The mobility of the sick: perverse organizational premises

1
The mobility of the sick perverse organizational
premises

• Margaret Grieco,
• Professor of Transport and Society, TRI,
  Edinburgh Napier University email
  m.grieco_at_napier.ac.uk

2
Identity
The images provided today are of my parents as
they sought to maintain their mobility even
whilst sick in their final years.
3
The remit

• The remit for todays 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.

4
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

5
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.

6
Mobility and the end user

• Extendable contours of end user participation in
  the design of mobility
• Easing mobility and the extension of well-being

7
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 experienced 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.

8
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.

9
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 at. 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 use of the new communication
  technologies by social movements of patients
  relatives as in the case of Staffordshires
  hospital - such social movements have raised
  alerts but are poorly accompanied by
  professionals failing to examine their stance and
  distance from the funding agencies.

10
Mobile networks

• Achieving health through active participation

11
The mobility of the sick, a perverse
organizational premise

• Today I want to take this audience inside the
  lived experience of Britains 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.

12
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.

13
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.

14
Sustaining sociability

• Maintaining the face to face

15
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.

16
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.

17
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.

18
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.

19
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.

20
Discourse and debate

• Ensuring network support

21
(not) Designing in access at health facilities

• Oncology patients at one of Britains 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.

22
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 un-recorded
  cost to themselves both in terms of stress and in
  terms of finance.

23
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.

24
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.

25
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.

26
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.

27
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.

28
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
  non-working 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.

29
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.

30
Controlling journey times

• Ensuring dignity

31
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.

32
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.

33
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.

34
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.

35
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.

36
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 Britains 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.

37
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 patients 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.

38
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 re-presentation of
  information already held by the state).

39
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.

40
Fragmentation of care

• Let me leave this discussion with the
  understanding communicated to me by expert
  medical practitioners in one of the countrys
  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.

41
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.

42
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.

43
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.

44
Raising challenge

• Currently, research structures have become overly
  corporate with the size of an institutes 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.

45
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.

46
The end user

• The need for active advocacy