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1 The Brain Injury Handbook sponsored by The Brain Injury Handbook a

2 Supporting brain injured people and their carers We understand the impact a brain injury can have on the whole family. Our specialist solicitors, case workers and support service professionals work with you to provide financial, emotional and practical support. From expert legal advice for your claim, to guidance on welfare and benefits entitlements and rehabilitation services, we can begin the process of rebuilding your life after a brain injury. Our national coverage also means that you can be referred to someone local to you who can signpost local support services too. For more details about the complete package of support we offer call b

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

4 Acknowledgments 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, Alister Berry, Bill Braithwaite QC, Katrina Downie, Simon Garlick, Trudie Hanson, Nicola Henderson, Dr Ashok Jansari, Stuart McIntyre, Dr Bill McKinlay, Jean Martin Savage, Robert Swanney, Kate Swinburn, Jim Weir and Rachel Wilson. We are grateful to our advertisers and sponsors whose support allows us to provide this handbook free of charge. The Rehab Group has made every effort to ensure the accuracy of the information provided in this handbook and has endeavoured, to the best possible extent, to reflect best practice and the most current data. However, in view of the continuous changes in the healthcare arena, and in rehabilitation in particular, readers are urged to use the handbook only as a guide to help inform their discussions with professionals. It is no substitute for the advice and guidance given by healthcare and rehabilitation specialists, and the information provided must be considered alongside their recommendations. If you read anything that confuses or concerns you, talk it over with your medical team. copyright 2012 Rehab Group (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 the Rehab Group is prohibited by law. Disclaimer Advertisements in The Brain Injury Handbook are accepted on a commercial basis. By publishing an advertisement, the Rehab Group does not indicate endorsement of the product or service provided by the advertiser. While every effort has been made to ensure the accuracy of content contained within this publication, no responsibility can be accepted by the Rehab Group for any errors or omissions herein. Front cover Katrina Downie who attended Momentum Skills brain injury vocational rehabilitation service in Aberdeen. Momentum Skills is part of the Rehab Group. 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 online at 2

5 Contents The Brain Injury Handbook Foreword 4 Iwan Thomas MBE, Athlete, Television Presenter and Rehab Ambassador Introduction 7 Angela Kerins, Chief Executive, Rehab Group A word from the Editor 9 Jonathan Smallman Section 1 15 Understanding brain injury and the brain Section 2 23 The brain injury itself Section 3 27 The consequences of brain injury Section 4 61 Recovery and rehabilitation Section 5 81 Returning to work after a brain injury Section 6 93 Legal issues Section Useful contacts and resources The Brain Injury Handbook 3

6 Foreword Iwan Thomas MBE Athlete, Television Presenter and Rehab Ambassador Reporting for Channel 4 on The Paralympic Games in London this year, I was witness to the incredible talents and successes of our athletes. The Paralympic Movement has helped hugely to raise awareness of disability and, like Rehab, is working to create a more equal and understanding society. I first heard about the work of Rehab in 2008 and have seen first-hand the support it provides to people who have sustained a brain injury. The dedication and commitment of Rehab s staff is clear and the stories of the people accessing its services are inspirational, to say the least. At what must be a critical and worrying time in the life of anyone who has experienced a brain injury, the handbook provides a lot of valuable support and advice. People can refer to it time and time again, and benefit from articles by professionals as well as from the inspirational stories of individuals who find themselves faced with a similar situation. I am sure that people will find this a useful resource which will assist those with a brain injury on their rehabilitation journey. I am honoured to have been asked to write this Foreword for Rehab s publication The Brain Injury Handbook. It explains brain injury and the recovery and rehabilitation stages clearly and comprehensively, not only for the person with the injury but also for their carers and loved ones. 4

7 Ian claimed compensation with Thompsons after he lost part of his right leg in an accident at work I was seen by an impressive cross section of experts brought in by Thompsons - both as part of building my case and also, in some instances, as part of providing practical help. Ian At Thompsons, we have specialist teams with a wealth of experience in handling serious injury claims, including those for brain injury, spinal and spinal cord injury, amputations and serious burns. We are supported by highly reputed experts who assess care needs and every financial aspect of your claim. We will arrange for a lawyer to visit you and assess your case under no obligation. You will keep 100% of the settlement. For no obligation advice call or visit Thompsons Solicitors is a trading name of Thompsons Solicitors LLP and is regulated by the Solicitors Regulation Authority. The Brain Injury Handbook 5

8 Stephenson Unit is an 11-bed, purpose built, acquired brain injury rehabilitation facility located within St. Mary s Care Centre. 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. 12 6

9 Introduction Angela Kerins Chief Executive, Rehab Group Welcome to the 2013 edition of The Brain Injury Handbook, in which you will find useful information and advice about acquired brain injury as well as details of the supports available in the UK. The Rehab Group is a leading nongovernmental organisation, which works towards a world where every person has the opportunity to achieve their potential. We work in local communities to provide highquality services and opportunities to people who need them. In the UK, the Rehab Group comprises three organisations Momentum, TBG Learning and The Chaseley Trust each dedicated to assisting people in fulfilling personal goals. Rehab JobFit is a partnership between the Rehab Group and Interserve. It is a prime provider to the Department for Work and Pensions (DWP) and currently delivers both Work Programme and Mandatory Work Activity contracts for the DWP in Wales and South-West England. In Ireland, through our organisations RehabCare, National Learning Network and Rehab Enterprises, we provide a range of health and social care, training and education and rehabilitation, employment and commercial services. In addition to supporting people with physical, sensory and intellectual disabilities, people with mental health difficulties and people with autism, we also provide vital services to people with acquired brain injury tailored to their individual needs and goals and those of their families. In 1992, we developed our first vocational brain injury service in Glasgow, designed to support people in returning to the workforce, training and further education. Since then, our services have continued to expand and we now offer a range of brain injury services across England and Scotland, supporting people in accessing job opportunities, playing more active roles in their communities and living more independent lives. As a leading provider of services to people affected by acquired brain injury, the Rehab Group understands the effects of brain injury and how it is most effectively managed. Through a range of innovative services, we support people who have acquired a brain injury to get back on track, enabling them to move forward with their lives. It s not always easy to tell if someone has an acquired brain injury and for this reason it is often referred to as a hidden disability. But an acquired brain injury can happen to anyone, at any time. The injury can significantly impact on the person s life and also affects the person s family, friends and colleagues. The Brain Injury Handbook 7

10 It is important that the person and their support network have the opportunity to learn about the consequences of the brain injury, how to support the person affected and how to access the services available to them. Access to relevant, up-to-date information can prove essential in supporting a person to overcome many of the difficulties that arise. Our brain injury rehabilitation programmes focus on strategies for coping with, and overcoming, the challenges that a brain injury presents. Our services include comprehensive assessment, specialist training, job coaching, work placement and support with job retention. Recently, we have also developed a dedicated web portal, supported by Covidien, for and by brain injury survivors, to provide meaningful information and resources for other survivors and their families. An acquired brain injury can dramatically change a person s life. Common difficulties, which include memory problems, personality changes, communication issues and fatigue, can make day-to-day tasks a real challenge. Returning to the same employment as before may not be possible for some. It is important that people learn to manage their condition and to develop new skills. This handbook is an essential resource. It provides information about the consequences of acquired brain injury and about the services that are available. Whether it s you or a family member who has been affected, or you are a professional working in the field, I trust that you will find this handbook invaluable in helping you to learn more about acquired brain injury and to access essential services throughout the UK. 8

11 A word from the Editor Jonathan Smallman 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 both personal and professional perspectives. 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. We have tried to structure the handbook so that you can easily access the information most relevant to you at any particular time. We look at the definition of brain injury and how the brain works; the injury itself; the likely consequences; recovery, rehabilitation and return to work; related compensation and legal claims; and useful contacts and further reading. 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 experience, from a number of professionals working in the area and from people who have personal experience of the trauma of brain injury who have chosen to share their stories. The Brain Injury Handbook 9

12 There is no doubting the level of trauma that a brain injury will inflict on a person be that physically, mentally, emotionally or, as is common, all three. However, the trauma also experienced by a family can be equally significant. A brain injury requires everyone involved to become almost immediately familiar with a whole new reality associated with the recovery and rehabilitation process. Research has highlighted the need for the family unit, which often provides support, to have written information about brain injury, so enabling a clear understanding of the likely consequences. This handbook has been designed to provide that, as well as offering 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 that you will find The Brain Injury Handbook invaluable reading and a great source of help. 10

13 The Brain Injury Handbook 11

14 Each year, Rehab works with more than 54,000 people across the UK, Ireland, the Netherlands and Poland who have a range of disabilities or who are otherwise socially excluded, providing services in local communities and supporting them to move forward in their lives and to achieve their goals. From a network of 40 centres across the UK, Rehab provides health and social care, training and education, rehabilitation, employment and commercial services. These services are principally provided by Momentum, TBG Learning, The Chaseley Trust and through the new partnership with Interserve, Rehab JobFit. For more information, visit Momentum is a leading not-for-profit organisation providing rehabilitation, training and care services for disabled and socially excluded people throughout the UK. Momentum s services help a wide range of people, including those with a brain injury, spinal injury, mental health difficulty, physical or learning disability, in the areas of employment and training, job retention and community rehabilitation. The organisation also provides social care and supported living services to people in their own homes. Momentum comprises Momentum Skills, Momentum Care and Haven. 12 Rehab in the UK and Ireland Rehab is a leading non-governmental organisation which works towards a world where every person has the opportunity to achieve their potential. Momentum Skills offers rehabilitation and training services, empowering people to gain the skills and confidence that they need to live independently and to fulfil their employment goals. Momentum Care provides a variety of social care services for people with a wide range of needs, including older people and those who are disabled. Staff teams support people in their communities, enabling them to live independently and to take part in communitybased activities. Haven is Momentum s social enterprise arm. Approximately 80 per cent of its staff members are people with disabilities, providing services such as recycling, packaging, component assembly and print finishing, to some of the country s largest blue chip companies. For further information, visit The Chaseley Trust supports people with physical disabilities and is based on the seafront in Eastbourne. Chaseley Home offers residential respite/holiday care as well as rehabilitation programmes in addition to day care and outpatient therapy services for non-residents. It has also recently opened Activate, a wheelchairaccessible gym. The Chaseley Bungalows offer people the opportunity to live in a fully accessible personalised bungalow but with 24-hour nursing care and daily personal assistance on hand. For more information, visit TBG Learning is one of the UK s leading thirdsector youth and adult learning organisations, as well as a growing provider of services focused on employment preparation. The organisation provides a wide variety of learning opportunities to improve basic literacy, numeracy and vocational skills that result in recognised, accredited qualifications. TBG Learning s services are

15 accessed by thousands of people each year, the majority from disadvantaged groups such as long-term unemployed adults or young people not in education, employment or training. TBG Learning also works with over 3,000 employers, providing a cost-effective recruitment service and helps to raise skill levels in the workplace through apprenticeships and bespoke training solutions. With a network of centres across England and Wales, TBG Learning is able to provide a wide range of services that benefit employers and communities and improve people s lives. For more information, visit Rehab JobFit is a partnership between Rehab and Interserve, one of the world s foremost support services and construction companies. Rehab JobFit is a prime provider to the Department for Work and Pensions (DWP) and currently delivers both Work Programme and Mandatory Work Activity contracts for the DWP in Wales and South-West England. Both these services are designed to support long-term unemployed people into sustainable work. For more information, visit Rehab outside the UK Ireland, Poland and the Netherlands In Ireland, Rehab s services are provided through National Learning Network, RehabCare and Rehab Enterprises. National Learning Network is an internationallyrecognised world leader in the provision of highquality training and specialist support to people who are more distant from the labour market. National Learning Network is Ireland s largest non-governmental training organisation, with over 50 purpose-built training and employment facilities catering for some 5,000 students each year. In partnership with state bodies, National Learning Network offers over 40 different training programmes, which are provided via centres, employers workplaces or by blended learning. These programmes carry National Qualifications Framework accreditation, which is recognised nationally and internationally. In 2011, 90 per cent of those who completed training with National Learning Network progressed to employment or to further education and training. National Learning Network also offers continuous professional development courses and specialist assessment services. RehabCare offers a variety of health and social care services including community-based resource centres, residential and supported accommodation, respite, outreach and home care services to more than 3,000 people of all ages and from all walks of life. Rehab Enterprises, Rehab s commercial division, is Ireland s largest single non-governmental employer of people with disabilities. Through its various companies, Rehab Enterprises manages the delivery of recycling, logistics, packaging and retail services. In Poland, Rehab Enterprises provides logistics, computer keyboard printing and electronic equipment repair services. In the Netherlands it manages product returns for international blue-chip organisations. At its core, Rehab Enterprises provides employment opportunities for 400 people, almost half of whom have a disability. Rehab s role goes beyond simply providing services that enable people to make the most of their skills and talents in the workplace and in the wider community. Rehab is also a leading campaigner for reforms to remove barriers preventing equal opportunities. It participates actively in a number of international and European organisations, including the Economic and Social Council of the United Nations where Rehab has consultative status as a non-governmental organisation. For more information, visit The Brain Injury Handbook 13

16 NEURO REHABILITATION Focusing on ability rather than disability Barchester Healthcare has a range of rehabilitation services for people with acquired brain and spinal injury, people with complex disabilities, and health needs resulting from a range of neurological conditions. Across our UK network we have services that provide: Sub-acute neuro rehabilitation services Slow-stream rehabilitation services Long-term neurological care including SMART assessment Our approach to rehabilitation is through clinical and professional multi-disciplinary teams, where emphasis is placed on maximising quality of life, reablement and independence. Outcome-focused, goal-setting therapeutic rehabilitation packages are personalised to maximise an individual s potential. We work closely with NHS colleagues and partners to provide services through integrated working. Our different service models mean that we can work with individuals at different stages of their rehabilitation pathway. Within these services we offer short- and long-term rehabilitation packages and longerterm home environments including respite and short breaks for adults of all ages. The types of people that we work with include: Acquired and traumatic brain injury Complex physical disabilities resulting from neurological conditions Stroke Rehabilitation Ventilation and tracheostomy services including weaning programmes Spinal injury Progressive long-term neurological conditions Motor Neurone Disease Multiple Sclerosis For more information please contact your local centre Awel-Y-Mor Care Centre Swansea, West Glamorgan Tel: Hawthorns Neurological Rehabilitation Centre Peterlee, Co Durham Tel: The Manor Care Centre Taunton, Somerset Tel: Rothsay Grange Hobbs Rehabilitation Weyhill, Hampshire Tel:

17 Section 1 Understanding brain injury and the brain 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. Given the diverse nature of acquired brain injury, it is understandable that in this area of rehabilitation various terms are often used to describe it, 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. Acquired brain injury therefore excludes brain injury that was present at birth (congenital brain injury) and brain conditions that 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. The Brain Injury Handbook 15

18 What does the brain do and how does it work? The brain is the control centre for all of the body s functions, such as walking, talking, swallowing, breathing, tasting, smelling, heart rate and so on. It also controls all of our thinking functions, our emotions, how we behave and all of 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. 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. To understand this, we will 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 liquid cushion 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 its 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 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. In addition, there can 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 systems 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 breakdown 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: The cerebral cortex The brain stem The cerebellum 16

19 Understanding brain injury and the brain Section 1 Understanding brain injury and the brain Section Figure 1 The brain cerebral cortex cerebrospinal fluid skull brain stem spinal cord cerebellum 1 The cerebral cortex The cerebral cortex The The cerebral cerebral cortex cortex (Figure (Figure 1) 1) is is the the largest largest part of the brain and and is is the the area area that that is is responsible for all of our our thinking activities. It is It is divided into into two two connected halves the left and right cerebral hemispheres. The left hemisphere controls the right side of of the the body and the right hemisphere controls the the left. left. For For example, example, if if a person person sustains sustains a a brain brain injury, such as stroke, to the left hemisphere injury, such as a stroke, to the left hemisphere in the area of the cerebral cortex that controls in the area of the cerebral cortex that controls movement, this may result in weakness or movement, even paralysis this of may the right result arm in weakness and leg. In or even most paralysis people, the of the left right hemisphere arm and primarily leg. In most controls people, verbal the functions left hemisphere such as speech primarily controls and language verbal while functions the right such hemisphere as speech and primarily language controls while visual the spatial right hemisphere (non-verbal) primarily functions controls such as those visual involved spatial (non-verbal) in drawing, 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 material in a sequential and logical manner and rhythm the right or finding cerebral one s hemisphere way in unfamiliar processing surroundings. The hemispheres are known to information in a holistic and intuitive way. process material in different ways, with the left The cerebral cerebral hemisphere cortex specialising further divided in processing into four areas, material or lobes, in a sequential each of which and logical controls manner specific functions and the right and skills. 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 (Figure 2): Frontal Temporal Parietal Occipital The Brain Injury Handbook 17

20 Figure 2 Cerebral lobes motor cortex (movement) somatosensory cortex (sensations) frontal lobes parietal lobe occipital lobe temporal lobe (auditory cortex) brain stem spinal cord cerebellum The frontal lobes The frontal lobes (Figure 2) have been termed The the executive frontal lobes of have the been brain. termed This is the where all executive of our higher-level of the brain. thinking This goes is where on, allowing all our higher-level thinking goes on, allowing us to reason logically, make decisions, plan, us to reason logically, make decisions, plan, organise and problem-solve, exercise good organise and problem-solve, exercise good judgement judgement and and monitor monitor or or manage manage our our actions. It It is is considered to to be be the the home home of of our personality and the control centre for for our our emotions and behaviour. The frontal lobes allow us to apply our knowledge and adapt our behaviour so so that it it is is appropriate to to the the situation that we are we in. are The in. The frontal frontal lobes lobes also also contain the motor cortex, a vital part of the contain the motor cortex, a vital part of the brain system controlling movement. brain system controlling movement. The frontal lobes are extremely vulnerable to to injury due to their position at at the front of of the the skull. Studies have found that the the frontal area area is the most common region of injury, even following mild brain injury. Damage to this area can cause myriad cognitive problems and 18 can dramatically change social behaviour and personality. Physical problems can include the loss is the of most fine movements, common region lack of of injury, strength even in the arms, following hands mild and brain fingers, injury. little Damage spontaneous can cause facial many expression cognitive problems or difficulty and in can speaking. dramatically change social behaviour and personality. The Physical temporal problems lobe can include the loss of fine movements, lack of strength in the arms, The temporal lobe (Figure 2) lies just behind hands and fingers, little spontaneous facial our ears and contains the auditory cortex. This expression or difficulty in speaking. allows us to interpret sound. The temporal lobe The temporal stores most lobe of our memories and is involved The temporal in aspects lobe lies of language, just behind including our ears our ability and contains to use language the auditory and cortex. understand This allows what we us to hear. interpret Like the sound. frontal The lobes, temporal the temporal lobe lobe stores is most involved of our in regulating memories and certain is involved aspects in of aspects personality. of language, including our ability to use language and understand what we Deep hear. Like inside the the frontal temporal lobes, lobe the temporal are the structures lobe is involved of the in hypothalamus regulating certain and limbic aspects system. of personality. 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

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