The Brain Injury Handbook. sponsored by

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1 sponsored by The Brain Injury Handbook

2 The Brain Injury Handbook Rehab Group in the UK Head Office, Pavilion 7, Watermark Park, 325 Govan Road, Glasgow, G51 2SE Tel: Fax:

3 copyright 2010 by Rehab Group in the UK, Pavilion 7, Watermark Park, 325 Govan Road, Glasgow, G51 2SE All rights reserved. Reproduction in whole or in part by any means whatsoever without written permission of Rehab is prohibited by law. Disclaimer Advertisements in The Brain Injury Handbook are accepted on a commercial basis. By publishing an advertisement, Rehab does not indicate endorsement of the product or services provided by the advertiser. Acknowledgements The publishers are grateful to the following people who gave their valuable time, support and expertise to the production of this handbook: Dr Andrew Bateman, Bill Braithwaite QC, David Bromley, Dr John Evans, Simon Garlick, Rona Gibb of the National Society for Epilepsy, James Japp, Gary Rhodes OBE, Dr Lesley Murphy, Dr Bill McKinlay, Maria McRobbie, Patrick O Shea at the Court of Protection, Rachel Redhead, Jean Martin Savage, Robert Sturgeon, Robert Swanney, Kate Swinburn, Jim Weir BA (Hons), CQSW and Rachel Wilson. We are grateful to our advertisers and sponsors whose support allows us to provide this handbook free of charge. Rehab has made every effort to ensure the accuracy of this handbook and has tried, to the best of its ability, to reflect best practice and the most current information. However, in view of the continuous changes in the healthcare arena, and in rehabilitation in particular, Rehab urges readers to use the handbook only as a guide to help inform their discussions with professionals. It is no substitute for the professional advice and guidance given by the healthcare and rehabilitation specialists assigned to an individual case, and the information provided must be considered alongside the recommendations of the treatment team. If you read anything that confuses or concerns you, talk it over with your medical team. We hope you will find the The Brain Injury Handbook invaluable reading and a great source of help. A copy of the handbook can also be accessed online at Contents The Brain Injury Handbook header Foreword 4 Gary Rhodes OBE Introduction 7 Angela Kerins, Chief Executive, Rehab Group A word from the Editor 9 Jonathan Smallman Section 1 13 Understanding brain injury and the brain Section 2 19 The brain injury itself Section 3 23 The consequences of brain injury Section 4 51 Recovery and rehabilitation Section 5 71 Returning to work after a brain injury Section 6 89 Legal issues Section Useful contacts and resources 2 The Brain Injury Handbook 3

4 Foreword Gary Rhodes OBE Chef, Restaurateur and Author Over the last 35 years, Gary Rhodes has become one of the UK s most high profile and respected chefs, restaurateurs and food authors. Despite overcoming a brain injury in the very early days of his career, he has always found the dedication to his craft and relentless pursuit of perfection required to remain at the top of his profession. Whilst enjoying one of my first cooking jobs in Amsterdam in the late 1970s, I was knocked down by a car and required brain surgery. Though the resulting injuries initially threatened my career, I was lucky to make a full recovery and return to the kitchen less than a year later. Gary s distinguished career, tireless attention to detail and unique mastery of the Great British Classics truly sets him apart. He has won a constellation of Michelin stars and is consistently revered by his peers as truly The Chef s Chef. About Rehab s work, he says, I have known about the fantastic work that Rehab does ever since I enjoyed the opportunity of being the Starter for its 2010 annual parliamentary pancake race. Having since become familiar with The Brain Injury Handbook, I see it is a great example of just one of the ways that Rehab supports people with brain injury. It provides crucial information and help, not only to people with brain injury themselves, but also to their families, friends and carers. It is my privilege to be associated with Rehab and the vital work that it is doing. 4 The Brain Injury Handbook 5

5 Introduction Thompson & Co SOLICITORS Angela Kerins Chief Executive, Rehab Group We help people who have left hospital following a brain injury to get their lives back on track...enabling them to move forward in their lives with independence and confidence. SERIOUS HEAD INJURY Have you suffered a Serious Head Injury as a result of an Accident? You may be entitled to Compensation We offer a sympathetic, professional and friendly service All Claims are dealt with by a specialist senior solicitor Keep 100% of your Compensation NO WIN, NO FEE CALL FREE Home & Hospital Visits Available Welcome to the 2010 updated edition of The Brain Injury Handbook, in which you will find comprehensive information, advice and statistics on acquired brain injury, or ABI, in the UK. The Rehab Group provides a range of innovative acquired brain injury services in the UK. As a leading provider in this area, we understand the effects of brain injury and how it is most effectively managed. It s not always easy to tell if someone has an acquired brain injury, and for this reason it s often referred to as the hidden disability. An acquired brain injury can happen to anyone, at any time in their life. It s not just those who sustain the injury that are affected but a whole circle of people, including family, friends and colleagues, who will all need to learn about the consequences of an acquired brain injury, how to support the person affected and how to access the services available to them. This is where we can help. The Rehab Group is a leading non- Governmental organisation which works towards a world where every person has the opportunity to achieve their potential. We work in local communities to provide high quality services and opportunities to people who need them. In the UK, the Rehab Group consists of three sister organisations Momentum, TBG Learning and The Chaseley Trust, each dedicated to assisting people in moving forward with their lives. In 1992, Rehab developed its vocational brain injury service, designed to support people to return to the workforce, training and further education. Since then, our services have continued to expand and now we offer a range of brain injury services across England and Scotland, helping people to regain their independence and confidence. As medical advances continue, the number of people surviving serious brain injury increases. This positive news means that more people are leaving hospital with the hope of moving on with their lives. Acquired brain injury dramatically changes lives. Common difficulties, including memory problems, personality changes, communication problems and fatigue can make day-to-day tasks a real challenge. Returning to the same employment as before may be impossible for many people. All of these factors can make life difficult but our brain injury rehabilitation programmes focus on strategies for coping with, and overcoming, these problems. 6 The Brain Injury Handbook 7

6 A word from the Editor header Jonathan Smallman The services that we provide include comprehensive assessment, specialist training, job coaching, work placement and job retention support. This handbook contains comprehensive information and details of supports available. Whether it s you or a family member who has sustained a brain injury, or you are a professional working in the field, we trust that you will find this an informative and useful resource. It s not just those who sustain the injury that are affected but a whole circle of people, including family, friends and colleagues, who will all need to learn about the consequences of an acquired brain injury, how to support the person affected and how to access the services available to them. Welcome to the latest issue of The Brain Injury Handbook. Having first-hand experience of brain injury, I have, in my role as Editor of the handbook, used the knowledge gained from my accident and its consequences to reflect on brain injury from personal and professional perspectives. We look at the definition of brain injury and how the brain works; the injury itself; the likely consequences; the recovery, rehabilitation and return to work; related compensation and legal claims; and useful contacts and further reading. You may be reading this handbook either as a person affected by brain injury or as a concerned family member. It is likely that this situation is new ground for you. Through our brain injury rehabilitation and neurodisability centres, we are able to offer assessment, treatment and rehabilitation to adults with acquired brain injury who suffer from physical, emotional and behavioural problems. Our programmes include cognitive rehabilitation, practical living and social skills, communication therapy, health education, leisure interests including creative and recreational pursuits, behavioural programmes including challenging behaviour and physical fitness. Programmes are set up on either a one to one basis and/or in a group setting. They are individually tailored to the personal needs of every patient. The centres are part of The Huntercombe Group, which has other hospitals and units treating mental health issues, eating disorders, addictions and learning disabilities. For information, please contact or visit our website: With that in mind, the handbook has been designed to offer vital reference and advice surrounding recovery and rehabilitation both in the short- and long-term. Professionals, people with brain injuries, their families, carers and friends should all find it of interest. The information and advice provided has been drawn from a number of sources. It has come from detailed research, from Rehab s own working experience, from a number of professionals with experience of brain injury and, last but not least, from people who also have personal experience of the trauma of brain injury within the family unit and who have chosen to share their stories. We have tried to structure the handbook so that you can easily access the information most relevant to you at any particular time. The facts A brain injury can happen to anyone at any time. Each year in the UK, some 140,000 individuals and their families and friends will encounter brain injury and its consequences. Around 85 per cent of injuries will be categorised as mild to moderate. 8 The Brain Injury Handbook 9

7 Although these will leave minimal long-term consequences, they may seriously disrupt a person s life for months and, sometimes, years. A further 10 per cent will suffer a moderate and 5 per cent a severe brain injury. This is likely to result in complex long-term problems affecting their personality, their thinking, their relationships and their ability to continue to lead independent and fruitful lives. There is no doubting the level of trauma that a brain injury will impose on a person be that physically, mentally, emotionally or, as is common, all three. However, the trauma also experienced by a concerned family can be equally significant. A brain injury requires that everyone involved has to become almost immediately familiar with a whole new reality associated with the recovery and rehabilitation process. A useful guide Research has highlighted the need for the family unit, which often provides support, to have written information about brain injury available, so enabling a clear understanding of the likely consequences. Although this handbook has been designed to provide that, it can also be used as a reference book for those who have experienced a brain injury first-hand. It is not a definitive guide to the condition and it may not answer all questions; however, it should provide a useful overview. We hope you will find The Brain Injury Handbook invaluable reading and a great source of help. A copy of the handbook can also be accessed via the Rehab website, JonathanSmallman@chaseleytrust.org A brain injury requires that everyone involved has to become almost immediately familiar with a whole new reality associated with the recovery and rehabilitation process. 10 The Brain Injury Handbook 11

8 Section 1 Section header 1 Understanding brain injury and the brain Stephenson Unit is an 11-bed, purpose built, acquired brain injury rehabilitation facility located within St. Mary s Care Centre. What is acquired brain injury? Adopting a multi-disciplinary approach to care, placing an emphasis on dignity, respect and unconditional positive regard whilst maximising independent functioning, providing the highest quality service to optimise a quality of life experience through an individually designed pathway of care. As part of our homes for life philosophy, we are developing a range of supported independent living accommodation. Acquired brain injury (also known as ABI) is damage to the brain that was not present at birth but has occurred since and which is non-progressive. An acquired brain injury can result from traumatic brain injury and non-traumatic brain injury. The most common causes of traumatic brain injury are road traffic accidents, assaults and falls. Non-traumatic brain injury has a variety of causes. The most common causes are stroke and other problems within blood vessels supplying the brain, tumours, infections, poisoning through ingestion or inhalation of toxic substances, metabolic disorders such as liver and kidney disease or diabetic coma and lack of blood flow (ischemia) or oxygen (hypoxia) to the brain. Acquired brain injury therefore excludes brain injury which was present at birth (congenital brain injury) and brain conditions which are degenerative such as dementia, multiple sclerosis or Parkinson s disease. Some forms of acquired brain injury, e.g. stroke or tumour, tend to cause localised damage to the brain whereas others, e.g. hypoxia and meningitis, usually cause widespread brain damage. The effects of acquired brain injury upon the individual can therefore vary dramatically from person to person. Given the diverse nature of acquired brain injury, it is understandable that in this area of rehabilitation various terms are often used to describe the nature of the brain injury, e.g. head injury, brain injury, traumatic brain injury, acquired brain injury. To avoid confusion and for the sake of consistency, this handbook will refer to brain injury throughout to denote any form of acquired brain injury as defined here. 12 The Brain Injury Handbook 13

9 Understanding brain injury and the brain Section 1 What does the brain do and how does it work? The brain is the control centre for all the body s functions, such as walking, talking, swallowing, breathing, taste, smell, heart rate and so on. It also controls all our thinking functions, our emotions, how we behave and all our intellectual (cognitive) activities, such as how we attend to things, how we perceive and understand our world and its physical surroundings, how we learn and remember and so on. Everything, in fact! It follows, therefore, that damage to the brain for whatever reason can impair some or all of these functions or activities. How much impairment a person will have will depend on the type, location and severity of the injury. It will help to understand this if we have a look at the structure of the brain and the functions of the different areas within it. The structure and function of the brain The brain is a soft, jelly-like material that is completely enclosed in the skull and floats in a protective sea of cerebrospinal fluid. This fluid supports and nourishes the brain and acts as a kind of shock absorber for rapid head movements. To some extent the skull protects the brain but nature wasn t kind when designing the inner surface with its bony ridges. These can lacerate and bruise the delicate surface of the brain if it is forced violently against the inside of the skull, as can happen in a road traffic accident (also known as an RTA) or fall. The brain is also protected by three layers of membrane that lie between it and the skull. If the brain is shaken about, these membranes and blood vessels can tear and bleed. If enough blood escapes, blood clots will form and can press on the brain and cause damage. There can also be damage if the blood vessels become weakened and burst, as in the case of a brain haemorrhage. Damage will also occur if the blood supply to the brain is interrupted for any reason. The brain is made up of billions of cells, blood vessels, fluid and nerve cells called neurons. These have delicate nerve fibres that radiate from the cell body and connect to millions of other nerve cells to form highly-complex communication between different parts of the brain. It is believed that each individual neuron network connects with approximately 1,100 other neurons. Nobody really knows how many neurons there are in the brain but the favoured estimate by neuroscientists is 12 billion. Professor Susan Greenfield, an eminent neuroscientist, has suggested that we think of neurons as trees in the Amazon rainforest and the leaves on those trees as the connections between the neurons. If the brain is shaken about, these delicate nerve fibres get disrupted and damaged, resulting in a disruption of the communication pathways and the consequent disruption of certain skills and abilities. There are three main areas that play a vital part in our ability to function: 1 The cerebral cortex 2 The brain stem 3 The cerebellum Figure 1 The brain cerebral cortex brain stem spinal cord 1 The cerebral cortex The cerebral cortex (Figure 1) is the largest part of the brain and is the area that is responsible for all our thinking activities. It is divided into two connected halves the left and right cerebral hemispheres. The left hemisphere controls the right side of the body and the right hemisphere controls the left. For example, if a person sustains a brain injury, such as a stroke, to the left hemisphere in the area of the cerebral cortex that controls movement, this may result in weakness or even paralysis of the right arm and leg. In most people, the left hemisphere primarily controls verbal functions such as speech and language while the right hemisphere primarily controls visual spatial (non-verbal) functions such as those involved in drawing, rhythm or finding one s way in unfamiliar surroundings. The hemispheres are known to process material in different ways with the left cerebral hemisphere specialising in processing cerebrospinal fluid skull cerebellum material in a sequential and logical manner and the right cerebral hemisphere processing information in a holistic and intuitive way. The cerebral cortex is further divided into four areas, or lobes, each of which controls specific functions and skills. 14 The Brain Injury Handbook 15

10 Understanding brain injury and the brain Section 1 16 Figure 2 Cerebral lobes motor cortex (movement) frontal lobes The frontal lobes temporal lobe (auditory lobe) brain stem The frontal lobes (Figure 2) have been termed the executive of the brain. This is where all of our higher-level thinking goes on, allowing us to reason logically, make decisions, plan, organise and problem-solve, exercise good judgement and monitor or manage our actions. It is considered to be the home of our personality and the control centre for our emotions and behaviour. The frontal lobes allow us to apply our knowledge and adapt our behaviour so that it is appropriate to the situation we are in. The frontal lobes also contain the motor cortex, a vital part of the brain system controlling movement. The frontal lobes are extremely vulnerable to injury due to their position at the front of the skull. Studies have found that the frontal area is the most common region of injury, even following mild brain injury. Damage to this area can cause myriad cognitive problems and can dramatically change social behaviour and somatosensory cortex (sensations) spinal cord parietal lobe occipital lobe cerebellum personality. Physical problems can include the loss of fine movements, lack of strength in the arms, hands and fingers, little spontaneous facial expression or difficulty in speaking. The temporal lobe The temporal lobe (Figure 2) lies just behind our ears and contains the auditory cortex. This allows us to interpret sound. The temporal lobe stores most of our memories and is involved in aspects of language, including our ability to use language and understand what we hear. Like the frontal lobes, the temporal lobe is involved in regulating certain aspects of personality. Deep inside the temporal lobe are the structures of the hypothalamus and limbic system. The hypothalamus is involved in instinctual behaviours such as aggression, sexual arousal, appetite, thirst and temperature control. The limbic system is in control of emotional reactions. Damage to these areas can severely disrupt our emotions resulting in sudden and dramatic mood swings; and can also lead to inappropriate social behaviour such as hyper-sexuality and impulsiveness. The parietal lobe The parietal lobe (Figure 2) contains the somatosensory cortex which receives and analyses information from the skin concerning touch, pressure, temperature and some aspects of pain. The parietal lobe is vital to our spatial understanding of the world. For example, it enables us to understand where we are in relation to our surroundings and where our body parts are in relation to each other, as well as the spatial relationships between the things we perceive in our environment. Damage to the parietal lobe can impair reading, writing and mathematical abilities, drawing and constructional tasks, as well as self-care abilities such as washing and dressing. The occipital lobe The occipital lobe (Figure 2) analyses what we see and is, therefore, responsible for sight. If it is damaged, blindness or partial blindness can result. 2 The brain stem The brain stem (Figure 2) is connected to the spinal cord and from there to the whole of the central nervous system in the rest of the body. The brain stem controls movements of the throat, so damage to this area may result in impairments in speech and swallowing. It also controls consciousness, alertness and functions that are not under conscious control, such as breathing, body temperature, heart rate and blood pressure. It is therefore an extremely critical area in terms of damage to the brain stem interrupting normal nerve fibres. 3 The cerebellum The cerebellum (Figure 2) is located just behind the top part of the brain stem and controls fine muscle co-ordination, balance and posture. Damage to this area can affect our ability to move quickly and gracefully or to perform such functions as climbing up a ladder or buttoning up a jacket. In summary, damage to a particular part of the brain can produce impairment in the function that it controls. If the damage is limited to a small area, then it is likely that only a few functions will be impaired. If, however, as is more common, there is widespread damage, then this can produce a complex array of physical and psychological problems. The frontal lobes are extremely vulnerable to injury due to their position at the front of the skull. Studies have found that the frontal area is the most common region of injury, even following mild brain injury. The Brain Injury Handbook 17