APPENDIX 6
Memorandum by Mr Norman Keen (H18)
SUMMARY
A very significant number of people who have
survived a moderate-to-severe brain injury have no major physical
disability. They, however, have complex cognitive, behavioural
and emotional difficulties, and often little awareness or insight
into their situation. They largely go unrecognised by professionals
and the public at large. A majority are young men, with normal
life expectancy. They tend to drift aimlessly through life. They
remain on benefits and often get into trouble with the law. They
are very much at risk. The quality of their life is very low.
The burden on their families is immense. They represent a significant
cost to society. Much of this could be avoided with appropriate
interventions at the right time.
The specialist rehabilitation and knowledgeable
follow-up in the community, needed to help such people lead meaningful
lives, are generally not available. Headway groups and branches
are often left to try to fill this gap. Attention was drawn to
this state of affairs by the Social Services Inspectorate in 1996,
but very little seems to have changed. Their report should be
re-visited.
A number of measures need to be put in place
as part of an integrated programme to ensure that people who have
survived a brain injury, and their relatives and carers, receive
services appropriate to their needs:
— Training and education of healthcare
and social service professionals regarding the needs of people
after an acquired brain injury must be a high priority.
— An overall care plan—including
rehabilitation on an ongoing basis—should be formulated
for each brain injured person before discharge from the acute
hosptial.
— Further inpatient brain injury rehabilitation
units should be established across the country to provide immediate
post-acute rehabilitation.
— More units providing later-stage
rehabilitation—on a day basis—should be set up, including
centres providing holistic, intensive neuropsychological rehabilitation.
— Knowledeable follow-up services in
the community are essential if rehabilitative gains are to be
sustained. A "critical mass" of such people needs to
be established as soon as possible.
— As an interim measure, consideration
should be given to encouraging trained professionals from abroad
to work in this country.
— Help and training should be given
to brain-injured people to undertake work or other productive
activity, and to live as independently as possible.
— Recognition and the necessary support,
including respite, should be given to their relatives and carers.
— Each brain injured person living
in the community should have support from a knowledgeable case
manager. This is a specialism which needs to be developed within
Local Authority social services.
— Consideration should also be given
to part-funding of the rehabilitation needed through a no-fault
compensation scheme operated in conjunction with the motor insurance
industry.
— We are a very long way from a "seamless
service" at present. There should be inter-agency collaboration,
including the voluntary sector, covering health, social services,
social security, employment, education and housing. Consideration
should be given to a task force, in each area, to co-ordinate
matters.
1. BACKGROUND
I am a carer, together with my wife (Lilian),
of our son David, now 34—who was knocked down as a pedestrian
eight years ago and suffered a severe head injury. He is generally
physically able, but has been left with higher-level cognitive,
emotional and behavioural problems, and has not worked for any
sustained period since then. I took early retirement in 1993,
six months after my son's accident. My wife and I have been effectively
David's case managers since then, and have sought to find the
most appropriate help for him. This continues to this day.
This has led to a particular interest in the
efficacy of holistic neuropsychological rehabilitation, in particular
where there is limited "insight" or awareness of their
problems on the part of the brain-injured person.
I am actively involved in a range of Headway
matters: a founder member of East London Headway, which has established
the first Headway House day centre in inner London; member of
the recently formed London Region Committee of Headway, which
is working with Headway central office to strengthen and expand
Headway services in the capital; and member of Headway Groups
and Membership Committee. Member of the United Kingdom Acquired
Brain Injury Forum (UKABIF), the Society for Cognitive Rehabilitation
and the European Brain Injury Society (EBIS).
2. SCOPE OF
COMMENTS AND
TARGET GROUP.
2.1 My comments relate to people who have
had a moderate-to-severe (and in some cases, a so-called "mild")
brain injury. I comment particularly on the situation in London.
2.2 Such an injury can happen to anyone
at any time. Such people typically have complex cognitive, behavioural
and emotional difficulties which remain even two years after the
injury and in many cases for the rest of their lives. They will
also, in many cases, have little awareness or insight into the
nature of these difficulties, and how it is affecting their daily
lives. They often have no major physical disabilities. Each case
will be different; no two brain injuries will be the same and
each survivor was a unique person before their injury.
2.3 There is a relatively high proportion
of such people in the brain-injured community, who generally go
unrecognised—both by professionals, who are there to help
them, and by the general public—since they "present"
well. They only generally get attention when it becomes apparent
that they are a danger to themselves and to others. They are what
we refer to as the "walking wounded". There is a high
proportion of young people in their 20s/30s (mainly young men)
with normal life expectancy.
2.4 There is generally no separate category
in Community Care Plans/Health Improvement Programmes (HIMPs),
and they are usually included, if at all, under Physical or Sensory
Disabilities. Sometimes they are treated as if they had mental-health
problems or learning difficulties. Their actual needs tend to
get overlooked or ignored. The situation regarding HIMPs—and
reference to acquired brain injury—is particularly bad in
London.
2.5 A Social Services Inspectorate appraisal
published in 1996 very well describes the plight of brain injured
people and their families. A very useful summary document—which
highlights many of the main issues involved—accompanied
the report, and is enclosed as Appendix A.[1]
Very little of real significance seems to have changed since 1996.
The SSI report should be re-visited.
2.6 Such people tend to drift aimlessly
through life, without any real direction or purpose. They remain
on some sort of benefits and often get into trouble with the law.
In London, many are single and live alone. They are very much
at physical and emotional risk. The quality of their life is very
low. They are a significant (and, will in time become a greater)
cost to society. Much of this could be avoided with appropriate
interventions at the right time.
2.7 Such interventions would improve their
lives immeasurably, the cost of which would be justified by their
increased quality of life and that of their family and the social
costs saved. They need help from professionals who have knowledge
and experience of working with people with such difficulties.
Such help takes the form of care, advice and advocacy, rehabilitation
of a formal and community-based kind, and overall case management.
2.8 It has to be recognised that, although
the most obvious and rapid improvements take place in about the
first two years, significant improvement can occur over many years.
However, there will generally be residual deficits which will
remain with the person for the rest of their life and with which
they will need ongoing help.
2.9 Having a person with a head injury in
the family places a great burden and stress on the close family
members, whose lives are changed for ever. They—suddenly—have
a different person in their midst, who looks the same, but behaves
quite differently and is unaware of what has happened to them.
It is in some respects like having lost an adult son or daughter,
or a partner, and gained an argumentative child in the family.
But they are not a child. The family will need support, and education
on how the head injury has affected their relative, and how best
to cope with the situation. They will need guidance on sources
of informed help and advice. They may also need counselling and
respite services. Their stress levels will tend to increase with
time.
2.10 Many carers are middle-aged parents
of young men—and often also act as their case managers.
They cope in this way often with very little recognition, or assistance,
from social services. They will only be able to do so for a limited
number of years into the future, and need help to put an alternative,
and effective, support system in place while they are still young
and fit enough to guide the process.
2.11 Relatives—partners, parents,
siblings—should be encouraged to be involved in rehabilitation
activities, since they are an "expert" on their brain-injured
relative.
3. HELP AVAILABLE?
3.1 There is, unfortunately, a widespread
lack of understanding among the general medical community (including
GPs) and other professionals (community therapists and social
workers) on the relatively subtle and complex, but profound, effects
of (even a mild) brain injury on the person concerned and their
family and carers. This is to some extent understandable, but
what has been particularly regrettable has been the refusal on
the part of such professionals—with, as always, notable
exceptions—to admit that they don't have the required knowledge
and be willing to find out from those who do. Where services are
provided, they are often inappropriate. A recent publication describes
the situation very well, and explores reasons why people tend
to hold particular beliefs in respect of brain injury.
Thankfully, this state-of-affairs is now—albeit
slowly—changing for the better. But that still means that
currently, after a brain injury, most people and their families
are left very much to their own devices as far as getting the
right sort of help is concerned. This is a gap which Headway is
increasingly trying to plug.
3.2 The same lack of understanding exists
to an even greater extent in the benefits system. Those responsible
for legislation and guidelines regarding disability benefits—and
their medical advisers—often seem unaware of the effects
of an acquired brain injury on the person and the family. The
same applies generally also to disability advice services. The
eligibility criteria for Disability Living Allowance and Incapacity
Benefit/Severe Disablement Allowance take insufficient account
of the complex cognitive and other difficulties which affect the
person's capacity to function without help.
These benefits are often only agreed at the
appropriate level where there is a knowledgeable advocate who
can interpret and explain the situation to the adjudication staff
who decide such matters. Brain injured people have often been
subjected—inappropriately—to the All work Test
which, perversely, is designed to measure what they are generally
capable of, but expressly ignores the sorts of things they are
incapable of. They are then deemed to be "capable of work".
This all puts an added strain on the person and their family,
when they are trying to cope with their changed circumstances.
The operation of the benefits system in respect of brain injured
people needs to be thoroughly reviewed.
3.3 Specialist facilities and expertise
for people who have survived a brain injury are very thin on the
ground.
3.4 An overall care plan should be formulated
before discharge from hospital—to include rehabilitation
on an ongoing basis, from inpatient through to community rehabilitation.
Sadly, this is very much the exception.
3.5 At the early stage (up to about the
first 12 months) residential rehabilitation is usually most appropriate.
In the London area, there are a small number of excellent inpatient
rehabilitation centres organised on a regional basis, which, because
of their paucity, are often located some considerable distance
from where the patients and their families live. All have waiting
lists and are necessarily resource—and time-limited. Some
may be able to provide a limited amount of outreach support.
Immediately following such rehabilitation—if
available—there is usually no specialist follow-up in the
statutory sector—unless the person is referred to a Headway
House day centre. Very often the person and their family get the
impression that everything will now be alright. Sometimes the
person returns, or tries to return, to their old job, often with
disastrous results.
3.6 Some time later, there will be an emerging
realisation—at least on the part of the relatives—that
some aspects of the person's life may have changed for good. What
is then needed is broadly based rehabilitation of a more-holistic
kind, carried out over an extended period on a day-client basis.
This would be based on a social/educational model and would include
a strong vocational element (see section 5 for a fuller description
of this approach).
There is no centre in the London area which
can provide a full service of this kind, although there are units
which address some of these aspects very well. These include the
Brain Injury Rehabilitation Unit (BIRU) at Edgware Community Hospital
and the Wolfson Neuro-Rehabilitation Centre in Wimbledon—which
both operate on initial inpatient basis—and the Rehab UK
Brain Injury Vocational Centre in south-east London which takes
clients on a day basis. Otherwise, there are a number of well-regarded
units outside London—for example, the Oliver Zangwill Centre
in Ely and Bedgrove Community Head Injury Service in Aylesbury—to
which people from the London area have been referred as day clients
(they, in most cases, have to find accommodation in the area).
Rehabilitation units of these kinds are needed in the London area.
3.7 An important issue of the journal Neuropsychological
Rehabilitation in 1999 (relating to outcome measures in brain
injury rehabilitation) included contributions from some of the
most active rehabilitation centres in the United Kingdom3.
3.8 There may also need to be help with
(semi-)independent living through: training in a transitional
living unit; and/or help in their own homes from a specialist
outreach team (either associated with a rehabilitation unit or
involving trained therapists/social workers in the community).
3.9 It must be stressed that the majority
of people who survive a brain injury, and their families, get
no or very little specialist help or support at the present time.
And even those that do, tend not to get the essential, ongoing
community-based help that they need to lead meaningful lives (see
6).
4. RESOURCES
4.1 There is, undeniably, a resource problem—too
few specialist units, and nothing like enough staff trained to
work with brain-injured people—neuro-psychologists and -psychiatrists,
occupational therapists, speech and language therapists, and physiotherapists.
4.2 It is imperative that steps are taken
over time, to remedy this resource problem, and this can only
be done by using the existing centres of expertise to "grow"
new rehabilitation units (through training, secondments, etc)—closer
to where people live—and to train community therapists and
social workers, so that follow-up support can be provided in the
community. We need to reach the stage where a "critical mass"
of resources and expertise is built up in each area, so that the
support systems needed by brain-injured people and their relatives
and carers are self-sustaining. Without that, any initial flurry
of activity is unlikely to have a lasting effect.
4.3 It is suggested that—as a short
term measure—consideration might be given to encouraging
trained professionals, with experience of brain injury rehabilitation,
from abroad, for example, Australia, to work in rehabilitation
units and in the community in England.
4.4 It must be recognised that working with
people who have had a brain injury can be very demanding and emotionally
draining of staff. Thus they have to be well supported within
their units, if they are not to "burn out" and leave
for less-stressful working environments.
4.5 There is also a need to develop our
rehabilitation programmes further, learning in particular from
best practice in the USA and Australia and in other European countries
(for example Denmark and Italy). These countries are ahead of
England (and the rest of the United Kingdom) both in terms of
certain rehabilitation strategies (eg, use of psychotherapy to
treat depression and loss of self-esteem) and of the emphasis
given by national or state governments to brain-injury rehabilitation.
4.6 The US National Institutes of Health
held a Consensus Development Conference in 1998 on "Rehabilitation
of Persons with Traumatic Brain Injury". The press-release
is given as Appendix B.[2]
This kind of approach could be useful in the follow-up to the
Health Committee's initial findings.
4.7 As with any new client group, resources
are a prime concern. It is suggested that consideration be given
to whether, in addition to statutory funding, additional monies
could be gathered and earmarked for rehabilitation purpose through
a no-fault compensation scheme operated in conjunction with the
motor insurance industry, as is done in certain parts of Australia
and Canada.
5. SPECIALIST
NEUROPSYCHOLOGICAL REHABILITATION
5.1 At the later, post-acute stage—probably
after at least one to two years—when it becomes apparent
that, without the right sort of help and support, the person is
unlikely to be able to return to any sort of employment or productive
activity, or to live at least semi-independently in the community—specialist
rehabilitation is needed.
5.2 The overall aim of the rehabilitation
should be to help the person to adapt and come to terms with their
new self, and through realistic goals and aspirations to achieve
peace of mind in their new life situation. They should be helped
to operate in the real world at the maximum level of which they
are capable. And be provided with whatever ongoing support (in
the community) is necessary to maintain that level of operation.
5.3 This sort of rehabilitation needs to
be carried out on an individualised and holistic basis—taking
into account all aspects of the person's life.
5.4 A particular aim should be to help the
person gain some insight or awareness into the person they are
now—including their strengths and weaknesses—and to
provide help and encouragement with using their intact skills
to develop (and "overlearn") compensatory strategies
for things they now find difficult, eg, planning and organisation,
problem solving, interpersonal relationships, etc. This should
stand them in good stead when operating in the real world (but
will need "refreshing" from time to time).
5.5 As most of the people concerned will
be in their 20s or early 30s, with a normal life expectancy, it
is important that they get help to return to some sort of realistic,
productive activity—which they find satisfying. This means,
among other things, informing and educating employment service
staff and employers about the nature of brain injury and its effects
so that, with the right kind of help and support, many more brain-injured
people can become valued participants in the workplace. It is
their right under the Disability Discrimination Act, but at the
present time very difficult to achieve.
5.6 There is now a considerable body of
(mainly) empirical evidence across the world that holistic neuropsychological
rehabilitation, carried out on an intensive basis, can be effective
in helping many people return to a meaningful life after a serious
brain injury. For such people, this may be the only way they can
be helped to obtain any real meaning in their lives.
5.7 Such rehabilitation is carried out in
a specialist centre, involving an interdisciplinary team of neuropsychologists,
speech and occupational therapists, etc, within a "therapeutic
community". The brain-injured person attends, say, four days
a week as a day patient. Involvement of a close relative or "significant
other" is an important part of the process. Programmes typically
last from four to six months, but some people will need longer.
Such centres will employ a variety of strategies to improve motivation,
self-awareness, and cognitive competence, for example, extensive
use of video techniques in a group setting; 1:1 counselling, including
psychotherapy; practising new strategies for problem-solving,
effective oral communication, and control of disinhibition and
impulsiveness; and demonstrating the need to accept "coaching"
and guidance from others when learning new skills.
5.8 It is felt that to achieve the attainment
of an optimal rehabilitation of the brain injured person, it is
essential to co-ordinate and integrate the cognitive remedial
training—ie, all those interventions that are aimed at making
it possible for the person to compensate for specific intellectual
and behavioural impairments due to the brain injury—with
the other clinical interventions, eg, helping the person accept
his/her predicament; restoring a sense of hope; motivating and
improving morale; teaching the person ways of adjusting to his/her
misfortune and to exercise appropriate social judgement, etc.
It is recognised by all the major proponents
of this approach that, following completion of such a programme,
there should be continuity in follow-up in the community.
Appendix 3 gives an overview of the general
characteristics of such types of programme.
5.9 Specialist rehabilitation centres, which
work in this inclusive and intensive way, are rare and more are
needed across the country.
It is suggested that steps be taken to establish
further centres, making use of expertise in existing centres in
this country and abroad for purposes of training and exchange
of experience and personnel, and that there is participation in
any international multi-centre research projects to further establish
the efficacy of this approach.
5.10 Critics of this proposal will point
to the high cost of such rehabilitation programmes per person,
and that less-intensive programmes would help more people for
the same cost. For many people, however, this may be the only
way of helping them re-integrate optimally into society, including
returning to some sort of competitive work on a sustained basis.
With normal life expectancy for such people, the cumulative savings
from this alone would be very significant.
5.11 It should also be investigated whether
some of the principles of this approach could be applicable to
a greater extent in a community-based setting.
6. COMMUNITY
FOLLOW-UP
6.1 Following formal rehabilitation, there
should be integrated follow-up within the community—by social
workers and others trained at a specialist "neurological"
unit in the area. Each brain injured person living in the community
should have help from a knowledgeable case manager—who can
relate well to the person (and their family) and who can locate
the most appropriate provision and services for their client.
This is a specialism which needs to be developed with in Local
Authority social services.
6.2 Although there are some excellent community
brain injury units across the country, they are few and far between
and are mostly under-resourced. The more likely scenario in many
parts of the country is that the main source of knowledgeable
and specialist help will be that available from the larger Headway
groups, who usually also have Headway House day centres. (Brain
injured people in London are currently particularly badly served
by the statutory sector and there are only two Headway Houses
in the whole of the capital, although Headway is starting to take
steps to try to improve the situation.)
In such cases, the local Headway group is regarded
by the Local Authority Social Services department as the primary
source of community brain injury support in their area. They thus
refer their clients to the local Headway House, where they attend
for one or two days each week, but apart from that, there is generally
no appropriate support for the person in the community.
7. A "SEAMLESS
SERVICE"?
7.1 We are a very long way from a "seamless
service" in my experience. The statutory sector generally
remains fragmented and does not have the necessary knowledge and
expertise, and is so hard pressed in other areas, that it needs
to be positively encouraged to develop it.
7.2 There should be inter-agency collaboration,
including the voluntary sector, covering health, social services,
social security, employment, education, and housing.
7.3 Consideration should be given to an
inter-agency task force, in each area, charged with developing
the necessary expertise and building teams who could provide appropriate
services to brain injured people and their families and carers.
7.4 Discussions relating to Joint Investment
Planning should lead to closer working between some agencies in
the statutory sector and voluntary organisations, but the current
emphasis on Welfare to Work issues, while undeniably important,
is too narrow, particularly in the brain injury context.
REFERENCES
1 "A HIDDEN DISABILITY". Report
of the SSI Traumatic Brain Injury Rehabilitation Project. July
1996 (reprinted April 1997). (Department of Health) [The accompanying
summary document is enclosed as Appendix 1].
2 Swift, T L and Wilson, S L (2001), Misconceptions
about brain injury among the general public and non-expert health
professionals: an exploratory study, Brain Injury, 15(2),
149-165.
3 Evaluation of Outcomes in Brain Injury
Rehabilitation, Ed Fleminger, S and Powell, J, Neuropsychological
Rehabilitation, 1999, 9(3-4),225-554.
4 US National Institutes of Health—Consensus
Development Conference on Rehabilitation of Persons with Traumatic
Brain Injury. 1998 (Available on http://odp.od.nih.gov/consensus/cons/109/109
intro.htm) [Press-release is enclosed as Appendix 2].
5 Ben Yishay, Y, and Daniels-Zide, E. (2000),
Examined Lives: Outcomes after Holistic Rehabilitation (Diller
Lecture), Rehabilitatin Psychology, 45(2), 112-129.
6 Chapters written by many of the leading
practitioners of holistic neuropsychological rehabilitation around
the world appeared in Interantional Handbook of Neuropsychological
Rehabilitation, ed Christensen and Uzzell. 2000, Kluwer Academic/Plenum
Publishers, New York. It included the following:
Prigatano, G P, A Brief Overview of Four Principles
of Neuropsychologic Rehabilitation, Chapter 7 (pp115-125). [Phoenix,
Arizona, USA].
Ben-Yishay, Y, Postacute Neuropsychological
Rehabilitation, A Holistic Perspective. Chapter 8 (pp127-135),
[New York, USA].
Trexler, L E, Empirical Support for Neuropsychological
Rehabilitation, Chapter 9 (pp137-150) {Indianapolis, USA].
Christensen, A L, Neuropsychological Post Acute
Rehabilitation, Chapter 10 (pp 151-163) [Copenhagen, Denmark].
Daniels-Zide, E and Ben-Yishay, Y, Therapeutic
Milieu Day Program, Chapter 12 (pp 183-193) [New York, USA].
Klonoff, P S, Lamb, D G, Henderson, S W, Reichert,
M V, and Tully S L, Milieu-based Neurorehabilitation at the Adult
Day Hospital for Neurological Rehabilitation, Chapter 13 (pp 195-213)
[Phoenix, Arizona, USA].
Trexler, L E, Eberle, R and Zappala, G, Models
and Programs of the Center for Neuropsychological Rehabilitation,
Chapter 14 (pp 215-220 [Indianapolis, USA an Catania, Italy].
Wilson, B A, Evans, J, Brentnall, S, Bremner,
S Keohane, C and Williams, H, The Oliver Rehabilitation Zangwill
Centre for Neurophychological Rebahilitation-A Partnership between
Health Care and Rehabilitation Research, Chapter 15 (pp 231-2460)
[Ely, United Kingdom].
Caetano, C and Christensen, A L, The CRBI [Center
for Rehabilitation of Brain Injury] at the University of Copenhagen.
A participant—Therapist Perspective, Chapter 17 (pp 259-271).
LIST OF
APPENDICES
APPENDIX 1. A HIDDEN DISABILITY. Report of the
SSI Traumatic Brain Injury Rehabilitation Project. July 1996.
(Department of Health) Summary Document.
APPENDIX 2. US National Institutes of Health—Consensus
Development Conference on Rehabilitation of Persons with Traumatic
Brain Injury. 1998. Press-release.
APPENDIX 3 Characteristics of Holistic Neuropsychological
Rehabilitation Programs.
(From Trexler, L E. (2000). Empirical Support
for Neuropsychological Rehabilitation. International Handbook
of Neuropsychological Rehabilitation, ed, Christensen and
Uzzell. (p. 145). Kluwer Academic/Plenum Publishers, New York).
February 2001
1 Appendices not printed. Back
2
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