Select Committee on Health Appendices to the Minutes of Evidence


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of personality—the person might become excessively extrovert and disinhibited in social situations, or alternatively, withdrawn and reclusive.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

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