APPENDIX 23
Memorandum by UKABIF (H 51)
BACKGROUND
1. This evidence examines the needs of people
with severe forms of acquired brain injury who have complex disabilities.
They are an important group because they will not spontaneously
improve and their long-term costs to the country are large because
of the high level of continuing professional support they require.
2. Chronic and complex acquired brain injury
in young adults has a major impact on the individual, their families
and society yet they attract little attention in the provision
of services.
3. Whilst this young disabled group does
not fall into the stated top priority for NHS provision, there
is a considerable recognition from the Government on providing
high levels of care for people with complex and chronic disabilities.
4. Modernising Health and Social Services:
National Priorities Guidance 1999/00-2000/01 states: "Two
key objectives are to: treat people with illness, disease or injury
quickly, effectively and on the basis of need alone; and to enable
people who are unable to perform essential activities of daily
living, including those with chronic illness, disability or terminal
illness, to live as full and normal lives as possible."
5. There is considerable emphasis on partnership
between the Health and Social Service Departments as seen in The
New NHS: Modern and Dependable, Modernising Social Services and
the setting up of Joint Investment Plans. However, lack of communication
and collaboration between the health, social, housing, educational
and vocational services is a common complaint of patients, families
and disability support groups.
6. Considerable emphasis is placed on quality
and evidence based practice as seen in A First Class Service and
the setting up of the National Institute for Clinical Excellence
(NICE), Health Improvement Programmes (HimPs) and the development
of National Service Frameworks (NSFs). However, there is little,
if any, consideration given in planning for people with chronic
and complex disabilities.
7. Whilst chronic and complex disabilities
do not involve a very large number of people, they meet the criteria
for setting up a NSF having a very significant effect on morbidity,
disability and resource use. There is considerable concern that
the services are not being provided and the care pathways are
complex (involving health, social services, education, employment
and housing).
THE CONCEPT
OF "COMPLEX"
DISABILITIES
8. The term "complex" covers the
combination of a number of clinical features (such as medical,
physical, cognitive, psychological, behavioural, social and effects
on family, education and vocation), each of which require specialist
knowledge yet require effective inter-disciplinary team work.
9. Complex disabilities due to acquired
brain damage involve a combination of impairment, disability and
handicap.
10. The complexities of these disorders
require a wide range of professionals in the multidisciplinary
team and skill in setting priorities of care.
11. The more complex the disorder the more
likely it is that long-term residential care will be required
or considerable resources invested in home care.
SIZE OF
THE PROBLEM
AND REQUIREMENTS
12. The annual incidence of severe brain
injury is about 8/100,000 population.
13. The prevalence of severe brain injury
is about 100-150/100,000 population.
14. General Practitioners will rarely see
a patient with severe disability due to acquired brain injury—an
average General Practitioner will see one severely disabled person
with head injury every ten years—and possibly never see
a patient with the Vegetative State or behavioural problems. Therefore,
the ability to develop expertise in the commissioning of services
for this group is extremely limited.
15. 20-25 per cent of those 16-45 years
of age with brain damage remained severely or profoundly disabled
six months following their injury.
16. The hospital care of severely disabled
brain injured people is frequently carried out in the independent
(private and voluntary) sector.
17. Health Authorities rarely have figures
about the number of people with severe acquired brain damage and
often underestimate the size of the problem.
18. A large proportion of patients with
severe brain damage are managed at home even though the complexity
of the conditions was often difficult to manage, even in hospitals.
19. Considerable difficulties occur in placing
people with severe and complicated brain damage. As many as 70
per cent of those patients in the vegetative state and about 20
per cent of those in the other groups of severely brain damaged
were still in hospital 18 months after the onset of the brain
damage—and over 59 per cent of all groups were still in
hospital at eight months following the brain damage.
CONCEPTS OF
"DISABLEMENT"
20. There are several basic patterns of
disability including recovery, partial recovery, static and deterioration.
Each pattern requires a different approach to management with
goal setting and measurement of outcome being different for each
pattern.
21. In the acute and "medical"
phase "disease" (the pathological process) and "impairment"
(clinical features of damage to an organ or part of the body)
take a predominant role; in the rehabilitation phase "disability/activity"
(the restriction or limitation of function) is more important;
whereas in the chronic and community phases "handicap/participation"
have greater emphasis. These are, however, interlinked and overlapping
concepts, which are important for management at all stages of
the process.
ORGANISATION OF
SERVICES
22. The rarity of many complex disabling
disorders prevents local units developing the necessary experience
and skills to provide optimal management of these patients. Not
all rehabilitation units have access to the full range of professionals.
It would not be economic to develop all skills and services in
each district for such a small group of patients.
23. The organisation of services for people
with disabilities fall into several categories including the acute
phase emphasising on medical and surgical input, the stage for
those making significant "recovery" but still having
some problems; those remaining "moderately" disabled,
and those with chronic, complex and severe disability.
24. There are difficulties in providing
an integrated (seamless) service. The difficulties of this have
been emphasised in the Report by the Royal College of Surgeons
on the Management of Patients with Head Injuries. They recommended
that head injured patients should be managed by a neuroscience
unit and that each neuroscience unit, together with the host trust
and purchasers, should ensure that: there were adequate referral
systems in place; local A&E departments should work with agreed
protocols on initial assessment; and that there should be appropriate
protocols available for transfers.
25. The Royal College of Surgeons Report's
recommendations, which have particular reference to those severely
head-injured patients were that:
(a) Those with severe head injury of focal
signs should be transferred to a neuroscience unit irrespective
of whether they need surgical intervention.
(b) Those needing ventilation and/or intra-cranial
pressure monitoring should be admitted to an ICU with on-site
neurosurgeons and neuroanaesthetists.
(c) Neurosurgeons should be contactable at
all times.
(d) Neuroscience units should not be located
on isolated sites.
(e) Neurosurgeons should work within a multi-disciplinary
neuroscience unit that has an ICU with trauma beds and neuroanaesthetists.
(f) These units should be based on major
acute sites and should have input from neurosurgeons, neurologists,
neuroanaesthetists, neuroradiologists and specialists in rehabilitation
medicine.
26. The Royal College of Surgeons Report
states "Patients with intermediate and severe head injuries
wait in acute hospital beds which delays their treatment, makes
subsequent treatment more difficult and protracted, and probably
adversely affects the outcome." The Report goes on to say
"Patients needing neurorehabilitation require the expertise
of trained rehabilitationists working in an adequately resourced
multidisciplinary rehabilitation unit. All rehabilitationists
who are involved in the management of head injuries should be
adequately trained in head injury rehabilitation as part of their
training programme."
REHABILITATION
27. Wade has pointed out that "rehabilitation
is not synonymous with therapy or treatment. Instead it is an
approach to problems, a process which happens to include "therapy"
but also includes prescription of drugs, provision of aids and
equipment and counselling among other interventions".
28. "Rehabilitation" is a complex
process involving a broad range of concepts. It does not fit comfortably
into a purely clinical discipline, involving, as it does, a broad
range of clinical, social, vocational, educational and philosophical
concepts. Bringing these together into an integrated service is
a challenge for communication between health, social services,
education, employment service providers and the voluntary sector.
It is a common complaint of patients, families and their representative
organisations that there is a lack of leadership and acceptance
of responsibility for bringing these services together.
29. The term "disability management"
has been used to cover the process of preventing deterioration,
managing complex long-term disabilities and rehabilitation of
patients with conditions which are slow to recover.
30. The nature of rehabilitation requires
the organisation of multi-disciplinary teams that work with disabled
people and their families. In addition, the co-ordination of hospital
rehabilitation and community services involves a range of social
services, housing departments, employment agencies and voluntary
organisations.
31. There is a need to develop a system
that enables this collaboration to be made in an efficient, cost-effective
way. Case Management or Co-ordination of services needs further
development. The concept of case managers with experience of the
needs of people with complex disabilities and the services available
throughout the health, social and voluntary services has had an
important impact in ensuring disabled people are able to find
a way through the complex network of services.
DIFFICULTIES OF
RESEARCH IN
REHABILITATION
32. Evidence based practice is a fundamental
part of clinical management with commissioning of services being
largely dependent on the evidence that a particular form of treatment
is effective.
33. The complexity of disabilities due to
acquired brain injury; the multidisciplinary interventions and
the educational model of rehabilitation make rehabilitation research
particularly difficult.
34. Fleminger in a systematic review of
rehabilitation for head injury found that "there was an almost
complete absence of randomised controlled trials." He concluded
that "the evidence base on which to determine practice guidelines
for rehabilitation following brain injury is very limited. This
partly reflects the difficulty in setting up studies in this field,
but perhaps also reflects the general lack of investment in rehabilitation.
There is evidence that rehabilitation works, but the quality of
that evidence is poor."
35. Wade also reviewed the literature and
concluded "The evidence that rehabilitation works is strongest
at the two ends of the spectrum: for individual patients and for
large heterogeneous groups of patients. It is weakest when focussing
on specific components of the process. Most studies have taken
reduction in dependence to be the measure of success and none
have investigated the effect upon handicap or distress."
36. There has been almost no research into
the problems of those with more chronic disorders. It is therefore
difficult to provide the evidence based practice required by modern
health planning. There needs to be a regional centre to develop
and coordinate multi centre research in this field.
PROVISION OF
LONG TERM
CARE FOR
PEOPLE AGED
16-65 WITH COMPLEX
DISABILITIES DUE
TO ACQUIRED
BRAIN INJURY
37. Complex disabilities cannot be seen
purely in terms of health care since the long term needs require
a combination of health, social services and housing requirements—and
for those with good cognitive function, the inclusion of vocational
and educational training.
38. Chronic complex disabilities often result
in a dispute between the health and social services departments
as to who should (and usually who should not) accept responsibility
for funding services for chronically disabled people. The level
of communication between the groups varies widely between different
authorities and therefore the level of care differs depending
on postcode.
39. There are no Joint Investment Plans
(except for return to work) planned for the management of people
with complex disabilities, and therefore there is a great risk
of this group falling through the net of joint planning between
health and social services.
40. People under 65 years of age with physical
or sensory disabilities requiring residential care were 3.5 per
cent of the total number of people supported by local authorities
in care in 1998.
41. Whilst there has been a dramatic increase
in the total number (ie all age groups) of people in care, there
has been little change in the number of young people with physical
or sensory disabilities.
42. The independent (private and voluntary)
sector now accounts for 87 per cent of the care of people with
physical or sensory disabilities.
43. The control of standards are not only
a matter for the statutory services but there needs to be clear
standards, associated with training and support for the private
and voluntary services providing care for such vulnerable people
with complex disabilities.
CONCLUSIONS
1. The effects of severe acquired brain
injury are usually complex and often chronic.
2. The variety and rarity of the presentations
of acquired brain injury create additional problems in assessment
and providing the availability of skills.
3. Many Health Authorities do not have figures
about the number of people who have acquired brain injury and
are unable to identify where patients with various special needs
are treated or cared for in the long term.
4. This group are not included in any of
the priorities for health service commissioning and joint investment
plans.
5. The complex forms of disability are relatively
uncommon which has significant implications for the commissioning
and provision of services. This is seen particularly in terms
of primary care group/trust commissioning.
6. The needs of this group fall across health,
social services, housing and the voluntary service boundaries.
7. There are difficulties in co-ordinating
the services for people with complex disabilities because of the
rarities of the conditions and the multi-agency care needs.
8. The rarity of the conditions makes it
difficult to develop experience and expertise at a local level.
9. The long-term needs of people with complex
disabilities are often seen in social terms although there is
an ongoing clinical need for many in this group.
10. There is a lack of specialist centres
for the management and planning of services for people with complex
disabilities.
RECOMMENDATIONS
1. Regional health authorities should have
a register of people with acquired brain injury and have data
on the care pathway to ensure that none slip through the complex
net of health, social services, and vocational and educational
needs.
2. In view of the rarity and specialist
nature of complex disability, the commissioning of services should
be the responsibility of a regional or sub-regional authority.
3. There should be a formal regional policy
on the role and functions of each of these levels of services
and care pathways should be clearly defined.
4. There should be an integrated approach
to rehabilitation and disability management services in the region
to avoid unnecessary duplication of scarce resources and skills,
to encourage the development of special centres to manage specific
unmet needs and to decrease the tendency to postcode provision
of services.
5. There should be a regionally based policy
on research and development into complex disabilities with specific
areas identified and multi-centre research set up.
6. A mechanism should be set in place for
the training, advice and support of staff caring for people with
complex disabilities in their local communities.
7. There should be a formal regional policy
between health and social services on funding responsibility and
co-ordination of services for people with complex disabilities.
A joint investment plan for complex disabilities is a suggested
mechanism for this.
8. It is recommended that a number of co-ordinators
be appointed to work across health and social services to help
plan and co-ordinate the services for people with complex disabilities.
February 2001
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