MEMORANDUM BY DR LYNNE TURNER-STOKES,
DIRECTOR, REGIONAL REHABILITATION UNIT, NORTHWICK PARK HOSPITAL
(H19)
HEAD INJURY REHABILITATIONHOW SHOULD
IT BE PROVIDED?
EXECUTIVE SUMMARY
Rehabilitation involves the restoration of an
individual to optimal physical, cognitive, psychological and social
function following brain injury. Often it means life-long support
of those who have to live the rest of their lives with permanent
disability.
Patients need different types of rehabilitation
programmes at different stages in recovery: A range of different
services to meet these differing requirements, but close networking
and communication is essential to ensure a seamless continuum
of care.
Age-ism is to be avoided, but old and young
people often require different approaches to rehabilitation.
Younger patients with more complex
needs for rehabilitation may require longer in hospital using
specialist skills and facilities to gain full independence.
For older patients, hospital is a
dangerous placerapid discharge to continued rehab in the
community is preferable.
The cut-off point at which it is
appropriate to provide either of these approaches, is not determined
simply by chronological age but should be judged in individual
cases.
Investment is required in both specialist and
general rehabilitation services to maintain efficient throughput
through acute hospital beds.
Additional resources must be provided to expand
the existing specialist rehabilitation facilities to critical
mass, but require the demonstration of co-ordinated service planning
across a regional or supra-district area to ensure that the range
of networked services is offered.
Services should be planned on a hub-and spoke
model with a specialist rehabilitation service as the hub. Hub
units require investment to develop outreach services to share
their skills with community teams, nursing homes and general rehabilitation
wards.
Specialist rehabilitation services sited in
acute hospitals need to be ring-fenced from acute services in
order to function effectively, but they need to demonstrate liaison
with general hospital rehabilitation wards to ensure that those
patients requiring specialist rehabilitation are identified and
referred appropriately.
Collaborative commissioning arrangements must
be in place so that selection of patients for specialist rehabilitation
is on the basis of clinical need and not financial expedience.
Specialist rehabilitation services should be
provided in every district, but should be supported by a smaller
number of complex regional serviceslow volume, high cost
services for individuals with complex rehabilitation needs beyond
the scope of their local and district services.
1. HEAD INJURY
REHABILITATIONHOW
SHOULD IT
BE PROVIDED?
1.1 Definition of brain injury rehabilitation
There are many published definitions of rehabilitation
most of which read along the following lines: "Restoration
of an individual to optimal physical, cognitive, psychological
and social function following injury".
Broadly, rehabilitation offers two main approaches:
Restoration of damaged functionfor
example, getting the patient up on their feet again.
Compensation for lost function, using
a variety of equipment, aids and adaptations.
Rehabilitation is not "just for Christmas"very
often it means life-long support of those who have to live the
rest of their lives with permanent disability. Not only are they
prone to a variety of medical conditions, such as pressure sores,
infections, contractures etc, but in addition, they and their
families need support to cope with the psychological, social and
economic consequences of their disability. Management of chronic
disability and acute rehabilitation require very different skills
and services.
Following head injury, many patients will fortunately
make a good recovery, but sadly not all. At the very severe end
of the spectrum, patients may remain in "persistent vegetative"
or "minimally responsive" states for the rest of their
lives, requiring total care. Those less severely injured may make
a partial recovery returning home, but requiring support to adjust
to and live with their disability and handicap. A very much larger
group suffer apparently minor injury (often not even requiring
hospital admission), but subsequently have high-level cognitive
deficits such as memory and/or attentional problems or altered
personalities, which disrupt their lives and those about them.
Patients who have continued deficits following
head injury thus fall into two main groups:
Those with physical deficitsparalysis,
contractures etcas well as a range of cognitive and communicative
problems.
Those who make a good physical recovery,
but continue to have cognitive and/or behavioural problems with
all the accompanying emotional and psychosocial consequencesthe
so-called "walking wounded".
Clearly these groups require very different
interventions from staff with different skills and training. Some
services can be provided by general therapy departments, others
require highly specialist skills. A range of different rehabilitation
services is required.
Although this document concerns brain injury
primarily resulting from traumatic head injury, those who sustain
head trauma often suffer from other injuries such as fractures,
limb loss, spinal cord injury or burns. Head injury rehabilitation
cannot be considered entirely in isolation. Moreover, rehabilitation
tends to focus on deficits and disabilities, rather than medical
diagnoses. In practice brain injury rehabilitation services often
cover a number of different pathologies including stroke, head
injury, "anoxic" brain injury following cardio-respiratory
arrest, drowning etc, and infection eg meningitis.
1.2 Injury to independencethe changing
face of rehabilitation
Documents considering rehabilitation frequently
ask, "Where should rehab services be provided, in the hospital
or in the community?" Clearly this is the wrong question.
Different patients need different things. Services need to be
provided both in the hospital and in the community. The real question
is 'How do we make sure that individual patients can access the
service that is correct for them?'
Fundamental to understanding rehabilitation
is the awareness not only that different patients need different
types of service, but the same patient needs different things
at different stages in recovery: In development of a strategy,
these distinct aspects of rehabilitation are recognised along
with the need to provide a range of different services to meet
the differing requirements.
1.3 The Slinky Model for provision rehabilitation
services
In rehabilitation terms, these different stages
are illustrated by the Slinky model, which uses the analogy of
a child's "slinky" toy progressing down a staircase
to describe a network of rehabilitation services, supporting the
individual through their recovery. The model is illustrated in
Figure 1.
An essential feature of the slinky model is
excellent communication and flow of information from one stage
to another so that the individual can move down the staircase
in a "seamless continuum of care". If one or more of
the steps is missing, the analogy still holdsthe thing
tumbles down the rest of the way and ends up in a tangled mess
on the floor.
More detailed description of provision in the
different stages of rehabilitation is given below and summarised
in Figure 2.
1.3.1 Acute care
During the acute care stages, the patient may
be critically ill, undergoing surgery or in intensive care. Often
bed-boundmaintenance of optimal function during this time
to avoid complications which later delay recovery is critical:
Features of Rehabilitation in the acute and
early post-acute stage include:
Excellent nursing with attention
to positioning, and management of skin, bowels, bladder etc.
Therapy aimed at reducing impairmenteg
stretching and splinting to avoid contractures, dysphagia management
to avoid chest infections.
Therapy often undertaken by a single
discipline at a time, eg physio, SLT.
1.3.2 Late post-acute and Transition
As the patient improves, and starts to get up
and about, rehabilitation targets basic daily living skills to
regain sufficient physical independence to allow the patient to
return to the community.
Features of Rehabilitation at this transitional
stage include:
Therapy now delivered by a closely
integrated multi-disciplinary teamaimed at increasing independence
and reducing disability.


24-hour rehabilitation nursing care
to carry over skills attained in therapy to everyday practice
on the wardattention to continence, skin care, nutrition,
etc
Patient and family increasingly involved
in goal setting and prioritisation
In-patient care to start, but with
emphasis on discharging planning. Where appropriate there may
be graded dischargevisits or over-night stay at home prior
to discharge
Time scale for this phase depends
on rate of recovery, final outcome expected:
Younger patients with more complex
needs for rehabilitation may require longer in hospital to gain
full independence
For older patients, hospital
is a dangerous placerapid discharge to continued rehab
in the community is preferable.
1.3.3 Community rehabilitation
After discharge to the community, patients require
continued rehabilitation, either as a day or out-patient attending
hospital or in their own homes with domiciliary/outreach services.
Further down the road, may access advice as necessary by self-referral
to drop-in clinics.
Features of Rehabilitation at this community
stage include:
Therapy often delivered by a smaller
teamperhaps two to three disciplines
Aimed at minimising handicap
Goals determined by patient and family
as they increasingly regain control, but easy access to medical
advice is an important part of chronic disability management.
Patients with severe cognitive impairment
may continue to need medical direction throughout their life,
and this may be particularly vital for those with chronic or progressively
disabling pathology.
Despite the recent vogue for community-based
rehabilitation centred in the home, it is now apparent, that where
there are needs for special facilities or input from many disciplines,
rehabilitation may be more appropriately and cost-effectively
provided in the hospital/unit setting on an in- or day-patient
basis.
The site where rehab is delivered therefore
depends on the patient's needs
Hospital basedif they require
special equipment or facilities, or the co-ordinated input of
many disciplines, and can access transport to get to hospital
Home-basedif it is important
that rehab is undertaken in their familiar environment. Rehabilitation
in the third "community" phase must be provided flexibly
in the hospital or home setting as appropriate. The availability
of transport services will determine this flexibility.
1.4 Age-ism and the approach to rehabilitation
Age-ism is to be avoided, but it is important
to recognise that old and young people have different needs and
expectations of outcome and there is therefore a difference in
approach between "care of the elderly rehabilitation"
and "young adult rehabilitation". The cut-off point
at which it is appropriate to provide either of these approaches,
however, is not determined simply by chronological age and should
be a matter for judgement in individual cases.
For elderly patients, hospital is a dangerous
place and rehabilitation towards independent function ability
is often much more appropriately provided in the context of their
own homes. In a Care of the Elderly setting, "rehabilitation"
means getting the patient out of hospital as soon as they can
manage in the community, and continuing rehabilitation there.
Since most are retired, social rehabilitation may be directed
more towards leisure activities than work-related skills.
Young adults have goals beyond simply managing
their basic daily care. They have years ahead in which to reap
the benefits of functioning on a higher level. The long term cost
benefit of achieving goals such as "independent mobility
with an energy-efficient gait pattern" or "return to
work" is worth the initial investment in effective rehabilitation.
Rehabilitation to optimise function, and may require a range of
hi-tech equipment and the skills and facilities of a specialist
serviceone that is lead by a consultant specialist in Rehabilitation
Medicine, usually from a hospital base.
The current focus on "intermediate care"
with emphasis of rehabilitation for the elderly is a step in the
right direction, but must not be confused with the need to provide
specialist rehabilitation services focussed on the needs of young
adults.
1.5 What are "specialist" rehabilitation
services?
A specialist rehabilitation service is one provided
by a multi-disciplinary team which includes a consultant specialist
in Rehabilitation Medicine, trained in managing the rehabilitation
needs of young adults.
"Specialist" rehabilitation is require
at each of the levels described above, although the intensity
of medical supervision by a consultant in rehabilitation is greatest
in the post-acute/transitional stage. In the acute care stage,
care is primarily with the acute medical/surgical team, and at
the other end, many community teams are appropriately led by therapists
with input from a consultant as required.
1.6 What are complex rehabilitation services?
The majority of patients with mild to moderate
injuries will travel satisfactorily down the path from injury
to independence with the help of their local rehab services. A
small minority, however, will have particularly severe or complex
problems and require the services of a "complex specialist
rehabilitation service" to progress (Figure 3). Patient numbers
are fortunately small, but costs are high, making these services
more suitable for collaborative specialist commissioning.
A recent London review of neuro-rehabilitation
services has been set up to define the more super-specialist level
of rehabilitation service which requires specialist collaborative
commissioning by more than one Health Authoritythe contemporaneous
version of the "regional specialist service"low
volume, high cost services for individuals with complex rehabilitation
needs beyond the scope of their local and district services.
In defining complex specialist rehabilitation
services, it is important to state that, although a number of
these services already exist, they can only do so effectively
if supported by a network of services at the other levels, within
each district that they serve. Service must collaborate closely
to provide co-ordinated care. This document will address how this
can be achieved using a "hub and spoke" model.


1.7 Identifying the barriers to the successful
development of rehab services
There are a number of barriers to the successful
development of co-ordinated rehabilitation services, these include
Professional boundaries
Boundaries at many levels conspire to confound
effective development of co-ordinated services.
Bureaucratic and Funding boundaries:
Prevent patient from accessing the service most
appropriate to their needs at any one time.
Split between different providers
The current split of service between the acute
and community trusts leads to disjointed care and poor support
for some of the rehabilitation professionals.
Division of services into Adult and Care of
the Elderly leads to inequality of service.
Provision of specialist services for certain
diagnostic groups can be an efficient way to deliver care, but
provision must be made for patients who do not fit into any of
the specialised categories.
Split between health and social services
Different districts have different arrangements
for sharing the burden of continuing care and rehabilitation between
health and social services. Much time and effort is wasted in
arguing over who is responsible for which part of a single patients
care.
Lack of understanding of exactly what specialist
rehabilitation is
Due to lack of exposure to rehabilitation in
training curricula, most professionals working in other areas
of healthcare have only a hazy idea of what is involved in rehabilitation
practice.
Resources
Resources are tight in the NHS, but are particularly
so in this less-well publicised area of care which fails to compete
with the pressures on the acute services.
Increasing demand
Improved acute care such as helicopter evacuation
from accidents, and medical/surgical advances mean that more patients
survive with severe disability. This trend is likely to continue
and we need to plan for greater demand on rehabilitation services
not only in terms of numbers, but also in terms of greater complexity
and dependency on care.
Lack of suitably trained rehabilitation professionals
Around the country there are a small number
of specialist rehabilitation services providing high quality care
and services, but these are insufficient to cope with the number
of patients requiring them and their expertise is not used to
maximum efficiency.
1.8 Organisation of rehabilitation services
With the current financial pressures on the
NHS, managers face a real crisis in trying to provide quality
services on inadequate funding. It is recognised that the overwhelming
and immediate pressures on the acute services may easily cause
managers to overlook the chronic services. However, it is also
clear that the acute agenda will flounder unless the support services
are in place to avoid acute beds being blocked by avoidable admissions.
The proposals put forward in this strategy therefore aim to provide
rehabilitation in a cost-effective manner, which will move patients
into the community, but with the level of independent function
and support that will keep them there in the long term.
1.9 The Hub and Spoke concept for service
management and provision
We have established that a range of different
service is required. However, the number of patients needing each
service at any one time is too small to provide all types of service
in each district. A collaborative network of services set up across
a region or several districts provides cost-efficient care, but
to ensure that patients can move easily between them collaborative
commissioning arrangements must be in place. A central administration
point for the network can provide efficient contracting and management,
and hence the evolution of the "hub and spoke" model
which is shown to work effectively in the USA and is currently
operating in North-West Thames.
The Hub and Spoke model in this document refers
to a concept, rather than a geographic plan set, and may be interpreted
at various levels. Services are provided around a central hub
or specialist rehab unit. This hub provides a focus for administration,
staff support, training and research (Figure 4). Close working
links are maintained with outlying parts of the service, eg shared
or rotating staff. Peripatetic community teams may keep their
base in the hub unit, and travel out to patients in the community,
or receive them for day-care in the main unit as required.
The advantages of the hub and spoke model are:
1. Decreasing admin/overheads costs by collecting
several different teams together under one roof.
2. Achieving critical mass in terms of staffoptimising
balance of junior to senior staff, to reduce cost of duplicating
senior staff, while maintaining adequate supervision for juniors
in the different teams.
3. Improved recruitment and retentionstaff
feel confident and well supported.
4. Development of clinical expertise as
each team becomes expert in the use of techniques and procedures
relevant to their own field of practice.
5. Sharing of information and continuity
of care between the hospital and community teams by use of common
protocols and pathways.
6. Cost-effective use of facilities, since
services are not duplicated in each district, but smooth referral
paths exist to ensure that each patient has access to the services
they require and the stage when they need it.
1.10 Development of emergency trauma services
So how does this model of rehabilitation service
fit in with acute head injury services?
The current proposal for development of emergency
services for severe trauma in the UK centres upon key hospitals
which are designated as "Major Acute Hospitals" which
can offer the full range of acute trauma and neuro-surgical management.
For example, London would be divided into five sectors, with a
Major Acute Hospital in each.
An essential part of the model involves shifting
patients back out to the more peripheral hospitals as soon as
they are medically fit. Satellite or "step-down" hospitals
will continue the post-acute care, passing the patient on for
transitional rehabilitation as soon as possible, and thence out
into the community (Figure 5). It should be noted that intensive
rehabilitation facilities require the patient to have reached
a certain stage in their recovery. In this model, therefore, they
may be best provided in the "step-down" or District
General Hospital setting, rather than in the Major Acute Hospital
setting.
Adequate provision of rehab beds (both general
and specialist) and outreach services in step-down centres is
an essential component to keep patients moving through and avoid
a backlog which clogs the system. Patients at this stage may still
have need of medical input, investigation, surgical operations
etc, so transitional rehab needs to be sited on acute hospital
sites. However, they should ideally be housed separately from
acute surgical wards, so as to allow sufficient space for equipment
and noise, and avoid the need for isolation for MRSA etc.
The model calls for a change in bed usage within
the acute Trust with:
Use of acute beds and facilities
for patients who need them only.
Movement as soon as possible to rehab
wards emphasising the regaining of independence and proactive
discharge planning.
Development of community outreach
teams based in centres, but working out in the community to take
on continued management of patients as soon as they are ready
to live at home.
Improved transport systems to allow
patients to be managed on a day- or outpatient basis.

2. WHAT IS
NEEDED NOW?
Development of effective and cost-efficient
rehabilitation services urgently requires the investment of suitable
resources, but simply throwing money at it is not the answer.
Services must be developed in a properly co-ordinated manner to
ensure equitable access to high quality care.
The Royal College of Physicians' Blue report
(1) recommended that "core" rehabilitation services
should be provided in every health district, but that for certain
low volume complex conditions (head injury included) services
should be provided in regional units. As a result a number of
regional services were set up across the UK.
Unfortunately, some of those units took a rather
insular approach, providing excellent rehabilitation for those
who could access them, but offering nothing to those who fell
outside their criteria. With devolution of funding to districts
in the 1990s NHS reforms, many health authorities withdrew their
funding from regional units to establish their own local teams.
Sadly this was no more successfulteams foundered through
inability to recruit and retain suitably trained staff. Rehabilitation
services were abandoned and resources immediately sucked back
into the black hole of acute services. Meanwhile regional services
were unable to helplack of funding and bed closures forced
them to function on a fraction of their former capacity.
In North-West Thames, a regional service was
set up in 1992 on rather a different model. The role of the Regional
Rehabilitation Unit was not only to provide not only a high quality
specialist rehabilitation service, but specifically to act as
a central hub and catalyst for the development of local services
across the region. Over the past decade, a close network of co-ordinated
services has developed with the RRU at its centre providing an
interactive outreach advisory service to other services in the
region as well as acting as a focus for health services research
and training of all professional involved in rehabilitation. Details
of this model are given in the Appendix 1.
We believe that this service model represents
a highly efficient use of resources and expertise, and could be
re-iterated elsewhere in the UK. The principles are as follows:
Professional expertise is short,
so the first priority has to be to maximise the use of existing
resources, but in such a way that the service looks outward and
integrates with neighbouring facilities. These may include NHS
or independent services.
Additional resources are provided
to expand the existing specialist rehabilitation facilities to
critical mass, but require the demonstration of co-ordinated service
planning across a regional or supra-district areas to ensure that
a range of networked services is offered. Services should be planned
on a hub-and spoke model with a specialist rehabilitation service
as the hub.
Specialist rehabilitation units require
investment to develop outreach services to share their skills
with community teams, nursing homes and general rehabilitation
wards and provide support for management of patients with complex
rehabilitation needs eg spasticity management, splinting, communication
aids etc.
Specialist rehabilitation services
sited in acute hospitals need to be ring-fenced from acute services
in order to function effectively, but they need to demonstrate
liaison with general hospital rehabilitation wards to ensure that
those patients requiring specialist rehabilitation are identified
and referred appropriately.
Collaborative commissioning arrangements
must be in place so that selection of patients for specialist
rehabilitation is on the basis of clinical need and not financial
expedience.
2.1 Evaluation and effectiveness
There is now good research evidence for the
effectiveness of rehabilitation and evidence for its cost-effectiveness
is also accumulating (2). Further Health Services-based research
is required to explore the critical components of effective intervention
and the means to identify those who have the capacity to gain
benefit from rehabilitation programmes.
In particular, a systematic approach is required
to evaluation of outcome from head injury rehabilitation. This
is mandatory not only to fulfil the requirements of clinical governance,
but to accumulate the knowledge base for what works in routine
clinical practice, as opposed to research.
A variety of validated outcome assessment tools
is now available. No one measure is appropriate for all circumstances,
but the British Society of Rehabilitation Medicine (BSRM) has
developed a "basket" of approved outcome measures which
have proven validity and are already in widespread use in the
UK. Alongside the use of standardised measures runs the need to
tailor rehabilitation programmes to the individual goals of patients
and their families. Thos poses a new challenge to outcome measurement
in the form of goal-attainment scoring and represents a departure
from traditional research techniques.
The diversity of patient characteristics and
rehabilitation approaches further confounds standard research
methodologies may require a rather different approach from those
used in other areas of medical research. Allocation of R&D
monies specifically to research in rehabilitation is urgently
required, both to explore these methodologies and to use them
to strengthen the evidence base and to determine what represents
cost-effective rehabilitation for whom.
2.2 Standards of specialist rehabilitation
services
The British Society of Rehabilitation Medicine
has recently published clinical standards for specialist in-patient
rehabilitation services (3). Standards for out-patient and community
services are also under development.
3. REFERENCES
1. Physical Disability in 1986 and Beyond.
Report of the Royal College of Physicians. London 1986.
2. "The effectiveness of rehabilitation:
a critical evaluation of the evidence." Ed Turner-Stokes,
L. Clinical Rehabilitation 1999 Vol 13 Supplement.
3. Turner-Stokes L, Williams H, Abraham
R. Clinical standards for In-patient rehabilitation Services in
the UK. Clinical Rehabilitation 2000; 14:
APPENDIX 1
Current organisation of specialist rehabilitation
services in North West Thames
Rehabilitation services for all ages must span
hospital and community. Services are provided on both a specialist
and a general level. Figure 6 shows the current provision for
specialist rehabilitation services in the North-West Thames area,
and indicates how the various specialist functions are divided
among the nine rehabilitation consultants in the region. In this
network of specialist services, each falls under the management
of their separate Trusts, however they collaborate and refer patients
from one to another as appropriate.
Regional and Supra-Regional Specialist Rehabilitation
Services
These are summarised in Figure 6.
NORTH WEST
LONDON HOSPITALS
TRUST (NWLHT)
The merger of Northwick Park and Central Middlesex
Hospitals to form The North-West London Hospital Trust makes this
the largest provider of specialist rehabilitation services (both
at district and regional level) in North-West Thames.
The Regional Rehabilitation Unit at Northwick
Park was set-up in 1992 with a brief to provide a regional focus
for research and training for all professionals involved in rehabilitation
and to act as a catalyst for development of specialist district
rehabilitation services across the region. Given this background
and its central geographical position, NWLHT has formed a natural
"hub" for the network of specialist rehabilitation services
around it.
Regional Rehabilitation Unit (RRU): Consultants:
Dr Lynne Turner-Stokes, Dr Kyaw Nyein
The RRU provides a supra-regional in-patient
services for people aged 16-65 with severe complex neuro-disability.
Patients are referred to the RRU from all over the South-East,
often direct from neurosurgical units. The acute medical and surgical
back-up facilities at Northwick Park are essential to its function.
Main diagnoses: Severe stroke, brain injury (traumatic, inflammatory,
hypoxic), partial spinal cord injury.
The RRU provides:
A 26-bed in-patient service.
A tertiary (consultant to consultant)
referral centre for Environmental Control Units (ECU), with a
demonstration centre for Electro-Assistive Technology (EAT).
An out-reach service which includes:
An advisory service for management
and follow-up of patients with severe complex brain injury in
North West Thames.
A regional spasticity management
service for botulinum toxic/splinting/specialist orthotics.
Inter-disciplinary home-based
rehabilitation for patients with complex brain injury in transition
between hospital and home.
The RRU also acts as a re1ional focus for research
and training for all profession involved in rehabilitation.

Disablement Services Centre (DSC). Dr Linda Marks,
Dr Rajiv Hanspal
The DSC provides
a regional service in indoor/outdoor electric
wheelchairs, special seating and supra-district and regional services
in prosthetics/amputee rehabilitation.
For historical reasons the DSC is currently
located off-site from NWLHT and is dislocated from the rest of
the regional service. A bid has been submitted to relocate in
at Northwick Park, which is essential for proper co-ordination
of services.
ROYAL NATIONAL
ORTHOPAEDIC HOSPITAL
Spinal Injury UnitDr Fred Middleton
A supra-regional service for acute and ongoing
management of spinal cord injuries.
Pain ManagementDr Joseph Cowan, Dr Fred
Middleton
Integrated team providing cognitive behavioural
rehabilitation for patients with chronic pain. Also a specialist
service for diagnosis and management of brachial plexus injuries.
EDGWARE COMMUNITY
HOSPITAL
Brain Injury Rehabilitation Unit (BIRU)Dr
Simon Fleminger
A regional service for management of diffuse
brain injurythe walking wounded patient with cognitive
and behavioural problems, but without major physical deficits.
Patients referred here from the RRU when their physical impairments
have largely resolved, but they require ongoing cognitive rehabilitation.
Likewise, BIRU passes patients to the RRU who have physical deficits
that they cannot handle.
HILLINGDON HOSPITAL
Electronic Assistive Technology (EAT) serviceDr
Rajiv Hanspal
Regional centre for co-ordination of environmental
control units and electronic assistive technology (EAT) in North
West Thames.
ROYAL HOSPITAL
FOR NEURO-DISABILITY,
PUTNEY
Not sited in North West Thames, the Royal Hospital
is an independent provider which forms an important part of the
network of rehabilitation services provided in North West Thames.
In particular, the following services fill gaps in NW Thames provision.
PVS unitfor management of people in vegetative
or minimally responsive states
Behavioural unitfor brain injured patients
with severe behavioural problems
Transitional unitfor patients in the
South end of the region who require more time and monitoring to
make the transition to living in the community
DISTRICT AND SUPRA-DISTRICT SERVICES: IN-PATIENT
SPECIALIST REHAB SERVICES
HILLINGDON HOSPITAL
Alderbourne Rehabilitation UnitDr Rajiv
Hanspal
A supra-district service16 bedded in-patient
unit and outpatient facilities, providing district-based rehabilitation
for patients with stoke, MS etc. Also takes on slower-stream patients
referred from the RRU.
Four additional beds for PVS/minimally responsive
patients.
WILLESDEN COMMUNITY
HOSPITAL
Younger Disabled UnitDr Kyra Williams
A supra-district service for Brent and Harrow
providing in-patient slow-stream rehab for patients with chronic
disability and progressive disorders (16 beds).
The unit provides a region-wide service for
phenol blockade for the management of severe lower limb spasticity
in end-stage MS and similar conditions.
DISTRICT AND SUPRA-DISTRICT COMMUNITY/OUT-PATIENT
SPECIALIST SERVICES
NORTH WEST
LONDON HOSPITALS
TRUST
Harrow Physical Disability Support TeamDr
Andrew Frank
A multi-disciplinary community team with base
office at Northwick Park, provides home-based support for young
patients with physical and complex disabilities in Harrow.
WILLESDEN COMMUNITY
HOSPITAL
Independent Living TeamDr Kyra Williams
Independent Living Team, based at WCH, acts
as a community outreach team facilitating discharges and smoothing
community re-integration for patients living in the Brent area.
Links with local rehabilitation services
Figures 7 and 8 respectively show how these
services inter-relate with the RRU to provide out-patient and
community rehabilitation and continuing care/maintenance rehabilitation
for patients with very severe disability or in minimally responsive
states.
Specialist services are highlighted in bold.


OVERALL ASSESSMENT
OF PROVISION
In general, North West Thames fields a good
range of rehabilitation spanning from hospital to community. There
is good net-working between regionally provided and more locally-based
services with smooth links for referral and timely funding arrangements.
There are however some notable gaps, and some areas where some
re-arrangement is required for maximum benefit and efficiency.
GAPS
Vocational rehabilitation
There is no dedicated service for vocational
rehabilitation in North West Thames. Selected patients are referred
to Papworth, Cambridgeshire (low level) or to Rehab UK (higher
level) but these services can take on only a small minority.
Sufficient beds for severe complex disability
Although the RRU nominally has 26 beds for severe
complex disability, progressive cuts in funding have impacted
on the nursing team leading to bed closures. For most of 1999-2000,
the unit has operated on 22 beds, with a stratified waiting list
to match case-mix to staff availability. Other units in London
have tended to do the same, with the result that the waiting list
for the most heavily dependent patients has gone up.
Since these patients cannot be managed in the
community, they lie neglected in side-rooms on acute hospital
wards acquiring contractures, pressure sores, malnutrition, and
other sequelae of neglect which add months to their rehabilitation
length of stay when they eventually get there, and often have
major long term consequences for dependency and continuing care
needsnot to say quality of life.
The RRU is uniquely placed to take on these
difficult cases. Based in a DGH it has the acute medical back-up,
the facilities and the staff expertise to cope with the demands
of this group. A bid is currently in with the purchasing consortium
to increase the proportion of high-dependency beds from four-five
to eight-nine, to cater with the increased load on the waiting
list.
Isolation of the DSC
The regional Special Seating and EPIOC services
are already identified for collaborative commissioning. They are
managed by NWLHT are currently located off site. The physical
isolation and poor transport facilities of this site hit particularly
hard at this group of patients who, by definition, have limited
mobility. The level of inaccessibility is no longer permissible
under the Disability Act. A bid is underway to move the DSC to
Northwick Park, which would improve not only collaborative working
between the services, but would also lead to long-term efficiency
savings.
Training and research
The RRU has been a designated central focus
for research and training of all disciplines involved in rehabilitation
since its inception in 1992. The widespread, co-ordinated rehab
services in North West Thames makes this an ideal ground for health
service research in rehabilitation. Explorations are underway
to develop appropriate affiliation and formalised academic links.
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