APPENDIX 21
Memorandum by Dr Frances Clegg (H 48A)
I give below some details of the type of difficulties
which can be faced by head injured people and their families,
following discharge to the community from hospital based or residential
rehabilitation.
I am particularly concerned with the needs of
people who are independently mobile and self-caring in such aspects
as washing, dressing, shopping, preparing meals etc., and who
are considered able to return to live in a normal family home,
with minimal further therapy needs (ie Speech and Language Therapy,
Occupational Therapy or Physiotherapy). The head injured person
might feel that he or she will be able to resume responsibilities
such as caring for children or returning to work.
Such people will often have their basic cognitive
skills preserved (such as vision, memory for past events, ability
to speak, read and write), and indeed may have above average IQs
on formal assessment. But there are two main problems which they
frequently encounter, and which lead to great distress to themselves
and their families.
The first problem is that despite having intact
skills, the head injured person often lacks what is called "executive
skills". This means the ability to monitor their own behaviour
and performance, modify it in the light of incoming feedback,
make balanced and appropriate judgements, take action in a considered
rather than impulsive way, concentrate and attend to tasks in
hand, show mental flexibility and carry out more than one task
at once. Many people are chaotic and disorganised in all aspects
of their personal life, and fail to make use of basic sensible
compensatory strategies such as diaries or other reminder systems.
Quite frequently though, rather than show impulsivity, the head
injured person might have the opposite problem, that of being
completely lethargic and lacking in initiation to carry out any
purposeful activity without prompting and encouraging. Such a
person can appear to be depressed, but in fact their problem is
not one of low mood, but a lack of motivation due directly to
the brain damage they have suffered. Often, accompanying the poor
executive skills there is a change of personality—the person
might become excessively extrovert and disinhibited in social
situations, or alternatively, withdrawn and reclusive. Quite often
the head injured person will be completely lacking in insight
into the changes they have undergone, and will refuse to recognise
that difficulties which arise are due to their own limitations.
The second major problem is that many head injured
people have "short-fuses" and can become demanding and
childish—for instance having temper tantrums or verbal or
physical aggressive outbursts, directed at others—usually
carers within their immediate family circle. Such negative behaviours—usually
referred to as "behavioural problems"—cause families
intense distress, and they rarely know how to cope or respond
to these, let along bring about any improvement. Successful treatment
of these behavioural problems means that the head injured person
has to be helped within the context of the family members who
are bearing the brunt. The problems can be talked about by the
person at great length, but unless certain treatment regimes are
drawn up which include all family members as well as the head
injured person, and which also involve active recording and monitoring
of behaviour as well as the implementation of particular responses,
improvement is unlikely to take place.
From the above it is not hard to see why a person
with fairly intact intellectual skills and capabilities can soon
lose friends, fail to make a success of any employment opportunities
which are offered, alienate their family and main loved ones,
and cause everyone, including themselves, great distress. All
concerned feel trapped in an unhappy situation, in which there
are no obvious professionals who can offer support.
Many clinical psychologists and well qualified
counsellors are not experienced enough in neuropsychology and
the impact of brain injury in particular to feel able to help
such individuals and their families. In addition, they are unused
to working with a client alongside his or her family, they are
unable to carry out work in a client's home rather than a hospital
department or clinic, and they are unable to make any long term
commitment to therapy. The thrust of most psychological therapies
carried out by clinical psychologists working in adult mental
health is towards brief interventions in which particular limited
targets have been identified. The problems encountered by head
injured people and their families are wide-ranging, not particularly
amenable to simple interventions, and worst of all, may need months
or even years of input. Many head injured people, rather than
needing a short burst of intervention will require long periods
of treatment, sometimes with periods of withdrawal as one set
of problems is mastered, and before encountering a fresh set of
difficulties or acute crisis.
I give below a few examples of the types of
problems which some of the patients discharged by the Regional
Rehabilitation Unit at Northwick Park have encountered, and to
which they have turned to us for help, despite the fact that we
do not have the staff or facilities to meet their needs once they
are discharged to the community. Details of patients have been
changed to preserve anonymity.
1. A 17 year old schoolboy suffered a head
injury from a car accident. He returned to school, where previously
he had been doing reasonably well, and had been very active in
sports. He was no longer able to participate in sports, had become
less outgoing, was often tired and lacked concentration in class.
His lack of safety awareness meant that his mother had to accompany
his to school each morning, much to his embarrassment. He began
to lose his friends at school, and with his family he frequently
had angry outbursts. Although the school felt that they needed
advice, in reality they lacked any teacher with the time or skills
to help him readjust to different cognitive abilities and lowered
academic expectations. The boy became depressed and increasingly
unhappy and unmanageable at home and school. His mother was unsure
how to manage his problem, there was no community based rehabilitation
team which included a psychologist, and she had no-one to whom
she could turn, apart from ourselves. In due course this young
man will need advice about training for some sort of sheltered
employment, but it is not clear who will help him and his family
to identify suitable schemes. Disability Employment Advisors (who
work in local Job Centres) rarely have any expertise in helping
people with the "invisible" types of disability following
head injury to gain training or employment.
2. A mother in her thirties with an eight
year old daughter with a husband in full-time work and who returned
home to her previous role of housewife. Her cognitive problems
(mainly memory impairment), meant that she needed help from a
nanny to care for her daughter. However, her constant irritability,
outbursts of anger and disinhibition resulted in the daughter
herself developing behavioural problems and needing help. The
mother became suicidal, and was referred to the local clinical
psychology department. The clinical psychologist felt that a person
with such special and complex needs was beyond his remit, and
felt unable to offer any help. This lady is currently on a 14
month waiting list for specialised help from a neuropsychologist.
Meanwhile all family members suffer great unhappiness and feel
abandoned, initially following intensive help from a rehabilitation
unit which was many miles from their home.
(It is not unusual for a marriage to break up
following a head injury, and particularly when young children
are involved. A partner may remove the children from the environment
in which anger and aggressive outbursts are common, in order to
protect them psychologically, and enable them to experience a
calmer domestic environment.)
3. A 22 year old man who was orphaned in
his teens suffered brain injury following a motor bike accident
at the age of 18, and is now living independently in the local
community. His eccentric behaviour and odd social skills mean
that he is unable to make new friends or sustain relationships,
and as a result he is lonely, depressed and sometimes suicidal
at times. His chaotic and disorganised style of living has meant
that he too has failed to obtain any paid employment, although
for several months he managed to hold down a part time position
in a local charity shop. When things go well for him he develops
a sense of unrealistic optimism and fantastic hopes for the future.
At times when he feels very depressed he copes by making frequent
calls to the Samaritans, or else by returning to the local hospital
where he was cared for in the early days of his injury, and where
he knows that the nursing staff will provide him with a cup of
tea and sympathetic ear. Because he cannot develop clear goals
he wishes to work towards, nor has a clearly defined mental disorder,
the local psychological and adult mental health services are unable
to offer him any support at all. He is likely to need support
and surveillance for many years to come.
All these people have had excellent hospital
and in-patient rehabilitation help in the relatively early days
of their brain injuries (about 6-12 months), but have then found
that when living in the community they have minimal or no sources
of support—either for short term crises or longer term problems.
They do not necessarily need intensive or even regular professional
help once the main domestic crisis are resolved, but they will
tend to have recurrent crises, and need access to expert help
on the occasions it is needed. The families of brain injured people
frequently suffer intense distress and unhappiness, and are also
unable to obtain any psychological support, professional advice
or practical help. All these people need access to a service which
is available over a period of many years, flexible in meeting
their varied requirements, and staffed by professionals who have
expert knowledge of the impact and sequellae of brain injury.
March 2001
|
