Thames Valley (Trauma) Rehabilitation Network
A discussion document
This document contains a general discussion about trauma rehabilitation networks: what they
are, their goals, who might be involved, the most important features, and the roles of the
network. It also briefly discusses the important defining features of rehabilitation. The content
needs to be considered critically, discussed and improved by members of the network and
others with an interest. Currently the primary conclusions are that: the units will be services
and teams; other people who need to be involved include senior managers in any organisation
involved, and commissioners; membership must include Social Services, and possibly
Education; and the network will only succeed if there is investment in a sound data-base and
data handling system.
CONTENT:
1.0
2.0
3.0
4.0
5.0
6.0
7.0
Introduction; setting the scene
What is a clinical network?
Network goals.
Membership of the network.
Network roles.
What is rehabilitation?
Conclusions.
1.0
INTRODUCTION
The development of major trauma centres will hopefully reduce both the frequency of
permanent losses for individual patients, and increase the quality of life and
participation in society of people who survive major trauma. It will also reduce the
eventual societal resources needed to support people left with persisting disabilities.
1.1
There will be one more immediate consequence. Concentrating patients into specified
major trauma centres will draw attention to the rehabilitation needs of this group of
people, and the frequency, the nature and the extent of the losses sustained by patients
will become much more apparent.
1.2
This is good because it will facilitate the development of a better (more efficient, more
effective) rehabilitation service for these patients which in turn will improve outcome
and reduce long-term societal costs including indirect costs to the families involved.
1.3
This benefit will not occur ‘naturally’. It will require a large collaborative effort across
many organisations and agencies spanning many different geographic areas and many
different types of agency. It will require significant changes in clinical practice and in
the way that people and organisations work, and more importantly in the way that they
think about rehabilitation. It may require adjustments in resource allocation, but in the
long-term it will undoubtedly be cost efficient, saving more that it costs across the
whole of Society (Health, Social Services, Employment, Disability allowances, Housing,
tax take etc).
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1.4
The Thames Valley trauma centre will be at the John Radcliffe hospital, Oxford and this
will cover broadly speaking Buckinghamshire, Berkshire and Oxfordshire but it is also
likely to receive patients from Wiltshire, Gloucestershire and Northamptonshire. It will
also work closely with the hospitals and areas covered by the major trauma centre
based at Southampton General Hospital.
1.5
In order to achieve the benefits, networks will be developed covering the geographic
areas that each major trauma centre covers. These networks could and probably should
include not only all Health (NHS) organisations but also other relevant organisations,
especially Social Services. There is more discussion on this matter later.
1.6
The nature of the network, its policies and practices and so on have yet to be
determined and indeed should evolve over time. There are likely to be two major
components, the acute trauma (patients entering) network and the rehabilitation
(patients moving on and leaving) components but again the extent to which these are
separate is a matter for discussion.
1.7
This general, working document will evolve over time. It is intended to discuss many
particular issues relating to the network, especially the parts that concern all post-acute
management (i.e. rehabilitation and care and support). This document will reflect the
views of anyone and everyone who contributes ideas to the network. Everything in the
document is open to discussion and change; nothing is sacrosanct.
1.8
As a reader you should check the date of the version you have. You can visit a website
to obtain the latest version and to see how old yours is. As a reader you are encouraged
to make comments, suggest improvements, develop new ideas etc. Please send the to
me as indicated at the end.
2.0
WHAT IS A CLINICAL NETWORK?
When interviewed I had to prepare a short piece on ‘What will the network achieve
because of my leadership?’. This made me consider, what is a ‘network’ because as far
as knew there was no network. Google failed to tell me anything useful; the results all
concerned wires and computers!
2.1
Neural Networks seem to be the best analogy. This discussion on the nature of clinical
networks considers them using this analogy.
2.2
A clinical network is, first and foremost, a way of organising relationships between
individual units (discussed below). It concerns how different units relate to each other.
It is not necessarily a particular resource or object.
2.3
Any clinical network should have a purpose or goal. The network of relationships
exists to achieve something that might not be achieved so well without the network.
2.4
Thus a network is a collection of units that work together towards a goal, using a set of
relationships to achieve the agreed goal.
2.5
The network should have two very important characteristics (over and above agreeing
on the goal).
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2.6
First, it is a defining characteristic of a network that it is ‘robust’. This means that the
network can continue to function when under stress, perhaps because some units
function poorly or not at all or because the demands increase. Neural networks can
deliver reasonably good performance in the face of quite severe degradation of the
network, once it is established.
2.7
Second, and a very important characteristic derived from neural networks, a clinical
network should continuously learn and adapt in the light of feedback. Neural networks
learn by receiving direct feedback after every ‘episode’ concerning the success or
otherwise of the network in achieving its goal.
2.8
In a neural network there are a small number of very simple rules that alter
relationships between the units in response to feedback.
2.9
In a neural network the ‘units’ are organised usually on three levels (input,
intermediate, output’) and they are electronic nodes that initially have almost total
inter-relationships between each and every node but over time, using feedback and
simple rules, develop a set of relationships that do not obviously relate to the goal (e.g.
recognition of a visual input) but that can then still work if some nodes stop working.
2.10
In a clinical network the question arises, what is the unit?
2.11
In this network the options include whole organisations (e.g. PCTs, Trusts, Social
Service Departments; smaller individual services (e.g. community rehabilitation team,
acute trauma team); and very small individual departments or people (e.g.
physiotherapy department, a community occupational therapist).
2.12
Given that rehabilitation is or should be a multi-disciplinary team activity then it seems
most appropriate to have individual teams as the units.
2.13
This will mean that a single management organisation such as a hospital Trust may
have several or even many units within the network.
2.14
Therefore one could define the trauma rehabilitation clinical network as “a group of
clinical teams (or services) that work together towards a set of agreed goals, defining
and continuously adapting the inter-relationships between the constituent teams (or
services) in response to frequent feedback on its performance against the goals.”
3.0
NETWORK GOALS
The most important decision to be made by and about the network concerns the
primary goal of the network; what is its purpose? The answer is not self-evident, and
will determine almost all other decisions, such as the membership of the network.
Therefore this section will outline some options and give my/the current answer.
3.1
Before progressing, it is important to recognise that choosing one on the options given
below does not imply that the other options are invalid. However it is important to
determine the most important (primary) goal.
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3.2
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3.3
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The possible goals include:
ensuring that new trauma patients can always be admitted and that patients are
removed from the acute trauma wards as quickly as possible.
ensuring transfers of care that are smooth and clinically appropriate
obtaining the best health outcome possible for a patient, being defined as experiencing
the least pain possible and with the lowest level of symptoms and signs possible
achieving the best quality of life for each patient in the long-term (two years after injury)
maximising a patients social participation at two years
minimising the financial Health resources allocated to and used by patients who have
sustained major trauma
It is obvious that many of the goals overlap, or require other goals to be achieved.
However it is important to consider the relative importance of:
limited “Health” outcomes against broader “Social” or Holistic outcomes (i.e. is the
network concerned with matters such as work, home, long-term support?)
Patient outcomes against financial consequences (i.e. are resources absolutely limited
and determined by finance?)
Acute service delivery against overall service delivery (i.e. does the acute service need
‘trump’ all other consideration?)
Patient experience against population experience (i.e. should someone be moved to a
second choice setting to allow another patient in?)
3.4
The goals put forward by the Department of Health’s Clinical Advisory Group were
patient centred and holistic, and I would suggest that the primary goal for the
Rehabilitation Network is to achieve the best possible overall outcome for all patients.
3.5
This general goal clearly does not state that an individual patient can necessarily expect
the network to allocate maximal resources to him or her, because the goal applies to all
patients. Furthermore this goal does not mean that the needs of the acute trauma
service are not considered, because all patients including future patients have to be
considered.
3.6
However it does mean that the network has to have a broad membership because
organisations and services outside Health will have a major impact upon outcome. It
also means that any compromises where one person’s rehabilitation needs are not met
in full have to be justified by an evident benefit to others.
3.7
The problem of how one balances the current clinical needs of a specific patient against
overall resources and the needs of other patients will be discussed later.
3.8
The consequences of a broad goal for deciding membership will be discussed next.
4.0
MEMBERSHIP OF THE NETWORK
The network needs to have in its membership all parties who have a significant impact
upon the outcome it aims for. Given the broad goal stated above, the network will need
to encompass a very large range of organisations. However if the network is too large,
it risks becoming unwieldy and ineffective.
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4.1
All of the NHS secondary care trauma centres will inevitably be members because
almost all patients will start their rehabilitation in these centres.
4.2
All existing NHS specialist rehabilitation services should be members because a
proportion of patients will inevitably need their help.
4.3
NHS Trusts should probably be members. The network will only be effective if it alters
current work practices, and this may also involve altering the use of existing resources
that are not currently considered part of a trauma rehabilitation pathway. Furthermore,
assuming that there is no extra resource, it may well be necessary to shift resources
from one part of a Trust to another part.
4.4
Achieving these changes will be greatly assisted if the Trust management is fully
supportive, which requires them to understand the reasoning, and the changes will
only occur if Trusts have participated actively in agreeing the changes.
4.5
Therefore in some way the Trusts need to be active members of the network. This
probably applies to all Trusts that manage within their portfolio acute hospital services,
community services, and Mental Health Services.
4.6
General Practitioners and associated primary care services will be involved closely in all
patients from an early stage, and somehow need to be involved. It is evidently
impossible for each practice to join, but some mechanism of seeking their views on both
what resources are needed and what they can take responsibility for will be needed.
4.7
Outside the organisations who provide NHS services it will be important to engage
those organisations who commission (pay for) the services. First, they have a
responsibility to spend money on effective and efficient services and so they need to be
aware of the services they are buying and how they are delivering the required output,
and how service quality is monitored and improved.
4.8
Second, they also have a responsibility to ensure that the population receives a good
service, and they are in a position to request or even require change in services
delivered by the organisations they pay – or they can choose to remove contracts to
alternative suppliers. As in fact there are few alternatives, and as collaboration and not
competition is the essential feature of a network, one hopes that removal of a contract
will never be needed.
4.9
Outside the NHS itself, Social Services are responsible for a wide range of activities that
are important in determining both the overall effectiveness (i.e. achieving optimal
outcome) and the efficiency of the rehabilitation process for example through
organising and providing, where necessary and appropriate, support and care, and
many environmental adaptations and some equipment needed after people leave
hospital.
4.10
Thus it is vital that Social Services are actively involved in the network. This would
require involvement of the senior management levels who influence resource allocation
and policies, and services who deliver services for similar reasons as applied to NHS
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organisations. It will require involvement from all geographic areas covered by the
network.
4.11
The Clinical Advisory Group specifically identified (return to) employment as an
important goal. This would suggest that the Department of Employment and Job
Centres should be involved. However people with disability, and specifically people
disabled by trauma form such a small proportion of their work that direct involvement
is probably not useful. Advice and opinions should be obtained on an ad hoc basis.
4.12
Similar arguments apply to Housing.
4.13
Educational organisations will be relevant to children, but again the numbers may be
too low to make full engagement sensible. This should be reviewed in the light of
experience.
4.14
So far we have identified a large number of organisations that have a legitimate interest
and who should be involved. Before considering the practicality of organising this
network, we should consider the actual units who join.
4.15
Units within network.
The network is above all else a clinical network; it will succeed only if individual
patients are transferred from one team to another appropriately. The transfers will
almost always be from service to service. They will rarely be decided at the level of an
individual person on their own basis; the deciding person will be a member of and will
decide on behalf of a clinical team. Equally the final decision will rarely be at the higher
organisational level such as directorate or Trust management; their role will be to
influence policy.
4.16
Consequently it seems most appropriate if the primary ‘unit’ within the network is
individual services or teams. In other words groups of people who share expertise,
who work towards shared goals, who work within a single management structure and
(usually) within a single financial unit. For example acute trauma wards and services,
intensive care units, neurosurgical units, community rehabilitation teams, inpatient
rehabilitation wards, specialist social service care management teams, vocational
rehabilitation services etc.
4.17
The network will be composed of the relationships between these units, and the
network needs to have specific information about these units. Referrals and transfers
should primarily be from unit to unit.
4.18
It should be obvious that the work of some of these units will be almost exclusively
related to trauma but for the great majority patients with trauma will only be a
minority, occasionally a small minority.
4.19
There will come a point where the involvement of a service with patients who have had
trauma is too small to warrant membership of the network. For example there will
undoubtedly be occasional patients who have nasal trauma with ongoing problems.
But (a) these patients will be less that 1% of all major trauma patients and (b) these
patients will be less than 1% of all Ear Nose and Throat patients.
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4.20
Consequently there will be a penumbra of services that are involved to an extent with
some patients. The network needs to be aware of these services and know when and
how to contact them, but it does not need to involve them.
5.0
NETWORK ROLES
The network has a clear goal – to achieve the best quality of life for all patients from its
population experiencing major trauma, taking into account available resources. To
achieve this substantial goal many resources and processes will be needed. The
network, as a network, cannot in and of itself manage individual patients, nor can it
directly provide resources. However it will have some specific roles in achieving a
good patient outcome.
5.1
This section considers what roles it may have, and what might be outside its
responsibility. Responsibility is in part determined by roles, and in part by what the
network can influence; if the network has no influence over the factors that are relevant
to a responsibility then either influence must be established or responsibility
relinquished.
5.2
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5.3
The roles of the network can be divided into two major groups:
those that concern process
those that concern information (and data)
Process
The network has a primary and leading role in establishing (a) processes within
services, for example on assessment and providing suitable treatments and (b)
processes concerned with transfers of care between services.
5.4
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Within a service the network is concerned primarily with service quality; is the clinical
team delivering care at an acceptable standard and in the most efficient way possible?
The network will be interested in processes such as:
identification and registration of patients
initial diagnosis/assessment; achieving a clinical formulation at an appropriate level of
detail for the situation, specifically identifying:
o need for care
o treatment interventions needed
o risk of any known specific adverse events (e.g. development of hydrocephalus,
venous thrombosis, skin ulceration, malnutrition)
considering, recording, and discussing the future:
o prognosis (mortality and morbidity)
o long-term goals, wishes and expectations of patient and family
o long-term goals for rehabilitation
negotiating and setting appropriate short-term management goals covering especially:
o transfer of care
o provision of support
o provision of treatments
o monitoring change
providing a level of care/support (to patient and to families) that maintains well-being
and avoids preventable complications/adverse outcomes
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providing interventions/treatments that are needed (i.e. where there is sufficient
evidence of a better outcome due to intervention) at an appropriate level and time (to
patients and to families)
monitoring change over time at a level sufficient to:
o evaluate progress towards goals/response to treatment
o ensure that an adverse outcome is not occurring
communicating by letter (and copy letters) with relevant others soon after admission:
o General Practitioner
o patient and family
o any future service likely to be involved
o any service previously involved (giving feedback)
5.5
Between services, the main process is one of transferring care. This includes identifying
the most appropriate place and time for transferring care to. It also has to be recognised
that sometimes a patient has to be transferred to a setting that is less than ideal.
5.6
The process needs to help people to decide (a) what services can meeting a minimum
standard even if not ideal, (b) which of these services will be able to accept the transfer
at the tie of transfer, and then (c) how to compromise between choices if choices exist.
5.7
The network will be interested in processes such as:
early identification of the likely discharge/transfer:
o time (how many hours/days/weeks/months away?)
o support and treatment needs
o place(s) available
early contact with the most appropriate service, and other services if difficulties are
likely, this being started once there is a greater than 5% chance that the patient will need
a transfer (i.e. it is better to contact early and then cancel than to contact late and find no
place available)
early transmission of:
o essential background data, both clinical and non-clinical
o current situation
o likely time of being ready for transfer
o likely needs at time of transfer
continued regular contact with transfer placement(s) to update on clinical situation
full transfer of information with the patient at time of transfer:
o a completed rehabilitation prescription
o clinical history to the time of transfer
o any important additional information
o names and contact details of clinical team who can be contacted in case of need
o any planned follow-up
responses of the services contacted
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5.8
Information.
Neural networks are primarily focused on analysing information, and this network
should also have as a major part of its work the collection and analysis of data to
provide useful information for services, patients, and commissioners.
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5.8
The data needed with cover the three main domains of Donabedian: structure, process,
and outcome.
5.9
The structural data will be essentially an inventory of available resources and how they
are accessed. The success of the network will depend crucially upon easily available,
readily searched up-to-date and relevant information about all resources that might be
needed.
5.10
The network itself will need a resource to develop a web-based data-base of resources,
and the costs of this should not be underestimated because it will only succeed if its
design allows anyone to find the information they need and if its resources and
management ensure that it is always accurate, complete and up-to-date.
5.11
The data-base is likely to be centred on services and teams, and will need to record
matters such as the team’s expertise and function(s), any general criteria concerning
patients, the resources available, contact details, referral preferences etc
5.12
The process data will be an audit of performance on the processes set up by the
network, as discussed earlier.
5.13
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The process data can be used to:
monitor service processes, generating information on performance and allowing some
standards to be developed
monitor transfer processes to identify systemic problems, probably largely relating to
available resources so that the network can alter transfer processes, and if needed build
cases for (re)allocation of resources
5.14
The outcome data will focus upon the patients – what is the clinical consequence of the
rehabilitation service delivered. The data can be used to monitor services against
standards and thus to provide feedback which should facilitate service improvement.
5.15
The network will need to develop processes to ensure that every patient is identified
and registered, and to obtain a small amount of data on every patient registered. It is
more important to have a small amount of basic data on every patient than more
detailed data on patients that is incomplete in many patients and completely missing
for other patients.
5.16
One consequence of this analysis is that the network will need to devote considerable
attention and actual resources to setting up the processes and, more importantly, setting
up and maintaining robust simple data collection and handling systems. Without both
of these the network will fail.
6.0
WHAT IS REHABILITATION?
This document is about a rehabilitation network and so far we have considered the
network. However it is also important to consider, in the context of the trauma
network, what is meant by rehabilitation.
6.1
There are many definitions and long articles written about this. For the purposes of hs
document and the network the definition is:
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6.3
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Rehabilitation is
a problem-solving process
focused on a patient’s disabilities (activities that are limited as part of a health problem)
undertaken by a multidisciplinary team
with the (eventual) goal being to maximise well-being (quality of life), which has two
components:
o having wanted and fulfilling social roles and
o not experiencing pain or emotional distress
This definition depends upon a model or clear understanding of the problem-solving
process. Within health, as in all other areas, it has the same steps. These are, for the
rehabilitation process (with the equivalent steps in the medical process also shown):
Collection of data to allow sufficient understanding of the clinical situation (i.e. the
factors causing or affecting the situation and data pertinent to both prognosis and
treatment). In rehabilitation this is the assessment process, and in medical practice it is
the diagnostic process.
Setting of goals which may be long-term and short-term, and which may cover one or
more of collecting specific further data, intervening to provide support, or giving
treatment to alter the natural history. Rehabilitation increasingly recognises the
importance of and documents goal setting, whereas in medical practice it is more
implicit.
Undertaking actions which may include one or more of:
o providing care or support to maintain patient safety and well-being. In
rehabilitation this is usually either hands-on help with daily activities or provision
of supervisory care to maintain safety (e.g. for a confused or aggressive patient).
In medical care it is usually supporting physiological functions in an ITU or HDU
setting, or on a ward.
o giving a treatment to improve the outcome. In rehabilitation this may encompass
almost anything (this can be explained and justified) but it ultimately involves
teaching the patient and/or altering the context. In medical care it more normally
focuses on controlling or removing the disease (pathology, usually within an
organ)
o collecting further specific data
Evaluating the actions planned at an appropriate time, and re-iterating the cycle as
needed.
The differences between medical (and surgical) care and rehabilitation care are:
medical processes occur in a much shorter time frame (minutes/hours/days as against
days/weeks/months)
medical processes focus on pathology (disease) whereas rehabilitation focuses on
activities (disability; what some can or cannot do)
rehabilitation has to take context into account (family, accommodation, expectations etc)
whereas medical care itself rarely does (of course good medical management does, if it
can)
rehabilitation usually requires multiple actions targeted at a wide range of domains and
problems, and often it is important for these to occur in a co-ordinated way and
sometimes in a specific order
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6.4
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thus rehabilitation depends crucially upon input from many agencies and organisations,
but medical care is usually all controlled within a single organisation
rehabilitation uses as it overall framework for analysis of a situation and for planning
and acting a holistic, biopsychosocial model of health (text available on request) whereas
medical care generally uses the more restricted biomedical model of illness (see text)
One other key feature that more-or-less defines rehabilitation is the need for it to be
given by a team with the following characteristics:
multi-professional with personnel that between them can manage at least 80% of all
problems posed by patients without recourse to other teams
has specific expertise for the problems and patients seen
all team members work within a single managerial and budgetary unit
has a geographic base where team meeting can occur and if there are inpatients, with all
patients being in one ward with specialist nurses
has an ongoing educational programme for staff, and usually patients and relatives
7.0
CONCLUSION
The conclusions that I draw from this analysis are as follows (in no particular order).
7.1
The goal (expected outcome) of the network needs to be discussed and an initial set of
goals agreed because the goals will determine all other aspects of the network. My
suggested goals are “to achieve the best possible long-term clinical outcomes for all
patients presenting with trauma” This will be defined as applying at two years after
trauma, and as involving (a) low levels of pain and distress and (b) high levels of social
role functioning, measured through engagement in leisure and vocational activities
(work and education).
7.2
The clinical units that comprise the network will primarily be services with multiprofessional teams. It is likely that large organisation will have several or many units
within the network.
7.3
In addition to the clinical units, other active participants in the network will include the
high-level management of any organisation with one or more units in it, and the
organisations that commission services. Ideally service users should also be
represented.
7.4
Given the goals set out, the network must include not only NHS and other health
organisations but also Social Services and Voluntary sector organisations that provide
relevant services.
7.5
The network can only succeed if it has a major investment in data collection and
management to cover:
Input.
Structure. A directory of available services and their areas of expertise, capacity, referral
processes etc will be essential to facilitate transfer of patients out of acute trauma beds
rapidly
Process. Basic data on the flow and transfer of patients from service to service and
organisation to organisation, especially documenting delays and inappropriate service
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use will be needed to start altering services. This will also require collecting data on
rehabilitation prescriptions, their completion and the extent to which recommendations
are undertaken.
Outcome. Simple clinical measures of outcome, such as the Barthel ADL index, transfer
destination/placement, and single focused questions (e.g. “Are you working?”)
Derick T Wade,
January 29th 2012
Consultant and Professor in Neurological Rehabilitation
Director of Trauma Rehabilitation, Thames Valley area (Bucks, Berks, Oxon)
Oxford Centre for Enablement, Windmill Road, Oxford OX3 7HE
Tel: 01865-737306; Fax: 01865-737309;
email: derick.wade@ouh.nhs.uk; derick.wade@ntlworld.com