record of such failures.
The bureaucracy of bereavement
• Before leaving the time space constraint framework
experienced by elderly patients of the NHS and the
perverse organizational premises which define and
accompany it, I want to draw attention to the complexity
of scheduling and scheduling overload experienced by
elderly patients in the bereavement context. In the
present, the bureaucracy attending bereavement
maximizes the resource uncertainties of the bereaved
(despite the one off payment for bereavement of a
spouse, the remaining partner is subject to a set of
procedures of reassessment for benefit entitlements
requiring appointments and detailed provision and representation of information already held by the state).
Accentuated vulnerability
• At this point in the life cycle, and given the likely
health difficulties attending the surviving elderly
partner, resource uncertainties should be
minimized and not to do so is at odds with stated
governmental policies of social inclusion. The
current bureaucracy attending bereavement
accentuates the vulnerability of the elderly sick –
and clearly adds to the level of time space
constraints experienced by this vulnerable group
by increasing the density of the scheduling load.
Fragmentation of care
• Let me leave this discussion with the
understanding communicated to me by expert
medical practitioners in one of the country’s
leading specialist hospitals – the health transport
systems do not fit well with the culture they
would prefer to exist around their patients and
their treatment but they are powerless to make
the changes even within their own environment.
The fragmentation of authority and function
leaves the medics with no power to produce in
the ancillary services the culture and practice
that would best benefit their patients.
Oxygen constraints
• The medic only has control at the point of
treatment which means that respiratory patients
who are oxygen dependent can be left for
considerable lengths of time without being
provided with the transport they have booked –
and this in a context where patients have to
bring their own oxygen with them. Clearly, a
situation of extreme time-space constraint
produced through the operation of perverse
organizational premises and one that is routinely
present in our society without an accurate record
being taken, called for or acted upon.
Time for change
• Time for change, time for measurement,
time for social action, time for policy
action, time to attend to distress and to
properly involve the end user in
determining the pattern of provision: time
that organizational research took a critical
path to resolving the paradox of requiring
the sick to be mobile.
Charting and correcting perverse
organizational premises
• In conclusion, we have taken a troubling journey around the
undiscussed character of routine constraints and barriers
experienced by the vulnerable in the health context. Along the
journey we have seen that the relationship between dignity, bodily
functions and time space dynamics are insufficiently considered and
actively disattended to with highly negative consequences for policy
formulation. Policies are required which compensate for existing and
measureable vulnerabilities and a process driven adjustment to
existing practices, provisions and facilities rather than
bureaucratised standardization is needed. If mobility is required of
the sick then appropriate transport arrangements must be made and
must be viewed as part of the treatment system not as an ad hoc
add on; if social network dynamics are to be used in the transport of
the sick, then policy must be explicit on it rather than silent and must
accommodate it by rethinking the current pattern of penalties for
such necessary participation.
Raising challenge
• Currently, research structures have become overly
corporate with the size of an institute’s budget and the
payment of professionals for supposedly evidence based
research becoming the hallmarks without the imperatives
to service the vulnerable and to ensure that evidence is
not overly determined by dominant funders being
respected. The power to speak over the experience of
the end user has its own time space characteristics – the
location of the presentation of evidence has a
consequence for its form. Presenting evidence in a
location, framework and forum where end users can
raise challenge is critical to the integrity of the policy
process but these conditions are rarely met in the
present policy environment.
Revealing under use and under
representation
• Data needs to be collected in a way and with the purpose of
revealing patterns of under-use and under-representation of
services and facilities by the vulnerable and not simply collected to
confirm assumptions of patterns of competent performance. The
high quality framing of issues must concern itself with revealing the
previously hidden – perverse organizational premises must be
challenged. A time space constraint approach leads us towards
more fundamental practices of process investigation rather than a
parading of apparent patterns of outcomes and this in turn leads us
towards a practice of process correction. Identifying time space
constraints represents a woefully neglected element of the sickness
and mobility discourse and it is time for the correction of this neglect
with detailed analysis of time space constraints across the range of
social action and health. Such an analysis will rapidly highlight the
perverse organizational premises currently in play.
The end user
The need for active advocacy