The Brain Injury Handbook. sponsored by. The Brain Injury Handbook

Transcription

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

21 Understanding brain injury and the brain Section 1 Deep inside the temporal lobe are the structures of the hypothalamus and limbic system. The hypothalamus is involved in instinctive 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 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 skills, drawing and construction tasks, as well as self-care abilities such as washing and dressing. The occipital lobe The occipital lobe analyses what we see and is, therefore, responsible for sight. If it is damaged, blindness or partial blindness can result. 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. 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 with ease 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, it is more widespread, then this can produce a complex range 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 19

22 Acquired brain injury rehabilitation Our ABI services provide the highest quality sub-acute and transitional rehab for adults with acquired brain injuries. We offer first class facilities and an experienced multi-disciplinary team. Our stable structure provides people with brain injuries with a foundation for rehabilitation and reintegration. We operate three purpose-built services in Manchester, North Wales and West Lothian and also offer long term support across the UK [email protected] 20

23 Specialist ABI Outreach Team Community rehabilitation for people with acquired brain injury We provide interdisciplinary, specialist, community based rehabilitation services for adults with single incident, non-progressive acquired brain injury in Greater London and Essex. We are an evidence based service which adheres to the highest quality standards including national and Government guidelines. Disciplines available Clinical Neuropsychology Occupational Therapy Physiotherapy Speech & Language Therapy Rehabilitation Assistant Services offered Assessments/reports; treatment programmes; vocational rehabilitation; brain injury education (e.g. for clients, family/friends, carers/support workers, employers) Intervention aims and goal setting We aim to increase clients' independence, communication and involvement in work, study, leisure activities and improve interpersonal relationships. Treatment is goal orientated. Goals are decided between clients, their relatives/carers and the therapists, ensuring that each treatment package is individualised to suit a client's particular needs. Geographical service criteria Clients registered with a GP in Barking & Dagenham, Enfield, Haringey, Havering, Redbridge, or Waltham Forest. Clients registered with a GP in West Essex, Southwest Essex or Southeast Essex; living within 60 minutes drive from Homerton University Hospital and with funding approved by the local NHS. Private clients living within 60 minutes drive from Homerton University Hospital. Referral process Please contact the team for a referral form: Specialist ABI Outreach Team Homerton University Hospital Homerton Row London, E9 6SR Tel: Fax: The Brain Injury Handbook 21

24 BRAIN INJURY HAS DEVASTATING AND LIFE-CHANGING CONSEQUENCES FOR THE INJURED AND THEIR LOVED ONES. THAT S WHY IT IS VITAL TO SECURE THE HIGHEST QUALITY MEDICAL CARE, REHABILITATION, EMOTIONAL AND PRACTICAL SUPPORT THAT YOU DESERVE. THAT S WHY WE RE HERE l l l l BTMK Injury s trusted team has a proven specialism and track record of successfully pursuing high value brain injury compensation claims. We understand the physical, emotional and financial effect brain injury has on the lives of patients and their families this knowledge allows us to claim the optimum level of compensation needed to provide for your family s future security. Our holistic approach starts with our first patient and family consultation and continues throughout and beyond the entire liability and claim process. We are an accredited member of the Headway (The Brain Injury Association) panel. This ensures first class brain injury services and levels of client care. BTMK Injury s acclaimed brain injury team is one of the UK s finest. Our knowledge and care has recovered millions of pounds on behalf of our clients, often achieved through our NO WIN, NO FEE service. Since returning to work after my own first hand experience of brain surgery, I am absolutely driven to use my personal empathy and professional knowledge to make a difference to the lives of those that have been genuinely hurt and to their families - Johanne Turner, BTMK Injury Solicitor She s a diamond, a one-off...knowing what Jo had been through herself, I knew that if anybody could secure a fulfilling future for my mum, it would be Jo and the BTMK team. Thank you - Mr C, who s mother received a substantial seven figure settlement for an acquired brain injury. 22 BTMK INJURY BTMK Solicitors, 19 Clifftown Road Southend-on-Sea, Essex SS1 1AB

25 Section 2 The brain injury itself Traumatic brain injury (also known as a TBI) is not usually caused by one event but by a series of events. These are generally classified as primary and secondary events. The primary event is direct damage to the brain at the point of impact. The secondary event refers to the complications that may arise in the minutes, hours and days following the impact these are due to a lack of oxygen and the reaction of the brain to the initial injury. It is important to remember that the injuries described cover a range of possibilities. They will not apply to everyone who has sustained a traumatic brain injury. Primary injury There are two main kinds of primary injury: penetrating or open head injury and closed head injury, which is much more common. Penetrating or open head injury A penetrating or open head injury is caused when an object fractures the skull and penetrates the brain resulting in direct damage to the soft tissue. Examples include colliding with a sharp edge of a brick wall or a bullet piercing the skull and entering the brain. In this kind of injury the damage is usually localised and confined to the immediate area of the injury, resulting in quite specific problems similar to those caused by a stroke. However, there are times when the head is also badly shaken, which may result in more widespread injury to the brain. Closed head injury A closed head injury involves rapid acceleration and deceleration or rotation of the head. The damage occurs when the head quickly changes speed of motion and is stopped abruptly, for example, by hitting the dashboard of a car. The sudden and violent movement causes the brain to shift and rotate within the skull. This stretches and shears the delicate connecting nerve fibres, resulting in extensive damage called a diffuse axonal injury. With the violent movement, blood vessels tear and the surface of the brain mainly the frontal and temporal areas is lacerated as it rotates across the bony ridges inside the front of the skull. Further damage and bruising can be caused to the front and back of the brain as it rebounds backwards and The Brain Injury Handbook 23

26 forwards against the rough inside surface of the skull. Additionally, the skull may be fractured in the area where the head hit the fixed surface. If the fracture causes a piece of bone to exert pressure on the brain, this is called a depressed fracture. This can cause significant problems. The diffuse axonal damage can result in permanent disability. Secondary injury Unfortunately, secondary injury damage can be caused following the initial injury due to a number of complications. These often include a disruption of the oxygen supply to the brain, which can occur at the time of the accident if the airways are blocked (e.g. by a chest injury), or may occur if there is excessive bleeding from other injuries, which can reduce blood pressure. Later, blood clots may form as a result of small blood vessels being torn in the initial injury. These can press on the brain and cause further damage, though they can sometimes be removed in surgery. In addition, the brain may swell in the days following the accident and cause pressure, called intercranial pressure, as the brain is forced against an unyielding skull. This again can cut off the blood supply to the brain and cause additional injury to its surface. The complications described here will not occur with all brain injuries. Be assured that the paramedics at the scene of an accident and the medical teams monitor the person with the injury very closely. They do all that they can to prevent these complications from happening, or at least to minimise the damage that might be caused should complications arise. There are two further factors when considering the extent of brain damage the depth and duration of coma and period of post-traumatic amnesia. These are both early indicators and can provide only an educated guess about eventual recovery. As with the primary and secondary injuries previously described, there are likely to be individual differences in eventual outcomes. The process of recovery from coma is gradual. The individual will typically emerge over time rather than suddenly from this state, becoming progressively responsive to their environment and eventually regaining full consciousness. What is a coma? When we hear the word coma many of us think of a person in a state of complete unawareness. In reality, coma simply means unconsciousness, of which there are varying levels. The person may be in a deeply unconscious state where no amount of stimulation will elicit a response. However, in other cases, a person who is in a coma may move, make noises or respond to stimulation. 24

27 The brain injury itself Section 2 A person who remains unconscious for over six hours is likely to have sustained a severe brain injury. Loss of consciousness for 15 minutes or less suggests a mild brain injury and the period between the two suggests a moderate brain injury. See the table below. While a person is in a coma, the medical team may conduct a number of assessments. The Glasgow Coma Scale (or GCS) is universally used to assess the level of consciousness (or unconsciousness) and later used to determine the level of recovery or deterioration. The scale has three categories: Eye opening Best motor response (physical movement) Verbal response Each of these categories is scored from one to 15. The lower the total score on admission, the more severe the injury is assumed to be. What is post-traumatic amnesia? Amnesia refers to memory loss. Posttraumatic amnesia (PTA) is a particular kind of memory loss that lasts for a specific amount of time following an injury. It can be for minutes, hours, days or weeks, during which time the injured person can be disorientated and unable to connect continuous memories or events. They can get on with everyday things such as having breakfast, washing and so on, but because they do not have full memory function they cannot remember doing these things. Similarly, people in this state can engage in conversation but may forget that they have spoken to someone. There may be a permanent memory loss of events immediately prior to the accident and of the accident itself. The duration of PTA is another indicator of long-term effects following brain injury. The more severe the injury, then the more likely it is that the person will experience significant long-term physical, emotional and cognitive problems. Of course, PTA is only an indicator and there are many people who make a better or faster-thanpredicted recovery. Severity of injury according to PTA, loss of consciousness and coma Severity PTA Loss of Consciousness/Coma Mild Less than 1 hour Less than 15 minutes Moderate 1 24 hours 15 minutes 6 hours Severe More than 24 hours More than 6 hours The Brain Injury Handbook 25

28 Christchurch Court provides specialist neurological rehabilitation for adults who are medically stable and require rehabilitation in a community setting as a result of accident, injury or illness. We are able to support individuals during each stage of the rehabilitation process; we believe a progressive, structured care pathway, supported by an individualised care plan is vital in achieving the best possible outcomes. christchurch group Neurological Rehabilitation The main services we currently provide are:- Active and slow stream rehabilitation Transitional rehabilitation Assessments Community outreach services Our primary objective is to maximise recovery and independence and move individuals through their care pathway as quickly as is safe to do so. We also support people who have progressive or enduring social care needs who are unable to live independently in the community. All of our services are supported by a full multi-disciplinary team, led by a Consultant in Rehabilitation Medicine, and include neuropsychology, physiotherapy, speech and therapy, occupational therapy and experienced Rehabilitation Assistants. Tel Web [email protected] Christchurch Court provides specialist neurological rehabilitation Christchurch Court provides specialist neurological rehabilitation for Christchurch adults who are medically stable and require rehabilitation for adults who Court are medically provides specialist stable and neurological require rehabilitation in a for community in a adults community who setting are setting medically as a as result a result stable of of accident, and accident, require injury injury rehabilitation or or illness. illness. We in are We a community able are able to support to support setting individuals as individuals a result during of during accident, each each stage injury stage of or of the illness. the rehabilitation We rehabilitation are able process; to process; support we we individuals believe believe a a during progressive, each stage structured of the care pathway, rehabilitation pathway, supported supported process; by by an we an believe individualised a progressive, care care plan plan structured is is vital in care in achieving pathway, achieving the supported the best best possible by an individualised outcomes. care plan is vital in achieving the best possible outcomes. The The main main services services we we currently provide are:- The Active Active main and slow and services slow stream stream we currently rehabilitation provide Assessments are:- Transitional Active Transitional and rehabilitation slow rehabilitation stream rehabilitation Assessments Community outreach services Transitional rehabilitation Community outreach services Our Our primary primary objective objective is to is to maximise maximise recovery recovery and and independence Our and and primary move move individuals individuals objective through through is to maximise their their care care recovery pathway pathway and as as independence quickly quickly as as is is and safe move to do individuals so. We also through support their people care who pathway have as progressive quickly as or is safe to do so. We also support people who have progressive or safe enduring to do social so. We care also needs support who people are unable who to have live progressive independently or enduring social care needs who are unable to live independently enduring the community. social care needs who are unable to live independently in the community. in the community. All of our services are supported by a full multi-disciplinary All of All our services are supported by a full multi-disciplinary team, of our led services by a Consultant are supported in Rehabilitation by a full multi-disciplinary Medicine, and team, team, include led led by neuropsychology, by a Consultant a Consultant in in Rehabilitation physiotherapy, Rehabilitation speech Medicine, Medicine, and and and therapy, include include occupational neuropsychology, neuropsychology, therapy and physiotherapy, experienced Rehabilitation speech speech and and therapy, Assistants. occupational occupational therapy therapy and and experienced Rehabilitation Assistants. christchurch christchurch Neurological Neurological Rehabilitation Rehabilitation group group group Neurological Rehabilitation WA2171 Half page brain inj handbook ad.indd 1 03/09/ :42 Tel Web [email protected] 26 Tel Tel Web [email protected]

29 Section 3 Section The consequences 3 The of brain consequences injury of brain injury Section 3 What are the consequences of brain injury? Depending on the nature and severity of Depending on the nature and severity the brain injury, the consequences can range of the from injury, quite the subtle, consequences e.g. temporary of a impairments brain injury in can thinking range and from behaviour, quite subtle, to e.g. permanent temporary cognitive impairments impairments in thinking and personality and behaviour, changes to that permanent can be cognitive extremely challenging impairments for both and personality the injured changes person and their which family can and be devastating friends. for both the injured person and their family and friends. In the early weeks following a brain injury, there In the will early almost weeks certainly following be profound a brain physical injury difficulties. there will Some almost of these certainly will be overcome profound in the physical following difficulties. months, Some some of will these take much will be longer overcome and some in the will following be permanent. months, some will take much longer and some will be permanent. Research indicates that around 90 per cent of Research severely-injured indicates people that around overcome 90 per most cent of of their people physical with a difficulties severe brain within injury the overcome first most of their physical difficulties within the year. first year. Although physical difficulties can present problems, Although physical it is the difficulties cognitive can difficulties present and problems, personality is the changes cognitive that difficulties are the and most distressing, personality changes since these that are have the a most greater distressing, impact since these on social, have a work greater and impact family on life. social, work and family life. Remember, the nature of brain Remember, injury is unique the and nature not all of of brain these injury problems is will unique be experienced and not by all everyone. of these problems will be experienced by everyone. In the early days, the injured person is likely to find that they will tire easily after any activity, even chatting to friends or watching television, but particularly after tasks that require concentration or physical effort The The Brain Brain Injury Injury Handbook 23

30 Physical problems Physical problems usually result from localised damage either due to a blood clot putting pressure on the brain or by a penetrating or open injury. Section 1 outlined how localised damage can produce specific problems, i.e. where only the skills controlled by a particular area are affected. However, a closed head injury can produce additional difficulties for the injured party, caused by the rapid acceleration and deceleration of the brain inside the skull. Physical problems include difficulties with movement, e.g. weakness or semi-paralysis on one side of the body; balance and coordination issues; speaking and swallowing disorders; and loss of taste, smell or regulation of body temperature. Problems common to all brain injuries include headaches and fatigue. Post-traumatic epilepsy will be referred to in more detail on the next page. Headaches Headaches, which can continue for many months, are common following even a mild brain injury. They can vary in intensity from fairly mild to extremely severe, and stress and worry about the future can aggravate them. Additionally, the headaches themselves can produce great anxiety due to the perceived fear that there is something else wrong with the brain. They may also be a warning sign that the injured person is doing too much. A stress-management programme can help, as can systematic muscle relaxation exercises. However, while stress and tension are usually the main triggers, a doctor should always examine persistent headaches as they can have many causes and a thorough check-up is recommended. Fatigue Fatigue is one of the most debilitating consequences of a brain injury, as it influences everything that the injured person does, both physically and mentally. A person s emotions can also become raw when they are tired. In the early days, the injured person is likely to find that they will tire easily after any activity, even chatting to friends or watching television, but particularly after tasks that require concentration or physical effort. This can be very depressing, particularly if the injured person is aware of this change. They will often try to push themselves to complete a task in the belief that they might overcome their fatigue. This is seldom the right thing to do as it can lead to increased fatigue in the long-term. It takes time to build up energy. Taking rest periods both in between activities and when feeling tired is essential. A useful strategy to help cope with fatigue is to keep a diary of energy levels throughout the day and evening over a week or two. 28

31 The consequences of brain injury Section 3 Epileptic seizures occur when the normal activity of the brain is disrupted suddenly. This disrupted or epileptic activity may be localised to one particular area of the brain or it may involve all parts of the brain. The seizure that is witnessed as an outward sign of this activity will vary depending on the part, or parts, of the brain in which it is occurring. Seizures are most often classified according to where the seizure activity begins and fall into three main categories: partial, generalised and secondarily generalised. A useful strategy to help cope with fatigue is to keep a diary of energy levels throughout the day and evening over a week or two. The differing periods of high and low energy can then be monitored and tasks can be organised accordingly. Often the family has to ensure that the injured person doesn t overdo things. Tell-tale signs of fatigue can be a drawn, tense look, a pale or greyish pallor, glazed eyes, irritability and a tendency to be more distracted or more talkative and, ironically, becoming restless and undertaking too much activity, making an increased number of mistakes. Partial seizures Partial seizures occur when the epileptic activity begins in just one area of the brain. The person may be fully or partially aware of what is happening and may be confused. The nature of the seizure itself depends on the area of the brain affected by the activity and may include unusual tastes or sensations, automatic movements such as fiddling with objects or clothes, wandering around, mumbling or making chewing motions. If a person is experiencing this type of seizure, gently guide them away from anything potentially dangerous. Speaking gently and calmly can help to reorientate them as the seizure ends. Stay near them until they have recovered. Post-traumatic epilepsy Epilepsy is a neurological condition where a person can experience seizures that are a result of activity in the brain. It can develop at any time following a traumatic brain injury but most commonly does so within a year of the event. The possibility of this happening depends on various factors, including the type of injury and the location and extent of the damage. The Brain Injury Handbook 29

32 Generalised seizures In generalised seizures, the whole brain is affected by the activity and the person becomes unconscious. There are different types of generalised seizures depending on the effect of the seizure upon the body. The main types of generalised seizures are as follows: Absence Seizures An absence seizure takes the form of a staring spell. The person suddenly seems to be absent. An absence seizure involves a brief loss of awareness, which can be accompanied by blinking or mouth twitching. Individuals who experience such a seizure in potentially hazardous situations should be gently guided away from the source of danger. An absence seizure in which there is also a sudden loss of muscle tone is called an atonic seizure. Myoclonic Seizures A myoclonic seizure is one characterised by a brief episode of lightning-like jerks to the limbs or other parts of the body which then recover immediately. Tonic Seizures Tonic seizures involve powerful and involuntary muscular contractions that last up to about 30 seconds. In this tonic phase no respiratory movements occur and the individual may bite their tongue and clench their teeth. Clonic Seizures Clonic seizures are distinguished by alternate involuntary muscular contraction and relaxation in rapid succession. Uncontrolled muscular jerking and convulsions of the limbs are therefore the primary features of clonic seizures. Tonic Clonic Seizures Tonic Clonic seizures involve both involuntary muscular contraction with the body becoming rigid and uncontrolled muscular jerking due to alternate contraction and relaxation of the muscles. Tonic Clonic seizures may last for a few seconds or several minutes. If a tonic clonic seizure does not resolve after five minutes, or if such seizures follow each other in rapid succession, emergency medical help should be called as the person may be entering a life-threatening state known as status epilepticus. In the case of tonic, atonic and myoclonic seizures, there is little that can be done to assist the person, other than checking if they have hurt themselves and staying with them until they recover. It has been suggested that the risk of suffering from an epileptic fit following a brain injury is increased by up to 12 times. For those people who have suffered a mild injury or skull fracture, it is thought that the risk of post-trauma epilepsy is increased by three times. All seizures can occur without warning and vary in length. However, most last for a specific time related to each person and do stop naturally. Many people with epilepsy take antiepileptic drugs. Although such drugs do not cure epilepsy, they do stop the seizures from occurring in up to 80 per cent of cases and may be prescribed as a preventative measure following a severe brain injury. The law states that if you have a seizure of any type, you must stop driving and inform the Driver and Vehicle Licensing Agency (DVLA) whether or not those seizures are epileptic, including nocturnal seizures (asleep seizures). To be able to drive a car again, you have to be free of all seizures for one year. The regulations are slightly different for driving a larger vehicle, such as a bus or a lorry. (See Section 7, p.116, for contact details for the National Society for Epilepsy.) Secondarily generalised seizures If the seizure activity spreads from a partial seizure to the rest of the brain, it is known as a secondarily generalised seizure. 30

33 Dedicated to changing the lives of neurologically disabled clients Kings Lodge caters for the needs of clients with neurological disability offering: Long Term Care Slow Stream Rehab Respite Day Care All supported by an experienced Multi-Disciplinary Team. We are able to take clients with a wide range of clinical needs associated with brain injury. Kings Lodge has 38 large single rooms all with ensuite wet room, spacious communal areas and corridors. We access the local community and have a large minibus and single disabled use car. Kings Lodge, Kings Cross Lane, South Nutfield, Surrey RH1 5PA Tel: Web: Looking for information on childhood brain injury? Visit for information and practical advice New The Brain Injury Hub is a brand new information website for parents and other family members of children and young people with acquired brain injury. Whether you re a parent, grandparent, friend or just want to know more, the Brain Injury Hub is packed full of information on all aspects of childhood brain injury, including: being in hospital, returning to school, talking to others about brain injury, parent and sibling wellbeing and much more. Website features: Fully referenced information Easy-read versions of all materials Bookmark pages to read later Discussion forum for parents to pose questions and share experiences Dedicated information for teachers We ll be busy...as a bee for you and your family. As specialist brain and spinal injury solicitors our team will make sure that you get the help, support and compensation due to you. For NO WIN NO FEE contact Shelly. Call [email protected] personal-injury Offices in Birmingham, Shirley and Sheldon Charity registration no Brain injury hub Providing legal advice for generations The Brain Injury Handbook 31

34 Cognitive problems When thinking of cognitive problems, it is useful to remember that no human skills operate in isolation. We depend on a combination of several skills to carry out individual tasks. For example, if we want to remember what someone is saying to us, we first have to be able to focus on what they are saying (concentration), understand what they are saying (comprehension) and keep up with the flow of conversation (speed of thought). Similarly, a loss of one skill can affect another. For example, a memory problem can actually be the result of an attention problem. For this reason, it is important for the injured person to have a neuropsychological assessment, which will identify more precisely the areas of difficulty. A neuropsychological assessment is also vital to determine which rehabilitation strategies are most likely to be useful to the individual in terms of enabling them to compensate for their acquired cognitive difficulties. The most common issues, for which strategies have been listed here are, attention, speed of information-processing and memory. Attention There are three interrelated areas of attention difficulty that can lead to frustration after brain injury. These are difficulties with concentration, selective attention and dividing attention. Concentration Concentration is the ability to keep attention to a task or an idea. Concentration therefore involves maintaining attention to a subject over time. Concentration also involves being able to ignore distractions when you want to get on with a task. For example, being able to ignore people walking past your window when you are working in your office. In the weeks following brain injury, a person s ability to maintain concentration is likely to reduce dramatically. However, this usually improves greatly in time and with sufficient stimulation. It is important to be aware of how long the person s attention span is and to try to work within it. Selective attention Selective attention is the ability to attend to information when there is a lot of similar information also available to you at the same time. An example of selective attention is being able to take in what a friend is saying to you across a busy restaurant where there are a lot of other people talking. After a brain injury the person may find it more difficult to select out what their friend is saying to them from the other conversations going on in the restaurant. When such selective attention difficulties are experienced it is common for the individual to avoid busy, public places as they have problems communicating with others against the background noise. 32

35 The consequences of brain injury Section 3 Dividing attention Divided attention is the ability to split our attention between competing items of information. A problem with being able to divide attention might be displayed in an inability to write a message while simultaneously talking on the telephone, or to make a cup of tea while actively following a conversation. How to help The best way to help with concentration and attention problems is to keep all possible distractions and interruptions to a minimum. Try to ensure that only one task is attempted at a time. Talk slowly and clearly so that the injured person can keep track of what is being said and do all that is possible to minimise competing demands on their attention. For example, if the injured person is making a cup of tea, do not distract them. Try to encourage them to attempt tasks that require concentration in the morning when they will be feeling relatively fresh and capable of completing such tasks without difficulty. Attention span can be increased with practice. One way of doing this is to pick a task that requires concentration, e.g. looking through a telephone directory for a particular name, and set a time to be spent on the task. Initially, the task should be easy and the allocated time should be within or slightly above the person s attention span. The complexity of the task can gradually be increased and the time allocated shortened. It might also be appropriate to introduce a reward for successful completion of a task. Speed of information-processing Many people have difficulty absorbing new information, whether it is presented verbally, visually or in written form. A reduction in speed of thought is common even after a mild injury. Difficulties include being slow to respond to conversation, inability to understand instructions and problems adding up figures. Slowed thinking makes activities such as decision-making very hard. Before any conclusions can be reached, the reasons for those conclusions might have been forgotten. How to help There are various ways that we can help with information-processing problems. Ask the injured person to repeat what has been said to them to make sure that they fully understand the information given. Talk at a slow, steady pace. If a person talks too quickly, the individual may still be trying to digest the first pieces of information received. Anything that follows may be lost. Frequently confirm that the person understands. Order the information, because it can be digested more easily when broken into manageable units. Any rehabilitation team will be able to help and advise on how to do this. Physical reactions will often be slowed and the injured person may take much longer to complete everyday tasks. These reactions are usually beyond their direct control and allowances will need to be made. It is important to plan ahead, allowing plenty of time for tasks to be completed. The Brain Injury Handbook 33

36 Memory Memory problems are, for many, the major area of difficulty. The fault lies with shortterm or working memory. Several structures within the brain are involved in learning and remembering. Damage to any of these can produce memory impairment. Of course, the memory system is very complex and there are many aspects of memory that can be affected by damage to different parts of the brain. Examples include: Verbal (names, words, etc.) Visual memory (faces, pictures, routes, etc.) Prospective memory (remembering to do something in the future) Commonly reported difficulties include: Remembering what has been said Remembering names Getting details mixed up Following the storyline/plot of a television programme Keeping track of a conversation Remembering where things have been put To understand memory impairment and ways of addressing it, it may help to understand how memory works. Learning and remembering involves three stages: Absorbing information Storing information Retrieving information Brain injury can cause a breakdown in any of these stages. Absorbing information Before we can remember anything, we first have to pay attention to what we hear, read or see and then absorb the information. This process can be problematic following brain injury because of the concentration and information-processing issues previously described. Problems can occur if too much information is offered at once or if the information being given is too complicated. How to help There are various strategies that can help with this stage in the memory process, including simplifying information, particularly written information. For example, an injured person would better comprehend and remember how to operate a DVD player if short and easy-to-understand written instructions were given to them. Try to use word association getting the injured person to link the information to something that they are already familiar with. 34

37 The consequences of brain injury Section 3 Storing information Once we have received the information, it has to be stored either for immediate use or for recall later. People who have not sustained a brain injury who do not make a concerted effort to remember new information may forget it. The same is true for those with brain injury, but it requires strategic thought to ensure information is recalled. How to help Get the injured person to repeat out loud the information that is to be learned and then test their recall at intervals. Retrieving information Once stored, we have to be able to access information as and when needed. This can be problematic for all of us at times but more so for some people with memory impairment. Many of us have had the tip of the tongue experience or have needed prompting before recalling something. An exaggerated version of this situation is true for people with memory impairment. How to help It can help to retrieve the information if a cue or prompt is given, e.g. the first letter or sound of a word, or by making a word connection. The injured person could go through the alphabet to give himself, or herself, a prompt. Similarly, if they have mislaid something, they could be encouraged to think of the last time or place they had it. Retracing one s steps in this way often results in the lost item being found. The Brain Injury Handbook 35

38 Registered Charity Brain injury specialists Solicitor Darren Hughes offers not only legal expertise but a unique understanding of living with a catastrophic injury Our specialist team of brain injury solicitors has a proven track record of: handling complex personal injury and clinical negligence cases involving brain injuries providing guidance and support to clients and their families during the rehabilitation and legal process securing interim payments for accommodation and care providing a national service from our network of UK offices offering free, no obligation consultations including visits at home and at hospital providing no win no fee arrangements in most cases, in addition to Legal Aid for some clinical negligence matters Hannahs are committed to offering lifelong support and opportunities for children and adults with a range of disabilities - Childrens home & Short Breaks - Hannahs School - Young Adult transition - Enterprise - Imaginative experiences - State of the art facilities - Expert support & therapy Learning Inspiration Experience Friends Therapy Fun C M Y CM MY CY CMY K For helpful, friendly advice please call or [email protected] to contact an expert brain injury solicitor Chester Wrexham Ashton-under-Lyne Liverpool Birmingham London Proud corporate member of Headway, the brain injury association Find out more... Call Seale-Hayne Call Ivybridge Search When life twists and turns... You ll be glad you added us as a friend Sometimes putting your trust in others isn t always plain sailing. If you ve been a victim of clinical negligence or feel you have been mistreated then we can help. Notifications Mel Steadman commented on your status: Congratulations Sara, hope you and baby are doing well! x 19 hours ago You also commented on your status: Babyʼs fine, not happy with how I was treated though : ( 2 hours ago Mel Steadman also commented on your status: Call these guys and explain your situation 7 hours ago You also commented on your status: Thanks Mel, Iʼll give them a call now x 7 hours ago Call us today on Personal Injury Clinical Negligence Road Traffic Accidents Accidents At Work Employment Law Professional Negligence Conveyancing Commercial Litigation Commercial Property Wills & Probate EAD Solicitors LLP is a Limited Liability Partnership registered in England (registered number OC334289) and is authorised and regulated by the Solicitors Regulation Authority (487037). A list of members of the LLP is available for inspection at our registered office Prospect House, Columbus Quay, Liverpool, L3 4DB, together with a list of those non-members who are designated as partners. Any reference to a partner in relation to the LLP means a member or employee of, or consultant to, the LLP. 36

39 1 Sewardstone Close & Acorn Court ABI 1 Sewardstone Close and Acorn Court ABI are both purpose built units for people aged 18+ with an acquired brain injury. We offer residential and nursing placements including respite services and intermediate placements to clients with all different levels of physical or cognitive ability. For more information please contact Jane Heath. GLENSIDE LEADERS IN NEURO REHABILITATION NEWS FROM GLENSIDE NEW APPOINTMENT AND NEW SERVICE Glenside, specialist providers of neurological rehabilitation, are delighted to announce the appointment of Dr Simon Fleminger as the Lead Consultant for Neurobehavioural Services. Dr Fleminger is known nationally and internationally for his work and is a prolific figure in the world of neuropsychiatry, having researched, published, and lectured extensively both in the United Kingdom and internationally. Alongside the ongoing development of Glenside s Salisbury services, where Dr Fleminger will be based, Glenside has also opened a new community rehabilitation service in Farnborough which offers a unique mix of living options including apartments, studios and individual bedrooms, dependent on individual needs, adding to the existing pathway offered. 1 Sewardstone Close Sewardstone Road Waltham Abbey London E4 7RG Acorn Court ABI Watercolor Village The Kilns Redhill, RH1 2NX [email protected] To find out more visit: call: or [email protected] The Brain Injury Handbook 37 Enable Care_Brain Injury Handbook Ad_120x85.indd 1 06/08/ :27

40 Strategies for dealing with memory problems Dr Andrew Bateman of the Oliver Zangwill Centre in Cambridgeshire explains. Memory problems are among the most common consequences of any form of brain injury. Forgetting to do things, forgetting what has happened, forgetting new names or routes all of these disrupt day-to-day life and can lead to dependence on others for reminders. At the moment, it is not possible to restore damaged memory systems in the brain. However, there is much that can be done to help individuals to function more effectively in everyday life, through the use of strategies that enable the person to compensate for impaired memory. Good use of memory aids such as a diary, a wall calendar, a pill reminder, and so on, can make a huge difference in coping with daily remembering. One useful source of advice is a helpful book, Coping with Memory Problems: A Practical Guide for People with Memory Impairments, their Relatives, Friends and Carers by Linda Clare and Barbara Wilson (available from In recent years, technology has been developed that can also help. Electronic organisers, personal digital assistants and smart phones all have the facility to provide reminders of things to do at specific times. For those who are familiar with technology or who have the ability to learn how to use quite complex technology, these can be useful memory aids but may require training. Experience of using these devices prior to the injury is not surprisingly an indication of successful use after the injury. Unfortunately, for many people with cognitive problems after brain injury, such aids are too complicated and off-putting. One simple-to-use solution is Google Calendar to set up messages that can be sent at given times to a mobile phone as an SMS text message. Another system that continues to be offered by the Oliver Zangwill Centre is 38

41 The consequences of brain injury Section 3 called NeuroPage. This system involves the person with the memory impairment wearing an ordinary radio pager or carrying a mobile phone. Reminders, chosen by the wearer, are received from a central computer at the right time. Originally developed in California, the system has been shown to be effective for people with memory problems as well as reducing the strain on carers. The difference between NeuroPage and Google Calendar is the level of support available, that is to say, one is a DIY solution, and the other entails a subscription that means there is ongoing support from an administrator who can help put the messages into the computer, supervise and update schedules. A recent research study has been completed that demonstrated the benefit of sending just a few very simple messages per day at random times to alert the individuals to pay attention to their goals for the day. The message was a simple STOP message that reminded the research participants to stop, think, organise and plan. Used in conjunction with a goal management system, this approach is also now being used with some patients. Although memory may improve somewhat in the months following a brain injury, improvement can be limited notwithstanding the benefits of memory training. An overall ambition of neuropsychological rehabilitation is to enhance the injured person s ability to cope with memory loss through the consistent use of various types of strategies and memory aids. Further information on NeuroPage or other systems being developed at the Oliver Zangwill Centre is available from the centre. (See Section 7, p.128, for contact details.) How to help As highlighted previously, one of the best ways to help with memory loss is to write everything down in a diary or on a calendar, or to record information on a dictaphone, which are very useful for noting important conversations, for example, with a doctor or lawyer. To do lists are also very helpful for reminding people when something needs to be done. Electronic personal organisers have the potential to contain all the information a person might need, e.g. appointments, names, addresses, to do lists, etc. They can be quite complicated to use and would not suit everyone, though there are alternatives, such as an alarm watch to remind a person when to take medication. It is very important to become as organised as possible, e.g. remembering to look in the diary or at a wall chart every day, establishing a routine of putting keys, wallet, diary, medications, etc., in the same place, positioning items needed for the next day where they are most likely to be remembered, and so on. An individual may be resistant to using memory aids. This may be because they are embarrassed to do this in public or because they fear that their memory will not improve if they depend on them. This is not true. Another reason for failure to use aids may be a lack of acceptance of the new circumstances or difficulty mustering the self-discipline required. The Brain Injury Handbook 39

42 Executive skills Executive skills involve reasoning, planning, organising and problemsolving. How to help It is very difficult for people with frontal lobe damage to function properly in unstructured situations. A guiding principle when trying to compensate for difficulties with executive skills is to impose structure on tasks or activities. As described in Section 1, executive skills are associated with the frontal lobes. People with damage to this part of the brain are often unable to reason things through logically. They may be inflexible in their thinking, becoming fixed on one particular thought and unable to consider alternatives or another person s point of view. In conversation they may express one set opinion repeatedly, believing that theirs is the only correct view even in the face of contradictory evidence. Conversely, they may lose their train of thought and go off on a tangent. Whichever of these may apply, conversations can be very frustrating and unrewarding for others, particularly if the injured person is unable to recognise this. On a practical level, these reasoning difficulties contribute to poor planning and problem-solving because the person cannot analyse problems, consider options and think of possible solutions. In general, people with frontal lobe damage have difficulty in planning, monitoring and evaluating their performance and behaviour. They do not learn from their mistakes and cannot organise themselves. For example, extreme difficulty is often experienced in setting future goals and in organising steps to achieve those goals once set. Insight and awareness An extremely important area of cognition, again associated with the frontal lobes, is awareness of self and of others. After brain injury, many individuals are unaware of the effect their words and actions may have on others and so do not see the need to amend their behaviour in particular situations. There is a lack of insight regarding difficulties, with the type and degree of insight varying from person to person as time passes post-injury. For example, some people may have a good understanding of their physical problems but limited understanding of their cognitive issues. Similarly, some are able to describe their cognitive difficulties but lack awareness of how these affect their ability to undertake activities in their everyday life. Many people with a brain injury have a tacit understanding that they are not the people that they used to be. They experience difficulties at work and in social situations but may have minimal insight into their own contribution to these, perhaps tending to blame external factors. 40

43 The consequences of brain injury Section 3 Lack of insight can cause problems for the family if the injured person insists on trying to do things that they are now unable to do and which could prove detrimental. It is, of course, important to remain aware of such situations, for example, driving or working with potentially dangerous machinery. Again, the rehabilitation team will be able to advise on safety issues. Someone lacking insight may not take on board compensatory strategies that would help them. People may never fully regain their awareness of self and others and may, as a result, continue to misread social and professional situations, displaying poor interpersonal and social skills. How to help One can help by making the injured person aware of what they can and cannot do. Lack of insight is sometimes referred to as denial and people who are confronted with their difficulties may well become anxious, depressed or angry. It is important to highlight the positives while addressing the negatives and to approach these in a supportive and non-judgemental way. Language and communication skills Severe language problems may be experienced by someone who has sustained local damage to the language centres (e.g. a left hemisphere stroke) with difficulties expressing thoughts and understanding others, although this is less common following a closed head injury. Word-finding difficulties or inappropriate word selection are fairly common and some injured people may feel the need to provide lengthy descriptions or explanations to overcome their inability to find a word or to buy time to think of the correct one. For example, they might seem to talk around a subject, using many words where only a few are needed. Some people may have difficulty in understanding sarcasm or multiple meanings in jokes or in identifying individual words or breaking down the structure of sentences to extract the meaning. The injured person is often unaware of their errors and can become frustrated or angry, placing blame for communication difficulties on the person with whom they are speaking. Reading, writing and spelling are often more of a challenge than the capacity to speak and understand the spoken word. Simple and complex mathematical skills are also frequently affected. How to help A speech and language therapist (SLT) will usually deal with problems arising with communication skills. (See Section 4, p.72 for an account by Kate Swinburn.) The SLT may recommend specialist literacy classes for problems with written language skills and will advise on appropriate strategies and interventions. The Brain Injury Handbook 41

44 Assessing damage to the executive system Dr Ashok Jansari, Reader in Cognitive Neuropsychology, University of East London, explains the Jansari assessment of Executive Functions (JEF ) tool. The human brain is a very complex organ, easily more complicated than the most sophisticated computers ever created. While the brain generally works as one unit, there are specialisations within it such that, for example, a lot of visual recognition occurs at the back of the brain roughly behind the ears. The most evolved section is the frontal part, which acts as a kind of manager co-ordinating what the rest of the brain does and therefore is known as the executive system. When the executive system is damaged, then a person can end up with a variety of problems in areas such as decisionmaking, planning, multi-tasking and adapting to new situations. This system can be affected in many different ways, for example, strokes, brain surgery or virtually any form of closed head injury as can happen in a car crash or fall, can damage the system. Being able to accurately assess the impact on someone s life of such damage is a primary aim of clinical neuropsychologists. Once this impact is known then it can possibly determine the course of rehabilitation therapy and/or decisions about going back to work as happens at Rehab s services in the UK. In 2003, I began working with students of mine at the University of East London, who were volunteers at one of Rehab s centres, to create a new tool for assessing damage to the executive system. Through the generous involvement of people at the centre, over the years, we refined this tool which is known as JEF the Jansari assessment of Executive Functions. JEF works on a standard laptop and looks like a computer game, where the individual being assessed navigates through a virtual world which is the corridors and offices of a business. The individual is told that they are working as a temp for the day in this business and have to help with some tasks, but the manager has had to go away and has therefore left them a list of tasks to perform. In 42

45 The consequences of brain injury Section 3 effect, they have to become the executive for the afternoon managing all the duties, planning what they will do, making decisions about what to do first, etc. The assessment takes about 40 minutes to do and ever since the completion of the first study in 2004, the results have shown consistently that JEF is able to reveal problems that are experienced by people with brain injury more reliably, and in a more informative way, than the currently available tests. Each individual who undertook the assessment at Rehab s centre was given a personalised profile of their performance which could be discussed with one of the key workers to help them understand their main areas of strengths and weaknesses. This profile could also be used by job coaches if they wanted to target particular types of work placements for the individual. Since 2004, the results from my various studies have been presented at conferences in Europe, Australia, New Zealand, Brazil and India. Finally, a children s version, JEFC, has recently been created to assess how the executive system develops during adolescence and how it can be affected by brain injury, as well as developmental conditions such as Autistic Spectrum Disorder (ASD) and Attention Deficit Hyperactivity Disorder (ADHD). For helping initiate this work nearly a decade ago, I am very grateful to the service users and staff at Rehab. For further information about Dr Ashok Jansari s work, [email protected] The work that started at Rehab s centre has resulted in a number of very important offshoots. JEF has now been translated into Swedish, Finnish, Belgian-French and Brazilian-Portuguese so that clinical researchers can evaluate its utility in their own countries. Also, the English version is being used by researchers in Australia, New Zealand, and recently in India, for the same purposes. Since the executive system can be impacted by a variety of chemicals, we have also conducted research to show the effect of recreational ecstasy, cannabis, alcohol and nicotine. In a very important new development, we have also shown that chemical treatment for prostate cancer, known as Androgen- Deprivation Therapy (ADT), has a significant impact on cognitive abilities. A new project is hoping to extend this work so that we can help men undergoing ADT to understand better the impact that their therapy will have on them. The Brain Injury Handbook 43

46 NO WIN NO WIN NO FEE NO FEE YOU KEEP 100% YOU OF KEEP YOUR COMPENSATION 100% OF YOUR COMPENSATION 15 YEARS OF COMPENSATION AND MORE 15 YEARS OF COMPENSATION AND MORE Keith was knocked off his bike Keith was knocked off his bike he suffered brain injury he suffered a brain injury and permanent disability and permanent disability See how we helped Keith See how we helped Keith to get his life back on track to get his life back on track at at or scan here or scan here Call us for free friendly advice Call us for free & friendly advice PERSONAL INJURY MEDICAL NEGLIGENCE COMPENSATION SPECIALISTS PERSONAL INJURY & MEDICAL NEGLIGENCE COMPENSATION SPECIALISTS In safe hands... Wolferstans have not only the expertise but also the personal approach to guide and support you through the legal process in order to achieve the best outcome and give you the help you need to get there. At Wolferstans our Serious Injuries Team ensures that those people who have suffered injuries are advised by people who have experience in dealing with these very complex claims. Andrew Warlow who is Head of the Team is a member of the Law Society s Personal Injury Specialist Panel and is a fellow of The Association of Personal Injury Lawyers. He is also on the Management Committee of Headway Plymouth and has many years experience of claims involving spinal and brain injuries. We are happy to offer a free initial interview whether at hospital, at home or in our wheelchair accessible offices to advise whether or not there is a compensation claim. Do contact one of our skilled team on or [email protected] for a free consultation. Jill Burrows [email protected] j Ruth Zanetti [email protected] Andrew Warlow [email protected] Karen Walker [email protected] 44

47 The Brain Injury Handbook 45

48 Perceptual, visuospatial and construction skills Some injured people may not be able to judge the distance between themselves and objects. Understanding and navigating our physical world Perception involves interpreting information that we receive from our senses and this ability can be damaged following a brain injury. For example, some people with senses that have been damaged may not be able to recognise the smell or taste of food, or appreciate the difference between hot and cold. Problems with visual perception are the most common, whereby the injured person may not be able to recognise visual material such as shapes, objects or familiar faces. This may be complicated by problems with vision, including double vision, restricted field of view or difficulty co-ordinating the muscles that control eye movements. If visual perceptual problems are present, these should always be checked out. Occasionally, people have what is called unilateral neglect. This means that they ignore or neglect one side of their body in practical terms, they are simply not aware it is there. This can result in accidents such as bumping into doorways or not shaving one side of the face properly. A related difficulty is being unable to see things on one side. This is not because of poor eyesight. The problem lies with the part of the brain that makes sense of what is in the field of vision. There may also be difficulty with construction skills so the individual is unable to work out how to put things together, e.g. jigsaws, etc. How to help A person (and the objects that need attention) can be seen clearly if placed on the individual s good side. Some individuals may not be able to judge the distance between themselves and objects. This can lead to all kinds of problems in daily life, such as trying to put a mug on the table and missing it, banging into pieces of furniture, not being able to judge when it is safe to cross the road, or confusion with left and right. 46

49 The consequences of brain injury Section 3 Personality change Changes in emotions and behaviour are common following a severe brain injury. Emotional and behavioural problems Emotional and behavioural changes can reflect a fundamental change in personality for some people with brain injury, while for others they may represent an exaggeration of a previous personality. The changes that occur exhibit a combination of physical damage to the emotional control centres of the brain (particularly the frontal lobes) and the psychological reaction to the injury and its effects. How an individual copes emotionally will depend to a large extent on their previous personality, level of insight and the amount of family and professional support made available to them. Again, it is important to remember that changes vary depending on the person. People suffering from a loss of control over their emotions are usually overly sensitive and tend to overreact to situations. They may, for example, burst into tears over an incident that would not have previously bothered them. Then they may not be able to stop crying, or they may express an emotion that is at odds with the situation, e.g. crying when happy or laughing when sad two emotions that can cross paths for all of us. Sometimes any attempt at concentration is accompanied by uncontrollable laughter. The person can also mood-shift rapidly, joking one minute and becoming tearful the next or being calm one moment and intensely angry the next. These unpredictable and often inappropriate emotional reactions can be a challenge for family members as well as being very unsettling for the individual. How to help It is important to reassure the injured person that they cannot help these reactions and to praise them when they are able to control their emotions. Loss of emotional control should improve in time. The person can also mood-shift rapidly, joking one minute and becoming tearful the next or being calm one moment and intensely angry the next. The Brain Injury Handbook 47

50 Anxiety Even after a relatively mild injury, many people experience anxiety as they battle with a confusing array of cognitive and emotional changes. The tasks that they cannot do reduce self-confidence, which in itself can be debilitating and can in turn create even more anxiety. People can often be frightened of going out alone and facing new situations or at times have trouble facing what were previously familiar situations. Panic attacks are common. Some can be inflexible in their thinking or can become quite obsessive in their behaviour, e.g. compulsive checking, collecting items, etc. Conversely, there can be a lack of anxiety in those who are severely injured, which may be due either to a seeming attitude of I just don t care anymore, or a lack of insight combined with the expectation that they will make a full recovery. Depression Depression is one of the most common emotional reactions following brain injury and can occur when the injured person gains more insight into their long-term outcomes. With this insight comes the realisation of the losses that they have had physically, psychologically and socially and that life will not be as it was. They may feel inadequate or guilty if they cannot fulfil their previous role, e.g. as a breadwinner. A person may have to come to terms with changes in family relationships, be unable to pursue leisure activities or they may have to abandon former career plans. Depression is a normal reaction to loss for all of us, though in many ways it can be considered as a sign of recovery since it indicates that the person recognises their new circumstances. This is essential to the success of continuing rehabilitation and the realisation of a person s full potential. How to help In order to help someone overcome anxiety and a lack of self-confidence, it is important not to be too protective, which is perhaps the natural inclination. The person can be encouraged to become independent and self-sufficient with small tasks to begin with, and the complexity of these tasks can be increased as their confidence grows. Relaxation exercises may help the person to control panic attacks. However, if anxiety becomes a problem, then professional advice from a doctor or rehabilitation team should be sought. How to help There is an obvious difference between somebody expressing normal sadness and grief, and someone expressing suicidal thoughts or an inability to express any feelings at all. If the latter is the case, then it would be advisable to seek professional counselling from someone who is experienced in brain injury. 48

51 The consequences of brain injury Section 3 Egocentricity Egocentricity is fairly common after a brain injury. The person with a brain injury behaves as if the world revolves around them and they appear not to consider the feelings and needs of their family and friends. This can be very distressing to close family members and upsetting to friends as there is an apparent lack of warmth and empathy. This can lead to social isolation for the injured person as people may turn away. Egocentricity is not selfishness or lack of feeling in the ordinary sense. The injured person, due to their cognitive impairment, may simply be unaware of the needs of others or, as described earlier, be unable to see things from another person s point of view. How to help Unfortunately, self-centred behaviour is difficult to overcome but it is important not to give in to the injured person s demands all of the time and for the family to look after its own needs also. BRAIN INJURY Specialist long and short term 24 hour residential care and rehabilitation for adults in small homes in the heart of thriving communities prokare Est Visit our website [email protected] The Brain Injury Handbook 49

52 Disinhibition and impulsivity In parallel with a loss of emotional control, brain injury can also result in a loss of behavioural control, causing disinhibition and impulsive actions. The injured person will often say and do exactly what they feel without being aware of the possible consequences. This is because in the early stages of recovery they no longer have the ability to judge situations, which can lead to socially inappropriate behaviour, such as making improper and personal remarks, being overfamiliar with strangers, using abusive and crude language or generally behaving in an unpredictable way. This can be distressing for family and friends alike as well as potentially serious for the injured person. It can be difficult to control because the injured person lacks awareness and is demanding immediate attention. Most people are able to regain behavioural control and re-learn socially appropriate ways of behaving, although some with severe injury may continue to make inappropriate remarks or be over-familiar. How to help Family and friends can help the person to re-learn what is and what is not socially appropriate by telling them firmly when they have behaved inappropriately and explaining why. It can be difficult for an injured person to accept this, as they may be aware of the problem but seemingly unable to correct it. Often a behaviour management programme can be put in place and a psychologist will be able to advise on this. Such a programme involves identifying what is rewarding for the person, e.g. praise, attention, etc., and then systematically encouraging good behaviour. 50

53 The consequences of brain injury Section 3 Loss of initiative, apathy and poor motivation Following a brain injury, some people are unable to feel enthusiasm for anything. They may lack drive, spontaneity and initiative. For example, their ability to pursue previous hobbies may have been affected and they may abandon them. They may have no desire to go out and may sit in front of the television or wander around aimlessly. Other people might appear interested and be full of good intentions but are simply unable to organise themselves due to cognitive difficulties. These might include an inability to plan, set goals, and to work towards them. Although this can be frustrating for the family, it is important to realise that the injured person is not being lazy but rather such difficulties are a direct result of damage to the part of the brain that controls emotion, motivation and forward-planning. Many tasks are simply overwhelming, so it is easier not to attempt them. How to help It is helpful to break down tasks into manageable stages. This way the injured person can be supported to work systematically towards the main goal without becoming overwhelmed by the task. In the case of apathy, relatives can make some decisions rather than leaving it all up to the person with the brain injury to decide. Try to stimulate the individual, perhaps by accessing a local support group, e.g. within Momentum Skills, or Headway The Brain Injury Association. (See Section 7, p.115 for contact details.) Irritability, impatience and reduced tolerance Increased irritability is very common following brain injury and many people have a reduced ability to tolerate any kind of pressure. They are also often intolerant of others mistakes and become impatient if kept waiting. The injured person will occasionally become very irritated by trivial matters and is likely to be short-tempered if things do not work out as expected, or if someone disagrees with them. Some are also likely to become irritated by anything that disrupts their concentration, such as children playing or doors closing loudly. This is partly because of the attention difficulties that were outlined earlier, i.e. the injured person will find it very difficult to screen out background noise and keep focused on what they are doing. How to help Adaptability, understanding and patience from family and friends are crucial in defusing the situation where a person with a brain injury is irritated. The Brain Injury Handbook 51

54 Anger rages A combination of loss of emotional and behavioural control can result in unpredictable outbursts of uncontrolled rage, sometimes for the seemingly smallest thing. These can be frightening to those around as well as upsetting for the person concerned. Many people with brain injury report that they are shocked by their loss of control and feel deep regret following an outburst. Irritability and an inability to manage anger are the result of damage to the parts of the brain (frontal and temporal lobes) that control emotional behaviour, tolerance and the ability to reason. Psychological reactions connected with the injury also play a part. For example, there can be frustration due to cognitive difficulties or feelings of anger towards others when in fact the person is simply angry with themselves for not coping. Irritability and aggressive behaviour are very often directed at family, which can be particularly hard to take. We have all heard of the old saying You only hurt the ones you love. It will help, therefore, to remember that demonstrations of such behaviour are not a personal attack, rather a reflection of the injured person s difficulty with coping as the result of the brain injury itself. Many demonstrations of aggressive behaviour happen because the injured person feels relaxed and safe with the family and so vents his/her frustrations on loved ones. How to help Try to identify situations that trigger an angry response. In order to do this, keep a diary of incidents for a week or two. Once identified, try, as far as is possible, to remove or change those triggers. The best way to cope with the person s rage is to try to distract attention to something else rather than react to the anger since this can make matters worse. If it is out of control, the best thing to do is to walk away if at all possible. From the injured person s point of view, managing anger requires more than just identifying and changing the triggers. It requires learning how to recognise the early signs of anger. These could be physical changes in the body such as increased heart rate, tense muscles or increasing impatience, and then going through a previously learned temper routine that will help to calm the body and mind, e.g. deep breathing, muscle relaxation or thinking calming statements such as Keep calm, It s not that important and Life s too short. If the individual learns to recognise these early signs of anger and quickly employs a calming strategy, they will be in a better position to prevent a full-scale angry response. If the technique should fail, then the best thing to do is to withdraw from the situation before the anger escalates. 52

55 The consequences of brain injury Section 3 Changes in sexual behaviour Brain injury can affect an individual s sex drive and the desire for sex (libido) may increase or decrease. This can be due to the area and extent of the brain damage. In the case of loss of interest, it can be due to physical and psychological factors such as depression, feeling unattractive, constant tiredness and fear of rejection. A normal or increased sex drive coupled with a lack of awareness and insensitivity to others can result in demanding and unsatisfying sexual relationships. When combined with impulsive and disinhibited behaviour, these factors can lead to sexual remarks or advances that will cause offence. Where there is a strong sexual need without the ability to find a sexual partner, considerable frustration is likely to be experienced. A second problem relates to the sex act itself. It is fairly common for men with a brain injury not to be able to obtain or sustain an erection. This can lead to feelings of frustration and inadequacy. Impotency can be the result of brain damage but, as with decreased sex drive, psychological factors can play a big part. For example, loss of confidence may affect physical performance, and anxiety surrounding the difficulty can make matters worse. Other factors may contribute to difficulties with either lovemaking or the desire for sex, such as loss of sensation or physical problems. This might make the act of lovemaking painful, awkward or unsatisfying. Another problem for both men and women is difficulty achieving orgasm experiencing it too soon or less intensely. This can also be due to reasons outside of the immediate consequences of brain injury. Certain medications may affect the ability to achieve orgasm, and again anxiety and depression may also play a significant part. Not everyone has sexual problems following a brain injury but, for those who do, the changes in sexuality can be very distressing, not least because many people, particularly men who suffer from impotence, find the subject hard to talk about. How to help This is quite a common problem and it is always best to try to talk over any such issues with a professional, perhaps a GP in the first instance, or a member of the rehabilitation team, preferably the clinical psychologist. The Brain Injury Handbook 53

56 getting you back on track Brain Injury Specialist We have offices located in Hanley Leek Newcastle Sandbach call us today on or visit A charity leading innovation in mental health National Brain Injury Centre With over 50 years experience and expertise, we specialise in understanding the mental health causes behind a person s challenging behaviour, offering: neurobehavioural rehabilitation to manage cognitive, emotional and behavioural challenges multi-disciplinary teams from the most established service in the UK care pathways for men and women including admissions wards, slow stream rehabilitation and community based independent living. We are the UK s largest mental health charity, providing more services to the NHS than any other charity. We are committed to becoming a national centre of excellence and we are the first national teaching hospital outside the NHS. Contact us for more information Call [email protected] Visit our website Find out more about our new Neuropsychiatry service for young people aged with a neurological condition 54

57 Head Office - Registered Office: 2 nd Floor, St George s House, Knoll Road, Camberley, Surrey, GU15 3SY Registered in England no.: W: T: F: E: [email protected] The Hadlows in Tonbridge, Kent, offers a positive and supportive home environment for people with an Acquired Brain Injury, supporting people for as long as is needed, to develop the skills and confidence to live more independently and plan for the future. Working with specialist health and community services, our dedicated team offers vocational rehabilitation with an emphasis on structure and routine. With 24 hour support in this registered residential home, we offer rehabilitation programmes which are individually designed to promote independence and self-esteem and the regaining of personal control in life. We support people to identify and achieve their chosen lifestyle and offer the support to take up opportunities to develop skills and confidence to gain work experience and employment. Encouraging and supporting access to education and vocational training, maintaining personal relationships and developing and maintaining friendships with people who share similar interests are primary aims. Staff are trained in Acquired Brain Injury and Traumatic Brain Injury and are actively involved in the UKABIF and KABIF promoting best practice. your guide to brain injury claims We provide expert advice on the merits of a personal injury or medical negligence claim. As well as helping you to recover the highest possible award of compensation, we can also assist with: Care & accommodation Aids & appliances Rehabilitation Case management Court of Protection matters Personal injury trusts A hidden gem, Tees has specialists in brain injury The Legal 500 We have a specialist team of dedicated lawyers who are widely recognised for the high quality of their work and for being friendly and approachable. If you are considering bringing a brain injury claim, our Introductory Guide to Brain Injury Claims will help you to understand the process, every step of the way. To get your free copy please [email protected] or call the brain injury association Tees Solicitors is a trading name of Stanley Tee LLP regulated by the Solicitors Regulation Authority. Registered in England and Wales number OC Registered office: High Street Bishop s Stortford Hertfordshire CM23 2LU. A list of members is available from this address teeslaw.co.uk Bishop s Stortford Cambridge Chelmsford Great Dunmow Northampton Saffron Walden The Brain Injury Handbook 55

58 Consequences for the family Family plays an important role in providing an injured person with comfort, reassurance and support. Stress and family relationships Brain injury can be a major source of stress for close family members. In the case of severe brain injury particularly, it starts with acute stress at the time of the trauma, being at a loved one s bedside, helpless to intervene beyond talking to them and touching them, while waiting for the first signs of recovery. It continues as close family members and friends share the painful struggle with the injured person in beginning the long journey to some kind of normality. During this time the family is a lifeline to their injured relative, providing comfort, reassurance and support. Different family members and friends do this in their own way as they too come to terms with the impact of brain injury on the family unit. This all takes its toll. Families can go through a vast range of emotions from hope and optimism to despair and guilt. These close family members have to take on the role of therapist, at times unaided, trying to redevelop their loved one s lost skills. This can be a source of friction for all concerned. The injured person s emotional and behavioural problems are particularly difficult to cope with, though they will often decrease over time. The dedicated care that close family members give is crucial. However, it can also result in a loss of outside interests through having little free time anymore. There is often a withdrawal of support from friends and wider family members as they get back to leading their own lives. Because of this, many families may experience a sense of social isolation and a feeling of being trapped similar to that experienced by their injured relative. Research suggests that lack of information, financial concerns and legal battles all add to stress levels. Eventually the family will face the sometimes very difficult task of adjusting to the many changes in their loved one. Changes in personality tend to impose the greatest strain on the family unit and people will experience grief and depression over what has been lost. Grieving for a person is very difficult when that person is still with you and the need for practical support is ongoing. Partners/spouses often have particular difficulty in adjusting following a brain injury, especially if there are severe personality changes. They may feel that they have lost their mate They re not the person I knew. Some partners feel that the role of carer is incompatible with the role of sexual partner. For some, it is an impossible combination, particularly if the injured person is unable to show love, empathy and sensitivity as a result of their brain injury. As well as losing their loved one, there can be additional roles and responsibilities for a partner such as running the household alone and, for those with children, a loss of parenting assistance and support. Some people with brain injury may become emotionally immature 56

59 The consequences of brain injury Section 3 and very dependent upon their partners. This can result in the spouse being torn between the needs of their partner and the needs of their children. All this can sometimes be very difficult to overcome. The important thing is to seek professional advice and support. The children themselves may experience reduced attention from the non-injured parent combined with a loss of affection from the injured parent. Also, the children can become confused and distressed by unpredictable behaviour and some, like the spouse who has lost their life partner, may feel that they have lost the father/mother they knew and loved. A child s stresses and strains can result in behavioural problems that may lead to poor schoolwork and displays of their own social problems. For parents of an injured person, they may need to re-assume the role of carer. This can be easier said than done. They might become over-protective and feel anxious as their son or daughter tries to achieve more independence. Not all families will experience problems and some will be able to make adjustments without too much difficulty. They may feel closer to their loved one as a result of the brain injury. Whether this is the case or not, for most people involved, the road to recovery and eventual adjustment can be very challenging. To differing extents, all members of the family unit will require support to help them cope with the changes. How to cope with stresses and strains Below are some general guidelines for relatives and carers. Looking after an injured relative can be both emotionally and physically exhausting and it is important that close family members try to consider the following: Look after yourself physically (e.g. diet, exercise, relaxation) and recognise your own needs Make time for yourself in the day Do not isolate yourself plan social activities Share experiences with other families who have been in, or are in, the same boat as you Understand that emotions such as anger, frustration, guilt and grief are all natural coping strategies for close relatives Seek help from a member of the rehabilitation team or clinical psychologist if available to learn coping skills to deal with the anger, inflexibility and loss of drive that you might be witnessing in your loved one Do not be afraid to seek counselling to help you cope with your emotions the burden of care can sometimes be considerable Be aware of the resources available to you (see Section 7) (See Section 7, p.111 for useful contacts.) The Brain Injury Handbook 57

60 Meet Trudie Trudie Hanson has previously attended Momentum Skills brain injury vocational rehabilitation service in Birmingham, England. Here she gives an account of her experience. A while ago I bumped into one of the tutors from Momentum Skills in Birmingham, while in a busy store. Recognising her instantly, addressing her by name and chatting about my future demonstrated how much my life has changed in just a few years. In that conversation, she reminded me how, in September 2008, I had described my life as swimming in treacle. On reflection, it does seem to embrace a period in which everything seemed such a struggle, and serves as an indicator of how Momentum Skills facilitated enormous and positive changes to my life. In the summer of 2007, a scuba-diving accident in Egypt resulted in decompression sickness and subsequent acquired brain injury. After a period in a London hospital, I returned home to recuperate with my young teenage children, stuck in that strange limbo of not realising how ill I actually was and if I was told, simply unable or unwilling to accept it. Memories of that period are hazy. Putting clothes on before having a shower was not unusual; actually choosing appropriate clothes in the first place seemed to take an entire morning. Normal domestic 58 activities shopping, laundry, cooking were difficult both in terms of practical skills, and physical and mental energy. Thinking drained my mental energy so fast that sleeping 18 to 20 hours a day was far from unusual and the only place I really felt safe was under the duvet. Except when the patterns on it started to turn into faces trying to talk to me! After several months, an attempted return to work, against advice, was a total failure and served to damage my fragile confidence further. Yet when, in September 2008, my occupational therapist and disability employment advisor suggested that I go to Momentum Skills to see if they could help

61 The consequences of brain injury Section 3 to kick-start my life, my initial reaction was negative. After all, I wasn t that ill, was I? The shock of realising that the Momentum Skills course involved getting a train to Birmingham, staying awake from 10am until 4pm, four days a week and would last possibly a year, hit hard. Anxiety levels were enormous, so I caught an early train before the bulk of the commuters and waited several hours before we were due in the centre. Then I registered, went to the quiet room and slept. I still have my notes from the course, but do not remember much of the first few weeks, however the relationships formed with others on the course let me reflect on my strengths, and finally accept some of my weaknesses. Tutored sessions which described strategies for sequencing and positive thinking, anxiety management and relaxation were of enormous importance and, increasingly, fatigue management meant I could benefit from these more fully. Trips out reduced my fears of shiny floors, busy places and the terrifying prospect of someone asking me a question. Although my basic skills were quite high, the realisation of this, and acquisition of, for example, the CLAiT diploma which is an IT qualification, I felt like I was finally achieving something and this had a massive impact on my confidence. Within a year, immeasurable changes had taken place, and many foundations were laid on which to redefine my life and attain some sense of well-being. The IT sessions in particular had a further impact in that, with Momentum Skills supporting my application, Coventry University accepted this as recent learning and, in September 2009, just over two years after the accident, I enrolled as a mature part-time student for a BSc Honours Occupational Therapy degree. I have one year of my degree to complete now, and I am still improving and learning to manage stress, anxiety and fatigue. There are still low days and lapses, but the times that I am unwell or having a blip are mostly tempered by the rewards, seeing potential and allowing tolerance for myself. I am forging a new career which was facilitated by Momentum Skills giving me the hope and confidence that this could be achieved. Acceptance of my difficulties, and the techniques learned to help to manage these, are skills that I believe will benefit my future professional practice and clients. Better than swimming in treacle! Momentum Skills provides a range of innovative vocational rehabilitation services for people with an acquired brain injury. Its brain injury rehabilitation programmes are offered in Aberdeen, Glasgow, South Lanarkshire, Ayrshire, the Scottish Borders, Newcastle and Birmingham. They offer comprehensive assessment, specialist training, job coaching, work placement and jobretention support. For further information, visit The Brain Injury Handbook 59

62 Sensitivity and Determination Brain Injury advice from Irwin Mitchell Brain injuries have a dramatic and life changing impact not only for the person injured but also for those who are close to them. We passionately believe that our clients and their families deserve the best possible medical care, rehabilitation and specialised support as well as receiving the maximum compensation after a brain injury. We can assure you that: You will receive 100% of the compensation you are awarded.* You will not have to pay us anything for the work that we do.** A dedicated, experienced team of specialists with extensive understanding of brain injuries will handle your claim. Wherever possible we will seek interim payments to help fund care, medical treatment and rehabilitation as the claim progresses. We ll see you at a place convenient for you. Talk to a specialist advisor today Text CLAIM to and someone will call you back *does not apply to group actions or claims for accidents and illness outside England and Wales. ** Subject to entering a No Win, No Fee agreement with us and complying with its terms. Irwin Mitchell LLP is regulated by the Solicitors Regulation Authority and its associated firm Irwin Mitchell Scotland LLP is regulated by the Law Society of Scotland. Visit Services for children with acquired brain injury thechildrenstrust.org.uk/abi The Children s Trust, Tadworth is a national charity which runs the UK s largest residential rehabilitation centre for children with acquired brain injury (ABI). We work with children from right across the UK, from the most severely impaired to those with more subtle neurological difficulties. In addition to residential rehabilitation we offer a nationwide community support service as well as information for families at our new Brain Injury Hub website. Please get in touch to find out how we can help. For further information t: e: [email protected] The Children s Trust, Tadworth Court, Tadworth, Surrey KT20 5RU Charity registration no Information for parents: The The Queen Alexandra Hospital Home Aquired Aquired Brain Brain Injury Injury Nursing Nursing Care Care & Rehabilitation && The The Queen The Queen Alexandra Alexandra Hospital Hospital Home Home provides provides nursing, nursing, respite respite and and and rehabilitation services services predominantly to ex-servicemen to to and and women; and women; specialising specialising in the in in the treatment the treatment of those of of those with with with an an Acquired an Acquired Brain Brain Injury. Injury. With With With our our help, our help, help, residents residents can can re-learn can re-learn lost lost skills, lost skills, acquire acquire new new skills new skills skills and and and increase increase their their their self self awareness self awareness and and confidence and confidence in a in caring, a a caring, comfortable comfortable environment environment they they can they can think can think think of as of home. of as as home. Your Your experience, dedication, and and and attention attention to to detail to detail have have all all combined all combined to to deliver to deliver a level a a level of of rehabilitation of that that that I dared I I dared not not not to to dream to dream of of some of some months months ago ago ago Specialist Specialist provision provision includes: includes: Occupational Occupational Therapy; Therapy; Speech Speech Therapy; Therapy; Physiotherapy; Social Social & Recreational & & Recreational programme; programme; Chaplaincy; Chaplaincy; Cognitive Cognitive & Behavioural & & Behavioural Therapy; Therapy; Counselling Counselling and and End and End of End Life of of Life care Life care care - Former - - Former resident resident at QAHH at QAHH at QAHH 60 For For more For more more information information about about being being admitted admitted for for care for care or care if or you or if if you would you would like like to like enquire to to enquire about about supporting supporting the the charity the charity please please contact: contact: The The Queen The Queen Alexandra Alexandra Hospital Hospital Home Home Registered Registered Charity Charity number: Charity number: number: Boundary Boundary Road, Road, Worthing, Worthing, West West Sussex, Sussex, BN11 BN11 4LJ 4LJ 4LJ or [email protected] or or Brain Brain injury Brain injury 3.indd injury 3.indd 13.indd /12/ /12/ :56:10 13:56:10

63 Section 4 Recovery and rehabilitation Unlike other cells in the human body, brain cells do not regenerate when they are destroyed. However, the brain does appear to recover quite spontaneously. The pattern of recovery is usually one of rapid gains in the first six months, then a plateau, then further but less obvious gains in the following years. Old textbooks make the statement that no more progress can be expected beyond two years. However, professionals currently working in the field of neuropsychological rehabilitation dispute this assumption. While most of the progress does appear to be made in the first two years, improvements can continue for very many years. Families and individuals with direct experience of brain injury confirm this. It is not precisely understood how it recovers but research suggests that the brain, particularly the younger brain, is flexible (this is known as brain plasticity ). Remarkably, it tries to reorganise itself in an attempt to regain lost function. We all have millions of spare brain cells. It is thought that the majority of recovery that is witnessed is due to functional areas of the brain taking over the activities of the damaged areas. It does this by establishing new nerve pathways using these undamaged spare cells. These new pathways will be established only if the injured person repeatedly practises the skills and actions that have been disrupted. Recovery depends on continuous and targeted stimulation of the brain, whether this is sensory stimulation, exercising muscles and joints or developing skills in everyday living. In effect, recovery is a matter of learning and re-education through a process of continuous rehabilitation. Before moving on to outline rehabilitation, it is important to realise that no promises can be made in relation to the level of recovery that will be achieved. It is the case that no matter how extensive the rehabilitation is, there will always be a limit to its effectiveness. One hears the phrase every brain injury is different, just as every person who suffers one is different. The degree of recovery will be influenced by many factors, including the nature and degree of the brain damage and the age and lifestyle of the injured person. However, as outlined in the following pages, amazing gains can be made even after the most severe brain injury. The Brain Injury Handbook 61

64 Which professionals make up the rehabilitation team? A number of clinicians make up the rehabilitation team and, depending upon the nature of the brain injury, the person may work with one, two or more members of the team. Who is involved in the rehabilitation process? The answer is everyone. All concerned parties are involved in combining their efforts to support the injured person in regaining as much lost function as is possible, so enabling them to achieve their fullest potential and highest possible quality of life. The process of rehabilitation can be thought of as formal when applied by the rehabilitation team and informal when applied by family members and carers. Formal rehabilitation tends to be for specific periods, whereas informal rehabilitation can supplement and support the formal rehabilitation for a very long time after the injured person has been discharged from hospital or from a specialist rehabilitation unit. The Oakleaf Group providing specialist brain injury rehabilitation Oakleaf Care are an award winning independent provider of specialist brain injury rehabilitation for adult males who have suffered an acquired brain injury and may have associated complex cognitive impairments and/or physical disabilities. By providing high quality individualised care packages, clients are able to reach their optimum level of independence through engagement in a wide range of purposeful activities which reflect the unique needs of each client. For further information please contact: Julie Mallard, Marketing & Referrals Manager TEL: / [email protected] Research has shown that families can play an important part in the rehabilitation process at home. Momentum Skills staff members are very happy to work with families through its vocational training programmes in maximising the progress of their loved one and in realising that person s full potential and employment prospects. (See Section 7, p.111 for the programmes offered.) 62

65 Recovery and rehabilitation Section 4 Figure 3 The rehabilitation team The physiotherapist Helps improve physical mobility, balance, co-ordination and strength. The occupational therapist Helps improve activities of daily living, e.g. dressing, feeding, budgeting and planning, and promotes leisure/work-related skills. The family Can provide essential all-round and longterm support. The case manager Supports people in engaging with their community as well as assisting with the ongoing needs of a client, including their social, educational, rehabilitation and emotional needs. The person with a brain injury The clinical psychologist Helps with emotional and behavioural problems, assesses cognitive strengths and weaknesses and devises specific cognitive retraining programmes. The speech and language therapist Helps with written and verbal communication and treats swallowing disorders. The Brain Injury Handbook 63

66 The team Although each member of the team specialises in a different area of rehabilitation, they are all involved in helping the person to improve their cognitive abilities. In addition to the people in the rehabilitation team, there is one other professional to note the social worker. This is the person to approach for practical help such as advice on benefits, housing, accommodation, transport, wheelchairs or assistance at home. They may be able to offer emotional as well as practical support. If the injured person is still in hospital, ask to see the hospital social worker. For the longer term, the Disability Employment Advisor at the local JobCentre Plus may also be an invaluable source of help at the appropriate time. Now let s look at the collective contributions from the practising clinicians they are crucial to the family in the rehabilitation process. Although each member of the team specialises in a different area of rehabilitation, they are all involved in supporting a person to improve their cognitive abilities such as attention, memory, thinking, speech, organising and planning. 64

67 Brain Injury Advert Print.indd 1 5/9/12 09:18:22 AKA Case management are leaders in enabling those with brain injury, spinal cord injury and cerebral palsy to put meaning into their lives and live life to the full. We also provide expert evidence in support of any compensation claim. To find out what we can do for you call us now or visit our website. Call us on Helping you live life to the full after injury The Brain Injury Handbook 65

68 The physiotherapist Rachel Wilson is the lead physiotherapist for The Chaseley Trust in Eastbourne. Here she explains the role of posture management for adults with significant disabilities. At its Chaseley Home on the Eastbourne seafront, The Chaseley Trust has a vibrant therapy department providing specialist care for adults with significant disabilities, including those with brain injuries and also progressive neurological conditions such as multiple sclerosis. Residential clients have access to the full range of therapy services and, for people living in the community, a specialist out-patient physiotherapy service is provided for those who require postural management and/or long-term maintenance therapy. Therapy staff at the Trust have an excellent knowledge of posture and movement and understand their implications on function. The team carries out complex postural assessments and these provide the basis for the provision of individually tailored therapy interventions. These may include recommendations for seating and bed positioning, customised splinting, electrical stimulation and supported standing programmes. The therapy gym has a wide range of specialist accessible equipment, including ceiling track hoists, parallel bars, powered standing frames, wheelchair-accessible multigyms, tilt tables and assisted cycle machines. An assessment conducted on Oliver Bennett, who sustained a brain injury in 2009 in a road traffic accident, revealed that he was experiencing significant difficulties controlling his posture and movement. Oliver Bennett 66

69 Recovery and rehabilitation Section 4 To maintain a restful and comfortable night s sleep, Oliver benefits from the use of a T-roll to support his posture in bed. He also requires moulded customised seating to minimise the risk of him developing any further change in his posture and to assist his head control for function and communication. optimal level of function and, ultimately, good health, may not be maintained. When Oliver moves home with his family, he can continue to come to Chaseley as an out-patient. Oliver attends the gym and stands with the support of the tilt table which allows him to spend time in an upright position, thereby aiding his posture and also benefiting his bladder and bowel function, and increasing his state of alertness. In addition, he benefits from customised splinting, passive stretching, passive cycling and spending time in a forward lean position over a bean bag. Complementary intervention has supported his physical management programme; he has recently had bilateral tibial nerve blocks which have improved the positioning of his feet for standing. Access to ongoing physiotherapy is essential for people with long-term neurological conditions. Without physiotherapy and posture management strategies in place, The Brain Injury Handbook 67

70 The clinical neuropsychologist Alister Berry writes about his role as a clinical neuropsychologist within Momentum s brain injury rehabilitation services. The clinical neuropsychologist s role within Momentum is focused on assisting the individual, their family and their employer to understand and manage any cognitive, emotional and behavioural effects of the person s brain injury. This is vital if they are to become as independent as possible in their home, social and work lives after their brain injury. Assessment of these effects involves interviewing the individual with a close family member or colleague, conducting pen and paper tests, and observing the person in the environments in which they are experiencing difficulties. This assessment is then used with the individual, their family, their employer and Momentum colleagues to develop and implement an action plan to enable the difficulties to be overcome or managed. Cognitive difficulties commonly addressed by the clinical neuropsychologist include problems with attention, memory, learning and problemsolving. Emotional and behavioural issues that the clinical neuropsychologist routinely intervenes with include anxiety and depression, apathy and reduced motivation, poor social skills and increased aggression. Evaluating the effectiveness of such work with individuals, and the effectiveness of the community and vocational rehabilitation services provided, is another important aspect of the clinical neuropsychology role. This in turn links with teaching and training commitments aimed at increasing awareness of the varied everyday problems that may be experienced by those who have had a brain injury and what can be done to help. 68 For the family, coping with dramatic changes in a loved one s personality or dealing with the changes in lifestyle and role can be distressing and demanding. The clinical neuropsychologist can offer information, support and guidance regarding these changes.

71 The Brain Injury Handbook 69

72 The occupational therapist Nicola Henderson is an occupational therapist at Momentum Skills in Glasgow where she assists individuals who are accessing the organisation s brain injury vocational rehabilitation and job retention services. Here she writes about the occupational therapist s role in the rehabilitation process. Occupational therapy uses purposeful activity to prevent and minimise the impact of a disability on a person s occupational performance. The term occupational performance refers to those tasks in which individuals engage as part of their normal, everyday routine. Individuals who have sustained a brain injury can experience physical, cognitive, social, emotional and behavioural problems. An occupational therapist will assess and treat those problems to enable the individual to reach their maximum independence levels. Those who have sustained a brain injury may experience disruptions to their daily lives, and may feel that they are unable to perform as they had done before their injury. An individual may experience: Difficulty performing everyday tasks such as washing, dressing and cooking Social problems such as a breakdown of relationships or isolation from family or friends Memory, attention and concentration problems Difficulties accessing the community due to mobility or confidence issues An inability to return to work or gain employment An inability to return to leisure activities 70

73 Recovery and rehabilitation Section 4 As part of the therapy process, occupational therapists use interventions relevant to the person at that time to assist with their rehabilitation. This can take place in the home, community, rehabilitation unit or even in the workplace. These interventions may include: The use of compensatory strategies to overcome memory problems, e.g. the use of diary, calendar or mobile phone prompts A phased return to work or reduced hours, reasonable adjustments to the job role or adaptations to work space Practising activities for daily living, e.g. self-care tasks and domestic duties Community integration, e.g. joining a gym, library or local support group Establishing structure and routine into their daily lives Bolt Burdon Kemp Solicitors Providence House, Providence Place, Islington, London N1 0NT Bolt Burdon Kemp are specialist brain injury solicitors Our dedicated team of highly experienced and innovative brain injury solicitors are committed to providing a professional but personal service tailored to your needs. Our service includes: Specialist advice and representation from qualified and experienced solicitors Treatment and rehabilitation from the outset Interim payments sought at earliest opportunity and throughout the case Welfare benefits advice and support from the outset Nationwide no obligation consultations at home or in hospital Guarantee you keep 100% of your compensation Call us free on Visit our website at or [email protected] Bolt Burdon Kemp is Regulated by the Solicitors Regulation Authority It is useful for occupational therapists to talk to family members about the individual s performance, and for the family to work together with the occupational therapist to help support the individual to regain the skills necessary to carry out the roles and activities important to them in life. The Brain Injury Handbook 71

74 The speech and language therapist Kate Swinburn works with people who have aphasia, a communication impairment usually acquired as a result of a stroke or other brain injury. She has worked as a community speech and language therapist and is currently working at the charity Connect. Here she writes about the challenges that a person with a brain injury may face in relation to communicating and swallowing. There are a number of ways that speech, language and swallowing can be affected in someone with brain injury. They include: Dysarthria slurred speech or poor breathing for speech following a neurological event Aphasia/dysphasia an inability to speak or understand words because of a brain lesion Cognitive communication problems being impulsive, misreading other people s verbal and non-verbal communication, and changes in sense of humour Dysphagia swallowing difficulties in relation to communication issues The speech and language therapist: Gives information about what has happened and what is likely to happen along with other members of the team and works to re-establish roles (e.g. as a mother, a worker, a friend) as well as support a return to meaningful activities Works in partnership with the person and their family to identify the barriers that brain injury has placed on natural conversation Maximises the person s communication skills this might include exercises to strengthen muscles or tasks to help find words more easily Maximises the person s competence and confidence in their abilities at each stage of their recovery Supports the family, friends or work colleagues in better understanding how they can alter their communication style to make conversation flow more easily 72

75 Recovery and rehabilitation Section 4 Supports the person and their family in discussing how people feel since the brain injury occurred Often introduces the person to someone who has lived with a similar condition for longer, who can provide unique insights In relation to swallowing issues, the speech and language therapist: Makes suggestions about changing what is eaten and how it is eaten Talks to the person about the effects of their altered eating Connect can be contacted via or by telephone at Assesses why the muscles in the mouth and throat are causing problems Tries strategies to make eating and drinking easier and checks for improvements We no longer We worry no longer about worry the future about the future Because brain injuries last last a lifetime a The fact that we no no longer have have to to worry worry about about the future is is really down to to our our lawyer. Always about you. Now Now and and in in the the future. future. Call us free on Call us free on The e: [email protected] Brain Injury Handbook e: [email protected]

76 EXPERT REHABILITATION CARE FROM BUPA Bupa Care Homes provides expert rehabilitation care for people with brain injuries caused by accident or illness. We have Acquired Brain Injury Units which specialise in caring for people between the ages of 18 and 65. Tailored rehabilitation packages can include physiotherapy, occupational and speech therapy, neurological psychotherapy and nursing care. There are three Bupa Care Homes with Acquired Brain Injury Units in the Surrey and Essex area. Wingham Court Care Centre Oaken Lane, Claygate, Surrey KT10 0RQ Havering Court Nursing Home Havering Road, Havering-atte-Bower RM1 4YW Beacher Hall Nursing Centre 42 Bath Road, Reading RG1 6PG For more information about Bupa Care Homes offering rehabilitation care, please call quoting reference CH2534. bupa.co.uk/care-homes 74

77 The East Midlands Centre for Neurobehavioural Rehabilitation We provide a specialist service for men and women over the age of 18 with a brain injury who present with behaviours that impede their ability to rehabilitate. The centre provides specialised neuropsychiatric and psychological assessment, positive and consistent approaches to behaviour management and cognitive rehabilitation. The centre accepts people who may require: Physical rehabilitation Support with mental health issues PEG management Tracheostomy management Support where there is no functional understanding of language Detention under the Mental Health Act We also offer shorter term admissions, around weeks, for assessment only. The average length of stay at the centre is 11 months and 50% of patients are discharged back home with appropriate support. Others are discharged to social care funded placements in a similar timescale. The multidisciplinary neuro-rehabilitation programme focuses on the relearning of functional self-care and independence skills and makes full use of community facilities as soon as is possible and safe. The programme is delivered by our experienced team of in-house clinicians comprising: Consultant Neuropsychiatrist Registered Nurses Occupational Therapist Speech and Language Therapist Physiotherapist Psychologist Rehabilitation Assistants All enquiries and referrals or [email protected] The East Midlands Centre for Neurobehavioural Rehabilitation, Warwick Lodge, Warwick Road, Melton Mowbray, Leicestershire, LE13 0RD The Brain Injury Handbook 75

78 Your recovery and quality of life are our immediate concern. While I was in hospital, things at home were being fixed quickly, which was a big relief to my family. Yvonne Abbess Yvonne was cycling along George Lane in Woodford when she was hit by a car, causing severe brain injury. Her injuries were life threatening and required emergency surgery to remove a blood clot from her brain. This left her scarred and her intellectual and cognitive process to make decisions were severely impaired. While Yvonne was still in hospital recovering, Slater & Gordon Lawyers quickly secured payments from the other side, so that her home could be adapted with a stair lift and ramp. In addition, we were able to secure a substantial lump sum and ongoing payments for her future care and quality of life. Slater and Gordon Lawyers provide expert support for your legal, medical and social needs and we are committed to securing the best possible outcome for you and your family. Contact our severe injury specialist on our free phone number: Or us directly: [email protected] 76 Slater & Gordon (UK) LLP (OC371153) is authorised and regulated by the Solicitors Regulation Authority.

79 Neuro Neuro Rehabilitation Neuro Rehabilitation Services Services Services Banstead Banstead Place Banstead Place Place We provide We provide residential, We provide residential, day residential, placement, day placement, day out-patient placement, out-patient and out-patient outreach and outreach neuro and outreach neuro neuro rehabilitation rehabilitation services. rehabilitation services. Assessment, services. Assessment, intensive Assessment, intensive neuro intensive neuro rehabilitation, rehabilitation, neuro rehabilitation, vocational vocational rehabilitation vocational rehabilitation and rehabilitation education and education and are integral education are integral to are our integral to work. our work. to our work. Support, Support, expertise Support, expertise and expertise and Therapeutic and Therapeutic Intervention: Therapeutic Intervention: Physiotherapy, Intervention: Physiotherapy, Physiotherapy, Speech Speech and Language and Speech Language Therapy, and Language Therapy, Therapy, encouragement encouragement for for for Occupational Occupational Therapy Occupational Therapy and Clinical and Therapy Clinical and Clinical every every step of step every the of step the of Psychology the Psychology Psychology rehabilitation rehabilitation rehabilitation journey journey journey Vocational Vocational Rehabilitation, Vocational Rehabilitation, including Rehabilitation, including work including work work placements placements and placements re-entry and re-entry to work and to re-entry work to work Medico-legal Medico-legal assessments, Medico-legal assessments, including assessments, including including capacity capacity and neuropsychological and capacity and neuropsychological assessments assessments assessments Outreach Outreach Support Outreach Support Support Support with activities with Support activities with activities of daily of living daily and living of Education daily and living Education Mentors and Education Mentors Mentors Staff Training Staff Training Staff Brain Training Injury Brain Awareness, Injury Brain Awareness, Injury Awareness, Behaviour Behaviour Management, Behaviour Management, Disability Management, Disability Disability Awareness Awareness Awareness Advisory Advisory and Counselling Advisory and Counselling and Service Counselling Service Service QEF Neuro QEF Neuro Rehabilitation QEF Rehabilitation Neuro Rehabilitation Services Services Services Banstead Banstead Place, Banstead Park Place, Road, Park Place, Banstead, Road, Park Banstead, Road, Surrey Banstead, Surrey SM7 3EE SM7 Surrey 3EE SM7 3EE Lynne Hensor Lynne Hensor Lynne NRS Manager Hensor NRS Manager NRS Manager Tel: Tel: Tel: Fax: Fax: Fax: Website: Website: Website: Registered Registered with Registered CQC with No. CQC with No. CQC No Registered Registered Charity Registered Charity No: No: Charity No: Brain Injury Support Services VP VP Community Care provides specialist support and and rehabilitation for for people with with needs resulting from acquired brain injury, mental health difficulties and and physical disability. With our our specialist knowledge and and highly skilled team, we we have achieved positive results with with clients experiencing some of of the the most overwhelming personal and and social difficulties, impacting upon them and and their family. Full Full clinical care care management Psychological assessment & & intervention Promoting educational & & occupational activities Companionship & & leisure activities Person centred approach, emphasising choice, independence & & quality of of life life Live Live in in care care & & 1:1/2:1 support Regular visits to to clients & & families Detailed care care & & support plans Care Care coordination Comprehensive training package inc. inc. ABI ABI training Management of of existing staff staff & & supervision Recruitment, plus plus temporary to to permanent conversion Tel: The Brain Injury Handbook 77

80 The case manager Dr Bill McKinlay is a director and neuropsychologist with Case Management Services Ltd in Edinburgh. He explains the role of a case manager in brain injury rehabilitation. A brain injury case manager is a professionally qualified individual whose role is to recommend and implement rehabilitation services for adults and children who have sustained a brain injury or catastrophic injury, or who have other complex rehabilitation and care needs. Brain injury case management can provide: Community-based rehabilitation Long-term support in the community There are advantages for some individuals with brain injury in receiving rehabilitation in a specialised rehabilitation unit, where therapists and doctors are all on hand. However, it may be hard to keep up momentum after discharge to the community. Community-based rehabilitation where a person wishes to make further advances in independence or improve their quality of life can offer advantages for many people. Case managers work as part of a multidisciplinary team and can draw on input from neuropsychology, occupational therapy, speech and language therapy, physiotherapy and nursing. They can therefore provide help with: Rehabilitation strategies memory training, anger management, social skills training Day-to-day independence using aids or strategies to overcome challenges in daily life Anger management basic methods to get control of anger or outbursts Improving fitness using a physiotherapist to increase activities and to help reduce tiredness 78

81 Recovery and rehabilitation Section 4 Finding activities to help get back to normal life, whether that be school, further education or work It is especially useful to have rehabilitation at home rather than at a distance from family and friends. Another role of the case manager is to organise long-term support in the community. Family members who care for someone with a brain injury often worry about what will happen when they are unable to help. The case manager can set up stable living arrangements tailored to the needs of the individual in a suitable property with carers and support workers. To do this, the case manager needs to: Find accommodation with help from an occupational therapist, specialist architect, etc. Find activities so that the individual has a full week, the chance to make friends, etc. Find care workers for the family to employ or from an agency that understands brain injury Train carers on how to support and help the individual involved It is not easy to obtain this sort of assistance unless funding is forthcoming as part of a claim for compensation, although sometimes employers occupational health plans make some provision for assessment and rehabilitative elements. It is very challenging to obtain this sort of comprehensive package through the statutory services, although the provision made by the NHS and Social Services does vary depending on where one lives. How do you find a case manager? A reputable case manager should be a member of either the Case Management Society UK (CMSUK) or the British Association of Brain Injury Case Managers (BABICM). Both of these organisations have lists of members on their websites, which are accessible to professionals and the public. The case manager should be qualified in a recognised profession such as occupational therapy, nursing, social work, speech and language therapy or teaching. Ideally a case manager should be based within easy travelling distance of the client to facilitate prompt access and to maintain cost-effectiveness. The solicitor in a compensation case generally instructs a case manager to work with a person who has received a brain injury. The solicitor may introduce more than one case manager to the individual and their family and leave the final choice to them. People should always bear in mind that case managers can become very involved with them and their family and, therefore, it is important to choose the case manager they feel they can work with most easily. The Brain Injury Handbook 79

82 Specialist support for people with brain injuries Lifeways Community Care, one of the UK s leading providers of supported living, specialises in supporting people with complex needs associated with brain injury We can provide support with: Daily orientation, planning and initiation Developing self-regulation strategies Time and money management Cognitive development activities Social skills and personal development Specialist rehabilitation provision Looking after the home Daily living activities Transport to appointments Social and recreational activities For further information, please contact our Specialist Brain Injury Team [email protected] Mobile: Lifeways Community Care, Fisher Building, 118 Garratt Lane, Wandsworth, London, SW18 4DJ. Tel:

83 Section 5 Returning to work after a brain injury The combined effects of the physical, cognitive and behavioural changes described so far mean that many people with a brain injury will be unable to return to work, at least to their former occupation. People will need to consider a range of options according to the extent of their difficulties. These could include returning to work with reduced hours, retraining for alternative work, or undertaking supported or voluntary work. The most significantly disabled are unlikely to be able to manage a return to work and might consider other options such as attending a day services centre. (See Section 7, p.111 for useful contacts.) Research that has been carried out in recent years has consistently found that a lack of vocational rehabilitation is a major cause of people with severe brain injuries not being able to obtain or maintain employment. They may attempt to return to a job that is no longer suitable, because they have not received advice on planning their return to work and the required supports are not in place. It is important to get support in preparing to return to work. A vocational assessment is recommended. In some areas, the injured person can get help from the NHS in accessing vocational rehabilitation through the community brain injury rehabilitation teams, particularly in relation to occupational therapy. Alternatively, contact the local JobCentre Plus and ask to see a Disability Employment Advisor. The world of work places enormous pressure on people and it is important to consider how this will affect the individual. The Brain Injury Handbook 81

84 Work performance problems Poor concentration and attention leading to distraction How many times do we have to focus or shift our attention in everyday life let alone a busy workplace? People with brain injury who had formerly to maintain and respond to more than one set of instructions or ideas may find themselves now unable to tolerate distraction. Long shifts where sustained concentration is required could also prove problematic. Poor memory Poor memory can lead to difficulties mastering new types of work. Even mild memory loss for managers, teachers, lawyers or secretaries can prove too high a burden to sustain employment in their fields. Slowed information-processing/thinking Slowed information-processing can lead to difficulty understanding complex information and subsequently acting upon that information, e.g. following instructions given quickly, carrying them out or relaying them to others. The above problems, either individually or in combination, can cause a permanent inability to perform as required in a job. Inflexible thinking Seeing things in black and white can lead to difficulty following procedural rules and appreciating options or another s point of view. The person may seem to be showing traits of an anti-authority nature, whilst rigid thinking will often lead to argumentative behaviour that can prove irritating to workmates and supervisors. Difficulty in planning Difficulty in organising, problem-solving, making decisions, using judgement and initiative can all lead to an inability to work independently or in any work that requires multiple and complex activities. However, people lacking these skills may be able to find employment in jobs that have a routine structure. Loss of initiative, drive and spontaneity Loss of initiative can lead to an inability to carry out work-related tasks without being prompted. Anxiety Anxiety can lead to a loss of confidence and, possibly, to erratic behaviour. Low tolerance of frustration/noise/stress Low tolerance can lead to a quick temper, becoming easily upset and difficulty with working to deadlines. Fatigue or tiredness Tiredness can often make other problems seem worse and poor concentration will contribute to mistakes. Fatigue may result in days off work to recover. 82

85 Returning to work after a brain injury Section 5 Lack of insight and awareness Lack of insight and awareness can lead to unrealistic expectations of work capability and a possible insensitivity to others. Poor interpersonal skills at work, such as impulsiveness, mood swings, etc., can all be problematic. Reduced activities of daily living Activities of daily living relate to a person s ability to manage their everyday life, such as getting up on time in the morning, cooking, shopping, self-care, time management, organising money and transport, and so on. A reduction in these abilities can result in late or unreliable attendance. (See section 7, p.111 for information on Momentum s vocational rehabilitation programme.) What factors influence a successful return to work? A number of factors impact on a successful return to work, including: The nature and severity of residual difficulties, particularly the degree of self-awareness and how well the person has adjusted to their disability The nature of the pre-injury occupation The timing and management of the return to work The employer and co-worker support Success in obtaining or sustaining employment depends on the person being able to do the job they must have the cognitive and social skills that the job demands. When considering a return to work, it is very important to be realistic about this and to take advice from the rehabilitation team. Unrealistic expectations due to reduced insight can present a formidable barrier to a successful return to work. There is no doubt that the degree of self-awareness and adjustment to difficulties is a critical factor in recovery. People who have accepted their difficulties practise strategies to compensate and adapt. They open their minds to alternative suggestions for employment if a return to their pre-injury occupation is not feasible. In short, a person must accept their new circumstances before they can learn to use alternative strategies and realise success again. It is extremely important to learn social skills to initiate a good working relationship with colleagues. Research has consistently shown that poor interpersonal skills are the biggest barrier to a successful return to work. The Brain Injury Handbook 83

86 Providing Support & Guidance for those affected by Brain Injury Thorneycroft Solicitors have a nationally renowned Personal Injury team that includes highly experienced solicitors specialising in bringing compensation claims for individuals who have suffered brain injury. We have successfully represented clients with brain injuries as a result of a variety of reasons including road traffic accidents and accidents at work. Understanding the brain injury claim process. When a serious injury happens to the brain it can have devastating consequences for the injured party as well as their family. Whilst the circumstances of each case are very different, at Thorneycroft we know that early rehabilitation is always key both in terms of physical recovery and help adapting to home and family life. We understand both the complex rehabilitation process and the importance of assessing the potential future needs that a brain injury compensation claim needs to take into account. Thorneycroft provide a comprehensive service including advice and guidance on the following areas: Rehabilitation Benefits Special education needs Liaison with medical and ancillary experts Financial advice Free initial meeting at your home, hospital or place of work Applications for deputyship At Thorneycroft Solicitors, we have a reputation for the highest levels of customer service and successful compensation claims. If you d like to have an initial conversation contact me on my direct line or me at: [email protected] Rachel Stow, Managing Director

87 Returning to work after a brain injury Section 5 Meet Katrina Twenty-four-year-old Katrina Downie attended Momentum Skills brain injury vocational rehabilitation service in Aberdeen, Scotland. Here she gives an account of her experience. I was in a car accident in February The day of the accident, I left work earlier because of severe weather conditions. While driving home on the dual carriageway, the car in front hit black ice and spun 180 degrees. The police believe that, on seeing this, I hit my brakes and swerved to avoid it. My car went vertical, with the bonnet facing the ground and the boot towards the sky. It then skidded down an embankment. When the emergency services arrived, I was cut from my car, put on a life support machine and whisked away to hospital. Doctors didn t expect me to make it through the night. I was in a coma for two weeks and, when I awoke, the effects of my injuries soon became apparent: I had little memory, couldn t walk, my skull was severely cracked, both cheekbones were shattered, and my vision was badly affected. After spending a lot of time in various hospitals, getting home felt great but it was clear that parts of my life were not as easy as they should be. My memory and vision gave me the most trouble but I also started having regular panic attacks. I ve never been one to dwell on the negative and there are some good things to come out of this, such as learning the importance of family and of life. Also, I met some great people throughout my recovery, including the staff and other people who use the services at Momentum Skills. I joined Momentum Skills in July The staff taught me techniques and strategies to manage the areas of my brain affected by the injury, such as memory, and also helped to rebuild my confidence. They supported me in gaining a recognised IT qualification and to prepare for job interviews. Meeting other people at the centre who have experienced a brain injury and seeing how they have progressed has showed me that improvements in my condition are possible. I am happy to say that I am now in full-time employment and have moved into my own flat. None of this would have been possible without the help and support of staff at Momentum Skills. Momentum Skills provides a range of innovative vocational rehabilitation services for people with an acquired brain injury. Its brain injury rehabilitation programmes are offered in Aberdeen, Glasgow, South Lanarkshire, Ayrshire, the Scottish Borders, Newcastle and Birmingham. They offer comprehensive assessment, specialist training, job coaching, work placement and jobretention support. For further information, visit The Brain Injury Handbook 85

88 Returning to your pre-injury occupation When thinking of returning to a previous job or position, there are many options to consider. Management and professional positions Even a mild injury can have a serious impact on the executive skills required in the workplace. Professional and senior executives will have particular problems and face great difficulty returning to their pre-injury occupation for, as previously outlined, the executive skills are the ones most likely to have been impaired. Students Students may also experience particular problems returning to study. Even a mild injury can have a significant impact on students because of the demands on attention, memory and speed of thinking. Allowances might not be made because teachers may not be aware of the difficulties. Often, though, there is a student disability resource centre that can offer support. Severe injury may prevent continued study in higher education and affect career aspirations, which can be very difficult to deal with. Having to consider routine work can be devastating for an executive used to performing a variety of complex and responsible tasks. However, it need not be boring. A variety of jobs are possible if the opportunity is available to impose structure and diversification. Self-employed In the case of people who were previously self-employed, it is important to be realistic and if a return to work does not seem viable, advice should be sought on whether it might be sensible to sell the business or perhaps employ someone else to run it. 86

89 Returning to work after a brain injury Section 5 Is it possible to go back to work too soon? It is quite natural to want to go back to work as soon as possible. However, people often make the mistake of thinking because they are feeling physically able to return to work, that they will be able to cope with the wider demands of the job. Many jobs are lost because the person returns to work too soon. Typically, they will overestimate their abilities and underestimate the effects of fatigue on performance. any rehabilitation team to help the person identify the most suitable type of future job and the optimum build-up of hours over a period of time once all factors are taken into account. Many people expect to be able to work a full day straightaway, and finding out that this is not possible for various reasons can really damage confidence and self-belief. It is therefore an essential part of the work of THE SOLUTION FOR YOUR SPECIALIST AND COMPLEX CARE AND SUPPORT NEEDS Prestige Nursing + Care is widely recognised as one of the leading nursing and homecare agencies in the UK We provide flexible care and support services to individuals with an acquired brain or spinal injury. Our aim is to enable people to live independently within their community, by providing and maintaining a supportive living environment. At Prestige Nursing + Care, we work with case managers or directly with individuals to facilitate positive outcomes for their care and support needs. Our person centred approach is developed with the individual to achieve and maintain their rehabilitation goals, a healthy lifestyle and improved quality of life. Our team of qualified registered nurses, support and care workers, are highly experienced and undertake specialist training to enable them to provide care and support tailored to your needs. For more information please contact us on: or [email protected] Prestige Nursing + The Brain Injury Handbook Care 87

90 Managing a return to work A gradual return to work is important, as are easier working conditions and tasks. This will allow the person to build up their stamina and capabilities; a situation that may need to continue for quite an extended time. Ideally, people returning to work should start with just a few hours per day, building up hours over time as stamina improves. However, before a gradual return to work is considered, there should be evidence that the injured person can maintain concentration and have sufficient stamina to work safely and effectively for a specified period in the working day. Easier working conditions may include a quieter working environment that is free from unnecessary distractions. Consideration will also have to be shown for any physical disabilities wheelchair access, adapted computers, etc. Such special aids can be obtained from a disability employment advisor, based at the local JobCentre Plus, under the Access to Work scheme. Having someone to act in a mentoring capacity may be useful. While an employer or line manager might not be able to find the time to devote to this, having somebody take on this role can be mutually beneficial. None of us are the best judges of how we are managing with new tasks in our work. This is of particular relevance to somebody with brain injury, so the employer just has to use common sense in dealing with the situation. The advice to a person looking to re-enter the employment market following brain injury is that it is often better to start off with some voluntary work or maybe a short college course, where strengths and weaknesses can be identified early. If the person is still based within a hospital or neurological centre, the occupational therapist will be able to refer them to the local disability employment advisor who, in turn (depending on locality), can outline available options as appropriate. Ultimately, a successful return to work depends on: A good match between the job and current abilities/skills Sufficient stamina to get through the working day or hours agreed Attention and concentration adequate to carry out work tasks Acceptable interpersonal/social skills Mentoring/job coaching 88

91 Returning to work after a brain injury Section 5 Support from employers and co-workers The need for support from both a person s employer and co-workers cannot be overstated. It is very important that, at the very least, the employer or line manager or equivalent knows a little about the long-term effects of brain injury. With this knowledge, they will be able to provide support when and where necessary. Like many people, employers tend to view disability as a physical condition. When they see no obvious outward signs, such as a wheelchair, they might assume the person is fine. Brain injury is often referred to as a hidden disability, and as such can easily lead to misinterpretation. For example, loss of initiative or fatigue can be interpreted as laziness. Additionally, the person may be asked to stay late at work. Their commitment may lead them rarely to refuse such a request, but the required tasks may not be completed to a satisfactory standard. Because of these examples of potential misunderstanding, organisations such as Momentum Skills have job coaches whose role is to educate and support the employer as well as the employee with a brain injury. What about those who are unemployed pre-injury? Finding work is difficult enough for anyone, but there is no doubt that it is harder for people who have had a brain injury. The person may be unable to complete an application form pre-interview or may have difficulty sufficiently impressing an interviewer; they may suffer from a reduced speed of thinking or not have regained sufficient social/interpersonal skills to be able to undertake a successful interview. Make contact with the disability employment advisor at the local JobCentre Plus when the time is right. They can be of invaluable help. Of course, starting work may be even more difficult for a young person who has not yet chosen a career or who has not had a job pre-injury. Choosing a suitable career or occupation without prior experience of the employment market is an incredibly daunting task. Support is available from the local Connexions or Careers Scotland Service or from the JobCentre Plus disability employment advisor. Alternatively, get in touch with Momentum. (See Section 7, p.111 for contact details.) The Brain Injury Handbook 89

92 Meet Stuart Twenty-two-year-old Stuart McIntyre, sustained a brain injury in Here Stuart shares his experience of having a brain injury and how attending Momentum Skills brain injury vocational rehabilitation programme in Glasgow is helping him to get his life back on track. Life is so fragile. One minute you can be enjoying your life, then the next minute an event happens that changes the way you live forever. In August 2009, I was assaulted by three men on my way home after a night out with friends in Glasgow to celebrate my 20th birthday. The assault left me with a traumatic brain injury and paralysed down one side of my body as well as with fractures to my skull, cheek bone and a broken nose. I was in a coma for two weeks. Before my injury, I was self-employed, working as a film editor and camera operator. I also had an active social life but all this changed. When I first emerged from the coma I couldn t walk or talk and didn t recognise any of my family or friends. I needed help to do everything, including eating. During 90 my time in hospital, my main focus was working with the physiotherapists so that I could walk again and doing a lot of work with a speech and language therapist to get my speech back. I was really motivated to get out of hospital. I told everyone who visited me that I was being discharged the next day, even though I wasn t. I was in hospital for two months and every day I pushed myself to get better.

93 Returning to work after a brain injury Section 5 After being discharged, I was so lethargic that I spent most of my time in bed. It felt like I was still in hospital, with people who kept on visiting me. By attending the centre, I ve also made several friends. It s good to have friends who really understand what I am going through. One of the areas of my brain that was badly injured was the frontal lobes which control a person s emotions and behaviour. For a number of months after my injury, I didn t feel any emotion whatsoever. I was completely flat. I can remember being visited by a friend in hospital and she was crying and I asked her why was there water coming from her eyes. The most important thing I have learned at Momentum Skills is not to dwell on the problems but to work on ways round them. Before my brain injury, my film career was my life but I ve had to come to terms with knowing I can t return to the job I loved. I m now exploring different career routes and am working towards returning to employment with Momentum Skills support. I heard about Momentum Skills through my disability employment advisor at the job centre. I joined its brain injury programme in Glasgow in September This injury has affected so many different parts of my life but as time goes on I ve been able to overcome problems, however, as I progress I come up against new challenges. Momentum Skills has helped me realise that this injury isn t just a hitch in my life that I need to overcome, but it is a new way of life. Staff at the centre have taught me different techniques to manage my memory problems. I have also undertaken various work placements and am exploring different career options. Momentum Skills provides a range of innovative vocational rehabilitation services for people with an acquired brain injury. Its brain injury rehabilitation programmes are offered in Aberdeen, Glasgow, South Lanarkshire, Ayrshire, the Scottish Borders, Newcastle and Birmingham. They offer comprehensive assessment, specialist training, job coaching, work placement and jobretention support. For further information, visit The Brain Injury Handbook 91

94 Delivering World Class Care The Acute Neurological Rehabilitation Units at The Wellington Hospital and the Portland Hospital, are private facilities dedicated to providing the highest standard of care. The Wellington Hospital has 46 beds dedicated to adult neurological rehabilitation, whilst the 6 bedded unit at the Portland Hospital provides a service for children. Both units offer extensive gym and treatment areas. Both units provide individualised programmes, which are consultant led and delivered by our expert multidisciplinary teams. Conditions Treated: Head Injuries Spinal Injuries Stroke Rehabilitation following Critical Illness Functional Restoration Programmes Congenital Disorders Consultants Dieticians Language Interpreters The Team: Neurophysiotherapists Neuropsychologists Occupational Therapists Play Specialists Rehabilitation Advisors Rehabilitation Nurses Speech and Language Therapists 92 Wellington Place, St Johns Wood, London NW8 9LE Tel: / Fax:

95 Section 6 Legal issues Anyone who suffers a brain injury in an accident should seek preliminary advice from a specialist personal injury solicitor about the possibility of compensation as soon as they can. Compensation can be awarded for injuries received only if it can be demonstrated that another party was responsible for the accident, either wholly or partly. However, even if the injured party appears to be solely responsible, it is worth seeking advice in case limited negligence by another party can be identified. The initial interview is usually free of charge and will establish whether there is a case for claiming compensation. The solicitor will need to get a clear picture of the circumstances surrounding the accident and the nature of the injuries sustained. In the case of severe injury, the first assessment interview may take place in the hospital. Clinical Neuropsychology Clinical Neuropsychology is both an academic discipline and an applied practice concerned with the relationship between brain and behaviour. Clinical Neuropsychologists: work with children and adults who have had an illness or brain injury, as well as other conditions which can influence brain function (e.g. diabetes, lung or heart conditions). apply a scientific understanding of how brain dysfunction affects thinking, memory, emotions and behaviour. carry out specialist assessments in order to understand exactly what difficulties the person is having or is likely to have. advise on the most likely outcomes and on how to cope with any resulting long term difficulties, both for the individual and their family. Most Clinical Neuropsychologists in the UK are members of The British Psychological Society and details of those available for public consultation can be found in the Directory of Chartered Psychologists. This publication can be found on the web at The Brain Injury Handbook 93

96 Selection of the legal team Bill Braithwaite QC is a specialist in personal injury cases and author of Brain and Spine Injuries The Fight for Justice. Here he outlines the process of choosing legal representation where this is deemed necessary. The following information applies to the legal systems in Scotland and England. In the event of a claim arising, the selection of a legal team is extremely important. The process of making a legal claim is difficult and it can be made more so by lawyers who are not suited to either the individual or the type of claim. Catastrophic personal injury claims are now a specialised area of claim management and the legal team needs to be sufficiently experienced in this area of work. The key element in the team is the solicitor. He/she is the person who has the daily conduct of the claim and who communicates everything that matters to the person with a brain injury and his/her family. It is important for the individual who has sustained a brain injury to select an experienced solicitor, and to make sure that it is someone who will be able to carry out the claim from start to finish. It is beneficial for the team to be created at an early stage. It is almost universal that the solicitor would decide to use the services of a barrister as a consultant specialising in the preparation and presentation of legal claims. That would mean that the solicitor would select and instruct a barrister and that should be done before the claim is too far advanced, so that the individual with a brain injury, and their family if appropriate, can get to know the whole team early on, and the team can get to know them. 94

97 Legal issues Section 6 The person with a brain injury, and their family, have the right to ask detailed questions about the solicitor and barrister before they commit themselves to instructing them. Appropriate questions might include those set out across. Although it is important to meet the solicitor before deciding whether to instruct him/her, the questionnaire could be given (or sent) to more than one solicitor, so that some early impression can be gained of his/ her experience. A good track record, established by clear evidence, is important. The response of the solicitor may give some indication of their character; if he/ she is embarrassed or offended by this questionnaire, or considers it impertinent or rude to be asked, the reason may be based on lack of experience of this type of work. The individual and their family may also want to ask the solicitor how he/she intends to communicate with them during the course of the case. Some people like to have frequent letters describing progress, some fear and dislike such constant reminders. Some prefer the phone, but others don t. Personal visits are an obvious possibility, but again not all people welcome the intrusion into their home. Sample questions to ask a solicitor Are you a member of any specialist organisation related to the conduct of brain injury litigation? If so, please give details. Have you been approved, franchised or accredited by any specialist organisation related to the conduct of brain injury litigation? If so, please give details. Have you received any training or education related to the conduct of brain injury litigation? If so, please give details. Have you ever conducted this type of claim before? If so, please give a brief description of each case, including the nature of the injury, the stage proceedings reached and the value of the claim. Do you have any system whereby the quality and efficiency of your work is audited by an independent body? If so, please give details. Do you expect to be in charge of the case throughout its duration? There is no right or wrong way, but there is likely to be a system that will suit the family in question. The Brain Injury Handbook 95

98 Making a claim If you are happy with the initial advice received from a solicitor, one needs to instruct him/ her to act. The solicitor will collect evidence from all concerned parties in order to establish a view on liability (the legal term for blame). This may include interviewing and obtaining evidence from witnesses and, in the case of a road accident, getting a police report. The time that this takes depends on the complexity of the case. Alleged medical negligence claims are particularly complex. If, after collecting the evidence, the solicitor thinks that liability can be established, he/ she may apply to the court for what is called a Summary Judgement. This enables part of the claim to be dealt with quickly before going to trial. Alternatively, the issue of liability may need to go to trial before financial compensation is calculated. If you are worried about going to court, remember, the vast majority of cases are settled out of court. The solicitor will also need to collect evidence to establish the effects of the brain injury on all spheres of life: short-term, long-term, and future health and work prospects. This is necessary to calculate financial compensation (called Quantum ) and will involve arranging for specialist reports from a variety of professionals. These sources will vary depending on the nature of the injury but could include reports from any one of the following: Doctor (GP)/specialist (who may have been involved in early care), physician, surgeon (possibly a neurosurgeon), orthopaedic surgeon or plastic surgeon Neuropsychologist for an assessment of cognitive skills, personality and judgement regarding future prospects Consultant for an independent medical report to provide a medical overview Case manager (if one is involved) Reports may also be requested from an occupational therapist, psychiatrist, school or former employer and possibly an employment rehabilitation consultant to advise on occupational potential and earning capacity. In the case of severe brain injury, this part of the claim is likely to take a long time, not least because of the recovery time. 96

99 Legal issues Section 6 Time limits Where the injured person is an adult, the legal time limit for accident claims is normally three years. However, there are exceptions: There is no time limit for starting a case in serious head (brain) injury cases where the person is so seriously disabled that they are incapable of managing their own affairs. In some cases, particularly medical negligence cases, the injured person may not be aware that they have been injured as a result of someone else s mistake until after three years have passed. The solicitor will examine the circumstances surrounding the injury and then advise whether the injured person is still in time to bring a claim. If the victim is a child at the time of the accident, the three-year time limit does not commence until the age of 18 years is reached. Calculating financial compensation Calculating a personal injury claim (PIC) is a highly specialised procedure. Both the person and their solicitor will need to ensure that every eventuality is accounted for and that records are kept so that claims can be made for every loss and expense. For example, PICs have two elements: special damages and general damages. Special damages are awarded to compensate for all direct financial loss incurred as a result of the accident, e.g. private medical fees, cost of equipment, travelling expenses, damage to vehicle and clothing, loss of wages, etc. General damages have three components: 1 Pain, suffering and loss of amenity (amenity refers to loss of capacity due to physical or psychological problems) 2 Loss of earnings including future earnings or promotion prospects 3 Care needs, e.g. cost of providing care, specialist rehabilitation/therapies, accommodation, special aids and adaptations, and transport The Brain Injury Handbook 97

100 Interim payments One does not necessarily have to wait until the case is settled before receiving money. A solicitor can apply for an interim payment and should do so if at all possible. This involves applying to the defendant for some of the damages immediately or well before the case is settled. As detailed earlier, rehabilitation can make a tremendous difference to the quality of recovery and eventual independence. An interim payment will enable the injured person to obtain whatever is required to aid their recovery when it is needed, as opposed to waiting until the case is settled, which can take up to four years. Applying for an interim payment involves the insurers of the defendant paying some of the damages before the case is finalised. 98

101 Award Winning Care Homes Sussex Health Care is an award winning group of care homes providing 25 years of healthcare in Sussex. The Group operates 20 homes, predominantly in the West Sussex area, providing nearly 550 beds, incorporating specialist care provision as well as care for older people. Care Homes for People with Learning Disabilities/Physical Disabilities/Neurological Conditions Beechcroft Care Centre and Hazel Lodge Beech Lodge and Oak Lodge Horncastle Care Centre Kingsmead Care Centre Kingsmead Lodge Norfolk Lodge Orchard Lodge and Boldings Lodge Care for older people Clemsfold House Forest Lodge Horncastle Care Centre Horncastle House Rapkyns Care Centre Rapkyns Care Home Redwood House White Lodge Wisteria Lodge Woodhurst Lodge Kingsmead Care Centre Longfield Manor Rapkyns Care Home Upper Mead To find out more about our homes and the services we offer, contact: Corrine Wallace Head of Operational Care Services New specialist unit for people with Neurological and acquired brain injury conditions opened in July The Brain Injury Handbook 99

102 Brain injury and community care law Simon Garlick of Ben Hoare Bell LLP Solicitors, Newcastle upon Tyne, outlines how community care law affects people with brain injuries and their carers. The following information applies to the legal system in England. Individuals who have sustained brain injuries and their families and carers, must usually look to the State s statutory services in the form of the NHS or their local authority for the provision of appropriate care. In most cases, statutory services will be the only source of professional care and support in the longterm. For a minority of people, they may be used in the short-term only, until a private care package, funded from existing savings, insurance, or by a compensation payment, can be put in place. The NHS and local authorities are subject to many legal duties that oblige them to assess the needs of both the person with the injury and their carer(s). They are empowered, and often under a legal duty, to provide a range of services, which may include residential or nursing home care, nursing or social care at home, provision or adaptation of accommodation, short breaks (respite care), disability-related equipment, day centre services, assistance with travel, breaks and holidays, as well as counselling and befriending schemes. These services may be provided by the NHS or local government using their own or agency staff or, if certain conditions are met, may be funded by statutory services handing over a budget to the individual, leaving them or their carer(s) to choose and to buy the necessary service this is called Direct Payments (also known as Personal or Individual Budgets). In many cases, statutory service provision is of a high standard, but sometimes assessments and services are not provided when they should be, whether because of a shortage of resources or staff, or due to a lack of understanding on the part of statutory services about what their powers and obligations are. In such cases, it is important that individuals with brain injuries and their families or carers have access to an advisor who knows about community care law and who can ensure that statutory services fulfil their obligations, particularly in these times of reduced funding in local authority and NHS services. 100

103 Legal issues Section 6 Assessment Under Section 47 of the National Health Service and Community Care Act 1990, where it appears to a local authority that any person, including children, may be in need... of community care services the authority must assess their needs and make a decision about what services are to be provided to meet those needs. This provision relates to the provision of social care for which local authorities are generally responsible, rather than nursing or medical care for which the NHS is responsible. Assessments must be carried out within a reasonable time, cannot be delayed or refused because of shortage of local authority funds, and will result in a person s needs being banded according to the level of risk to their independence that will result if services are not provided. Psychological, emotional and social needs are as relevant as physical needs. The four bands are critical, substantial, moderate and low. Most local authorities fund services to meet all critical and substantial risks, and a few meet some moderate band risks. Once a local authority has decided that a person s needs are serious enough to be funded, it must provide a service and is not entitled at that point to refuse or defer services on the grounds of shortage of resources. If there are alternative ways of meeting assessed needs, a local authority is entitled to take into account the relative costs in choosing which service to provide. Once a service has been assessed as necessary, the local authority is not entitled to withdraw or reduce the service without first carrying out a reassessment. The Department of Health s Guidance on the Provision of Adult Care (referred to as the Prioritising Need Guidance of 2010), which is binding on local authorities, sets out precisely how they must carry out the banding exercise. For example, needs for services will be banded as critical if, in the absence of services, the following (among other issues) would occur, or have already occurred: Significant health problems Inability to carry out vital personal care/ domestic routines Unsustainability of vital social support systems and relationships Unsustainability of vital involvement in work, education or learning Little choice/control over vital aspects of immediate environment Local authorities, like the NHS, must also take into account the rights of every individual under the European Convention of Human Rights (ECHR), which was incorporated into English law through the Human Rights Act Included are the right not to be subjected to inhuman or degrading treatment (Article 3) and the right to respect for private and family life (Article 8), which embraces many aspects of personal autonomy and independence. This last right is qualified, which means that it can be infringed if there is a lawful and proportionate justification, such as the genuine prioritising of limited resources. There are several other assessment provisions that are relevant to particular groups of people or types of services, including specific obligations on the NHS and local authority social services to carry out thorough assessments and to put in place necessary services before the point of discharge from hospital. The Brain Injury Handbook 101

104 Carers There are thought to be over five million carers in the UK, of whom over one million provide more than 50 hours care a week. The value of unpaid care is said to be about 118 billion per annum. Carers, defined as those who provide a substantial amount of care on a regular basis, have important statutory rights. Carers must normally be consulted by the local authority social services staff when they carry out an assessment. The assessor is under a duty to consider the ability of the carer to continue to provide care. However, carers rights are not confined to participating in the assessments of those for whom they are providing care. Carers and those intending to be carers have a right to request that a Carer s Assessment be carried out, either simultaneously with the assessment of the individual concerned or independently. Services which may be provided to carers may include physical help for example, with housework, shopping or collection of prescriptions or other forms of support such as training, counselling, travel assistance, driving lessons or provision of a mobile telephone/equipment. Services might include the provision of holidays or special trips and, often of great importance, the arrangement of respite or temporary care to give the carer a break. Although technically local authorities have a power, rather than being under a duty to provide services to carers, in practice they sometimes have no choice but to do so. Carers, like the person being cared for, have their needs assessed according to the level of risk applying in the event that services are not provided. The risk being measured is the risk to the sustainability of the carer s role. Local authorities not only have an obligation to inform carers of their rights to an assessment but, when assessing carers, must specifically take into account the effect of their caring role on: their ability or wish to work or undertake education; their family and social responsibilities; their autonomy; and their health. NHS or Social Services? Department of Health guidance states that when a person needs a certain intensity or level of nursing care, as opposed to social care, they should be assessed as being eligible for NHS Continuing Healthcare, the effect of which is that all care whether social or nursing and, in certain cases, accommodation is provided free under the NHS. This contrasts with the position of those who remain the responsibility of local authorities, who are entitled to means test and charge people for the provision of community care services, including accommodation. The borderline between social care and NHS care is a controversial area and is described in the Department of Health s National Framework for Continuing Healthcare (amended July 2009). In the past, the Health Commissioner (Ombudsman) has criticised Primary Care Trusts the NHS bodies responsible for assessing eligibility for NHS Continuing Healthcare for excluding many people who ought to have been assessed as eligible. When a person who has suffered a brain injury may need substantial nursing or medical care, it is important that advice about possible eligibility for NHS Continuing Healthcare is sought. On the other side of the coin, it is important to note that the NHS is not subject to the same individually enforceable duties as local authorities, as the legislation governing the NHS allows it far more 102

105 Legal issues Section 6 discretion about how and when services are provided to patients. For example, once a local authority has assessed a person as needing a community care service, it must provide that service; by contrast, even if a patient needs an operation, the NHS is quite entitled (subject only to European Court of Human Rights considerations) to put an individual on what may be a long waiting list. There is now limited scope for the provision of Direct Payments to those who are Continuing Healthcare patients under the pilot schemes set up to test NHS Direct Payments. The intention is to expand Direct Payments in due course. Capacity and consent Individuals who have sustained serious brain injuries, with enduring effects, often have impaired abilities to take certain decisions. These decisions may relate to the most important choices in life: where to live, whether or not to undergo serious medical treatment, how to spend income and savings, which people to have contact with, etc. If the injured person is an adult (or in most cases aged 16 or over), no other adult, however closely tied to the injured person, has the legal right to make these decisions on their behalf. Indeed, sometimes it may be difficult to decide whether a person does, or does not, have capacity to take decisions themselves. These issues are governed by the Mental Capacity Act 2005, which sets out that capacity is issue-specific (a person may have capacity to take certain decisions, but not others) as well as time-specific (capacity to take a particular decision may vary at different periods). There is a presumption that a person has capacity. The Act sets out how capacity should be assessed. It goes on to provide mechanisms for decisions to be taken for those who are assessed as not having capacity, including the appointment of Deputies, who may be empowered to take certain decisions on behalf of patients, and independent mental capacity advocates, who assist in particularly vital decisions about where a person should be cared for and whether he/she should undergo serious medical treatment. If a person is assessed, in relation to a particular issue, as lacking capacity, any decision taken must be in their best interests. Best interests must always include consideration of the wishes of the person concerned (although if he/she lacks capacity, their wishes will not be decisive) and should always include consultation with anyone engaged in caring for the person or interested in his/her welfare. Conclusion Community care law is a fragmented and technical area. As a glance at the Department of Health website ( will reveal, it is also an area that develops and changes with great speed. Many people are not aware that there are detailed laws that spell out the powers and duties of local authorities and the NHS towards those with disabilities. There is a risk that many victims of accident or assault who suffer brain injuries with significant effects may not receive the statutory services to which they may be entitled as often they, or those who care for them, are too worn down to question whether they are due more than is offered. Lack of appropriate services can have serious consequences for a person with a brain injury and their carers and family. In contrast, provision of appropriate services can bring about substantial improvement in the quality of life for all concerned. The Brain Injury Handbook 103

106 Social service provision and case managers in Scotland Robert Swanney, Senior Partner at Digby Brown Solicitors, outlines the financial issues that may arise in the case of litigation. The value of compensation When someone suffers a brain injury due to the fault of another party, it is reasonable for that person to seek fair and prompt compensation. While compensation cannot turn the clock back, it can pay for rehabilitation and proper care, which are often not available through NHS or social work services. In order to establish just what is needed, and to show the court that it will work well, it is good to set up a care regime as early as possible, so that the court can see that it is appropriate and effective. Funding the care regime Like the Claimant in England, the Pursuer in Scotland is able to seek interim damages and to use these to set up and manage a care regime. The law in Scotland does require that the Pursuer is certain of success and a full valuation of the case has to be placed before the court. If satisfied that interim damages should be awarded, then a reasonable proportion (perhaps up to 60 per cent) can be given. It is, therefore, necessary for a written defence to be lodged, which inevitably means that the case will have had to proceed to an advanced stage. If the insurers accept liability at an early point then as in England voluntary interim payments are often made. 104

107 Legal issues Section 6 Alternatively, social work departments can provide support, possibly through Direct Payments. A recent Opinion of Lord Carloway in Fletcher v Lunan did indicate that judicial thinking was moving in the same direction as England with the court simply asking whether the claims in respect of care are reasonable and awarding damages to pay for it if so found. Many insurers, however, continue to argue that if the local authority will pay for a care regime, then the Pursuer has suffered no loss and the insurer should not be required to pay damages in respect of care. Will the State provide funding? The position in Scotland is similar to that in England since the National Health Service and Community Care Act 1990 came into being. The statutory authorities (through social work departments) are required to carry out an assessment of need, and to try to meet that need from their resources. Certain sections of the Act do not apply in Scotland and the different legislative framework set out in the Social Work (Scotland) Act 1968 and the Community Care and Health (Scotland) Act 2002 leads to a different and less certain position in relation to financial assessment by the local authority for the provision of nonresidential care. In other words, when it comes to providing care in a person s own home, rather than nursing home care, there is a good deal of variation between one local authority and another. The Brain Injury Handbook 105

108 Financial assessment by local authorities in Scotland As in England, these arguments have necessitated a review of the law on financial assessment provisions for both residential and non-residential care. It is generally accepted in Scotland that for residential care these provisions are the same, with Charging for Residential Accommodation Guidance (CRAG) applying. Money derived from a personal injury held in a Personal Injury Trust or to the order of the court is excluded from the meanstesting process in relation to capital and income. The position in relation to charging for non-residential care is entirely different with local authorities maintaining that they have discretion on whether to charge and the level of the charge. This is important since after a brain injury most people are living at home, rather than in a nursing home, and it means that in these cases the local authorities have discretion each can decide for itself and can change policy from time to time. In Scotland, the UK s Fairer Charging Guidelines issued under Section 7 of the Local Authority Social Services Act 1970 do not apply. The Convention of Scottish Local Authorities issued a voluntary guideline in January 2006, which makes no mention of money derived from a personal injury and specifies those items of income and capital which can be excluded. This guidance is not binding on the local authorities and, as a consequence, the financial assessment approach differs from area to area. However, the prevailing practical approach by many local authorities is to include capital and income derived from a personal injury this means that if a person has received an award of damages, they will have to pay the maximum charge for any care received. While this may seem beneficial to those having to counter the insurer s position that the local authority will pay for the care regime, it does leave the Pursuer in a difficult position if the settlement is a compromise one in relation to care. This will frequently happen in cases where the Claimant is partly responsible for the accident, e.g. for not wearing a seatbelt. The result for the Claimant is that damages awarded for pain and suffering are used to pay for care. The solution It is clear that all Pursuers with brain injury should seek to set up and manage their care regime privately and that the appointment of a case manager will invariably be necessary. For that reason, expert legal advice will give access to the needed rehabilitation services in the form of an experienced rehabilitation provider with case managers who are members of BABICM or CMSUK and who have proven experience in managing non-residential care regimes for those with a brain injury. It is important that the Pursuer get advice from experienced personal injury lawyers. 106

109 The Brain Injury Handbook 107

110 The Court of Protection and the Office of the Public Guardian The Court of Protection and the Office of the Public Guardian make decisions about property and welfare for those who lack capacity to do so. The Court of Protection and the Office of the Public Guardian were created under the Mental Capacity Act (the Act), which came into effect in England and Wales (separate arrangements exist for Scotland and Northern Ireland) on 1 October The Court of Protection The Court of Protection makes decisions in relation to the property, affairs, healthcare and personal welfare of adults, and children in a few cases, who lack capacity. The court also has the power to make declarations about whether someone has the capacity to make a particular decision. The Office of the Public Guardian The Office of the Public Guardian (OPG) is an agency of the Ministry of Justice. The OPG supports and promotes decision-making for those who lack capacity or who would like to plan for their future within the framework of the Act. The head of the OPG is the Public Guardian. The Public Guardian is responsible for: Supervising Deputies appointed by the court Keeping registers of Deputies, Lasting Power of Attorneys (LPAs) and Enduring Power of Attorneys (EPAs) Investigating representations, including complaints about Deputies and Attorneys acting under registered LPAs or EPAs 108 The Mental Capacity Act The Act provides a basis to empower people to make decisions for themselves as far as is possible and to protect vulnerable people who are not able to make their own decisions because of the way their brain is affected: for instance, from illness, injury, disability or substance misuse.

111 Legal issues Section 6 It sets out options for people who want to plan ahead, enabling them to appoint someone they trust to make decisions if they should lack capacity at some time in the future and it clearly sets out the law on advance decisions to refuse treatment. The Act also gives further protection to vulnerable people by making a criminal offence the ill-treatment or wilful neglect of someone who lacks capacity. In addition, it provides protection for carers and professionals working with people who lack capacity, who comply with its provisions. The Code of Practice The Code of Practice (the Code) provides guidance on how the Act works on a day-today basis. It has case studies and explains in more detail the key features of the law. Certain categories of people have a legal duty to have regard to the Code. They include: Professionals and anyone who is paid for the work that they do in relation to people who lack capacity, e.g. doctors, nurses, social workers, case managers, solicitors, police officers, paramedics, carers and attorneys appointed under an LPA or an EPA. Deputies appointed by the Court of Protection. Family, friends and unpaid carers do not have a duty to have regard to the Code but will still find the guidance helpful. Deputies Some people may feel that an LPA is not for them. If this is the case, and that person then loses the capacity to make important decisions in the future because of the way their brain is affected, then a relative, friend or a professional may need to apply to the court to be given authority to make decisions on behalf of this person. The court can appoint someone to make a single decision, or it may appoint someone, known as a Deputy, to make a series of decisions. In this instance, whoever the court appoints might not be someone who the person would have chosen themselves. What is an LPA? An LPA is a legal document that allows a person (the Donor) to choose someone now (the Attorney) that they trust to make decisions about things such as property and affairs, or personal welfare, for them at a time in the future when they lack the capacity to make those decisions. An LPA must be registered with the Office of the Public Guardian (OPG) before it can be used. LPAs replace the previous system of Enduring Power of Attorneys (EPAs). An EPA made before October 2007 is still valid, and must also be registered with the OPG should the Donor lose capacity in the future. However, an EPA allows a chosen Attorney only to make decisions regarding financial affairs. If a Donor would like to appoint someone to make decisions about their personal welfare should they lose capacity, they would need to make a personal welfare LPA. The Brain Injury Handbook 109

112 For more information about the court or the OPG, including the type of applications that may be made and the forms required, please: Visit the OPG section of the following websites: or Call the OPG on (Monday to Friday, 9am to 5pm) gsi.gov.uk It is recommended that individuals consider seeking their own independent legal advice OPG staff will not be able to provide this. Anthony Gold Solicitors Supporting the work of Rehab Anthony Gold is dedicated to providing specialist advice and support to people who have sustained a brain injury. April suffered severe brain damage at birth, when hospital staff failed to take notice of abnormalities in the fetal heart trace. Her delivery by emergency caesarian section was therefore delayed. This resulted in April suffering multiple disabilities, including severe learning difficulties, limited speech and behavioural problems. Jon Nicholson, a leading solicitor in this field and a partner at Anthony Gold, was contacted by April s family and obtained an early and substantial interim payment from the hospital to pay for speech and language therapy, physiotherapy, occupational therapy and appropriate accommodation. He assembled a team of experts to advise on April s long term needs and negotiated a settlement of her claim which included a lump sum payment of 2 million plus stepped annual payments, linked to earnings, to pay for the care she requires for the rest of her life. Solicitors at Anthony Gold have a wealth of experience in brain injury compensation claims and provide specialist help in this complex area. We offer free, no obligation consultations at home or in hospital for as long as it takes to understand your case. We can work under no win no fee agreements. We have a community legal aid franchise for clinical negligence work so we can apply for public funding to bring a claim. 110 Call us for a free, no obligation consultation at our office, your home, or in hospital. Visit our website at or [email protected] The Counting House, 53 Tooley Street, London Bridge City, London SE1 2QN Also with offices at Streatham and Walworth

113 Section 7 Useful contacts and resources Rehab Group contacts Momentum Momentum (Head Office), Glasgow Pavilion 7, Watermark Park, 325 Govan Rd, Glasgow, G51 2SE T: E: [email protected] W: Momentum Brain Injury Services Momentum Care, Blyth 101 Waterloo Rd, Blyth, Northumberland, NE24 1BY T: E: [email protected] Momentum Care, Glasgow Pavilion 7, Watermark Park, 325 Govan Rd, Glasgow, G51 2SE T: E: [email protected] Momentum Skills, Aberdeen South Wing, Migvie House, 23 North Silver St, Aberdeen, AB10 1RJ T: E: [email protected] Momentum Skills, Ayrshire 17 Vernon St, Saltcoats, KA21 5HE T: E: [email protected] The Brain Injury Handbook 111

114 Momentum Skills, Birmingham Borough Buildings, John Bright St, Birmingham, B1 1BN T: E: Momentum Skills, Glasgow 7th Floor, Tower 77, 77 Renfrew St, Glasgow, G2 3BZ T: E: Momentum Skills, Newcastle Forth Bank House, Skinnerburn Rd, Newcastle, NE1 3RH T: E: The Chaseley Trust The Chaseley Trust, Eastbourne South Cliff, Eastbourne, BN20 7JH T: E: W: Rehab Group Rehab Group (Head Office), Dublin Roslyn Park, Sandymount, Dublin 4, Ireland T: E: W: Momentum Skills, Scottish Borders Galabank House, Galabank Business Park, Galashiels, TD1 1PR T: E: Momentum Skills, South Lanarkshire Room F.01, CTEC Building, 1-15 Main St, Cambuslang, Glasgow, G72 7EX T: E: 112

115 Useful contacts and resources Section 7 Other organisations Ability Net Central England IBM UK, Birmingham Rd, Warwick, CV34 5JL T: W: Assist UK 1 Portland St, Manchester, M1 3BE T: E: [email protected] W: Action Against Medical Accidents (AvMA) 44 High St, Croydon, Surrey, CR10 1YB T: W: Brain and Spinal Injury Charity (BASIC) 554 Eccles New Rd, Salford, M5 5AP T: E: [email protected] W: Brain Injury Rehabilitation Trust (BIRT) 60 Queen St, Normanton, Wakefield, WF6 2BU T: E: [email protected] W: Brain Tree Training (Cognitive Rehabilitation Services) PO Box 79, Leatherhead, Surrey, KT23 4YT T: E: [email protected] W: Brainwave Centre for Rehabilitation and Development (North-West) Unit 602, Birchwood One Business Park, Dewhurst Rd, Birchwood, Warrington, WA3 7PU T: E: [email protected] W: Brainwave Centre for Rehabilitation and Development (South-East) Beechen House, Rear of 16 Newland St, Witham, Essex, CM8 2AQ T: E: [email protected] W: Brainwave Centre for Rehabilitation and Development (South-West) Huntworth Gate, Bridgwater, Somerset, TA6 6LQ T: E: [email protected] W: The Brain Injury Handbook 113

116 British Brain and Spinal Foundation 336 Canterbury Court, Kennington Park, 1-3 Brixton Rd, London, SW9 6DE T: E: W: British Institute for Brain Injured Children Knowle Hall, Bridgwater, Somerset, TA7 8PJ T: E: W: British Psychological Society St Andrew s House, 48 Princess Rd East, Leicester, LE1 7DR T: E: [email protected] W: Carers Trust (Head Office) Loman St, London, SE1 0EH T: E: [email protected] W: Case Management Services 350A Lanark Rd West, Currie, Edinburgh, EH14 5RR T: E: [email protected] W: Cerebra The Foundation for the Brain Injured Child Freepost SWC 3360, Carmarthen, SA31 1ZY T: E: [email protected] W: Child Brain Injury Trust (CBIT) Unit 1, The Great Barn, Barnyards Green Farm, Oxfordshire, OX27 75G T: E: [email protected] W: Connect The Communication Disability Network Marshalsea Rd, London, SE1 1HL T: E: [email protected] W: Contact a Family City Rd, London, EC1V 1JN T: E: [email protected] W: Headlines Craniofacial Support 128 Beesmoor Rd, Frampton Cotterell, Bristol, B536 2JP T: E: [email protected] W: 114

117 Useful contacts and resources Section 7 David Lewis Centre for Epilepsy Mill Lane, Warford, Alderley Edge, Cheshire, SK9 7UD T: W: Disabilities Trust 1st Floor, 32 Market Place, Burgess Hill, West Sussex, RH15 9NP T: E: [email protected] W: Disability Law Services Cavell St, London, E1 2BP T: E: [email protected] W: Disabled Living Foundation Harrow Rd, London, W9 2HU T: E: [email protected] W: Disabled Persons Transport Advisory Committee 2/17 Great Minster House, 33 Horseferry Rd, London, SW1P 4DR T: E: [email protected] W: Employers Forum on Disability Nutmeg House, 60 Gainsford St, London, SE1 2NY T: E: [email protected] W: Encephalitis Society The Encephalitis Resource Centre, 32 Castlegate, Malton, North Yorkshire, YO17 7DT T: W: Epilepsy Action New Ansley House, Gateway Drive, Yeadon, Leeds, LS19 7XY T: E: [email protected] W: Headway The Brain Injury Association Bradbury House, 190 Bagnall Rd, Old Basford, Nottinghamshire, NG6 8SF T: E: [email protected] W: Karten Network of CTEC Centres T: E: [email protected] W: The Brain Injury Handbook 115

118 Leonard Cheshire Head Office, 66 South Lambeth Rd, London, SW8 1RL T: E: W: Margaret Blackwood Housing Association Craigievar House, 77 Craigmount Brae, Edinburgh, EH12 8XF T: E: W: MENCAP 123 Golden Lane, London, EC1Y 0RT T: E: W: Meningitis Trust Centrum Offices, 38 Queen St, Glasgow, G1 3DX T: E: W: MIND Broadway, Stratford, London, E15 4BQ T: E: W: National Centre for Brain Injury Rehabilitation St Andrew s Healthcare, Billing Rd, Northampton, NN1 5DG T: E: [email protected] W: National Society for Epilepsy Chesham Lane, Chalfont St Peter, Bucks, SL9 0RJ T: W: Neuropsychologists UK 37 Montieth View, Dunblane, Stirling, FK15 0PD E: [email protected] W: NHS 24 (Scotland) T: W: NHS Direct T: W: Parent Partnership Scheme Parent Partnership Service, The Liz Yates Centre, The Poplars, Lightmoor, Telford, TF4 3QN T: E: [email protected] W: 116

119 Useful contacts and resources Section 7 Physically Handicapped and Able-bodied (PHAB) Summit House, 50 Wandle Rd, Croydon, Surrey, CR0 1DF T: E: [email protected] W: Queen Elizabeth s Foundation (QEF) Leatherhead Court, Woodlands Rd, Leatherhead, Surrey, KT22 0BN T: E: [email protected] W: RADAR Royal Association for Disability and Rehabilitation 12 City Forum, 250 City Rd, London, EC1V 8AF T: E: [email protected] W: Relate Premier House, Carolina Court, Lakeside, Doncaster, DN4 5RA T: W: Remploy Ltd 18c Meridian East, Meridian Business Park, Leicester, LE19 1WZ T: W: Royal Society for the Prevention of Accidents RoSPA House, 28 Calthorpe Rd, Edgbaston, Birmingham, B15 1RP T: E: [email protected] W: Shaw Trust Shaw Trust Enquiries, Fox Talbot House, Greenways Business Park, Bellinger Close, Chippenham, SN15 1BN T: W: Stroke Association Stroke House, 240 City Rd, London, EC1V 2PR T: W: TRU Transitional Rehabilitation Unit Ltd Margaret House, 342 Haydock Lane, Haydock, St Helen s, Merseyside, WA11 9UY T: W: The Brain Injury Handbook 117

120 Services There is a wide range of services available in the community, some specifically for those with a brain injury or other disability. Listed here are contact details of some national organisations that may be able to help with activities, counselling, day services, education, employment, housing, support groups and voluntary work. Additionally, there may be a variety of services specific to your area. Any public library should be able to provide information. Alternatively, you might wish to consult the Yellow Pages. The Citizen s Advice Bureau and Social Services may also have some information. London Rehabilitation units Blackheath Brain Injury Rehabilitation Centre and Neurodisability Service Blackheath Hill, London, SE10 8AD T: E: [email protected] W: Homerton Regional Neurological Rehabilitation Unit (RNRU) Homerton Row, Hackney, London, E9 6SR T: W: Hugh Myddleton House Care Centre 25 Old Farm Avenue, Southgate, N14 5QR T: W: National Hospital for Neurology and Neurosurgery (University College London Hospitals NHS Foundation Trust) Queen Square, London, WC1N 3BQ T: W: Royal Hospital for Neurodisability West Hill, Putney, London, SW15 3SW T: W: Wellington Hospital Wellington Place, St John s Wood, London, NW8 9LE T: E: [email protected] W: Wilsmere House Care Centre Wilsmere Drive, Harrow Weald, HA3 6BJ T: W: 118

121 Useful contacts and resources Section 7 South-East Rehabilitation units Brain Injury Rehabilitation Trust (BIRT) Thomas Edward Mitton House, 37 Belvoir Avenue, Emerson Valley, Milton Keynes, MK4 2JA T: W: Chalfont Lodge Care Centre Denham Lane, Chalfont St Peter, SL9 0QQ T: W: Defence Medical Rehabilitation Centre (DMRC) Headley Court, Headley, Epsom, Surrey, KT18 6JW T: W: Disability Resource Team, Amersham General Hospital Amersham Hospital, Whielden St, Amersham, Bucks, HP7 0JD T: W: Donald Wilson House Rehabilitation Centre St Richard s Hospital, Spitalfield Lane, Chichester, West Sussex, PO19 6SE T: W: Essex Rivers Healthcare NHS Trust Lexden Road, Colchester, Essex, CO3 3NB T: W: Friston House Care Home 414 City Way, Rochester, ME1 2BQ T: W: Haslemere Hospital, Godwin Unit Church Lane, Haslemere, GU27 2BJ T: Holy Cross Hospital Haslemere, Surrey, GU27 1NQ T: E: [email protected] W: Huntercombe Hospital Huntercombe Lane South, Tallow, Maidenhead, SL6 0PQ T: E: [email protected] W: The Brain Injury Handbook 119

122 Luton and Dunstable Hospital NHS Foundation Trust, Lewsey Rd, Luton, LU4 6DZ T: W: Medway Maritime Hospital Windmill Road, Gillingham, Kent, ME7 5NY T: / E: W: Northwick Park and St Mark s Hospital, Regional Rehabilitation Unit The North-West London Hospitals NHS Trust, Northwick Park Hospital, Watford Rd, Harrow, HA1 3UJ T: W: Partnerships in Care Kneesworth House Hospital, Bassingbourn-cum-Kneesworth, Royston, Herts, SG8 5JP T: W: Paternoster House Care Centre Paternoster Hill, Waltham Abbey, EN9 3JY T: W: Peartree House 8A Peartree Avenue, Bitterne, Southampton, Hampshire, SO19 7JP T: E: [email protected] W: Queen Elizabeth s Foundation Brain Injury Centre QEF Neurorehabilitation Services, Banstead Place, Park Rd, Banstead, SM7 3EE T: E: [email protected] W: Raphael Medical Centre Hollanden Park, Coldharbour Lane, Hildenborough, Tonbridge, Kent, TN11 9LE T: E: [email protected] W: Rayners Hedge Neurological Centre Croft Rd, Aylesbury, HP21 7RD T: W: Regard Partnership Units 1, 6, 7, Princeton Mews, London Road, Kingston upon Thames, Surrey, KT2 6PT T: / W: 120

123 Useful contacts and resources Section 7 Rehab Without Walls 27 Presley Way, Milton Keynes, Buckinghamshire, MK8 0ES T: W: Robinia Care, Kent 5th Floor, Maybrook House, Queen s Gardens, Dover, Kent, CT17 9AH T: W: Robinia Care, Surrey The Old Grove, Hindhead, Surrey, GU26 6BN T: W: Royal Berkshire Hospital, NHS Trust London Rd, Reading, RG1 5AN T: W: Royal Buckinghamshire Hospital Buckingham Rd, Aylesbury, Bucks, HP19 9AB T: E: [email protected] W: Royal Star and Garter Home Richmond Hill, Richmond, Surrey, TW10 6RR T: W: Snowdon Neurological Rehabilitation Unit Western Community Hospital, William Macleod Way, Hampshire, SO16 4XE T: W: Southampton Rehabilitation Unit Tremona Rd, Southampton, SO16 6YD T: W: Sussex Rehabilitation Centre, Brighton General Hospital Elm Grove, Brighton, BN2 3EX T: ext W: The Brain Injury Handbook 121

124 Titleworth Healthcare Titleworth One to One, 1-3 Adelaide Rd, Surbiton, Surrey, KT6 4TA T: E: W: Winchester House Care Home 180 Wouldham Rd, Rochester, ME1 3TR T: W: South-West Rehabilitation units Alfred Morris House Rehabilitation Unit Taunton and Somerset NHS Foundation Trust, Musgrove Park Hospital, Taunton, Somerset, TA1 5DA T: W: Alphinbrook Unit, Lucerne House Care Centre Chudleigh Rd, Alphington, Exeter, EX2 8TU T: W: Bath Head Injury and Neurorehabilitation Unit RNHRD, Upper Borough Walls, Bath, BA1 1RL T: W: Cornwall Stroke Service Royal Cornwall Hospital, Truro, Cornwall, TR1 3LJ T: W: Dorset Brain Injury Service, c/o Poole Hospital, NHS Trust Longfleet Rd, Poole, Dorset, BH15 2JB T: W: Frenchay Brain Injury Rehabilitation Centre Frenchay Park Rd, Bristol, BS16 1UU T: E: W: Glenside Manor, Wiltshire Glenside, Warminster Rd, South Newton, Salisbury, Wiltshire, SP2 0QD T: E: W: 122

125 Useful contacts and resources Section 7 Kenwyn Care Home Newmills Lane, Truro, TR1 3EB T: W: National Star College Ullenwood, Cheltenham, GL53 9QU T: W: Plymouth Neurorehabilitation Unit, Derriford Hospital Crownhill, Plymouth, Devon, PL6 8DH T: W: Quantock Unit, Weston General Hospital Grange Rd, Uphill, Weston-super-Mare, Somerset, BS23 4TQ T: W: Roborough House, Plymouth Tamerton Rd, Woolwell, Plymouth, PL6 7BQ T: E: [email protected] W: Rosehill Rehabilitation Service, Torquay Lower Warberry Rd, Torquay, TQ1 1QY T: W: Royal Devon and Exeter Trust, Devon Barrack Rd, Exeter, EX2 5DW T: W: Salisbury Healthcare NHS Trust, Wiltshire Salisbury, Wiltshire, SP2 8BJ T: W: Waters Park House, Plymouth Exmouth Rd, Stoke, Plymouth, PL1 4QQ T: E: [email protected] W: West Abbey Care Centre Stourton Way, Yeovil, BAZ1 3UA T: W: The Brain Injury Handbook 123

126 West Midlands Rehabilitation units Cannock Chase Hospital Rehabilitation Day Unit Brunswick Rd, Cannock, WS11 5XY T: W: Cherry Trees Care Home Stratford Rd, Oversley Green, Alchester, B49 6LN T: W: Craegmoor Healthcare 21 Miller Court, Tewkesbury Business Park, Tewkesbury, GL20 8DN T: E: W: Evesham and Malvern Hills College (Evesham Campus) South Worcestershire College, Davies Rd, Evesham, Worcestershire, WR11 1LP T: W: Evesham and Malvern Hills College (Malvern Campus) South Worcestershire College, Albert Road North, Malvern, Worcestershire, WR14 27H T: W: Guardian Care The Guardian Care Centre, Longton Rd, Trentham, Stoke-on-Trent, ST4 8FF T: W: Huntercombe Hospital Ivestsey Bank, Wheaton Aston, Stafford, ST19 9QT T: E: W: Robinia Unit 7, Marchington Industrial Estate, Stubby Lane, Uttoxeter, ST14 8LP T: Royal Leamington Spa Rehabilitation Hospital Heathcote Lane, Heathcote, Warwick, CV34 6SR T: W: 124

127 Useful contacts and resources Section 7 West Park Rehabilitation Hospital Park Road West, Wolverhampton, WV1 4PW T: W: North-West Rehabilitation units Acquired Brain Injury Service for South Cheshire Acorn Suite,1829 Building, Countess of Chester Health Park, Liverpool Rd, Chester, CH2 1HJ T: W: Clatterbridge Hospital, Neurorehabilitation Unit Clatterbridge Rd, Bebington, Wirral, CH63 4JY T: W: Clifton Hospital Pershore Rd, Lytham St Anne s, Lancashire, FY8 1PB T: W: Gisburne Park Hospital Park Rd, Gisburn, Lancashire, BB7 4HX T: W: Glaxo Neurological Centre Norton St, Liverpool, Merseyside, L3 8LR T: Highbank (Neurorehabilitation) Walmersley House, Walmersley Rd, Bury, Lancashire, BL9 5LX T: E: [email protected] W: Leonard Cheshire, Oakwood ABI Service Radford Close, Offerton, Stockport, Cheshire, SK2 5DL T: E: [email protected] W: N-Able Services 2 Power Rd, Bromborough, Wirral, Merseyside, CH62 3QT T: W: Floyd Unit, Birch Hill Hospital Rochdale, OL12 9QB T: W: The Brain Injury Handbook 125

128 Northern Case Management Unit 13, Brenton Business Complex, Bond St, Bury, BL9 7BE T: E: W: Ways to Work 2 Champness Hall, Drake St, Rochdale, Greater Manchester, OL16 1PB T: W: North-East NHS and NHS Trust rehabilitation units Neurorehabilitation Unit, Monkwearmouth Hospital Newcastle Rd, Sunderland, SR5 1NB T: W: Phoenix Unit, Hartlepool General Hospital Holdforth Rd, Hartlepool, TS24 9AH T: W: Rehabilitation units Brain Injury Rehabilitation and Development (BIRD) The Old Coach House, Church Rd, Eccleston, Chester, CH4 9HT T: W: Hawthorns Care Centre O Neill Drive, Peterlee, SR8 5UP T: W: Huntercombe Centre (Sunderland) Leechmere Rd, Sunderland, Tyne and Wear, SR2 9DJ T: W: Huntercombe House (Stockton) 3 Norton Rd, Stockton-on-Tees, TS20 2BL T: W: Neural Pathways Design Works, Felling, Gateshead, Tyne and Wear, NE10 0JB T: E: [email protected] W: Robinia (North) Unit B, Moor Park Business Centre, Wakefield, West Yorkshire, WF2 8PF T: E: [email protected] 126

129 Useful contacts and resources Section 7 Yorkshire and Humberside Rehabilitation units Magnolia Lodge Younger Disabled Unit Doncaster and South Humber Healthcare NHS Trust, Doncaster, DN4 8QL T: National Demonstration Centre in Rehabilitation Community Rehabilitation Unit, St Mary s Hospital, Green Hill Rd, Leeds, LS12 3QE T: REACH 14 The Stables, Newby Hall, Ripon, North Yorkshire, HG4 5AE T: W: East Midlands Rehabilitation units Derbyshire Royal Infirmary Head Injury Team London Rd, Derby, DE1 2QY T: W: Grafton Manor Brain Injury Rehabilitation Unit Grafton Regis, Northampton, NN12 7SS T: E: [email protected] W: Leicester General Hospital Gwendolen Rd, Leicester, LE5 4PW T: W: Lincoln County Hospital Greetwell Rd, Lincoln, Lincolnshire, LN2 5QY T: W: Linden Lodge Rehabilitation Unit and Nottingham Traumatic Brain Injury Services, Nottingham City Hospital Nottingham University Hospital, City Hospital Campus, Mobility Centre, Hucknall Rd, Nottingham, NG5 1PJ T: W: Oakleaf Care Hilltop House, Ashton Rd, Hartwell, Northamptonshire, NN7 2EY T: E: [email protected] W: Richardson Partnership for Care Brain Injury Offices, 144 Boughton Green Rd, Kingsthorpe, Northampton, NN2 7AA T: E: [email protected] W: The Brain Injury Handbook 127

130 East Anglia Rehabilitation units Anglia Case Management Ticehurst Yard, Beyton Rd, Tostock, Bury St Edmonds, Suffolk, IP30 9PH T: E: W: Brain Injury Rehabilitation Trust (BIRT) 32 Market Place, Burgess Hill, West Sussex, RH15 9NP T: E: W: Lewin Rehabilitation Unit, Addenbrooke s Hospital Cambridge University Hospitals, Hills Rd, Cambridge, CB2 0QQ T: W: Livability, Brain Injury Rehabilitation Centre Chilton Way, Stowmarket, Suffolk, IP14 1SZ T: W: Meadow House, Norfolk Norwich Rd, Swaffham, Norfolk, PE37 8DD T: W: Norfolk and Norwich University Hospital NHS Trust Colney Lane, Norwich, Norfolk, NR4 7UY T: W: Oak Farm Physical Rehabilitation Unit 276 Fakenham Rd, Taverham, Norwich, NR8 6AD T: E: [email protected] W: Oliver Zangwill Centre for Neuropsychological Rehabilitation The Princess of Wales Hospital, Lynn Rd, Ely, Cambridgeshire, CB6 1DN T: E: [email protected] W: Papworth Trust Bernard Sunley Centre, Papworth Everard, Cambridge, CB23 3RG T: / E: [email protected] W: Northern Ireland Rehabilitation units Brain Injury Team, County Antrim T: W: 128

131 Useful contacts and resources Section 7 Scotland Rehabilitation units Aberdeen Brain Injury Grampian Group Chaplain s Office, Royal Aberdeen Children s Hospital, Westburn Rd, Aberdeen, AB25 2ZN T: E: [email protected] W: Central Scotland Brain Injury Rehabilitation Centre Huntercombe Services Murdostoun, Bonk, Newmains, Wishaw, ML2 9BY T: W: Centre for Brain Injury Rehabilitation, Royal Victoria Hospital Jedburgh Rd, Dundee, DD2 1SP T: W: Child Brain Injury Trust (CBIT) Norton Park, 57 Albion Road, Edinburgh, EH7 5QY T: E: [email protected] W: Community Treatment Centre for Brain Injury 70 Commercial Rd, Gorbals, Glasgow, G5 0QZ T: W: Edinburgh Headway Group Headway House, Astley Ainslie Hospital, Canaan Lane, Edinburgh, EH9 2HL T: E: [email protected] W: Fife Rehabilitation Service, Cameron Hospital Windygates, Fife, KY8 5RR T: W: Headway Ayrshire Beresford Court, Beresford Lane, Ayr, Ayrshire, KA7 2DW T: E: [email protected] W: Leonard Cheshire, Pinewood Acquired Brain Injury Service 3 St Andrew s Way, Livingston, Deans, EH9 2HL T: W: Scottish Brain Injury Rehabilitation Services Astley Ainslie Hospital, 133 Grange Loan, Edinburgh, EH9 2HL T: E: [email protected] W: Seven Arches Unit, South Grange Care Centre Grange Rd, Monifieth, DD5 4HT T: W: The Brain Injury Handbook 129

132 Wales Independent/other rehabilitation units Awel-y-Mor Care Centre Brynafon Rd, Gorseinon, Swansea, SA4 4YF T: W: Morriston Hospital Heol Maes Eglwys, Morriston, Swansea, SA6 6NL T: W: Welsh Spinal and Rehabilitation Unit, Rockwood Hospital Fairwater Rd, Cardiff, CF5 2YN T: W: 130

133 Useful contacts and resources Section 7 Brain injury specialists Behaviour/cognitive problems Brain Injury Rehabilitation Unit (BIRU) Edgware Community Hospital, Burnt Oak Broadway, Edgware, HA8 0AD T: W: Kemsley Unit, St Andrew s Healthcare Billing Rd, Northampton, NN1 5DG T: W: Robert Ferguson Unit, Royal Edinburgh Hospital Morningside Place, Edinburgh, EH10 5HF T: W: Sports/activity for the disabled Disability Snowsport UK Cairngorm Mountain, Aviemore, PH22 1RB T: W: Organises winter sporting activities and holidays in Scotland, Austria and the USA for people with disabilities. Duke of Edinburgh s Award Gulliver House, Madeira Walk, Windsor, Berkshire, SL4 1EU T: E: [email protected] W: Provides a programme of activities to develop young people aged between 14 and 24. Extend 2 Place Farm, Wheathampstead, Hertfordshire, AL4 8SB T: E: [email protected] W: Aims to improve the mobility of older people and mentally/physically disabled with movement to music. Head4Adventure Cloverley Dale Farm, New St Lane, Market Drayton, Shropshire, TF9 3RN T: E: [email protected] W: Providing outdoor activities and respite breaks for people with a brain injury across the UK. Jubilee Sailing Trust 12 Hazel Rd, Woolston, Southampton, SO19 7GA T: E: [email protected] W: Promotes integration of people of all physical abilities through the challenge of sailing tall ships on the open sea. London Sports Forum for Disabled People Unit 2B07, London South Bank University, Technopark, 90 London Road, London, SE1 6LN T: W: Develops sport and recreation activities for disabled people. The Brain Injury Handbook 131

134 Discrimination Disability Law Service Cavell St, London, E1 2BP T: E: W: The Equality and Human Rights Commission (England) 3 More London, Riverside Tooley St, London, SE1 2RG T: E: [email protected] W: The Equality and Human Rights Commission (Scotland) The Optima Building, 58 Robertson St, Glasgow, G2 8DU T: E: [email protected] W: Neuro Specialists, Realising Potential, Changing Lives Krysalis specialises in Occupational Therapy rehabilitation of adults and children with acquired brain injury. We have extensive experience and expertise allowing us to offer a specialist approach. Krysalis has coverage throughout the entire UK. Krysalis unique offering is based around: Established network of highly skilled neurological Occupational Therapists offering a variety of skills from rehabilitation of clients with high levels of dependency to those wishing to return to work. Use of standardised assessment tools throughout the occupational therapy process to provide a baseline for treatment and monitor progress. A commitment to the management, implementation, monitoring and delivery of a rehabilitation service of the highest quality. An advisory service for organisations wh o provide specialist residential placements and have a need for support with occupational therapy service provision. For further information about how Krysalis unique offering can help you and your client please contact the team at: or [email protected] Visit our website: The Equality and Human Rights Commission (Wales) 3rd Floor, 3 Callaghan Square, Cardiff, CF10 5BT T: E: [email protected] W: Counselling Samaritans Chris, Freepost, RSRB-KKBY-CYJK, PO Box 9090, Stirling, FK8 2SA T: W: 132

135 We ll support you... Leo Abse & Cohen Solicitors has over 50 years experience of working for accident victims. We have a team of solicitors who specialise in acting for those who have suffered a brain injury to make a positive difference. Not every brain injury claim is the same. We will spend time getting to know you and your circumstances. We develop both a personal and professional relationship with you, your family and carers, and home or hospital visits can be arranged at a time convenient to you. Our support does not end when the case finishes. As a specialist head injury solicitor we see our role as much more than helping you with the legal process and obtaining maximum compensation. Post settlement we will assist you with your financial matters, ensuring your future is safeguarded. We focus on providing specialist rehabilitation to assist with your recovery and strive to ensure the family is supported every step of the way with the aid of a dedicated case manager. We also specialise in Court of Protection, looking after the financial affairs of those who do not have the capacity to manage their own affairs. WE WORK ON A 'NO WIN, NO FEE' BASIS. Leo Abse & Cohen has offices in Cardiff, Newport, Swansea, Exeter, Taunton, Swindon and Bristol. Freephone Mark Church on [email protected] Proud supporters of Rehab I could ask any question whenever and as often as I liked, never feeling I was an inconvenience and always feeling the people I was dealing with genuinely cared Client of Helen Goatley - Partner The Brain Injury Handbook 133

136 b+m = brain injury specialists Balfour+Manson has a dedicated team of personal injury solicitors based in Edinburgh and Aberdeen. Don t just take our word for it... Ranked Number one by Chambers Guide to the Legal Profession and Legal 500 for personal injury Solicitors named as Leaders in their Field and Legal Experts Accredited by the Association of Personal Injury Lawyers Listed as Specialists by Headway and the Child Brain Injury Trust Supporters of Brain Injury Grampian Group. Contact us for a free initial consultation. EDINBURGH Frederick Street, Edinburgh EH2 1LS t: ABERDEEN 38 Albyn Place, Aberdeen AB10 1YN t: We have over 20 years experience of helping clients with brain injuries to Our specialist service is run by a multi-disciplinary achieve the financial security When needed a loved one has a brain injury it to help rebuild their lives. Our is life-changing service team comprising of: for the whole family. includes: We have over 20 years experience qualified of solicitors helping Rebuilding clients with brain lives injury a disability to secure social worker Free initial consultation financial security and to overcome an accounts some coordinator after a brain injury Visiting you at home or of in the hospital challenges they may face and in life. a welfare benefits advisor. When Our a loved services one has include: a brain injury it Access to early rehabilitation is life-changing for the whole family. We can help with: Clinical negligence We have over 20 years experience of interim payments Assistance with housing helping clients Disability with brain discrimination injury to secure adaptations and equipment financial security and to overcome some advice on all aspects of your claim, of the challenges Personal they Injury may face in life. including financial matters Early interim payments Our services include: Special Educational Needs specialist appeals treatments, therapy Clinical and negligence tribunals and private medical input Achieving financial compensation Disability discrimination Court of Protection management We will help you in every way that we No Win No Fee arrangements of finances following compensation. can. Personal For Injury a no obligation discussion, please contact Special Educational Sally Moore Needs on appeals 020 For 7650 further information contact Andrew Harding: We will help you in every way that we and tribunals client Olivia Bull who Our has client cerebral Olivia Bull can. For a no obligation discussion, palsy, who living has cerebral life to the palsy, fullest living after life to we the T: settled her case fullest after we settled her case. please contact Sally Moore We will on help you in every way that E: we [email protected] or can. For a no obligation discussion, please contact Sally Moore on t: e: [email protected] [email protected] w: Hodge House Our client Olivia Bull who has cerebral palsy, living life to the fullest after we settled her case St. Mary Street 23 disability review.indd 2 Cardiff 05/10/ :51 t: e: [email protected] w: CF10 1DY 134 Rebuilding lives after a brain injury When a loved one has a brain injury it is life-changing for the whole family. Rebuilding lives after a brain outcome. injury ld023 disability review.indd 2 05/10/ :51 BI ad 2012.indd 1 24/08/ :41:18 Specialist Brain Injury Solicitors Committed to providing support, assistance and guidance to individuals affected by a brain injury and their families. Hugh James is dedicated to achieving the best possible

137 Index to advertisers Index to advertisers Advertiser Page Advertiser Page AKA Case Management 65 Anthony Gold Solicitors 110 Balfour & Manson LLP 134 Barchester Healthcare 14 Barlow Robbins LLP 133 Bolt Burdon Kemp 71 Guardian Care 26 Homerton RNRU 21 Hugh James 134 ILG Ltd 55 Irwin Mitchell 60 JE Bennett Law 67 Brain Injury Group inside front cover Kings Lodge 31 British Psychological Society 93 BTMK Solicitors LLP 22 Bupa Care Homes 74 Christchurch Court 26 Complete Group 65 Consensa Care Group Ltd 65 Hannahs 36 EAD Solicitors 36 Easy Care Products Ltd 98 Enable Care 37 Glenside Manor Healthcare Services 37 Krysalis Consultancy 132 Leigh Day & Co. 134 Leo Abse & Cohen 133 Leonard Cheshire Disability 20 Lifeways Community Care Ltd 80 Marantomark 6 Millgate Woodbridge Ltd 108 Neil Hudgell Solicitors 44 Neuropsychologists UK 107 Northern Case Management 35 Oakleaf Group 62 The Brain Injury Handbook 135

138 Index to advertisers Advertiser Page Advertiser Page PJ Care Ltd 37 Potter Rees Serious Injury Solicitors LLP 69 Prestige Nursing Ltd 87 Prokare Ltd 49 Queen Alexandra Hospital Home 60 The East Midlands Centre for Neurobehavioural Rehabilitation 75 Thompsons Solicitors 5 Thorneycroft Solicitors 84 Tinsdills Solicitors 54 Queen Elizabeth Foundation 77 Tracscare back cover Select Healthcare (Jubilee Court) 45 Shepherd Harris & Co. 20 Slater & Gordon (UK) LLP 76 St Andrew s Healthcare 54 Sussex Healthcare 99 SweetTree Home Care Services 6 Sydney Mitchell Solicitors 31 Team Brain Injury Support 8 UK Case Management Ltd 84 VP Forensic Ltd 77 Voyage 11 Walker Smith Way Solicitors 36 Wellington Hospital Rehabilitation Unit 92 Whickham Villa 6 Withy King 73 Wolferstans 44 Tees Solicitors 55 The Children s Trust 31 &

139 Notes Notes The Brain Injury Handbook 137

140 Our Commitment : To provide successful outcomes for individuals We are committed to providing successful outcomes for adults who may challenge existing service provision. With over 25 years experience of supporting vulnerable adults with the challenging or complex needs associated with an acquired brain injury, we are committed to providing successful outcomes for adults through person-centred care packages and experienced staff support. All clients who come into our care undergo a comprehensive assessment of their acquired brain injury, to establish the cognitive impairment that they are experiencing, and are given support by a fully trained staff team as well as a care plan tailored to their individual needs. We can provide individuals with appropriate levels of support at each stage of their rehabilitation or level of independence, which may include residential care, semi-independent living or supported living. For more information on our support for adults with an acquired brain injury, please call us on or visit